"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Friday, December 28, 2007


Connie's nurse came to the house this morning weigh him and he finally broke the 21 lb mark! His weight today was 21 lbs. 5.5 oz. That's a 9 oz. gain in one week! He had been up to 21 and then lost and stayed between 20 lbs. 7 oz and 20 lbs. 15 oz for over a month but finally he's gaining again. I guess either he ate a few too many Christmas cookies or maybe I did and my milk was higher calories than normal (ha ha)! Yesterday the OT was so impressed to hear that he loved whip cream and even took it eagerly from a spoon as well as fed himself (put to his mouth and tasted) some orange jello salad, cranberry salad and potato casserole. He performed his whip cream tasting for her during her visit. She tried to expand his palatte (sp?) by offering him some sour tastes. We started with pickle juice and he responded by vomiting so much that it even came out his nose. Poor fellow. He had been doing so well and apparently was not in the mood for sour tastes. Maybe someday!

He continues to get stronger physically and has totally mastered sitting without support. He was reintroduced last Friday to the exersaucer and has been tolerating increasingly longer periods in it ever since. I think yesterday he was in for about an hour just rocking, bouncing and watching his sisters bounce on their new trampoline. When you are holding him he loves to bounce (we call it dancing) or rock. His new trick, one in which he was perfecting last night from 10:30-12, is where he makes himself free-fall backwards and you catch him and help him pull back up only to do it again over and over. He laughs hysterically the entire time. I can't wait for someone to take a video of him doing it. That game shows me that he is gaining trunk strength bigtime.

The dietician, Jenni, came today and we set the goal to increase him another 10mL per bolus feed in a month if he continues to tolerate the 160 feeds. If that happens, we can start backing down on his overnight feeds with the hope that eventually he will be like a "normal" kid and just eat during awake times. This would also allow him to be hungrier during the day and have more motivation to eat orally.

As you can see, we've been busy learning, relearning and loving this year. We hope that 2008 brings about continued improvement and more miracles of recovery for Connie and we pray that you all find the new year to be full of hope and health as well.

Tuesday, December 25, 2007

Merry Christmas!

We've had a busy time these last few days, but then, who hasn't? Connie has been to four Christmas parties (three have been family parties) and has done so well adjusting to being out of the house and held by others. I feared that being with me so much he'd be particularly strange around new faces but that hasn't been the case at all. He loves smiling at all the extended family. Starting on evening of the 21st, he began throwing up again and by yesterday he was throwing up all feeds except the continuous overnight. He threw up his tube on the way to Christmas Eve and I had to pull over and replace it on Hwy 270! So much for that Christmas outfit. When we got to Terri's he had to put his pj's on and we didn't get to show off his pretty clothes:( Then Mookie spilled her drink on her dress and was cold and wet, I spilled Connie's milk before pouring it in his pump and then about half way through he started fussing like crazy. We called it a night before 8pm! Mary Kathleen won't walk anywhere on her own anymore (perhaps jealousy that he gets carried) so that made for a lot of fun. Then on the way home he threw up again. That's when I started crying. I told God I wanted Connie to get a break from the throwing up and that it was Christmas. I just cried and cried all the way home last night begging God to make it better. Do you know that Connie didn't throw up at all today? I guess God heard me. Hope so.

Anyway, thank you all for your support and prayers and cards this year, especially at Christmas. What a year it has been! Today is a good reminder that while we have a long road ahead, we need to stop to celebrate. Celebrate our Lord's birth and celebrate the gift we've been given this year in Connie.

Friday, December 21, 2007

Wednesday, December 19, 2007

Vomiting/GI Update

Conway is currently receiving his feeds over one hour. We had to slow down the rate a couple of weeks ago because the vomiting increased again. This has helped, but it seems, as usual, that it slowly creeps back in. Now we are waiting until he is upright for awhile and gets several good, productive coughs before we start a feed. Getting rid of the mucous first seems to help.

Dr. Brady (GI doc) called yesterday to say she got the swallow study results and discuss a plan. I told her that we ran out of formula during the snow and he seemed to keep his feeds down better so she gave us permission to stop fortifying for a couple of weeks up to a month and time, his weight, and his vomiting will tell if it indeed helps since he seems to wax and wane on the vomiting anyway. He has good weeks and bad weeks so hopefully it isn't just a good week and it actually is a step toward less vomiting.
She is still hesitant (thankfully) to proceed with previously discussed surgical options. She is just so pleased with his neuro, physical and cardiac progress that she hates to interrupt that with an invasive procedure and recovery. She isn't even sure that the surgeons would be able to move the pacemaker AND place the g-tube all in the same surgery. What a bummer that would be-to have the pacemaker moved and then have to go back to have the g-tube at a later date! She reiterated that the g-tube is not going to fix the reflux. It would cut down on the irritation that the tube causes and maybe make it more pleasant to swallow/eat orally. She just is very reluctant to put him under anesthesia for three hours (the tube is only a ten minute procedure, but the pacemaker moving is a different story). When asked about the fundoplication she said she really doesn't see that in his future, but she'll talk more with Dr. Bromberg and we'll talk again in a few weeks.

Connie has been working hard on oral practice. We were given the all clear to introduce more solids so we were thinning stage one baby foods with fruit juices or breast milk and giving to him via syringe. He generally takes about 6-9 mL of solids at each session where we try this (usually about 2X per day). At regular mealtimes, if he is awake, he is offered a variety of textures and finger foods and will put them up to his mouth to taste but does not ingest them. Lately he has shown a preference for liquids, especially warm milk. It is a real chore to get the thicker stuff into him, but he has been eagerly going after the syringe when it has breast milk in it. Today he excitedly "drank" (and I use that term loosely) 22.5 mL of milk out of a combination of three methods of feeding. We started with the syringe and then advanced to the medicine cup pacifier after I noticed he was trying to chew/suck on it. He can't control how much he gets with the syringe so with the paci he can bite/chew/suck and get rewarded with some liquid. I then tried the take and toss kind of sippy cups with a lid. These lids prevent major spills and slow down intake, but don't have to be sucked hard on like the no-spill playtex kind of cups. He went back and forth between the paci and the cup, playing with one while drinking out of the other. All in all, when he was done, he had taken 22.5 mL. This is a first! Granted, he didn't swallow near that much. His oral motor control is not good enough to have a very organized swallow so much of it dribbled out. The most exciting thing about this is his WILLINGNESS to participate in eating! Please continue to pray for progress in this area. It would be wonderful if he was able to mow down (or at least tolerate) on chocolate birthday cake by the time he turns one!

Monday, December 17, 2007

Cardiology Update and More!

Connie had an appt. at 11 am today with Dr. Bromberg. I was a little anxious over the weekend about what I might hear, but didn't think too much about it. As soon as I turned the stroller around so that Connie was facing Colleen, the nurse, my fears were relieved. She and the other nurse were falling over themselves commenting on how good he looked and how good his color was (his color has never really been an issue though, like most heart kids) and how big he was, etc., etc. They even remarked at his crazy hair. His weight today was 20 lbs. 11.6 oz. Down a bit. Funny, they all think he looks so much bigger and yet his weight hasn't gone up the last month. Dr. Bromberg even said that this is the first time he's seen him look "like a normal baby" and not "so skinny". His length is 31.5 inches, which is taller than before. I think just last week at his well baby visit he was 30 inches.

Then they asked me a bunch of questions about his endurance, sweating, breathing, etc. Colleen listened to his chest and took his blood pressure which was "perfect". Then they checked his pacemaker with four little electrodes on his chest which he tried to pull off constantly. He started out a little quiet and shy and quickly turned into a normal, curious 9 month old. He wanted to investigate everyone and everything in the office. When Dr. Bromberg came in and was standing next to him while he looked over the pacemaker stuff, Connie wanted his watch and ID badge. Dr. Bromberg said he couldn't see why anyone would call him developmentally delayed other than the fact that he's not crawling yet. He was so pleased with everything. He took him off the Spironolactone (potassium sparing diuretic) and decreased his lasix (other diuretic) in half. He said that at the next visit, he may come off the lasix altogether! Even though his bp is perfect, he is increasing his Enalapril (bp decreaser) from 1 ML, 2X/day to 1.5 ML 2X/day. This is in hopes that it will help the heart to pump a little stronger so that the leak is decreased and less blood regurgitates back down. We don't have to go back for three more months!

In related news, we got to talking about his GI issues and I asked him about the possibility that Connie's problems stem from a vagus nerve injury during surgery. He nodded like he had thought of that too. He said what makes him think that that isn't the case is that usually patients will also have a paralyzed diaphragm and/or paralyzed vocal cord. I asked what possible treatments there were if that were the case and he said that nothing could really be done, that it usually spontaneously heals on it's own. He said he was pessimistic about that for Connie because it would have likely healed by now. His personal, "layperson" opinion is that a fundoplicaton and g-tube are in order here. I guess we shall see. Today I'm just reveling in the glory and the light of this wonderful blessing we've been given in having such a good appointment. Praise God!

However (dramatic pause), there is never a dull moment around here and never a positive note that isn't drowned out by a negative one. Early Sunday morning, Mary Kathleen fell out of bed and complained that she hurt her shoulder. Her behavior was not right and she didn't "get over it" quickly at all. I called the doctor's exchange and they recommended we follow up with our ped. today. We did and he suspected a broken collarbone. He said it is easy to fracture and fairly common in kids. He sent us downstairs to an orthopaedic doctor where she had her first (hopefully last) x-ray. She did very good and was so brave for all of it. She surprises everyone that she isn't afraid of procedures or shots or whatever. The x-ray showed that her collarbone is indeed broken. The doctor said that children this age heal very quickly (2-3 weeks). The remedy for this type of injury is limited to wearing a sling. So, her right arm is in a cute little dinosaur sling. She doesn't like it one bit and has reminded me of that fact several times in the past couple of hours. She is to wear the sling until she appears to be using it a lot more and her activity level is to be dictated by her. The only limit is that she is to stay off the monkey bars and avoid climbing. She has no interest in that right now anyway with the pain she's experiencing so that shouldn't be a problem. She is allowed to have motrin every six hours if necessary. She looks like such a big girl with her sling. I think I was that age when I had my first broken bone. I only hope she doesn't have as many as I had! We go back for a follow-up x-ray in three weeks.

So, $100 in copays, three office visits at two different hospitals and six hours later, we are home and staying put. Just when I complain about not getting out of the house because of being homebound with Connie for the winter cold and flu season, I get to spend all day driving around with them! Woo hoo!

Saturday, December 15, 2007

Snow Day!

Well, we are getting some considerable snow for the first time this winter. I'm still undecided about Connie getting to experience it. For one, his temp runs pretty cold anyway (not usually any higher than 95 or 96 degrees) and I'm afraid he'd get too cold out there. The other is that we don't have proper snow apparel for him and I don't want him wet. If we get brave enough, we may dress them all and get him out there with the girls just long enough for a pic. Honestly, the thought of staying in our pajamas and watching movies and playing downstairs sounds much better to Mom! We do have to venture out at some point today. Greg went to the grocery store last night late (along with the rest of the town!) but I forgot to pick up two prescriptions for Connie before Walgreens closed. They say there's supposed to be a break in the snow later today so we'll try then. Have fun and be safe!

Thursday, December 13, 2007

Swallow Study Results

Well, Dr. Brady hasn't reviewed the results yet, but Renee, the speech path, went over the test with me after it was over. I'll get to that in a second. First I'll tell you what happened. We got there with our little "bag of tricks" and sat him in a chair up high off the floor. The x-ray table was flipped upright and was on his right and on his left was the x-ray machine. Renee handed me various things to try to get him to eat/drink. We started with a sippy cup which he readily opened wide for (to my surprise). He allowed it in his mouth and seemed happy about it until I squeezed a little bit of barium mixed with apple juice in his mouth. You should have seen the face! We tried giving him the barium mixed in all sorts of things including purees and milk. We tried it with a spoon, syringe, cup, etc. He preferred the syringe, but only tolerated it a couple of times. We were able to get seven good swallows, enough for the test! I was so proud that we were even able to do it. I thought he'd be tight lipped the whole time and not take anything. He didn't cough and gag and go crazy either. It was so good. 45 minutes was his max and we decided we got enough at that point. It only took three people and 45 minutes for 7 swallows, but it was worth it! The test showed that he is NOT aspirating (swallowing the food/liquid into his airway). Based on this, it is safe for him to eat. We are allowed to advance with feeding and drinking during therapy and when we work with him at home. What it doesn't tell us is why he doesn't want to eat or swallow. We don't know if it is a behavioral, learned thing, if it is related to reflux (she mentioned secondary aspiration as a possiblility) or what it could be. We've ruled out aspirating though so hopefully once Dr. Brady gets the info she will get with us on the next step, whether it be more studies or what. Basically, it was the best news we could hope for. If he was aspirating, I don't know what we would have done, but I know what we couldn't do and that is try to put food/drink in his mouth! My mom said tonight that she just had this funny feeling that came over her that today was the beginning of healing for him (as far as the vomiting goes). Boy, I hope she's right!

Wednesday, December 12, 2007

Conway Can. . .

I got to thinking tonight about how easy it is to focus on all that is wrong with Connie, what Connie can't do, doesn't do yet but should, won't do or shouldn't do. So that got me thinking about what all he can do. Here are just a few things that come to mind:

Smile, laugh, melt your heart by cocking his head to the side and rolling his eyes up at you, splash his sister in the bathtub, drop his cookie on purpose to watch mom and dad repeatedly pick it back up for him, find the trunk (by himself) on his "blue bunny elephant" lovey and chew on it until he falls to sleep on his own, find a way to roll completely off the blanket he was laying on before throwing up, show his affection for toys, pets and people by banging on them, chew on his toes, chew on his upper lip making this cute, underbite look on his face, become completely enamored by music on the Today Show's Concert Series, grab your nose/face/beard/glasses with gusto, mimic a fake laugh, wait patiently for feeding/changing/cleaning while Mommy takes MK to the bathroom all day long for potty training, make getting up in the middle of the night to clean up puke a rewarding experience, reach for us when he wants to be held, rub the top of his head, cover his face with cloth diapers and blankets when sleeping (just like Daddy), get excited when he sees Sissy or when visitors/therapists come over, reach out to try to pet the dog, knock ornaments off the tree with his feet, talk/sing himself to sleep, mimic facial movements while watching us eat (just as a cruel joke--he's leading us on!), recognize extended family members, poke you in the eye with his thumb and show no remorse, calm down (some call it "recover quickly") after getting upset or sick, watch you when you aren't looking, intensely study the tag on a blanket, doesn't get scared when you place a dancing, singing FrankenPig on his chest, help put his arms through the sleeve of a shirt now, bite your finger hard enough until you scream in pain, bang on the back of his other hand when he gets bored and can't reach a toy, kick the wipes container off the changing table, give cues as to when he's going to be sick so that we can prepare, thus having an easier clean-up. . .

Well, that's a start at least. Greg and I hope that this list helps you to see a little glimpse into his personality and how much joy he has brought to our home and family.

Monday, December 10, 2007

It's been a while. . .

I thought I posted an update last night but I may have forgotten to "publish post". Basically I was just writing to tell everyone that even though Friday and Saturday had considerable vomiting, both Sunday and today he only threw up about 1/2 of his first feed of the day and kept everything else the rest of the day and overnight down. I hesitate to post this wonderful news because as Murphy's Law would have it, every time I do, within minutes he pukes up his tube and all! Knock on some wood tonight that he'll stay asleep and that this trend of proving me wrong will end.

Speaking of sleep, he's developing some bad habits. He's going down around 7 or so and then waking up at 9 or 10pm and wanting to be up for an hour or so. Then he sleeps in so late in the morning. This needs to stop because Mommy needs her time in the evenings and because he has PT early on Friday mornings so he can't sleep in! Today he slept until 9:30! He ended up only taking one nap but it was about 4 hours long. Weird. Just when you get them figured out they change! I've been letting him sleep instead of feeding him his first feed at 7 while he's asleep. It wakes him up since it makes him vomit. I figured he's been doing better (less vomiting) if he's up for a few minutes and can get some good coughs before the feed starts. He seems to only throw up the first half as opposed to the whole thing if I feed him before/just when he wakes. Then only problem with waiting till he's up is that it's hard to get in 4 feeds before having to turn the pump on continuous at 10pm. I want him to get enough ML's throughout the day and to do so he needs to get that first feed early enough. Today I let him sleep but spaced the feeds every three to three and a half hours and I was able to get in four feeds and still give him a break for an hour before turning it on for the night. I'm sure this makes little sense and I apologize for boring you, but it's related to Connie so there you go. This website is all things Connie afterall!

There are a couple of new pics on the right side of the page. Enjoy!

Thursday, December 6, 2007

Letter to Connie's OT

Tonight while in the bath, Connie played more than ever. Splashing and laughing and guess what else? He desperately grabbed at the cup we use to rinse his hair and drank out of it. That's right, he won't eat or drink anything nourishing, but he'll drink bathwater! I told Greg and he laughed and joked that he didn't care if he drank gasoline. It was still progress. I saw two really good swallows and that was after he accidentally got a mouthful and coughed a lot--he still wanted more. I got some of those wagon wheel finger foods and he's been playing with those and the puffs but his favorite is a strawberry nutrigrain bar that he gets all gooey and stuck to his fingers and then mouths all during mealtimes. Tonight he had some cheerios that stuck but I don't think he actually got those into his mouth. The motor control is difficult for him but I don't dare try to do it for him. He doesn't even want to take it out of my hand if he drops it (seems scared) and he wants to find it himself again. I'm tempted to get some milk the next time he takes a bath and see if he'll drink it out of the same cup. Can you believe he will drink the bathwater? He has been making hungry noises with his mouth more today. I'm sure it is because he has barely thrown up. He threw up a small amount after his 7am feeding, a medium amount after his 11am feeding and nothing since (it's now 9pm and two feedings later).

Anyway, I just wanted to pass on the good news and couldn't wait until next Tuesday! I was going to give you trouble and tell you that in the "race" between you and Deb, she was winning because he is making remarkable progress physically. Apparently, though, he likes you and wants to impress you and didn't want me to tell you that and hurt your feelings!

Erin Beckemeier

Tuesday, December 4, 2007

Update on Mary Kathleen

Dr. Sanchez says that it is possible that the hair follicles are just irritated. She did say that the bumps do resemble warts but since she has no other warts anywhere, that's not as likely. We are going to treat it for now with some medicated shampoo a couple of times per week and daily application of a topical ointment. If it goes away we can stop the treatment. If it is still there in two months they will do a biopsy :( If it changes more before then we will go back in. So, we are rejoicing for now that she doesn't think it is cancer or anything at this time!!

I hesitated to update on Connie yesterday because I was afraid I would jinx it. He went from Sunday afternoon until the early morning hours on Tuesday with NO THROWING UP! Of course he's thrown up four times today, but compared to last week today was even fabulous! I know it is because of everyone's prayers. Please keep them coming.

He got three shots today and had his checkup. Dr. Davis was pretty pleased. We like going there because everyone thinks he looks so big and so great. They aren't analyzing every ounce! He was 30 inches (90th percentile), 21 lbs. even (just over the 50th percentile) and 45.5 for head circumference (50th percentile). On his check out sheet he wrote for the diagnoses: Healthy, Heart Disease, GERD, Developmental Delay. It was hard to see the last diagnosis in writing. I know there is a reason for it and it won't be forever, but it was still kind of humbling.

Greg had a fabulous idea tonight. Lately Connie has been going to bed by seven at the latest but is waking up around 9 and wanting not going right back to sleep. To get him back to sleep on his own we've been putting the vibrator they gave us at the hospital in bed with him and it is enough to lull him to sleep. It goes through two batteries a night and sometimes doesn't even last the whole night. So, Greg got a chair massager that we had lying around the house and plugged it in and put it under the mattress. Now the whole bed vibrates and it's not eating batteries! Isn't he a genius?

Tomorrow he'll get weighed by the home health nurse so I'm anxious to see on the same scale we usually use how he compares.

Monday, December 3, 2007

Okay, Redirect for a minute

I know this website is titled, Care 4 Conway, but his sister, Mary Kathleen (aka Mookie), needs a couple of prayers said for her too. That pesky birthmark that they call a congenital nevus is changing. We had that scare this past summer about it when they held a dermatology conference to get all those second opinions on it. At that time it was decided that the risk to biopsy the mole at this time (and putting her under general anesthesia) would be greater than the risk of the mole being cancerous. We were told to watch it and come back in a year if nothing changed, to call before then if something did. Well, it's changing. It's not growing larger (I don't think anyway) but it is getting these raised bumps on it. One is larger and looks like a wart. The others are tiny little bumps under the skin to the left of the big bump. It was always smooth before and not raised. So, I called and we are going in tomorrow afternoon to the dermatologist. We are praying that some type of scan can be done before any invasive testing/biopsy/surgery is required. I'll update after we hear something. Thanks for the additional prayers. Geesh, I feel like a prayer hog.

Sunday, December 2, 2007

This Week In Review-Looking Ahead

Well, for the past week or so, we've seen quite an increase in vomiting. For awhile he vomited the morning feeds but held down the afternoon/evening/overnight feeds. Then he started only holding down feeds while he was asleep and now he even wakes during a feed and throws up or throws up three hours later when the food ought to be digested. He has lost some more weight, down from 20 lbs. 15 oz to 20 lbs. 8 oz. He's not dehydrated so far, but the poor kid is hungry before his next feeding is due and I guess that's because he's thrown up everything in his tummy. Early in the week we talked to the doctor who said she'd try to move up the swallow study. Then we talked to the OT at Child Development and told her how we've gone backwards in his tolerance of oral stimulation. She said that we'd be lucky if he was even able to get the study done on the 13th at this rate.

He has thrown up his tube several times and we gave going tubeless a good, honest effort. We gave him time and lots of textures and modes of feeding and he was unwilling to attempt any of them. It was obvious to us that, as much as we'd like him to be, he's just not ready to "just take the tube away and when he gets hungry enough he'll eat."

We've not gotten much practice in with oral stim this week because he's been so miserable with all the vomiting. Each time it's a whole process to change him, wash him down and get him dressed again, only to have him puke all over the clean set up once we finish! He's basically been sitting in the high chair while we eat and playing with food. We put food, utensils and water or juice in a sippy or bottle on his tray and let him experiment but he doesn't usually do much. When he does we make a big deal out of it. His pincer grasp is coming along nicely though! This is progress.

When the PT came this Friday (her second visit so far) she remarked that he already is getting stronger. Noticeable improvement in only a week is fabulous! When he's sitting, he's pretty good about going to the sides and forward but he has a hard time coming back up once he starts falling backward. His abs are starting to strengthen enough to where he's beginning to self-correct when this happens. We are very proud. He loved bouncing on the therapy ball.

This upcoming week is another busy one for him. He goes to the pediatrician for a 9 month (yes, he's 9 mos. already!) well baby checkup and vaccinations on Tuesday. Then he has OT at 11:30 on Tues. and PT on Friday at 8am.

He is so happy other than when he is throwing up. Please continue to storm heaven with your prayers for God to heal him fully--both his heart and his tummy.

Thursday, November 29, 2007

Renewed Hope!

First, there are a couple of new pics to the right. I report tonight some good news and a renewed sense of hope. I was doing "homework" with him and he took some watered down baby food through a syringe. When I say some, I mean about a total of 6-8 mL. He had some great swallows and with a thicker but not too thick substance, he didn't drool out so much. He didn't gag once! Then for his feeding I gave him the rest of the thinned baby food through his tube because I've heard that some kid's reflux gets better when they have some more solid food on their tummy to weigh it all down. Granted, it wasn't true solids because it had to be thin enough for the tube, but it was thicker than the normal milk he gets so that's good. Then I used some rice cereal to thicken his milk and put that through the NG also. He gagged a couple of times but nothing came up!! I'm so excited. I didn't use the pump, because I was afraid it would clog, so it was pretty time consuming to give him syringe-ful after syringe-ful over about 30 minutes--but it was worth it if it helps him keep it down. If he does well again at his next feeding I will call the doctor tomorrow and see if his feeds need to be adjusted because of adding solids. Just pray that he digests it fine.

Wednesday, November 28, 2007

Small Miracles

Sometimes in the midst of the daily grind, it is easy to overlook the everyday miracles. At least for me it is. Yesterday we got good news and bad news. One prayer answered and another one that God's timing just isn't ready to take care of yet. Dr. Tychsen's office called and said that Connie's eye testing last week showed his eyes are working "pretty well together" and he doesn't want to do anything further at this time. This is fabulous news. God has spared Conway's sight and we are so thankful. When we go back in May they will hopefully be able to do some additional diagnostic testing. They mentioned measuring the muscles or something like that. The older the child gets, the more they are able to tell. We still are asking for prayers that he will not require glasses at that time.

Dr. Brady called back. She said that if Connie were to get the surgical G-Tube that his pacemaker will have to be moved to the other side--yikes! So much for a 24 hour hospital stay on that one. She is going to talk to Child Development to see if we can't move up the Swallow Study since he is going backward and getting more averse to oral stimulation. Once we find out if it is safe for him to eat, we may try to pull the tube completely and see how he does. The downside is that we only get 24 hours to give him a trial run. If he doesn't eat enough, we'd have to put the tube back in. I asked about the super high calorie fortifier and she said, "No". She said that with the meds he is on he needs more "free water" and that 4.5 oz of liquid wouldn't be enough. Doubtful he'd be able to drink 20-30+ oz in a day. Right now he can't even swallow 1/15 of an ounce. She did say that we could let him go without the tube all day and then drop the tube every night and give him most of his calories overnight. We are continuing to pray for a miracle that he will be able take enough orally during the swallow study and continue to improve dramatically so as to actually be nourished by what he takes orally.

Monday, November 26, 2007

Praying for a Miracle

Since the middle of last week, Connie seems to be throwing up more. Basically every time he is due for a feeding and he's not sleeping, he throws up and now he's even waking up to throw up some of them. I put a call into the GI doctor but haven't heard anything back yet.

The dietician from First Steps came out today and we discussed this recent development and I shared my concern that he seems to be going backwards a bit as far as the oral aversion is concerned. He is less interested in doing oral practice and is back to shaking his head "no" most of the time I offer. Child Development warned that he may be getting to the point where he will associate even sitting in the high chair with throwing up and gagging and not want to be there. Long story short, I'm going to ask the doctor if there is a point where we can pull the NG out and try to get him to take something orally. The problem is that it is unlikely he will take enough to sustain him, let alone make him grow. There are products to thicken liquids (for those with swallowing disorders) and those that add a large amount of calories. One such product contains 330 calories in just 1.5 oz. of liquid. If we could just get him to drink about 3 a day (a total of 4.5 oz.) we'd be great. Then there's still the problem of getting him to take his meds orally. Who knows. I just know that I'd like to avoid the G-tube surgery at all cost but he needs to lose this NG tube ASAP. The fact that he's puking before a feeding is even all the way in (sometimes before it is even 1/2 way in) leads us to believe it is not an intolerance problem but a gagging one. All this blabber leads me to what I really wanted to post about. Tonight at our parish mission, the visiting priest passed out prayer cards with the Vincentian Mission Prayer written by St. John Gabriel Perboyre, C.M. He told about how so many miracles have been reported from those who prayed this prayer daily. Greg and I are going to start praying this prayer daily for healing for Conway that he will stop this vomiting and relearn to eat. We would like those that are so inclined to do the same. The best part of the prayer is that nowhere in it does it ask for a miracle. I think you'll love it. Here goes:
Divine Savior, transform me into Yourself.
May my hands be Your hands.
May my tongue be Your tongue.
Grant that every faculty of my body
may serve only to glorify You.
Above all, transform my soul
and all its powers,
that my memory, my will and
my affections, may be the memory,
the will and the affections of You.
I pray You to destroy in me,
all that is not of You.
Grant that I may live but in You,
and by You, and for You,
and that I may truly say with St. Paul,
"I live now, not I, but Christ lives in me."

Friday, November 23, 2007


Conway's big, post-surgery debut was on Thanksgiving. It was basically the first time out other than to doctors appts. We packed lots of clothes and washcloths and two pies and headed out the door around 1pm. We got home a little before 9pm. He threw up all but one of the feedings he had while we were gone (frown). The worst was in the car on the way home. That time he threw up the tube out his mouth so we had to pull it out the rest of the way and get the tape off. Tearing the tape off is the most painful for him and at home we soak the tape in water to get it off easier. Couldn't do that in the middle of the backseat so we just pulled it quickly and applied pressure afterward. He soaked his outfit and carseat! He enjoyed seeing everyone and watching the commotion of it all.

His vomiting seems to be increasing again. It is almost like unless he is asleep and still the whole time he's fed and afterward he will throw up and throw up a lot. With him eating every three hours it is hard to do his therapies and practice and not have it induce vomiting. I have to try to do his oral practice at a time where he hasn't been fed within the last hour or so and isn't being fed because he usually gags during it. Same with physical therapy work. It's hard to do tummy time or any other movements of any kind anytime close to a feeding because he throws up. That would all be fine except that then you have to take into account the fact that he takes two long naps every day. So finding a time when he's awake and not hungry but not full is hard. I may try calling the doctor Monday to see if we can give him 150mL every 4 hours or so and that way he still gets the same total amount each day, just an ounce more at each feeding, but less feedings (probably doesn't make sense how I'm explaining it--I'm tired and it's late!). We'll see what she says, but at least that would give us more of a window to work with him at a "not-so-volatile" time.

Thursday, November 22, 2007

Happy Thanksgiving!

Psalm 100

Make a joyful noise to the Lord, all the lands!
Serve the Lord with gladness! Come into God's presence with singing!
Know that the Lord is God! It is he that made us, and we are his;
we are his people, and the sheep of his pasture.
Enter his gates with thanksgiving, and his courts with praise!
Give thanks to him, bless his name!
For the Lord is good;
his steadfast love endures for ever,
and his faithfulness to all generations.

Wednesday, November 21, 2007

Eye Testing Over

Connie had the "spatial sweep" test done today. He looked at outlines of several objects and tracked the objects up and down. The outlines got gradually thinner. Then he went into a dark room and right before the next test began he threw up his entire feeding. Carpet and all! In that room he looked at a screen as the administrator held little characters up to keep his focus. The screen had stripes that got progressively smaller. He wore little electrodes on his scalp during this test. It took less time than we anticipated because he was able to stay focused and look for as long as she wanted him to. He didn't keep pulling off the electrodes or eye patches. Basically, he was rewarded for his cooperativeness by getting out of there early! The trip wasn't without excitement though. On the way home, a car that was about four cars ahead of us spun out on the on ramp causing everyone to slam on their brakes. That landed us half in the ditch. Luckily, we were able to back right out and no one was injured and no property damaged! That's even one more thing to be thankful for this holiday.

Tuesday, November 20, 2007

The Latest on the Oral Motor Front

We got back from Child Development where Connie once again showed off his progressing oral motor skills. He was able to take about 15ml of cold, apple juice flavored water from the syringe with a preemie nipple on the end. He never sucked the nipple, but would chew it a bit. He swallowed well and didn't keep it all in the back of his throat. Toward the end of 15 minutes, he had a big cough but was able to cough and didn't throw up. We moved on to some applesauce mixed in baby cereal. We just dipped the spoon in the cereal and rubbed it on his lips. He wanted to be the one to move it into his mouth. He did a couple of swallows and was receptive to the texture, but tired of the whole process so we stopped. We have an appointment to do the "swallow study" at St. John's on December 13. They will have him swallow some barium and take an x-ray to see where it's going to make sure he is not aspirating it. That is really the next step before we can move forward with increasing the feedings. At that time, we will know if it will be a matter of weeks or months before he is able to tolerate taking more food. If it looks like it will be months, the g-tube talks will resume, meaning that will likely be the course of action. If it looks like he may be eating a good deal orally by mid-January maybe, then we will just leave the NG tube.

Monday, November 19, 2007

Back from the Eye Doctor

Well, we left for Children's a little after 9am and once again didn't return until several hours later. We spent a whole 4 minutes with the opthamologist but the trip was over four hours! Connie and Mary Kathleen were great though. First we waited and waited to see him and when they finally called us back at 10:55 for a 10:10 appt. I was disappointed when it wasn't even a real MD or our doctor that saw us. He asked some questions and did some tests getting Connie to track toys and then he put drops in his eyes to dilate them and told us to go walk around and come back in 25 minutes. We did but they didn't see us 25 minutes later. We waited about an hour and 25 minutes and then got to see the doctor. He told us we have "great reason to celebrate" and that we "dodged a bullet" with Connie's seizure and that he has one more test he'd like to do to make sure, but he thinks Conway's eyes are not permanently damaged from the seizure/surgery. He said the only concern he has now is that Connie is "excessively farsighted for his age", meaning he works very hard to see things close up and that he wants to follow this. We see him again for a follow-up appt in mid May so he'll determine then if he needs glasses. I sure hope not. He did say that this was not related whatsoever to the cardiac condition, that it just runs in families. I am shocked because neither Greg nor I wear glasses. He seemed a little surprised that our other kids don't wear them given how farsighted Connie seems to be. Kinda makes me want to take them all in to be checked.
Bottom line is that it was a great day. Another reminder of all we have to be thankful for. We go back Wednesday for the big hour and forty five minute test that will give him an even better insight into whether or not there is anything wrong.
OT comes at 4:30 today and tomorrow is an appt. with Child Development speech path and OT to work on Oral Motor Skills at 11. Thanks for looking in.

Sunday, November 18, 2007

Murphy's Law

I should know better. Just as soon as I post that things have gotten better in the GI department, they get worse. He had a horrible night and was up until after 3am with reflux pain (I guess). He finally threw up a medium sized (we label it small, medium or big) amount and went to sleep. He slept pretty well until after 9am. This is unusual for him as he is normally up around 6 or 6:30. He threw up so much this morning that he clogged his tube with throw up and phlegm and we had to put in a new tube.

We have a busy week ahead with appointments. He's going to the opthamalogist tomorrow down at Children's and the OT comes tomorrow afternoon. Tuesday he has PT and the dietician is coming. I'm not sure yet when the home health nurse is coming. After the Thanksgiving holiday he'll start having OT on Tuesdays at 11:30 and PT on Fridays at 8am.

Saturday, November 17, 2007

Much Improved

The vomiting has decreased significantly since Thursday evening. He did super well holding down his bolus feeds yesterday and only had a tiny amount of spit (more like phlegmy drool) that came up with each one. He woke up just before he was to go on the pump last night but we're not sure if it was reflux or if he was just hungry. He seemed fine once Mommy picked him up. He slept all night long and woke up around 6:00 am. He had his morning vomit (which was actually smaller than it had been the last several days) and spent the morning playing with his sisters and then went down for a nap. He got his 10am bolus feed and held it down and is still sleeping.

Have a great weekend!

Friday, November 16, 2007

Back on the Pump

Talked to Dr. Brady this afternoon and we came to the conclusion that maybe going straight to 7 bolus feeds from 3 may have been too fast of a change for Connie. He's back to normal wetting and stooling and has kept down his 10am and 1pm bolus feeds minus a little, tiny, phlegmy spit. The new plan is to give him bolus feeds at 10a, 1p, 4p and 7p and then turn the pump on continuous at 10pm until 6am. I did the calculations again and it seems that he went from 1140 mL per day down to 700 mL per day for intake when we switched him over. That is considerable and when the vomiting increased, it's no wonder why he lost weight. Now he'll be getting 960 mL per day. Hopefully he handles it well.

Connie was receptive to some new oral motor stimulation today. Yesterday he loved getting very diluted apple juice mixed with ice water via syringe. He sucked the syringe as I slowly emptied it into his mouth. He was heard swallowing and didn't cough or choke or gag at all (until the end when he spit it all up). He did this for a good 20 minutes. Today he did the same with some pear juice in the ice water and wasn't quite as crazy about the flavor. I filled a medicine dispensing pacifier with the juice mixture and dipped it into the juice and offered it to him. He sucked a little (just the tip--didn't put it all the way in his mouth), but was very eager to do it himself--which he couldn't. I then poured some of the juice mixture into a take and toss sippy cup and gave him some sips. He took four sips/swallows and then lost interest. Tomorrow I'm going to try it with the apple and see if he likes that better. It's amazing ! By this time next week he may be drinking more like 1/2 ounce or so from the cup. We'll see.

Still Waiting

We've called the GI doctor back this morning but haven't heard back from her yet. He received 60mL/hour for 11 hours overnight. He fell asleep about 7pm and didn't wake up until 3:30 with a wet diaper. He went back to sleep until 6:30. Then he woke up wet and very nauseous. He threw up three big times. It came out his nose and everything. Then he took a cat nap after all that work! The pump was turned off at 7:30 and he got a bolus feed at 10am and only threw up a small amount. He just went down for his nap. Will update when we hear back from the doctor.

Thursday, November 15, 2007

Good News/Bad News

First, the good news. Well, great news, actually. All of you wonderful friends and family spent a total of $2730 on food last night at Chevy's. That means that they donated 15%, or $410.06, from those proceeds to Conway's fund. Thanks again for the super turnout!

The not-so-good news is that Conway is leaning toward the dehydrated side of things. His eyes are looking a bit more sunken, he hadn't had any bm's for almost 48 hours and his wet diaper output had backed off considerably. Combined with the vomiting, weight loss and sunken in soft spot, the GI doctor decided that he needed to be put back on continuous feeding overnight. We're pretty bummed, since this is a move in the backward direction, but we don't want him hospitalized for IV fluids! She told us to give him a glycerin suppository, put him back on the pump overnight and call her back in the morning to tell her how he's doing. He's already pooped twice since the suppository was given about an hour ago! I'm wondering if he was throwing up everything because he wasn't digesting well and was like a baby that eats too much and spits up. Maybe all that food not moving created an environment where he couldn't hold more volume down. The thing that makes me think it's not that though is that before he was fed each time we check for tube placement and when we pull the air that we put in back out, any milk that wasn't digested would come up and milk wasn't coming up. Usually that means that he's digested the milk, but in his case it's that he's thrown it all up. Anyway, we'll just wait and see what the doctor says in the morning. He's already in bed for the night and now Mary Kathleen found an egg decorating kit and since it has bunnies on the outside she's decided we need to dye eggs tonight. So, Happy Thanksgiving everyone. We'll bring the colored eggs!

Wednesday, November 14, 2007


Greg and I want to thank everyone who turned out tonight for the Chevy's event! Several people who couldn't make it sent us their love. The staff at Chevy's said they'd never seen a crowd like that for one of their fundraising nights. People who came in said they had trouble finding a parking place and at one point there was a 30 minute wait for a table (and we knew most everyone there!). We lost count somewhere after 130 people! We especially want to thank our dear friend, Carol Stadler, for coming up with the idea and organizing the whole thing. What an amazing blessing to have so much love shown for our family! The best part about it was getting to see so many people who prayed for Connie, the people who cried with us, celebrated with us and continue to keep him at the top of their prayer lists. We know that the baby steps we see every day are the miraculous result of such efforts on your part.
Greg and Erin

ps. pics to follow. I intended to take a bunch but got so busy gabbing with everyone that I didn't get very many!

Chevy's Flyer

In case you don't have the Chevy's flyer and you plan on dining there tonight, you can download it at:

We look forward seeing everyone and God bless!

Conway's dad,

Tonight's the Big Event!

Come celebrate Connie's amazing journey with us tonight at the Chevy's Fresh Mex St. Charles location (you can see it from Hwy 70 near the Zumbehl exit)! A portion of the proceeds will benefit Conway's medical fund to help pay for his RX's, doctor's visit copays and insurance deductibles. One of us will be there the whole time (we'll take turns so that someone can stay home with Connie). We can't wait to see you there!

Brother is still having lots of trouble with the morning feeds. This morning he threw up the entire feeding again. He finally had a bm last night so I know things are finding a way out, it's just that he doesn't keep hardly enough down to leave anything to get rid of.

He and Mary Kathleen were so cute yesterday. Here's a video.
View this montage created at One True Media
Connie adoring Mary Kathleen

Tuesday, November 13, 2007

Now Protected From RSV

Conway has been given his November Synagis vaccination to protect against RSV, a dangerous illness that cardiac children are more succeptible to. Since he is so big, he had to get two shots, one in each thigh. Jen, his nurse, said that this shot burns going in. He cried and didn't like it one bit.

He got weighed and his weight has dropped. She was here on 11/1 and his weight was 21 lbs. 2.5 oz. Today it was 20 lbs, 7 oz. She isn't too concerned since he doesn't seem to be throwing up more than before and she said before we get all alarmed we'll see what he weighs next week. I told her that Dr. Brady has adjusted his feeds and he now receives 200 mL less per day with the new schedule.

This morning there was some blood in his vomit. It was bloody mucuous, mostly brown, but a little pink. It was a small amount. I saved the wash cloth and pajamas that it had gotten on and showed the nurse. She said it was probably just some irritation either in his esophagus or his stomach. We are to watch it and call the doctor if it persists or increases.

More Firsts

Today at the park Connie rode on the swing for the first time ever!! He had been in our outdoor swing once or twice just before surgery, but this was his first time at the park (remember he couldn't be out in the heat of the summer because of his heart and before the weather got hot, he was too young for it). He held his head up just great. I wish I had a movie of it. He laughed out loud and smiled when he felt himself moving. It brought tears to my eyes to be doing normal things with him. Since we've been home, every time we've gone to the park he's either been in the stroller on continuous feeds or at home with Daddy napping. This is the first time it felt a little like normal, with both Mary Kathleen and Connie playing and having fun. Then Mook wanted to go on the see saw so I helped Conway sit on one side and they went up and down and had more fun. He is really getting into watching her and is so enamored by her. When she comes near him he tries to grab her and she giggles and thinks it is so funny. She's constantly saying to him, "Connie, watch this!" and then she does some trick for him.

It also makes me sad (self pity, I know) when I think about how some things have changed. As a teacher, I know how crucial it is for a child to have a variety of experiences to draw on for future learning. My fear is that since the kids can't have the same sort of or number of experiences they used to have that somehow their cognitive and social development is going to be affected. Sounds silly, I know, but Mook never gets to play with other kids anymore because we're afraid she'll bring some germ home and he never gets to leave the house (except for doctor's appts and to go out in the yard or for walks when the weather is mild enough). What kind of experiences will they have to draw upon?

Monday, November 12, 2007

Still Sleepy

Connie worked so hard today during his first steps eval that he fell asleep at 5:45pm and is still sleeping now (10:30). I guess on therapy days it's an early bedtime. He missed his bath tonight. I'll have to start getting him ready for bed before dinner on those days from now on!
Cross your fingers that he gets his synagis shot (for RSV) tomorrow afternoon. It was supposedly overnighted today and should arrive tomorrow.
Thanks for looking in. Nite!

First Steps Meeting

The team from First Steps just left a bit ago. We went over his evaluations and wrote goals for the next six months. We're planning on him eating orally and cruising up and down the couch by then. Seems almost unattainable at this point, but who would have guessed even a month ago we'd be where we are today? The therapists gave us good ideas of ways to encourage him to do these things we want him to be doing and he will receive therapy services (both OT and PT) once/week for 60 minutes each. Additionally, he'll receive nutrition support from the registered dietician once per month and monthly phone calls from the service coordinator.
So, now the real work begins. We just have to hope and pray that his heart tolerates the increased activity. Don't get me wrong. It's not like he's just been lying still since we've been home, but now that they have given me more ideas, he'll be doing more than before.

Long Winter's Nap

Connie really did go to sleep yesterday at 3:45 pm and not get up until 7am this morning. He woke a few times for a change of pants and had a little gagging (nothing came up) for about an hour between 3-4pm. Other than that, he slept right through. He's had a great morning this morning and is napping now. He has a big afternoon ahead of him. The First Steps Occupational Therapist is evaluating him form 1:30-2:30 and then the whold first steps team, including OT, PT, Dietician and Service Coordinator, is coming to develop his individual service plan at 2:30.

Stay dry and thanks for looking in!

Sunday, November 11, 2007


Somebody has big sleepy-doos in his head today (i.e. Connie is sleeping a lot-- whenever the kids are tired I ask if they have sleepy-doos in their little heads). It is now 9:38pm and Conway has been sleeping since 3:45pm. He didn't have much of a morning nap and woke up at 5am and just took a tiny early afternoon nap. I guess he's just catching up. This is the first time I have actually felt a little nervous about him sleeping so much and want to constantly go check on him. I do see him stir and hear him make noises periodically on the monitor but he hasn't even wanted new pants or anything. He held down his 4p and 7p feeds perfectly. After the 1p feed he retched several times but only a little drooled out. I'm just happy he hasn't been waking up after the feeds feeling lousy. Hopefully tonight is better than last night.


Connie's reflux seems to be increasing. Not so much that he's vomiting more necessarily, but he seems to have the discomfort associated with reflux or heartburn a lot more. It kept him up quite a bit last night. He arches his back and cannot get comfortable. He did well yesterday afternoon and evening keeping his new bolus feeds down. I even gave him 120 mL last night at his 10pm feed thinking it would help him not to get hungry overnight. Well, he didn't get hungry, just reflux. He didn't throw up at all though so that was good. Almost all day yesterday he just wasn't his jovial self. He perked up a bit in the evening, but the daytime and late at night he was just unhappy/uncomfortable. Who knows. Maybe we'll see another tooth here soon.

Friday, November 9, 2007

Article on Congenital Heart Defects

This link is to an article about a recent study done on the brains of babies with CHD's. I saw something about it on the news yesterday so I looked it up to get more info.
Article, Titled: Brains of term infants with heart disease resemble those of preemies

I'm not for sure, but I don't think that Conway's specific heart defect puts him at risk for the type of in utero brain damage they are talking about because he was not cyanotic at birth and never had or has low oxygen saturations. The babies in these studies had transposition of the great arteries (NOT Congenitally Corrected Transposition, like him) or Hypoplastic Left Heart Syndrome. Both conditions usually run kids in the low 80's for oxygen sats and his have always been in the high 90's (100 is best). Anyway, I thought it was still quite interesting and I was excited to see something in the news about CHD's. Anything that brings this issue to the forefront is worth passing on, I think. No offense, but I'm sick of seeing all coverage that autism is getting when it affects a reported 1 in 150-166 children and no one ever talks about congenital heart defects and 1 in 100 births has one and many don't make it to one year of age. Why the American Heart Association spends less than 1% of its donations researching or promoting awareness about CHD's is beyond me. Okay, I'm done with my soapbox for tonight. Thanks for reading!

Good News All Around!

Today was a great day and very reassuring for us. First we saw the GI doctor where his weight has again increased and she is very pleased with that. We told her about his progress with oral motor stimulation and what the child development people said and she was even more impressed. She said they are usually the ones pushing her to have the surgical g-tube placed in order to get rid of the ng tube but if she said they must really have hope for him and that they are not usually that optimistic. That made me feel good. I told her that they wanted a goal of his to be to get onto bolus feeds (like every three hours rather than continuous) so we changed him over today. He will get 100mL at 7a, 10a, 1p, 4p, 7p and 10p. If he throws up less than an ounce each time (less than 1/3 of the feeding) then in about a week we will try giving him 120mL every four hours for a week or so and then if that goes well we'll try the 150mL just five times per day. That would be our goal. I am to call her in about a week to let her know how it is going or sooner if he's not tolerating his feeds.
Next we had a Physical Therapy Evaluation by First Steps. The therapist came to the house and I had to wake Connie about 1/2 way through his nap so it took him a few minutes to really get into it. She was very surprised after reading the therapy notes from the hospital how much better he was doing now. Rather than rating his skill level at a certain age range, she was more comfortable just labeling him as "a weak baby" right now. He is doing some things around 4 months or 5 months, but he has a lot of emerging skills that he can't get full credit for on the rating scales because he doesn't do the entire skill or task. We're focusing now mainly on trunk and head control. His legs and lower body are stronger than his upper body and torso. She gave me lots of positions to work him in and ideas for home therapy. Monday we will develop a plan for future therapy visits and I'll get the report in writing about today's visit.
Overall it was a great day for Connie. Everyone who sees him is impressed. Even other parents in the waiting room! Oh, and the Synagis shot is scheduled to be given Tuesday. Finally!
Side note for all parents out there: There seems to be a consensus among those in early childhood that the bumbo seats and bebe pods are not very beneficial. Everyone who has dealt with him since we've been home seems to agree. They don't help a child learn to sit at all. They do help children develop head/neck strength, but that's about it. So, if you're on the fence about buying one, skip it.

Thursday, November 8, 2007

Child Development Update

I just returned home from Conway's appointment at St. John's Child Development where he was seen by an OT and Speech Path to work on his oral motor skills and feeding issues. The waiting room was crowded so I explained his situation regarding the Synagis vaccine for RSV and they let us wait in their conference room instead of out with all the other kids. Wasn't that nice? Renee and Joann were very pleased to see that he shows no reservations about having things in his mouth anymore. He was accepting of the spoon and the chew stick the whole time. That is very awesome progress. They added a tiny drop of apple juice to the ice water we are spoon feeding him and he seemed to like that, smacking his lips a lot and cooing. He does have a "delayed" swallow, which means he needs lots of time between each "spoonful" of water to process and swallow the water. He tends to let it all pool up in the back of his throat and then it becomes overwhelming to him and he gags and sometimes vomits. We're hoping that at the next visit we'll be able to do the swallow study where they add some barium to the water and take an x-ray while he's being fed to see where the liquid goes. Some kids don't send it down the right pipe, so to speak, and so very much volume would be unsafe (aspiration danger)to proceed with. Today he still has that cold so he had a lot of mucous back there that he just couldn't get down. Joann tried using the percussion instrument on him (beating on his back to initiate a cough) which worked, but it also caused him to throw up the 12 noon feeding. All over himself and her! Mom and I thought it looked like a lot of milk (and phlegm) but Joann said that it was probably only about 15cc's. That was very reassuring to me to hear that because I feel like he really isn't throwing up all that much maybe. Obviously he's gaining weight still so that's good. We go to the GI doctor tomorrow where we will ask about increasing his bolus feeds and eventually getting off the continuous overnight feeding pump. Our goal, according to them, is to keep practicing oral stimulation with him and get him to tolerate us adding some flavored juices to his ice water and to increase the amount of bolus feedings and decrease or eliminate the continuous feeds. The filling the belly, emptying the belly thing (rather than 1/2 full all the time)is a more normal thing and so that's what we'd like him to be able to do. They do not feel at this time that the G-Button (tube in stomach) is the answer. Since they see progress they want to keep going this route (NG tube).

Wednesday, November 7, 2007


Connie had his Parents As Teachers visit today. He woke up early from his nap with nausea just before she came and wasn't "on" so to speak. He did reach for things and play a little, but acted like he could do without any of the fuss. I think he just wanted to go back to bed so half way through that's where I put him. Mary Kathleen enjoyed it thoroughly as she was introduced to the wonderment of scissors. I was told she "handles them quite well" for her age and experience (lack of). She practiced some more tonight. The other thing they have her working on is using tongs and tweezers to pick up small things. Great fine motor practice!

This afternoon Grandpa George watched them while I went to the grocery store. It was my first time in one since August (Greg's been making short trips here lately). Weird feeling. One I could do without frankly, but the family's gotta eat! I wish I could take a yearly, 3 month sabbatical from grocery shopping. Just not if we have to go through what we've been through just to get out of it. When I got back from the store Connie was more animated and lively-and for a longer period of time-than I've seen him since before the surgery.

I contacted the insurance company (apparently the phones are slower toward the end of the week) today about his Synagis shot to prevent RSV and they told me it could be up to two weeks!! I was livid and called the home health nurse and the pediatrician. Hopefully with them both on it, something will happen sooner.


Connie's cold seems to be improving tremendously. He still has a lot of junk but the bulb syringe and vaporizer are a big help. Last night he slept from 7:30-11. Got a diaper change and slept until almost 2. Had a small vomit and fell back to sleep until almost 5. Got another clean diaper and slept until 7. It was great.

We're waiting on the RSV vaccine for this month. The shot is supposed to protect against it for 28-33 days and so should be given every 28 days. He hasn't had a shot for 34 days and is now unprotected. All because insurance is dragging their feet on coverage. It is such an expensive shot they won't even ship it to the home health company until they approve it. I asked about paying it out of pocket and getting reimbursed later and our nurse said it isn't possible. I asked her what this means for him and she just said strongly to NOT TAKE HIM ANYWHERE. We don't have big plans on shopping or other outings and haven't since we've been home, but he does have two appointments at the end of this week where he'll be exposed in doctors' offices to whatever else is there. One of them is at St. John's and that means walking through part of the hospital to get there. Yikes! Isn't that frustrating? I mean, they covered it last month, why aren't they covering it this month? They did the same thing with the drug Prevacid. He got a scrip for it last month and they filled/approved it and now they won't approve the refill. Ridiculous. The home health nurse suggested calling insurance myself which I've attempted before and had no luck. You sit on the phone for over an hour without ever getting to a real person and there is no menu shortcut to actually get a person. I've emailed questions via their website which have gone unanswered. Ever since Anthem took over for Blue Cross/Blue Shield it has been this way.

Tuesday, November 6, 2007

Busy Boy

Here's a movie of Connie playing in his high chair after he woke up/threw up this morning. He had a better night, only throwing up around 11pm or so. He woke up a few times for a clean diaper, but other than that was restful.
View this montage created at One True Media
Busy Boy 11/6/07

Monday, November 5, 2007

New Appointments Made

Conway will be evaluated at home by the First Steps Physical Therapist on Friday afternoon. Then on Monday the Occupational Therapist will do her eval followed by the Family Planning Meeting where Connie's therapy plan for services will be created by all those who will work with him. It's shaping up to be a busy week. Wednesday Parents as Teachers is coming. Thursday is the OT/Speech visit at Child Development to work on Oral Motor and Friday we have both the GI doctor visit and the PT eval! Crazy!
View this montage created at One True Media
Giggling with Mommy Nov 5, 2007

Sleep at Last!

Connie got a lot more sleep last night. The trickle down effect was that we did too!He went to bed a little before 8p. He woke up at 11p, 1a, 2a, 4a and 5:30. Two of those times he threw up (one required a change of clothes/sheets) but then he went back to sleep easily. The other times he needed new pants. I'm always shocked when he has poop because I've never heard of a kid pooping in the middle of the night, but then again, most kids aren't eating all night long like him! That's when most of his calories are consumed so it makes sense that that's when he'd need to eliminate.

As I type he just had a huge vomiting spell. At least the tube didn't come up.
Thanks for checking in.

Sunday, November 4, 2007

Weighted NG Tubes Rock!

We are discovering that the NG tubes with a little extension and some weights at the end that goes into the stomach tend to stay put a little better during violent vomiting episodes than those without. 2X today he has thrown up his tube out of his mouth. Next time it gets changed or thrown up we will grab the one with the weights to replace it.

Conway had a pretty good afternoon. He took a nice nap and did great with his "homework" again. We tried the biter biscuit after the water on the spoon and he played with it for awhile and then threw it. Belle (that's our dog)liked that and decided hanging around his high chair was a good idea. Little does she know that he rarely has anything to eat in it! He looked shocked that it was gone so I got him another and split this one with Mary Kathleen. She kept saying that, "When Mookie is a baby she can have a biter biscuit." She hears us say that when she's older she can have things like gum, etc. so I guess she figured if she was younger she would be allowed baby food items. Makes sense to her! He chewed on that one some and then lost interest. Mary Kathleen helped put the spoon to his mouth and he seemed very engaged while she was there helping. Please pray for continued progress in the area of oral motor. He is making progress, but it is slow. It seems we have a couple great days and then a bad day. It is hard to remember how far he really has come. I want him to be all the way back, but it won't be overnight.

Along the lines of progress, I'm happy to report that Mary Kathleen has pooped in the potty for the first time!! She's been peeing for a couple of weeks but today was the first time for #2. She didn't even say she had to or anything. I took her to the potty after her nap and when she said she was all done there was a big surprise for me!

Lord, We thank you for continuing to show us your mercy and love. We know you are working in us and through us, especially Connie. Grant him rest and comfort tonight so that he may continue to heal and get stronger. We are trying to remember to praise you, even in the midst of the storm. Even the storm is a gift. Please bless our loved ones and all those pulling for and praying for Conway. We ask these things in your son's name, Amen.


If you haven't yet, don't forget to set back your clocks!

We dusted off the ol' vaporizer last night and it seemed to help him breathe somewhat better. I guess it will be out all winter, with the dry indoor air. I forgot that when he was a small baby, still in the bassinett, we had his bed inclined and used it then too. Last night he was up several times fussing and acting like his belly hurt. He finally threw up big time around 5am (6am but with the time change. . .). He lost the tube and all. It was only an hour before we were supposed to turn off his pump anyway so we just let him go to sleep and gave him a break. We figured he wasn't due for any meds for a while and didn't get his next feed until the 9am bolus feed--if he can wait that long--so we'll replace the tube then.

Yesterday evening we took a walk after supper up to the playground. It was pretty dark by the time we got there. Bah Humbug! When we got home we had some hot chocolate to warm us up and then it was time for baths and bed. My cousin Meghan stayed with us this weekend to help out. She and Celeste "camped out" downstairs watching a movie and Mary Kathleen slept in her room.

Saturday, November 3, 2007


These pics are of his pacemaker and his pacemaker lead wires.

It seems as though Brother has the sniffles. He generally sounds congested in the mornings after laying all night (even though his bed is inclined) but it goes away after he's up for awhile. Well, today, his nose is like a little faucet. One sneeze and out comes gobs of goo. Not the typical drainage just from having the tube up there. We've gotten out the bulb syringe and are trying avidly to keep all of it from ending up in his tummy or worse yet caught at the back of his throat where it makes him constantly gaggy. He's been sneezing more and having a hard time sleeping more than an hour because all the gunk makes it hard for him to breathe. Please pray that this passes soon and he gets some rest and has an easier time breathing.

Morning Update

Connie had a good day yesterday up until about 5pm. I've really never seen him throw up as much as he did at that time. The tube came out his mouth so we gave him a break for a bit. We sat him in the high chair during dinner and he gnawed on a biter biscuit. He actually had enough saliva to start to dissolve it a bit and get some of it's flavor. He tired out and we stopped. I got over-zealous and thought without the tube in his throat he might try baby food, but that was a waste of a jar! He wanted nothing to do with it.

Then he went to bed a bit before 8 and kept waking up seemingly in pain. He never threw up until almost 10:30, but was sure acting like he had to. That same pattern kept going all night. He spent an hour or so being miserable then would throw up, then would sleep for an hour. Rinse. Repeat. All night long.

We may go look at the leaves this weekend if we can keep our eyes open long enough to enjoy them. Fall has arrived (the look of it anyway!)

Friday, October 26, 2007

More Older Entries from CaringBridge

FRIDAY, NOVEMBER 02, 2007 05:37 AM, CDT
Rough night. Not sure what was going on but it was exhausting. He finally threw up just before three.


Conway is all set up to see the opthamalogist, Dr. Tyson, on Nov 19 at Children's. The First Steps OT is coming to do her eval on Nov 12 and then the meeting to develop his "plan" is tentatively set for Nov 14--the same day as the Chevy's Fundraiser Night!

The home health nurse came today and he weighed 21 lbs. 2.5 oz. (I guess thanks to me mistakenly overfeeding him for five hours yesterday!). Next week he will hopefully get round two of his RSV shot. He'll get one every 28 days until March.

Celeste threw up again on the way to school today due to carsickness. What is it with our family and throwing up? Well, I'm off to do more laundry and then lay down for a bit since they are both napping--a rare event!


Much improved night. He was sleepy and in bed by 7:30 and woke up around 10 to throw up and get his pants changed. At 10:30 he still hadn't settled down but after a bm he finally drifted back to sleep. That's when I discovered that his pump was still programmed for his daytime, bolus feeds. That meant that for the past 5 hours he'd been getting more than double the amount of milk. Talk about a full belly. I felt horrible. I turned off his pump for a portion of the night to give him a break. He did wake up around 2am and I changed his pants but I think he was getting hungry so I turned his pump back on (was planning on 3 am) then and he fell back asleep. Then he woke up just before 6 pretty nauseous and vomited and then got clean bedding and clothes and went back to sleep. It's 7:50 now and he's still asleep. Cece is on her way to school.

Today we're calling to set up the Opthamalogist appt. and the home health nurse is coming around 9am to weigh him. I forgot to add to yesterday's update that at the neuro's office he weighed 20 lbs 15.6 oz. The little chub is growing everyday!

I also want to thank Aunt Barb for the added support at the office visit yesterday and for the Halloween book. The girls loved it--minus the scratch and sniff skunk!


Well, getting to Children's and back is harder than I thought. We left at 12:15 for a 1:30 appt and didn't get home till roughly 10 minutes to five! What a long day! It was worth it though because we got great news! Of course they can't predict the future or anything, but they basically expect Connie to continue to improve and that there is no reason why he would hit a "plateau" of sorts or stop improving at a certain point. They are pleased with his interaction and the fact that muscle tone-wise he is a little floppy rather than a little tight. They are taking him off the anti-seizure medicine. We will wean down to one dose/day for the next five days and then be done. Stopping that drug abruptly can actually cause seizures so there's no reason to risk it. They said we are on the right track focusing on getting the ball rolling with the various therapies, and that the number one focus should be on getting both OT and Speech Path services to work separately and together with Conway. They also referred us to an opthamologist at Children's where we will have his eyes checked. We still had some vision concerns due to the fact that when he reaches for objects he sometimes fumbles around for them like he can't quite see where they are exactly. The neurologists want to have his vision checked but they believe that the issue is more that his muscles are too weak to go straight to the object rather than his vision is impaired. So that's good news. We can always get muscles stronger!! Anybody know a good personal trainer? Just kidding!

Bottom line: The seizure was a product of the big surgery and his body's response to the major shock of it all and the delays we are seeing are not caused by the seizure, but also by the surgery itself (bypass and what-not). This is kind of what we were led to believe, but they reinforced that today. While post-op seizures are not common, they are definitely not unheard of. The neurologist said they see lots of kids in Cardiac ICU with seizures after surgery and even in the PICU. There is also no reason to believe (some, but little research has been done in this area) that Conway is predisposed to seizures or that he'd have another one after the next surgery. Again, all good news!

It was a whirlwind after we got home to get dinner and get out the door for trick-or-treating. Poor Celeste got carsick in the traffic on the way home from school so she threw up all over her costume and we had to do a quick wash to top it all off! Connie barely fit into the elephant (I figured we could squeeze him in just long enough for a picture) but he was a trooper. He was so tired (ala the bad night last night) but he hung in there while we waited for Sissy's costume to get clean. The whole time Mary Kathleen was hopping around in her bunny costume. Greg had to carry her pumpkin bucket because she wouldn't touch it. I guess she's got a fear of jack-o-lanterns! Pics of the kids will be on the site in a minute. . .

Happy Halloween!



Rough night. He woke up every hour until 4. He didn't cry for long each time but was pretty needy. Needing new pants, needing music turned back on, etc. I'm not sure how, b/c his diaper wasnt' very wet, but somehow he managed to soak his bedding and needed new clothes and sheets/blankets. At 4 he woke up and I could tell he was nauseous. He wanted to be held and I held him and he quieted but couldn't fall back asleep. Finally about 20 minutes later he threw up and was able to sleep for about an hour and a half until he woke up with wet pants again! By then I had to get up to pump anyway. So much for our routine!

Tonight the plan is for Greg to take the girls trick-or-treating around the neighborhood while Connie and I hand out candy (well, he'll be home with me anyway). Celeste is going to be a witch, Mary Kathleen a white bunny (surprise--she's obsessed with bunnies) and Connie will be an elephant.

We go to the neurologist for the first time today. The only way to get in to see him before January was to make an appointment with one of his neurology fellows during a fellows clinic that he supervises. So, today we will see the fellow, Dr. Smiser, and Dr. Noetzel. I actually glad that we'll get two minds rather than one. My hope is that they will take him off of the phenytoin (anti-seizure drug) and offer some sort of help toward rehabilitation. We'll keep you posted!

Just got word so I'm posting it here even before the email goes out. . .

A fundraiser for Conway has been set up by my teacher friends (thanks Carol!) at the St. Charles Chevy's Fresh Mex on Wednesday, November 14th. If you eat there between 4p-10p a portion of the proceeds will benefit Conway to help cover medical expenses not covered by insurance. If you've signed the guestbook in the past, you'll be receiving an email with the formal invitation and an attachment to print out and bring in with you. We will be there and hope to see you there! Tell your friends and family!

We are also switching Conway updates to a new site soon. We will be posting the link on here very soon. Again, thanks for keeping up!

Greg and Erin


TUESDAY, OCTOBER 30, 2007 06:47 AM, CDT
Good night again. Connie had a little nausea and phlegm come up early and then threw up a lot at 6:40am and then back to bed around 7am after a change of clothes.

Going to try to give meds BEFORE the 9am feeding, probably a little before 8, and see if that helps.


MONDAY, OCTOBER 29, 2007 04:17 PM, CDT
The 9am feed came up and he tried to bring back up the 10 am meds but had no success with that! Since then, he's held down his big feeding at noon and so far it is 4:15 and he's kept down his 3pm feeding as well. That drug Enalapril should be great because before we were having to give 5mL of Captopril 3X daily and now we only have to give 1mL of Enalapril 2X daily. That should help to prevent the upset stomach some. The only bummer is the copay is quite a bit higher. If it means he vomits less it will be well worth it!


MONDAY, OCTOBER 29, 2007 06:26 AM, CDT
Great night. Around 2am we had to change clothes and bedding 2X (threw up) but other than that and a couple of diaper changes, he slept well.

Please pray that today he is able to keep down his medicines and three bolus feeds at 9a, 12p and 3p.

Connie is stopping the drug Captopril today (blood pressure--3X/day) and starting the drug Enalapril. It does the same thing, but only has to be given 2X/day. My hope is that he will be able to go off the seizure med, Phenytoin, after our neuro appt on Wednesday and also go off of Spironolactone (the potassium sparing diuretic) and that would put him on only 5 meds, I think. We'll keep you posted on that!


SUNDAY, OCTOBER 28, 2007 08:11 PM, CDT
Another video from Grandma and Grandpa's:

View this montage created at One True Media
My Montage 10/27/07

Connie had a pretty good night. He seems less responsive today. Pretty sure he feels crappy--maybe it's his new teeth. But he's thrown up several times and they've been quite a bit more volume than we were getting used to.
Will watch this and possibly have to make a call to the GI doc if it continues. He's just not the smiley, playful kid he can be/has been the past week or so.

SATURDAY, OCTOBER 27, 2007 05:50 PM, CDT
Grandpa took some more video:

View this montage created at One True Media
My Montage 10/27/07


SATURDAY, OCTOBER 27, 2007 09:52 AM, CDT
Pretty good night. So far he only threw up three times yesterday and once so far today. He has had two bolus feeds--one yesterday at 3p and one this am at 9a. So far he's done well with them. He did throw up after the 3p, but not until 4:30 or so. He got up a couple of times wet and dirty but went back to sleep fairly easily.

He's doing well today and Mary Kathleen is going to a fall carnival and lunch with her friend.

Have a good weekend!


FRIDAY, OCTOBER 26, 2007 02:31 PM, CDT
Back from the GI doc and getting blood drawn. The wonderful tech at St. John's got his vein on the first stick!! She said that she wouldn't stick him unless she had a vein and that if she couldn't find one, she'd send us up to the PICU (intensive care unit where they do them all the time).

Here's what we changed: We are giving the Reglan at 3a, 9a, 3p and 9p instead of 4, 10, 4 and 10. That is so that at two of his bolus (sp?) feeds that med will be on board first to help prevent the vomiting. His feeds have been changed to 60 ml/hour from 4p-6a on the continuous pump and then at 9a, 12p and 3p he'll get 100 ml in about 1/2 hour or so. So, other than those three feeding times during the day, he'll be off the pump. Obviously this is not permanent and we are to call her if he is worse, etc. She wasn't wanting him on continuous feeds forever, it was just to get him growing and give him a break from the fill up/throw up routine he had going on when we got home from MI.

We also talked about the g-tube. She said several things about it. She said she's not in a hurry to do it. She said he's going to be tough to make it work b/c the pacemaker blocks the access. She said that she's fine with keeping the NG tube as long as we're fine with it and as long as Child Development is fine with it. When I told her that a good 80% or so of his vomiting is just phlegm and how hard it is for him to get up, she kind of was of the opinion that he would do better without the tube. If Child Development tells her after our next appointment with them that they feel like the tube is hindering his ability to tolerate oral stimulation, then we will pursue the g-tube straight into the stomach. She said it isn't permanent and when he gets to taking enough calories orally that we just "deflate the balloon and pull it out" in the office. The surgery to put it in only takes about 10 minutes (of course longer to prep, etc.) and he'd stay in the hospital overnight just so we can learn how to use it. That would get that darn tube out of his nose and give him some relief from the drainage at least. The downside is that it may not be able to be done at St. John's b/c they do not have a cardiothoracic program and anesthesia there may not want to put him out in case something happens heart-wise he'd need to be someplace that could respond to a heart crisis, such as Children's. It doesn't matter the hospital necessarily, it's the fact that he has to undergo a general anesthesia and surgery again. Today was his last day for oxycodone (so now we're weaned--yay!) for crying out loud and we're already talking about surgery again. Ugh. The fact that he's "high risk" to put under. I just wish he'd eat. But I fear she's right. The longer the tube is in, the less he wants anything to do with oral stimulation. That's the other reason we changed his feeding schedule. At Child Development he did so well with the oral stim, but his pump had been turned off for two hours before we got there so he was a bit hungry. At home, he's not doing well with his "homework", working on putting cold water in his mouth via spoon, finger, toy, because he's never hungry. So, now that he's on a few bolus feeds/day, we'll do the homework right before the feed starts so that he'll be hungry. There. Now we just have to hope it works!


FRIDAY, OCTOBER 26, 2007 06:05 AM, CDT
Really good night. He fell asleep early, around 7 or so, but then was up at 9. Just before 11 he went back to sleep and again woke up just twice with wet pants. It is after 6am and he's still sleeping, no early morning nausea yet!!

We go to the GI doctor today, Dr. Brady. Connie also has bloodwork ordered from Dr. Bromberg. The bad thing is they have to do a venous draw, not a heel poke. Heel pokes give false numbers for potassium, which is what we are checking on. Then we are spending the day at Grandma and Grandpa's house. I am a little overwhelmed about all that has to be packed, but it will be worth it for a change of scenery!

There are new photos up on the photos page. . .Check them out!

Thursday, October 25, 2007

Past Journal Entries from the Old Site...

THURSDAY, OCTOBER 25, 2007 05:04 PM, CDT
Just got back from a chilly walk outside. We're having a great day. Here is some video from yesterday and today:
Conway at Work and Play

THURSDAY, OCTOBER 25, 2007 12:25 PM, CDT
Another good night here at the Beckemeier house! Only up for wet pants and then that early morning nausea. He waited for Grandma Marybelle before he had the big vomiting. Once he got in his high chair it didn't take long. I'm starting to wonder if it is just a coincidence or if he is associating sitting in it with eating/gagging/etc. and making himself vomit. Weird. I just read last night that a couple that stayed at the Ronald McDonald house with us lost their baby girl. She was born in MI and had her surgery on 10/5 and died the night before last. They were a young couple who traveled by train to MI from Montana to have their HLHS baby in the best place possible. Just another reminder how this life is a gift and we should cherish each day we are given with our children.

So, maybe the quick weight gain was just an initial catch up as now he seems to be steadying out. His weight today was only up 1.5 ounces. He now weighs 20 lbs 12.5 oz. His lungs sounded good, temp cold (95.7) and he was happy. He had just hurled right before she arrived. We had the phone ringing, door knocking, dog barking and kid puking--all at the same time. Fun!
He took a nice, 1.5 hour nap and has thrown up three times since, but hasn't been miserable or anything. I think he's getting ready for another nap soon. Sissy's napping now and when they wake up we'll go for a walk outside--maybe to the park.

MUCH better night last night. He went down before 9pm and only woke up for two new diapers between 9pm and 6am. He's been trying to wake up for the last hour, but can't quite decide. He's kind of singing himself back to sleep whenever he wakes up. We all got some sleep around here!
I'll try to post later after the home nurse gets his weight. We are going to watch him pretty closely for too big of a jump that may indicate water weight because we would possibly have to go back up on the Lasix to three doses per day if he was retaining or showing other signs that it was a problem.

TUESDAY, OCTOBER 23, 2007 09:01 PM, CDT
Sorry for the lapse in updates!
Connie did fabulously at the Child Dev. evaluation yesterday. He got homework to do twice a day for the next two weeks. We are working on him tolerating me putting my finger dipped in cold water on his lips and on his gums. We are to stay far from the tongue, as that is an automatic gag/vomit. He opened his mouth for repeated "gum rubbings" and would close his lips, smack them and swallow the tiny bit of water that was in his mouth. Then he tolerated a plastic spoon on his gums and played with it. Then we had a chew stick and he liked that rubbing on his gums too. After 10-15 minutes, he was done playing. No gagging or vomiting. This is a very slow process. It has to stay positive for him and can not induce a gag or vomit as it will send us back to square one. He has to trust us and enjoy the experience. We go back in two weeks.
Then there was the cardiologist. His blood pressure was great. He's gaining well (no kidding!) and not any worse than his last appointment. Dr. Bromberg doesn't think he'll get any better on his own over time. He wants to talk more with Dr. Bove and try to get a feel for whether or not his own valve could possibly be repaired. Getting a mechanical valve would mean being on blood thinners for the rest of his life. This is dangerous and not good for a kid. Not only would he have to have blood draws at least every month for the rest of his life, he would be at a big risk of serious, possibly deadly bleeding from something as simple as learning to ride a bike and scraping a knee. The tissue valve wouldn't grow and isn't a good option either. He did say that as long as Connie remains asymptomatic AND his heart function (the squeeze) stays good, they would like to hold off on a surgical repair of the valve (we still have that conduit problem, but the valve problem anyway) until he was between 6-10 years old. Of course, if his heart failure worsens before then, it would be addressed. We went down one dose/day on Lasix (from 3 to 2) and if he tolerates that well for the next week, then we are switching his Captopril with Enalipril, which would only have to be given twice daily as well. We also added Digoxin, which helps the heart squeeze, as well. It is our hope that it will help to relieve some of his heart failure symptoms and make breathing easier for him. Nurse Kelly removed a stitch that never dissolved because we don't want infection!
He had a horrible night last night and was nauseous all night long, but unable to get relief as he couldn't get that thick mucous up very easily. Finally between 6-7am he had a big vomit and felt better for a bit. Still, he didn't nap longer than about 30 minutes today without needing help to get back to sleep or getting sick.
He was not his perky, jovial self most of the day today. He did have periods of playfulness and laughter, but not like what he has been. I'm sure it's just because he had such a rough night. If this pattern continues, I'll probably call the GI doc before our Friday appointment.
Tomorrow morning the home health nurse is coming over to weigh him. He's almost 21 pounds! Dr. Bromberg is okay with him staying on the 24 cal/ounce milk because he says he has been gaining about 30 grams per day since his last appointment and that is the goal. We don't go back to the cardiologist (unless something changes) for two months! Whoa.

SUNDAY, OCTOBER 21, 2007 09:25 PM, CDT
We called the exchange today to ask about the sweating. The doctor on call said that since he was so happy and active, it was unlikely that it was his heart failure getting worse. He'd expect him to be miserable and sluggish. So, that reassured us.
Today was our last dose of Ativan!! That is the drug that makes you not care what is happening to you (like a relaxer/sedative type drug). Yay!!
I forgot to mention on Friday's post that sometime after he woke up Friday afternoon from his nap, his eyes suddenly looked different--better different. Remember before how I'd say that his face just didn't have the expression it used to? When he'd smile nothing really happened from his cheeks up. He didn't "light up" like he used to. I feared it was permanent, perhaps a result of the seizure or something. I was hoping it was just the drugs he was on. Well, sure enough, he is back more than ever. His eyes have so much more expression and are starting to light up again. Even my mom and dad noticed the difference.
Today was a good day. He was a little urpy this morning but seems to have settled into a nice routine (knock on wood). He's been getting down for a nap around 10ish and then up between 12 and 1. Then he goes down again in the afternoon and sometimes a cat nap here and there too. Then he's pretty sleepy by 8 or 9.
Tomorrow we have an appointment with the Child Development Center of St. John's Mercy. He is to have a swallow study and feeding evaluation done where a Speech Path and an OT will work on and evaluate his oral motor skills. Since the feeding thing seems to be our biggest issue at this point, this appointment comes with a lot of anticipation for some sort of plan/resolution to this problem. I am trying not to EXPECT any answers, but I'm sure hoping for at least some ideas to try!
Then after that we see the cardiologist in the afternoon. Thankfully Grandma and Grandpa have offered to help out again. They are staying with Connie in the morning while I take Mookie out to the library for a little one on one time at the storytime and then they are coming back after lunch to stay with Mook during her nap while Grandma helps me take Conway to both appointments. I'm still nervous handling him and all the feeding stuff, meds and bags of extra clothes and cloths for the vomit by myself.
Well he's asleep now and so I better go too. All of you reading this who know me must not believe your eyes when you are reading that I may actually go to sleep not knowing who will play in Wednesday's World Series (Red Sox or Indians) but sometimes your passion shifts from baseball to sleep! I know. It's unbelievable isn't it?

SUNDAY, OCTOBER 21, 2007 06:05 AM, CDT
Mr. Active had a hard time settling down last night. He was so cheerful and happy I guess he didn't want the day to end.
He finally went to sleep and had a pretty good night. He woke up several more times than the night before, but seemed more consolable than several days ago. It's inevitable that every morning between 4-6 am he will get nauseous. The accumulation overnight of all the drainage is just too much for his belly by that point and he'll wake up, get upset and then vomit. Sometimes he gets relief quickly, other times its a struggle and an ongoing deal for 1/2 hour or so. He woke up around 5:40am today and did this very thing. Now he's talking himself back to sleep.
I'm noticing him being a bit sweaty/clammy. This is something new for him. It is a sign of heart failure and something they told us to watch for. I'm confused though because it is only the part of him that is laying on something else (back of head, neck, torso) and not his forehead or face. When he gets upset, worked up or vomits, he'll get a little more moist and yesterday even his hair was a little wet. I was chalking it up to periods of activity. Increased activity, whether it be playing, crying or vomiting, will bring it on. Then I thought it was just because he was dressed too warmly. Last night I put him in a cool pair of pajamas with a very light blanket and this morning, his cloth diaper from under his head, was very damp. He is not a warm kid by nature. His temps since we've been home have only been running in the mid 95's to mid 96's range so it's not like he's hot! The thing that Greg and I feel good about is that he is the happiest and most alert and in tune that he's been since surgery. I wish Monday were here already, so we could have our Dr. appt and be told it's nothing! I'm going to call the exchange once it's a little later. Nurse Kelly told me on Friday to not hesitate to call over the weekend with anything new or concerning so I'm going to take her up on it.

SATURDAY, OCTOBER 20, 2007 10:23 PM, CDT
Celeste's team won their game today! What beautiful weather we had today! We spent the afternoon outdoors for Aunt Barb's Annual Halloween Party. Connie enjoyed the fresh air and gave away a ton of smiles from the confines of his stroller to the onlookers who kept their distance. All he slept since 2pm was for the drive there and back. Otherwise, he's been awake and kicking and happy. I told him tonight that if anything ever happens to him, today is a day I want to remember and hang on to. It was a wonderful day. If each day continues to improve like this, I'm going to be thinking a small miracle has occured!
I've got to finish giving him his meds. He just fell asleep a few minutes ago and hopefully will be sleeping until that diaper wakes him up in the middle of the night.
PS. I can't believe what Cleveland is letting happen to them!

SATURDAY, OCTOBER 20, 2007 09:17 AM, CDT
We had an even better night than the night before. Connie went to bed a little before 10 after a little cat nap at 8. He woke up at 11:30 but went back to sleep with some patting and kisses from Mommy. Then he slept until his Lasix-induced, soaking wet diaper woke him up at 3am. He got new pants and fell right back asleep until quarter till six. He was a little fussy then but fell back to sleep until about 7:30 or 8 and then was up and sitting in his Bumbo seat and happy as a clam. That wore him out and a little before 9am he fell back asleep for about 1/2 hour. That brings us to now. Greg and the girls are at Celeste's soccer game and Connie and I are hanging out at home.

FRIDAY, OCTOBER 19, 2007 03:35 PM, CDT
We've had a much improved night last night and day today! Praise God! Last night we put him in a port-a-crib in our room with more light on and a musical aquarium attached to the side of the bed. He went to bed drowsy but awake around 8pm. Around 9pm he woke up but "talked" himself back to sleep. Around 12am or so he woke again and I just had to turn on his aquarium music and he focused on that until he fell back to sleep. Same thing an hour later. Around 3am he woke up but this time wasn't as easy to settle. I think it was nausea because he gagged a few times but couldn't get anything up. He did give in and fall back to sleep for about an hour and a half. Then the same fussiness and finally he did vomit (mostly just phlegm, but he was pretty miserable for a bit). He seemed like maybe he was up for the day so at 6:30 he stayed up for awhile and watched me eat breakfast and listened to Today in St. Louis. Then he got sleepy again so he went back to bed. This time he slept for about an hour or so and then woke up sick to his stomach again. After a few bouts of vomiting he was happy and cheerful and ready to be up for the day. He took a one hour nap for Grandma and Grandpa while I was at MOPS and then stayed awake until after 1:30 when the home health nurse left. he napped upntil about 3pm and is up and happy again. I just took a cute movie and am uploading it now. He is much improved over yesterday and the day before. The nurse at Dr. Bromberg's office and the home health nurse both think that part of his issue the last several days could be from the vaccinations.
His weight is up 7 more ounces. Now he's 20 lbs. 11 ounces. At this rate, they will need to start a diet! I'm pretty sure when we go to the cardiologist on Monday that they will change his feedings from the 24cal. fortified milk back to just regular breastmilk. The nurse called the doc to get new orders for continuing the visits for weight checks and they said they don't want to make any changes before they see him and they do want to make sure it isn't water weight (that would not be good!). Neither the nurse or I think that is the case. He doesn't seem swollen in the least. Not with that double chin!
Thanks for the prayers and support. My MOPS meeting today was just "what the doctor ordered" so to speak. It was so great to be able to thank in person so many of the people who lifted us all up and continue to do so.
I'm going to get back to these pics and movies so I can add them to the post in a bit.
Edited to add the link:
Conway "talking"

THURSDAY, OCTOBER 18, 2007 07:00 PM, CDT
Not much to report today since he was up fussing all night and was very sleepy today. At night he doesn't seem like he wants to be awake, he just seems like he wants to sleep but can't.
I'm a little concerned over his sleepiness. The staff at MI told me that one of the biggest symptoms of his A.I. would be tiredness, but it seems to be increasing. He just seems like it takes a lot of effort out of him to smile and interact and he is too worn out to do as much of it as he was even two days ago. That has me concerned that his heart is worse now or something. Hopefully the sleepiness is just because he's been having bad nights.
The other concern I have about his heart is that when he is sleeping and very still, his head (well, his whole body for that matter) moves and looks a little like it's shaking. What I think it actually is is that his heart is beating so hard (as evidenced by his chest really moving a lot) that it is making other parts of him move some too. He also likes to "talk" sometimes and I notice that he has to stop and take lots of breaths (like catching his breath) before saying more. I'm going to talk to the doctor about all this on Monday, but I don't think there's much they can or will do about either of these things. Not at this point anyway.

Maybe the little buggar just has his days and nights confused all of the sudden. He took a three hour nap from 10a-1p and was awake and fussy for a little over an hour and then fell back asleep and has been sleeping since, with one break to pull his tube out and have it replaced. I tend to think that isn't actually the case since this poor night sleeping started Sat. nite (also when he started refusing the pacifier to sleep) and he's been pretty awake and alert during the day up until now. I think he's so sleepy today because he's recovering from all the awake time last night.
It's such a good thing that Mary Kathleen has been sleeping so well lately. I don't know what I'd do if she weren't!
Today we made appointments with Parents As Teachers (we missed our September visit since we were in MI), the pediatric neurologist, Dr. Michael Noetzel and the pediatrician for his 9 month well baby visit. I was looking at his paperwork from yesterday's visit and saw that he is due back between 9-12 months but the doctor circled 9 months (I guess Connie's special because of his heart). It didn't hit me until this morning that that is only 6 weeks away so I'd better schedule it! We are seeing the neurologist on Oct. 31. I am hoping that he will agree with the MI team that Connie is not a seizure risk and take him off of the anti-seizure meds, but more importantly, focus on Conway's rehabilitation.
The First Steps dietician was out today. The next phase will include evals done by OT/PT/Speech and then the team will sit down together and write a plan for therapy for him. We will meet sometime within the next 45 days. He was found to be eligible for services. The dietician suggested some harder foods such as biter biscuits and fruit/veggie puffs. She said that the pureed foods probably feel the same to him as the phlegm/vomit and that scares him. He might be more willing with the harder foods. He definitely puts toys to his mouth regularly, so that is good. She also suggested "chewies" which are similar to teething rings. I'm drawing a blank on anything else we may have discussed as I am very tired. Off to attempt a nap. Oh wait, gotta draw up and give the 4:00 meds. Maybe another time!
P.S. Grandpa took some video of Conway and wanted me to share: Click on the first orange link and the third orange link.
Conway 10/15/07
Connie 10/15/07

Mary Kathleen didn't shed a single tear or protest in any way before, during or after her flu shot! What a brave girl! She was rewarded by the nurse with a pink popsicle.
Conway cried before his shots even started. Big difference from the last vaccinations. Dr. Davis says that Connie is hypotonic (too little muscle tone)--but that is no surprise after laying in a bed for 40 days! He also said he'd call the neurologist that we were referred to and see if he couldn't get us seen BEFORE JANUARY! It worked.
Grandma and Grandpa stayed last night to watch the kids while I went to dinner with the gang from school. What a nice break to help me stay sane! Thanks girls! Thanks Mom and Dad!
The dietician from First Steps is coming to the house today. Maybe she'll have some tips about getting him interested in eating. Now he refuses the pacifier completely. That's too bad because he was sleeping pretty well during the night until this refusal started. Now he is waking constantly all through the night. Last night he got zero sleep between 3am and 7:30am due to the fact that he could not STAY asleep and settled.
Better hit post because he is starting to act like he's getting ready to vomit!

MONDAY, OCTOBER 15, 2007 09:26 PM, CDT
Conway had a great day, made even better by the fact that Grandma and Grandpa relieved me long enough to take a nap!
The home health nurse came this morning and he now weighs 20 lbs, 4.5 oz. That's over a one pound gain since just last Wednesday!! Won't the docs be impressed by that?!
Connie got a bath tonight and went to bed earlier. We're trying to get back into somewhat of a routine, but he is pretty much in charge of it right now. When he's tired, I put him to bed and when he's awake we play. He's pretty good about not wanting to "get up for the day" until 6 or so in the morning, but he has been taking cat naps in the evening and not going to bed till closer to 11pm or so. Tonight, I put him in his bed around 7pm, he was up at 8, got a bath and listened to books with Sister and then back to bed (in the living room) where he talked himself to sleep while I washed the dishes in the dark! Hopefully going to bed earlier will help him sleep better (longer stretches than 15-30 minutes!)
We got set up with an appointment at St. John's Child Development Center for next Monday afternoon. They will evaluate him for his ability to eat. I'm to turn off his continuous feeding pump two hours before the appointment and bring a bottle for him to drink from in front of them. I'm not sure what all they will do but they said to expect to be there about an hour (and bring the pump since I'll have to turn it back on after the testing). Hopefully they will have therapies and things that will help him gain interest in eating again. At 3:30 that day he sees his cardiologist, who is also at St. John's.
Tomorrow he goes to the pediatrician for his 6 month well baby visit and vaccinations, including a flu shot. Mary Kathleen will get her flu shot as well. I got mine last week so all that leaves now is Greg and Celeste!
Not too much to report. Just trying to get back to some semblance of life as it once was. I enrolled Mary Kathleen in her normal, twice-monthly storytime at the library today. Friday morning I'm planning on going to my MOPS meeting. The main difference is that I have to ask others to stay with Connie and/or Mook while these things take place and that's hard for me. Not because I don't want other people with him, but because it is hard to ask for help! I'll never be able to repay my mom and dad for all the time they've "put in" over here helping us get settled in, running around to the stores to pick up things and playing with the kids. I really am blessed.
Have a good night! I'm off to bed because that ped appt. is at 9am and that's going to be tough to get to on time the way our schedules have been lately!

MONDAY, OCTOBER 15, 2007 06:56 AM, CDT
Another vomit-free night! He even managed to keep his meds down! I started giving his 10pm meds over like an hour for a couple of reasons. One is I think it is too many at one time and that was upsetting his tummy. Another is I want him to keep them down. We were told that they start absorbing well after about 10 minutes so I 'd give a few and wait 10 or so minutes and give a few more and so on. The captopril is the big vomit-inducer so I gave that one very slowly, only a mL at a time over several minutes (he gets 5mL's of just that one). It has worked this morning too.
Connie slept from 10:30-12:45. The big boy bed didn't work out. He was up in less than an hour and making too much noise for Mookie to sleep. So we were once again bannished to the living room! He was up several times an hour again last night and just seemed to be uncomfortable. I'd pat him back to sleep or help change his position. He wanted nothing to do with the pacifier, which is weird, because he needed it to sleep before the surgery. Finally a little after 4:30 we gave up and tried the swing. That worked until about 5:45. Poor bubby. He needs some better sleep!

SUNDAY, OCTOBER 14, 2007 08:26 PM, CDT
Conway rolled over for the first time since his surgery! I was in the kid's room switching out summer and winter clothing when I heard a big cry. I ran to the living room and all the way I was telling him I was coming. He had been laying on his left side and when I got there, he had gone from that side to his back over to his right side and was off his little makeshift bed on the floor and his face was pressed on a toy. His eyes were closed. I picked him up and placed him back on the bed and patted him for a minute and he fell back asleep. He didn't even revel in his new, old accomplishment!The other great thing he did today was to take a pacifier that was dipped in milk. He took it several times and would open his mouth when I brought it near. We practiced again later but that time he gagged. We took a nice, 2 mi. walk around the neighborhood. By the time I got the pump all packed up he had fallen asleep on me but we went anyway. He was awake for the first 10 minutes but then fell asleep again. He's in his big boy bed (the crib) tonight right now. We'll see if it stays that way. I'm almost hesitant to do that b/c Mary Kathleen has been sleeping so well since we've been back in town and I'm not sure if she's just past whatever phase she was in or if it's b/c he's not in there making noise in the middle of the night. I don't want to mess with her sleep b/c at this point I couldn't handle them both needing attention at night!

SUNDAY, OCTOBER 14, 2007 12:16 PM, CDT
Here's a video of some clips from his first week at home. Click on the first orange link. Enjoy!
Conway's First Week at Home

SUNDAY, OCTOBER 14, 2007 08:19 AM, CDT
Brother had a hard time falling/staying asleep last night. Greg said he seemed to be bothered by gas or something. He wasn't particularly upset or crying, and only vomited a tiny bit--he really doesn't care for those cold meds hitting his tummy--but he just didn't get a good chunk of sleep like he needs.
I'm on duty now and we had a little bit of an upset tummy and he finally fell asleep in the swing. He talked himself to sleep. He was rubbing his eyes and just having a hard time settling down.

SATURDAY, OCTOBER 13, 2007 08:47 PM, CDT
Connie took a great nap in his crib--almost 2 hours! He spent the afternoon getting spoiled by Grandma Marybelle and showing off his blowing raspberries. He spent some good time in the Bumbo seat today and his head control is improving by leaps and bounds. I didn't have to sit behind him and he only "bobbed" his head a couple of times. Maybe it's like riding a bike--once you have it, it doesn't take long to remember how to do it. He did vomit a few more times, but the bigger issue laundry-wise was the two blowout diapers he had. It was incredible. I guess he's getting some decent calories if he can produce that kind of output!
Grandma George sent over some new clothes that she found today. Can you believe he already needs 18 mos? And this is a kid we're worried won't grow! He's only about a pound bigger than he was at 5 1/2 months (he's now almost 7 1/2 mos) but he looks so very different. He looks like a little butterball.
Uncle Terry is coming out tomorrow morning to see his godson and Greg and Mary Kathleen will be going to S. County for our nephew's Christening celebration in the early afternoon. Connie isn't allowed to go anywhere (except the doctor, apparently) for now so we're staying put.
He just fell asleep a few minutes ago. Here's to another good night!

SATURDAY, OCTOBER 13, 2007 10:52 AM, CDT
Conway had a wonderful night! He slept from 11pm until 3 am without waking and only woke up at 3 for a clean diaper. Greg changed him and off to sleep he went. No vomiting. Then at 7 he woke up very mad (his meds were due at 6--oops, Daddy's not used to this letting Mommy sleep thing yet!) and promptly threw up a bit after his refrigerated blood pressure med hit his tummy, though only a small amount. Then at breakfast I tried to encourage him to put a dipper in his mouth that had some mashed bananas on it. He threw up. He likes fingers in his mouth so I put some syrup on my finger thinking he'd be interested in the sweet taste. More throw up. However, the episodes seem to be less frequent, less in volume and less painful. He has just been fine and then barf and then fine again, for the most part (knock on wood). Maybe this prevacid is the key. Well, and continuous feed and sitting upright, and blah, blah, blah. Bottom line is he woke up very cheerfully, spent the morning with the family at the table and got a bath and then was worn out so he went down for a nap around 10:30am. He's in his own crib for this one. We'll see how he does. Hopefully there is less distraction and less to wake him up.

FRIDAY, OCTOBER 12, 2007 10:59 PM, CDT
We've had a pretty good day today. Connie has seemed to be getting some relief from the prevacid. His fussy periods before he vomits seem shorter again and he's not vomiting all that much I don't think. Tonight right at 10pm when 8 meds were due, he got really fussy and acted like a big one was coming any second so we waited hoping he'd throw up and then we could give the meds and they'd stay down. Well, he never ended up throwing up! At least not as of yet. We gave the meds about 15 minutes ago finally and so far so good. Tonight Grandma and Grandpa came back over (they were here all day too--helping with MK and the dr. appt.) to watch the kids while Greg and I went out for a couple of hours. It was so nice to see our friends and just be out of the house. Connie and Mary Kathleen got a ride to the park in the stroller this afternoon. He was bright eyed the whole time. He loved looking at the trees and listening to the sounds of nature and kids playing. Greg is taking the night shift tonight since he doesn't have to work tomorrow. I'm not sure if I'll be able to sleep. It's kind of weird--like a part of me is in the living room while I am in bed. I think I'm going to miss Connie and those middle of the night wakings, but I know that I need some rest or I'll be no good to anyone. Plus, my bed sounds pretty nice. Everyone said how nice it must be to be home and in our own beds but I've not made it all the way to bed at night yet--just to the couch right next to my baby boy! Have a good weekend and pray for continued comfort and relief for Connie. Also ask God to help Conway begin to develop some interest in eating again.

FRIDAY, OCTOBER 12, 2007 03:06 PM, CDT
Connie didn't vomit between 8pm and 4:30am! It may have been a new record. He seemed to do much better on the 50mL/hour round the clock thing. He did wake up about twice per hour crying and wriggling around like he was hurting, but settled back down easily. He threw up in the early morning hours, a big one at the doctor's office (how appropriate!) and a little in the car once we got home. He's had three big bm's today which is more than the last few days combined. I guess that means he's getting something finally!
The doctor said that he is doing better than she thought neurologically and because of this, may not need the g-tube (straight into the stomach--another surgery). First, we don't want to do another surgery on him now. Second, she thinks he can come back from this and learn to eat in the relatively near future (one to three months, perhaps). She said drinking is hard and he may skip the bottle and go straight to more pureed foods. Told her he gagged at the sight of a spoon and she said it will take time. She said what we are doing is perfect. Just keep offering nursing when we can, keep it positive and continue with the 50mL/hr round the clock. She changed his Zantac to Prevacid and said that should help quite a bit with the increased irritability we're seeing as it should relieve some of the discomfort. Basically, he's doing this for several reasons. Kids who are on bypass for a really long time get feeding issues. His vomiting, she believes, is being caused by the tube and the pacemaker. Neither of which we can change right now. Putting in the g-tube on him is rather complicated as well because his pacemaker is sitting right where the tube needs to go. So, right now we are going to get some studies done (swallow study and whatever else they feel is appropriate) and watch him. We need him to "start showing some interest" in the next month or so. We go back to her in two weeks with the instruction that if he's not vomiting less in one week to call her back. She said if he continued like he had done the past day or so that he'd need to be admitted for IV fluids. Her office is also referring us to the child development people at st. John's to get some OT going to hopefully encourage him to want to eat and put food in his mouth.

THURSDAY, OCTOBER 11, 2007 07:28 PM, CDT
Fairly decent afternoon. I took about a 40 minute nap before the vomiting started again. Still dry heaving and miserable unless asleep, which doesn't last long, but at least a little less vomit. Dr. Bromberg called back. He got us an appt with the gastroenterologist, Dr. Linda Brady, for tomorrow at 11am. Cardiologists deal with feeding issues all the time, but he said, "Conway's pretty complicated and I'd prefer he had a specialist." After telling her about Connie, she said to put him back on the Reglan (shucks--it's one of those every 6 hours drugs). He also said to start feeding him on continuous mode all the time. So now he'll get 50cc's per hour (between and ounce and a half and two ounces), every hour, for 24 hours. I can only pray that this is temporary. I can't imagine how limited he'll be once he starts wanting to crawl and move around if he's attached to a feeding tube all day and night. I was telling my mom today that I'm already worried (and I probably shouldn't be just yet, but it's hard not to be) that he's not getting enough enrichment to help him developmentally, both physically and cognitively. Right now we're operating in the "Let's do whatever we can to keep him from puking" mode and that so far has meant sitting him upright in something as much as possible. This limits his ability to move around, develop muscles, etc, etc. Not to mention we pick him up a lot less b/c the jostling tends to spark the vomiting too. Poor kid doesn't even get held as much as a regular baby! Please pray that God will whisper some solutions in the ear of Dr. Brady tomorrow that will help Conway to hold down his feeds so that he may grow and develop. Pray that the Lord will comfort Connie and allow him to rest, as the episodes of pain and nausea are lasting longer and longer.

THURSDAY, OCTOBER 11, 2007 12:44 PM, CDT
We finally got the NG tube replaced after 9am this morning. We let him sleep for a bit plus he had just finished a feed so we couldn't put in back in until just before the next feeding was due.
He threw up his next feeding, including his 10:00 meds.
Got a bath, liked it, got changed. Threw up some more. Fell asleep in the swing.
Going through the mail from the 41 days we were gone. How fun! Mookie is outside with Grandpa and Grandma went to Target for us.
His next feed just started so we'll see how he does.
Have a nice day! It's really cooled off here, but the sun is warm and bright.

THURSDAY, OCTOBER 11, 2007 05:52 AM, CDT
Connie had a rough evening yesterday. He was tired but had a hard time falling and staying asleep. Could it have something to do with the fact that he's vomiting all his meds, including his withdrawl meds?
Last night was our first night with the continual feed pump going. We load it with 710cc's of fortified breastmilk (almost 24 oz--and they swear it is good left out this long) and turn it on at 8pm and run it until 6am. He gets 71cc's per hour. The first two hours he was miserable. He finally went to sleep a little after 10 or 10:30--time becomes a blur after awhile. He was awake several times in the night with more vomiting, but mostly just an upset tummy and crying. He was so tired that he was crying with his eyes closed. Patting his bottom seemed to help get him back to sleep quickly all but one time. Then around 5am it stopped working. Sure enough, he had a very full diaper. When he rolled to his back to get a new diaper, the vomit train started and we didn't get off for 15 minutes. the crowning blow was when he threw the tube up out of his mouth. He was covered to the point that he looked like a slimy newborn moments after birth. So, it appears that giving Connie 44 oz in one 24 hour period just means that he can vomit that much more!

We've had a good day today. He's been pretty sleepy and when he was awake he kind of wanted to be left alone and then he'd drift back off. The feeding pump was delivered today and I'm already able to work it like a pro. So far he's had two feeds with it and no big vomiting. Just a little phlegm and meds came up but no milk!! Actually, he hasn't had major vomiting and gagging today. He's thrown up several times, but mostly small amounts and just phlegmy stuff. Only one outfit change!! He sat on my lap during lunch and his head control seems to be starting to improve. Aunt Barb and Aunt Merk came today, brought some meals and helped with laundry and more unpacking. Mookie was so happy to see them and show them her toys.
Pretty uneventful day, which is nice. I got some details worked out with the cardiologist about feeding, got a call back from the neurologist's office in MI and got some stuff put away that has been driving me nuts (yes, I'm pretty OCD). I even got a little nap!! Gonna take Mookie outside for a bit now while Connie naps and Greg keeps an eye on him.
Thanks for your continued prayers and for checking in. I encourage you to visit Johnny's carepage (carepages.com page name: JohnRobert2005)for details regarding where you can send memorials that will advance CHD awareness and help families of kids with congenital heart defects.

Praise God!! Connie had a good night. He fell asleep around 10 or so and slept until 4am. He got his pants changed and went back to sleep until 6:30am! I was up a few times messing with his feedings--we haven't got the pump yet--but it was more sleep than the past two or three nights combined! He did only get one feeding overnight because it kept stopping and I just couldn't stay awake for 45 min-1hour to make sure it kept going. So, whenever I'd wake up I'd get it started again and get meds for him and go back to sleep. He didn't move the entire night! This morning he threw up his 6am meds about 1/2 hour after getting them. Since he was awake, I offered the bottle before giving him the feed in the bag and the bottle wasn't even to his lips and he started gagging and threw up the meds. I don't understand this. Why does he gag before something is even in his mouth? Unbelievable.
Right now I'm relishing in the joy of getting a little sleep. His home nurse comes in a few hours so we'll get a new weight and see if he's up or what.
Have a good day!

For some reason Caringbridge is posting this one ahead of this morning's update so for the latest read the next entry after this one.
It's been a pretty rough 24+ hours. I think only about one feeding stayed all the way down. Grandma George came as a reinforcement this morning at 6am! I got to get about 2.5 hours of sleep after she got here and it was wonderful.
First Steps Visit: Signed all necessary consent forms, spent over an hour talking about Connie both before and after the surgery. Cleaned up vomit--2X. He should have no problems receiving eligibility and getting services.
After lunch he vomited so hard that the force pushed the tube about 7 inches out of his nose. Grandma had to help me put it back in. He did not like this. It took several tries.
Greg took over for a few hours this evening so I could get out of the house. Mookie and I went to Grandma and Grandpa's for dinner and played together in the playroom. As soon as I walked in the door he vomited, but a pretty small amount.
Tomorrow the home health nurse is coming (weight, etc.). Dr. Bromberg is getting us set up with a gastroenterologist, Dr. Linda Brady. He is also getting us on a feeding schedule of 145cc's (almost 5oz) at 9am, 12pm, 3pm and 6pm and then at 8pm we put him on a feeding pump where he will be fed continually for 10 hours, 71 ml per hour. Hopefully the pump will be here tomorrow and if he doesn't vomit overnight, we may all get a bit more sleep around here. Dr. Bromberg also changed the times of some of his meds so that he goes from 10pm until 6am without any meds (other than a 4am dose of oxycodone--which will go away in a couple more weeks when he's all the way done with the wean). That has been a great help. We've consolidated, so although he's getting the same amount of meds, he'll get like 7 at a time, rather than 2 here, 3 there, etc.

MONDAY, OCTOBER 08, 2007 10:16 PM, CDT
Where was I?. . .Sorry. Got interrupted by lots of vomit and crying and trying to get his narcotic refilled that spilled and not finding a pharmacy to compound it. Got it solved.
Back to his appt today. The doctor put it this way: He has two major concerns now, like a 1) and 1a). Those are him settling into a stable place cardiologically speaking and getting the feeding thing figured out. The number 2) thing would be the neurological issues. He has seen kids that actually have food aversions due to all the vomiting and the tube and he wants to try to avoid that but thinks we may already be there. We all seem to be in agreement that Connie's producing excessive secretions due to the tube. The secretions are draining into his tummy and upsetting it causing vomiting. They are at the back of his throat, along with the tube that cause gagging and more vomiting. So, this tube that is supposed to be helping him get calories is actually causing him to lose them. This doesn't mean we can remove the tube. The short term solution is that we offer him a bottle every three hours during the day. Whatever he doesn't take of the 5 oz offered will be tube fed. Overnight, he will have a feeding pump running continuously with the hope that he will not throw up what is given overnight (he seems to keep it down in general when he is asleep or still). We are being set up with a G.I. doctor and a J-tube (tube directly going into stomach) was mentioned. He said that he didn't think anyone would be anxious to put him under right now for another surgery, but that we need to try to resolve this.
His heart is enlarged which is due to the increased work it is doing, not the trauma it endured.
He mentioned switching from Captopril to Enalipril (sp?) but we are changing nothing now. He kept saying he wants Conway to "settle out".
The adrenalyn rush is over for me and the fatigue is setting in. It got to the point tonight where I didn't know how to comfort him and I was too tired to even think of any other ways. Thankfully my mom was able to get him to calm down. I was telling Greg that I'm so tired of trying to come up with solutions. Trying to solve the puzzle he was while we were gone, trying to figure out the feeding, differentiating symptoms of withdrawl, pain, etc. It is just so mentally draining. It seems as if he has baffled them. Neuro couldn't tell us what really happened. No one could. It finally hit me tonight as I was complaining to Greg that THIS IS THE TIME TO CALL UPON THE LORD! I need to turn this desire to figure it all out over to Him and let Him stew on it awhile and solve it or lead us and the medical professionals we have chosen to do so. God does know what the "solution" to Connie's feeding issues is. He knows how to treat his heart and he knows how to rehab his brain. It is a weight off knowing that. I can breathe knowing that.
Doctor also said no kids, no church, crowds, outings, etc. yet.
He wouldn't say Connie looked great. He said he'd give him a "pretty good, considering what he's been through.
First Steps is coming in the morning. I can't wait to hear her impressions.
Today I was calling Mookie "Little Miss Cheerful" and out of the blue, she started toasting, saying, "Cheers!"--over and over. It was too cute.
He's sleeping now so I'm going to take advantage.

MONDAY, OCTOBER 08, 2007 06:48 PM, CDT
We just got back from Connie's first St. Louis cardiology appt post op. The whole office was so glad to see him. We went down for x-rays first and he did great. He got weighed and is now 19 lbs, 6 oz. That is up from 19 lbs, 4.5 oz on Saturday. Then he had his echo and was even better. I told the tech that he was even better for her than he was for his sedated, discharge echo in MI. He smiled at me and rubbed his hands all in the gel on his chest and smeared it on his neck and my face! Dr. Bromberg was in the room during the echo and saw the study and asked for specific views and measurements. Then we went for the pacemaker interrogation. It was time for him to eat so the nurses scrambled around and found an IV pole to hang his bag from. He didn't fuss until they tried to listen to his heart and so we did something else and went back to it. They were very impressed with his behavior and didn't think he was very different from when they saw him pre op! Then he threw up. His feeding was only 1/2 way through. Afterward he felt much better.1/2 hour later he threw up again. Then he fell asleep. The poor kid had a three hour dr. appt just weeks after a huge surgery, and did fabulously. He was awake for alll but the last 15 minutes and only fussed a couple of times (and for good reason--he lost his lunch). Here's what we learned:Cardiac: His aortic insufficiency is unusually severe for someone his age and for someone with his procedure. It is puzzling that it is so severe. It is the reason his skin is cold on his extremities and his feet and legs are very pale white. Dr. Bromberg wants to talk to Dr Bove more about the 'plan' and what Dr. Bove invisions in the future for Conway. Dr. Bromberg said that he'd like Connie to be on less lasix. He wants him to get to 2X per day (currently 3 times). So we will go back in two weeks and assess if he is settled out and well enough to go down. At that time, we will probably add the drug, Digoxin as well. His heart function is good, but it might relieve the workload some and give him less symptoms and help manage his heart failure better. Yes, he is in heart failure. It is an awful word, but we are hoping to get to a point to just tweak meds and such to keep it under control so that he will grow enough and not tire too easily.Hes fussing--time to eat. I'll post more later.

MONDAY, OCTOBER 08, 2007 12:48 PM, CDT
Connie is taking his first nap in his real bed (the crib in his room). He's been sleeping on a port-a-crib mattress on the living room floor and I've been sleeping next to him on the couch so that I could hear him. I thought he might sleep better during the day when we are up and about in his room without the distractions. He spent about 15 minutes looking at his crib mirror and the design on his Humpty Dumpty crib bumper and talking to himself before finally falling asleep on his own. He kept down his last feeding and is getting his 12:30 feeding now. About 2 hours after his 6:30am feeding he threw up a lot of phlegm and curdled milk. I think it is a good sign that the milk was partially digested. I would think that would mean that he is digesting just fine and it is more of a gagging issue. I am also concerned that he has so much phlegm. My guess is that since he's got the tube, it is causing him to have lots of drainage. I know that when I swallow drainage, I get sick to my stomach. I think part of his problem is gagging on the tube, but that he also has an upset tummy when all that phlegm builds up in there. Just my gut feeling. Still don't know how to fix it though.
We're going to the card at 2:30 so he can have testing done before the appt at 3:30.

MONDAY, OCTOBER 08, 2007 08:23 AM, CDT
Kind of a rough night. Got up to give 3am meds, pump and then give 4 am meds and then around 5 the vomiting started. He got very upset and cold while being cleaned up. He had a hard time going back to sleep, even though he was exhausted. Around 6:45 started his next feed and it is still down so far, but he's trying his best to gag on his thumb and finger! Right now he's batting at his gym and moaning a bit. I think his belly doesn't feel well so I'm standing alert for the big one!
My mom found this poem on John's carepage and I thought I'd pass it along:
"I want to share a poem that an amazing heart mother, Stefanie Hunstead, wrote. She better explains what it is like to be one of the 40,000 families touched by this situation."Somewhere...someplace... today... A family is waiting to hear... Is something wrong with their baby? The answers aren't quite clear... This family has entered an unwanted world... And they just don't know what to expect... Somewhere...someplace... today They first heard the words: heart defect. And how they hoped this was not true... And thought... this cannot be... I too... know just how this feels... For one day...this was me. Somewhere...someplace...today... A man and a woman embrace... Their baby is in surgery... They long to see her face... They haven't got to hold her yet... Without...a cord or line... They pace the room awaiting news... And hope she'll be just fine. Prayers fill this busy waiting room... And mom and dad are scared... Somewhere...someplace..today... The tiniest hearts are repaired. Somewhere...someplace...today... A child's growing fast... Smiling,laughing,thriving... His mom thinks...can this last? It's almost easy...to forget... That anything is wrong... Somewhere...someplace..today... Her child seems so strong. Somewhere...someplace... today... A little boy fights...just to live A father holds his tiny hand... His love...all he can give... The doctor's are all baffled... They fear that he might die... Somewhere...someplace...today... A family says goodbye... Somewhere...someplace...each year.. More than 40,000 families will see... What it means...when something's wrong... They'll face a CHD. Today...for just a moment... Stop...remember...reflect... Make time to tell someone you know... "I've been changed by a heart defect".

SUNDAY, OCTOBER 07, 2007 10:47 PM, CDT
Connie threw up his evening feeding big time. He took a little nap and then woke up at 9:30 to tell us he was hungry. I started his feed and since he was awake, Greg heated a small amount (one ounce) in a bottle and we tried to see if he'd take it by mouth. He drank about 20cc's (over 1/2 ounce) and it wasn't even the brand of bottle he likes! It was good for him to associate the feeling of getting full with the effort associated with drinking a bottle.He's playing and relearning like a champ! Tonight he was playing with his activity gym like he first did when he was 9 weeks old, batting at the toys. He was rolling onto his side and grabbing the legs of the gym and moving it. He is now pushing off of you if you lay in front of his legs. He did not do this at the hospital. I even noticed today when I held him when he was upset and it wasn't what he wanted, he arched his back and squirmed as if to try to get out of my arms. That was something he did before surgery if I was holding him and he wanted down on the floor to play.Well, it was another great day at the Beckemeier house! We'll post more again tomorrow after our cardiology appointment.

SUNDAY, OCTOBER 07, 2007 04:36 PM, CDT
Here's the video: Click on the first orange link:
Connie on the Mend

SUNDAY, OCTOBER 07, 2007 03:27 PM, CDT
Well, we're getting good practice putting the tube back in. He was sleeping for his 2:00 meds and feeding so when I started he stirred and in his sleep grabbed the tube and yanked it out before I could even flush the meds through! Then we had to buy more water soluble lubricant and more bandaids. We haven't found anything that keeps his skin from being severely irritated. The side where we placed the tube this am was bleeding when he pulled the tape off. When we put it back in, we went on the other side to give that right cheek a break. Poor fellow!
He didn't throw up that late morning feeding at all and so far so good on this 3:00 one. Knock on wood and thank the Lord!
I just emailed some recent pics of him and am uploading the video now. It takes a while. I will post the link later this afternoon/evening. Great Grandma O'Leary (93 yrs old) and Great Aunt Barb are coming to welcome us home tonight.

SUNDAY, OCTOBER 07, 2007 01:14 PM, CDT
Conway had another great night and settled down for the night around 10:30. He pulled his NG tube 1/2 out around 10:15. He wasn't due for meds until 3 and we couldn't put it back in on a full tummy so we decided to see how he'd do taking meds and drinking orally. We woke him at 3am for his meds which he took like a champ. I think the oxycodone has a cherry flavor. Then he downed 30 cc's of milk before getting tired. That wasn't much (about an ounce) but for him a real improvement. He was due for meds at 4 am so we thought we'd try some more bottle then. Well, he gagged on the meds and threw up both the meds and some of the 3am feed. By the time he was done gagging he was too upset to drink and went back to sleep until 7am. He was happy and content, sitting on my lap on the back porch listening to the birds, so we decided to wait to try feeding until after his 8am meds so we didn't have a repeat of the eating and then throwing up after an hour b/c of the gagging down the meds. Sure enough he gagged on the meds and threw them up along with phlegm. We got 70cc's into him via syringe (dripping it into his mouth and waiting for him to swallow) but he gagged several times and probably lost about 10-20cc's. At 11am he wouldn't take any by bottle or syringe. It's like he's not trusting that what we're putting in his mouth is something he'll like. All he wants in there is the paci. We bought a pacifier that delivers meds and thought we could feed him and give meds that way. Nada. He like it until he got something out of it. We tried a transitional sippy cup as well but no dice. So, after trying for 1/2 hour and only getting 10 cc's into him (a total of 110 over an 8 hour period where he should have gotten at least 300) we had to re-insert the ng tube. It went pretty well. By this time he was very hungry and just wanted some food on his belly. He resisted at first and the tube ended up coming out of his mouth so we tried again and this time he swallowed and it went down. We started the feed at 11:45 and he survived it, keeping it down even while awake!! He coughed a few times about a half an hour after it was finished and even got the hiccups. We thought for sure he was going to lose his lunch, literally. By the grace of God, it is now 1:30 and it is still down and he's sleeping and has been for about 1/2 hour. Celeste is playing at the neighbors, Greg and Mookie are napping and I'm about to work on getting that video up and those pictures emailed out.Thanks for checking in. Have a great day!

SATURDAY, OCTOBER 06, 2007 08:47 PM, CDT
For those that are wondering, YES, we plan to keep this site going. Not only does it update everyone efficiently on how he is doing, it also records the experience that has been and will be his life. What a gift it will be for him to read one day!The updates may be a little less frequent as there isn't a nurse here to give meds and handle feedings and I do like to spend time with the girls when he's napping. Plus, I need to take advantage of the chance to nap when I can too since I'm up a lot at night with his meds and feeds. So, the journals may be updated a little less often.Conway has had a great first night home and an even better day today. It's amazing the difference it has made for him just to be in his own home. The fact that he has a lot of awake time and is content floors me. The fact that he settles off to sleep alone sometimes baffles me. He is truly a different kid. Not to mention the improvement in his physical state. He is squirming and moving more, moving his mouth and grasping toys and bringing them to his mouth. He's sucking his thumb too. He really has done better today with the vomiting too. We have pretty much nailed down that it is just a gagging problem so we do the best we can to keep him still and calm during and after a feed. It is best if he is asleep, but then he doesn't even get offered the bottle. I have a video from today of him playing with his links but it isn't online yet. I'll work on it and post the link on here. Thanks for all the welcome home posts. The emotions from the last 36 hours have been so overwhelming. As I type this he is attempting to roll over. I don't believe my eyes.

SATURDAY, OCTOBER 06, 2007 01:13 PM, CDT
We made it home! The flight was pretty uneventful. However, just balancing his schedule of feeding, medicine and throwing up was trying. He had a superb night. He got lots of rest and held down his feedings. Around 7am he woke up for the day and fussed through his morning feed and threw up about half of it. His home health care nurse arrived right after his next feeding started and all the jostling to weigh him caused him to gag and throw up again. He held the rest of that feeding down. He was awake, alert and interactive while she was here and for an hour and a half after she left. Mary Kathleen brought his links to him and set them on his chest and he grabbed them and put them in his mouth and played just like he used to!!! We then got him tracking with his eyes and moving his head to track. We dangled his toys over his head and he reached up and grabbed them and put them in his mouth. The OT at the hospital told us that reaching while on his back would be very difficult for him because he would be fighting gravity and he's already doing it! Right now he is drifting slowly off to sleep all on his own and has not required constant soothing or movement much today or last night. Thank you prayer...Dear Heavenly Father, thank You for the blessing of Conway's steady recovery and most of all for filling him with Your peace and comfort. Please continue to help him improve his feeding tolerance and ability to eat orally. Help him gain the weight he needs to be healthy and happy. We ask these things in Jesus' name, Amen.

FRIDAY, OCTOBER 05, 2007 01:14 PM, CDT
We're going home! As long as I'm comfortable with him knowing this may not improve, then we are free to go. Dr. Bove has no surgical options at this point to repair Connie's heart. He is too small for a new valve and not far enough out from surgery yet. The main symptoms of A.I. are the digestive issues and fatigue. Also, weight gain and nutrition are expected to remain a concern, not just from the vomiting, but from the heart working harder and burning more calories. Southwest air get ready!!

FRIDAY, OCTOBER 05, 2007 09:43 AM, CDT
we're waiting for the card to talk to the surgical team--once again bove is out of town again. there is some concern as to whether we're dealing with a feeding issue (which we can deal with in st louis) or heart issue. apparently the a.i. deprives the body of adequate blood supply necessary for digestion so his heart could actually be causing the intolerance. they said that the hope was that the ai would have stayed under control until he outgrew his conduit , at which time they would replace it and give him a valve as well. the problem with doing an artificial valve now, aside from the fact that it would be his 3rd heart surgery in a little over a month, the mechanical valves don't grow and the tissue valves don't last long.
Nutrition just came by. Told her our concerns and she said they will talk and try to come up with something. Possily taking tube out and letting him go 8 hrs to see what he'd take by mouth or doing a swallow study. they aren't real confident that he'd do okay looking at his po over the last several days.
good news is he's off sodium and potassium, but not sure if it matters since he's still throwing up. This is not like spitting up. this is face turns red, gagging and vomiting.

FRIDAY, OCTOBER 05, 2007 07:15 AM, CDT
6:45--Connie is asleep but a little restless. Greg is going to head back over to pack a few more things, put a load of towels in the dryer and then drive back to St. Louis.
We kind of (our opinion, void of medical fact) decided that the ng tube is actually what is making Brother vomit so much. It is just setting off his gag reflex big time. I don't know what to do. He doesn't bottle feed well enough or nurse at all that they'll let him go without it. We tried a smaller tube, like the one he had late last week (not sure why they keep switching sizes--I think whatever they grab they put in) so maybe it'll help. I wondered if perhaps we didn't feed him every 3 hours and let him get hungry enough maybe he would actually eat orally. The nurse practitioner will be around a bit later and we'll try to figure this out. I'm not expecting much though.

FRIDAY, OCTOBER 05, 2007 03:40 AM, CDT
I'm going back over now. Greg called and said Connie has thrown up every feeding and hasbeen dry heaving for the last hour. He's asked for a doctor to examine him. . .

THURSDAY, OCTOBER 04, 2007 09:06 PM, CDT
I just got back to the house for a shower and a few hours of shut-eye and to finish up on the laundry. I'll probably have a few hours here tomorrow between discharge and leaving for the airport, but I'll have a little man with me and likely will not be able to get those types of things done. So all that is left for tomorrow is to wash my sheets and load a few more things in the car, pack the milk from the freezer at the hospital, check-out of our room and wait until it's time to leave.
Connie had a pretty good afternoon. He and I spent loads of time outside today when we could. As long as he is kept moving he seems okay. He held down his 4pm feeding and his 7pm feed was almost done and he threw it all up. He was filthy anyway so he got his first big bath since the end of August! I put him in an infant tub inside a big tub and washed him all up. Even got a real shampoo job on his hair. We just had to be careful not to let his incision soak in the water. He doesn't have stitches or anything, but his steri-strips haven't fallen off yet so it's best not to get it wet. Of course, he's coated it all pretty good with puke several times so I'm not sure what the difference is!
Good news: He is off potassium!! Sodium additives have been cut in half and they want to do labs again tomorrow so that if his levels have increased he can be taken off that too and hopefully his tummy will start to feel better. That 7pm feed that he lost didn't have anything in it so we'll see. They are also starting him on Zantac and Reglan. I'm a bit concerned about the Reglan given his Neuro status and history, but it isn't long term. We'll probably stop it after we get home. Same with the Zantac unless it's working wonders or something. The doc that prescribed them isn't set on Connie taking them, he just thought it might help his digestive system in the short term enough to keep us from having to stay or come right back before we got home or something.
Our nurse practitioner says she's going to try to get us out of here by noon tomorrow. I got the name of a pediatric neurologist that is the medical director of ped. neurorehabilitation at Children's. I've already left his office a message telling them I would like Connie to be seen ASAP so that we can prevent a lapse in services, especially OT/PT. I also got the eligibililty forms filled out from the team here so that Connie can qualify for First Steps and hopefully get services through them as well. The biggest hold up tomorrow will probably be getting our discharge RX's filled. I've requested that they draw up the first 12-24 hours worth so that I'm not fumbling around the airport with instructions and syringes and bottles by myself. TSA says that each liquid has to be labeled with the RX and our nurse practitioner offered to have someone help me draw up all the meds before we leave, but they wouldn't be labeled by the hospital, which would cause TSA to be unhappy. So, she's going to try to see what she can figure out with the pharmacy to help me. We got the name/phone of the home health care company coming to the house to check on Connie and the supply company that will deliver his enteral feeding supplies. The home health nurse was set up to come on Monday but they told me yesterday that they'd plan to have someone come Saturday. I'd feel better with an RN coming over on Saturday so they said they'd try to fix it. Besides, we're going to the Cardiologist on Monday and they said home health doesn't like to come the same day you're seeing an MD anyway.
Well, I think that's about all the news we have. In case you haven't read John Robert's carepage, he's leaving tomorrow morning on a leer jet (air ambulance--MI Survival Flight) to Children's Mercy in KC, his hometown. Please pray for safe travel for him and his family.
It's hard to believe that in less than 24 hours we'll be in our own home! It's pretty surreal. I've pretty much forgotten what life was like before all this happened, which I guess is a good thing since it will never be the same.

THURSDAY, OCTOBER 04, 2007 04:50 PM, CDT
They ended up settling for a heel poke to get blood and of course came to do it right after he fell asleep. As soon as they were done making noise and cleaning the other side of the room after our roommate was discharged, they hung a sign on the door saying to keep door closed since a baby was resting inside. I think the door has been opened at least 25 times since then (and it was only about two hours ago!). Anyway, he had just gotten to sleep and been that way for about 15 or 20 minutes when he woke up gagging out of the blue. He didn't throw up (empty belly) but was due to eat again soon. He settled down quickly and couldn't keep his eyes open. He is exhausted. 2 nurses enter to give two RSV shots, one in each thigh. I say he has just gotten settled and she says she's doing it anyway since he was just awake. He settles back down and it gets quiet in here for a minute. I go to warm up his milk and come back and she's back saying they want the bloodwork drawn stat. This is the third person since 1:30 that's going to try to get blood from him. I say I'd rather him rest now. He desperately needs it. Can they come back later. They say okay. I hang his feeding and start it by myself so it isn't late. Five minutes later they return saying they are doing it now. It's time for me to pump and it's a new nurse and she says she'll stay with him while I go pump if I'd like. I'm sick of watching him get poked and no blood so I say fine. Of course, we are trying so hard to keep him calm so he doesn't vomit and right when he starts his feed they want to get blood and upset him. I don't get it! I get back and they say the labs look great (maybe this means we can get rid of the sodium and potassium). I ask if we can get rid of the additives now and they say that since it was still "ordered" and it hadn't been cancelled they went ahead and put it in this feeding. Now wouldn't you make the extra effort to check with the nurse practitioner to see if you can eliminate them based on the new lab results knowing that this baby is having a hard time keeping down feeds that contain them? That's the whole reason they wanted the labs was to be able to get rid of the additives if his lytes were good enough! Who trains these people? Sorry for the vent. I'm just so frustrated and anxious. I was and still am pretty nervous about leaving with these unresolved issues, but now more than ever feel like if he were just home and we could at least eliminate some of the excess stimulation for him he'd have a better recovery.
He's sleeping now so hopefully he'll be able to keep this feeding down. The nurse said she'd stay away until 5:00 (15 whole minutes!) when she'd have to come back to give him more meds and check vitals and such. Ugh. . .

THURSDAY, OCTOBER 04, 2007 03:01 PM, CDT
Bad News: Connie is throwing up at least 1/2 of his feedings. We tried to get electrolytes drawn so we could see if we could come down or eliminate his sodium and/or potassium but with his heart in the condition it is in, it is nearly impossible to draw blood from this kid. They couldn't get a vein and the whole experience was enough to prompt a vomit shortly after. We work so hard to keep the food in him and as soon as a feeding gets started, we go and mess with him. His schedule does not fit into the hospital's schedule. Hopefully going home would help this, but not sure if we want to be at home until he is tolerating feeds better. Now they want to give him his first RSV shot and he's just settling down! It just never ends.
Good news: I fogot it already. Let me think. . .Oh yeah. He tolerated OT pretty well today and even held on to a toy for a whole minute. He was even seen shaking a toy at one point. He took a nap outside this morning. Our roommate move out and we are getting a two month old baby roommate around 6pm. Hopefully he'll be able to rest some before all that starts.

THURSDAY, OCTOBER 04, 2007 06:04 AM, CDT
6am - Another rough night. The other baby in Connie's room cried heavily for a few hours. His mom was having no luck consoling him. Connie threw up at 11pm, but just a mouthful. I tried to keep him calm during his midnight feeding by walking him around the 5th floor. He was calm but while we were walking he threw up big time when his milk was 3/4 empty. I cleaned him up again and wiped down the stroller. After getting him settled down to a clean bed the other baby began his loud crying until about 3am. From 3 - 6am Connie's had spurts of 5 - 15 minute naps with fussing in between. Another 30 minute stroller ride helped out around 4:30 am. He held down his 3am feeding. They're warming up his 6am feeding right now.
I wish I could say he had a restful night, but I think he wants me to give him a stroller ride all the way back to St. Louis.

Greg has been with Connie since 6:30 because I got invited out to eat with Sarah, Tonya and Tonya's mom. We have all been here awhile, longer than planned. Kellen's (Tonya's family) been here since July, Sarah (Johnny) since early August, and us since late August. The tentative plan is that we will all be leaving here on Friday. Boy, this place will be boring without our boys! We got out together to share our trials, triumphs and just general talk about the hospital and our experiences. We even talked about getting together in the future when all of this is behind us and OUR hearts have healed some. We figured Sarah's city is the most central! How nice it was to get out. It was the first time I've been to "main" street in Ann Arbor. You'd never know there was a recession in neighboring Detroit by looking around here!
Connie has done great this evening. Greg got him outside for over an hour! He really needed some fresh air. They've changed his milk to straight breastmilk with no more fortifier (formula) to see if it is any easier on his stomach. I'm glad for that. It'll make it easier at home if it stays that way. Not sure why he needs the extra calories when he's in the 95%ile and everyone comments on how big he is (granted, they are used to seeing newborns).
The possibility of leaving Friday is really imminent. I've looked into flights and it looks like the fastest way to get home (fast being important given the tube feeding and all) will be a 7:25pm flight on Southwest airlines Friday evening. It arrives in STL at 7:55pm (I'll gain an hour, remember). I'm thinking Greg will leave early Friday morning and then I'll take some sort of shuttle or cab to the airport Friday afternoon. The hospital said don't book anything earlier than afternoon and the only nonstop flights leave by noon (I'd have to leave here around 9:30am and that's not gonna happen). We'd better get packing!

Neuro came back after Connie was awake. He was awake for a whole hour and thirty minutes. Not much compared to the last several days. I'm feeling pretty low. I just want him to WAKE UP! When he was awake, he was mad. No playing or smiles. He was agitated the whole time. The neurologists feel like he can stop the dylantin (anti-seizure med) because they don't feel like he is at risk for more seizures, but they don't want to just take him off before we leave. They would feel better if he was set up with a neuro doc at home first and let that doc wean him down under supervision. If they had stopped him maybe a week ago and watched him they'd be okay with that. So, that's good news that they feel like he's going to stay seizure free even after . . .interrupted by the cardiologist that's following him on the floor. Told him all the vomiting issues b/c he just vomited his 4:30 feeding which he didn't get until 5pm b/c neuro was here. He said since he still needs the sodium and potassium tonight that we could back down on the concentration and go back to straight breast milk to see if he did better with that. Perhaps it is the fact that we're throwing so much into his belly that he's not able to keep it down. . .back to the neuro stuff. We are trying to get the names of some neuro docs at Children's in St. Louis. Specifically, one that specializes in rehab issues. Dr. Leiber, one of the docs here, did part of his training at Children's so he has a ton of connections there. So, the plan is to get back and get connected to get rehab going quickly. They feel like the best thing for him is to continue rehab as soon as possible after we get home. They feel like the neuro doc could sort of coordinate this. They want to repeat his EEG tomorrow. Just to make sure nothing really huge jumps out at them regarding abnormal activity. They'd like to do an MRI, but he is no longer a candidate for MRI because of his permanent pacemaker.
Dr. Bromberg's office called and said that he wants to see Conway on Monday. He doesn't want to wait until 10/18 so we are going in Monday at 3:30. Then we go to the pediatrician on 10/16 for Connie's 6 month well-baby checkup and vaccinations (we were gone when he turned 6 months--couldn't get vaxed before his big surgery and had to wait until 6 weeks post-op before getting them). Today or tomorrow he'll get his first RSV shot. Heart kids are at a really big risk for RSV so he has to get a shot every 28 days from now until March to prevent it.
I was gone pumping when he threw up. The nurse got him all agitated, taking bp and vitals and moving him around. Poor baby. It took so much out of him that he's passed out again. They rehung more milk and meds since he threw those up. I want to get this issue resolved before we leave, if for no other reason than it is a MESS! Yet another load of laundry, including that weighted vest. No matter what I do to protect it he finds a way to hit it!

The nurse practitioner came in and said that the echo still shows severe AI (aortic insufficiency), some tricuspid regurgitation, mitral valve regurgitation and moderate stenosis in his new PA-RV conduit.. We'll have to watch these closely. The good news is that his function (the squeeze) is great and his systemic pressure has actually improved. The last echo showed it to be 75% and this one was closer to 50%!

Connie turned 7 months old about two minutes ago. What a wonderful 7 months it has been!
Someone from Neurology came by today after we got back from the echo and checked some reflexes and looked at his eyes. They couldn't get much because he was pretty out of it. His pupils did nothing when they used the flashlight. I gave them the form for First Steps but they said since they haven't been interacting much with him that they may not be the ones to fill it out. I'm confused. Everyone I show it to says they aren't sure if they can fill it out because they don't "know" him that well or whatever. The ones who know him best don't have the credentials behind their names that would qualify them to fill out the paperwork. So frustrating! I just have to let go for now and will just make sure I don't leave here without the paperwork.
He got his first feeding since 6am--he was NPO for the echo-and has tolerated it so far. He's in his bed and I'm waiting for lunch to come.

They need to put me on the payroll here. All these tests and such that they do require lots of work from the mom to keep the kids settled and calm for the exams. His echo lasted almost 2 hours today!! He was given sedation but it did not work well and not for long. It took me and his nurse wrestling his arms and his flailing head and legs most of the entire time. We had to stop the study at one point b/c he woke completely up and cried. I had to pick him up and settle him back to sleep before we could try again. He'd be "out cold" until the tech touched him and then began flailing around again. It was exhausting trying to keep him still. What ended up working was patting his head and holding both hands.
We should hear in the next few hours what they thought of it. The tech said he didn't get good pictures of the conduit, but the cardiologists were happy enough.
Not sure if he'll have OT or PT today. If he's still sleepy (he's sleeping now--now that the test is over!) they may skip him.

Connie had a fussy night. Pretty agitated and not settling easily.
Went for his x-ray. It was described as beautiful. I viewed it on the computer in the room and you can see his pacer wires and whatever they used to reinforce his sternum. Sort of weird looking. They are trying him off the diurel. His labs today showed his potassium was up (a good thing) but his sodium is still too low. Hopefully tomorrow night or Friday AM his next labs will show it better since he will be on less diuretics.
He's been given an oral dose of chloryll hydrate to sedate him for his echo which will be any minute now. They don't do them bedside at this point. He will be taken down to the first floor where it was done on his pre-op testing day.
I gave him all his 9am oral meds today through his tube. Getting good practice for when we're at home.
Nurse Practitioner says to shoot for him going home on Friday. It's possible for tomorrow but kind of a long shot because we want to make sure it was just the sodium making him sick. Since he's still on some sodium, we want to make sure he's going to be doing okay. That and we want to wean him a little more off the pain/agitation meds. Ideally, he won't have to go home on any sodium or potassium and would just have his Lasix, Aldactone (both are diuretics), his captopril (to lower his blood pressure caused by the severe aortic insufficiency) and his Oxycodone and Ativan (both for pain/agitation). I got a meds schedule and it looks like I'm going to be spending my days drawing up and giving meds. Each of these is given several times per day. Ugh.
I hear them looking for him to take him down. Here we go. . .

Connie vomited right after moving rooms. That's the second time he's done that! This time it was all over Greg. He had to shower and have me bring fresh clothes. While he was showering Connie did it again. Once again it was a sodium-laced feeding. We've just got to find a solution to this. Greg made a valid point when he asked me what good the sodium is doing him if he's throwing it up anyway. I left around 11:30 and Brother was trying to fall asleep again on his own.

TUESDAY, OCTOBER 02, 2007 09:46 PM, CDT
Somebody is playing games with us! Greg just called to say that they are working on cleaning a room for Connie to be moved to the floor tonight. So, maybe Greg can get some rest after all. Oh yeah, Conway was awake too when he called at 10:15. So much for that 8pm bedtime we talked about earlier:)
I'm off to bed.
Thanks in advance to Grandma Marybelle for cleaning our house and organizing things before our return. I bet there are cobwebs since the house has virtually been vacant for so long!
Grandma and Grandpa George have been a Godsend in taking care of Mary Kathleen both up here in Michigan and back home. I have been able to focus my attention on Connie's needs because of their help and I know she is in very good hands and is happy and content.

TUESDAY, OCTOBER 02, 2007 08:41 PM, CDT
Connie has slept ALL afternoon and evening. I sure hope that he's not up all night for Greg. He even slept for quite awhile without any weights on him. Did I mention he's wearing his big boy, real jammies? He looks so cute. I got out several other pajama outfits to take over with me in the morning--you know, in case he keeps vomiting. Now that he has nothing attached to him he doesn't need that oversized, itchy gown. I can't wait to hold and cuddle him with real clothes. He's been so peaceful all afternoon and evening I wasn't about to disturb him. He woke up once or twice for new pants and went back to sleep on his own. Greg has him now. The nurses have been very busy on the other side of the room with an emergency of sorts so it is key that we are with Connie at all times. I think it was over an hour since anyone checked on any of the kids on Connie's side.

TUESDAY, OCTOBER 02, 2007 07:12 PM, CDT
Psych! So the powers that be decided that the kid that was going to come here is not anymore and can just go to the floor or whatever so instead of musical beds they are going to keep Connie put (for now!). That's okay. God must be intervening because He knows that Connie's would-be roommate was a loud one!

TUESDAY, OCTOBER 02, 2007 06:26 PM, CDT
Thanks to the Hoffmeisters for all the wonderful treats from the Irish festival. We're saving the gifts from you and Michele for Mary Kathleen to open herself. We also got a Bumbo seat from Julie for Connie to use at the hospital since they don't have but just the one. We are so blessed to have such thoughtful friends!
Guess who's moving out to the floor? That's right. Our boy is going to the floor tonight. It's coming with mixed feelings. He's got two tiny roommates now that make zero noise. Literally. One has parlyzed vocal cords from the surgery and the other has damaged vocal cords. Yes, moderate care is a bustling room, but we've been pretty lucky and so now I'm nervous about going to the floor where we don't know what our roommate will be like. It could be one of the older kids I hear screaming everytime I take Connie for a stroller ride. I sure hope not. I mean, we've kind of had the best of both worlds the last few days: getting the freedom of having "floor orders" but the better care because of a smaller nurse to patient ratio. So, I'm a bit apprehensive. The nice thing is that Greg will be able to sleep a little during his night shift and hopefully if we get out walking papers then he'd be able to drive that day rather than sleeping and waiting until the next day to head home. We'll see. For now, all Connie's belongings that are at the hospital are packed up and ready for transport down the hall.
Connie's follow-up appointment with our St. Louis cardiologist, Dr. Bromberg, is set for October 18th at 10:30am. He is expected to get several tests (basically everything they do before discharge here gets repeated and compared with the baseline that was set here).
I don't feel like roomservice for dinner tonight. They mess up 2 out of every 3 orders! I think I'll run to the cafeteria while he's snoozing.

TUESDAY, OCTOBER 02, 2007 04:55 PM, CDT
Connie threw up his 3:00 feeding around 3:45ish. The nurses were getting ready for shift change so I was on my own. His stroller was soaked so I put down a wet pad and gave him a quick bath on his bed. Just as I was finishing and went to put powder on him, he began peeing on everything. The "real" jammies I was going to put on, his stuffed animals, our care binder, blankets, socks, HIS VEST, etc. I had a whole load for the laundry. Not to mention the sheets under him had to be changed and I had to rebathe him. Not pretty. Of course this was not an enjoyable bath for him as he felt miserable. Soon the nurses, both the one going off shift and the one coming on, came to my aid and brought clean sheets and changed the bed while I dressed him in my lap. He couldn't be put in the stroller as it was full of puke. I settled him back down and put him in bed. He's now wearing his red and white striped, spaceship, glow-in-the dark pajamas. They are sized 12 months and were bought shortly before we left for Michigan. They are pretty snug now. Looks like Brother's gonna need a new wardrobe when we get home! I actually think he may like the snug feel. It's possible it's helping him to calm more.
The nurse practitioner came in and said that we definitely won't get out of here on Wednesday and Thursday is kind of doubtful. She said Thursday or Friday, reminding me that she wants him to be a little more weaned and tolerating it. I told her that Thursday works great for us! I definitely don't want to rush him if he's not ready. He's had a big day and tomorrow will be big too with all the tests/appts/places to go. Maybe he'll need Thursday just to rest and recover from all the stimulation. He's been sleeping since we got back from PT at 2pm, other than when he threw up and got a bath and fussed. Poor boy is so beat!

TUESDAY, OCTOBER 02, 2007 03:05 PM, CDT
Okay, they already changed his echo to 11:00am tomorrow. Maybe now they can do his bloodwork and x-ray beforehand, but we probably won't be so lucky.

TUESDAY, OCTOBER 02, 2007 02:48 PM, CDT
PT wasn't any more successful today. He had been sleeping and did not want to cooperate or be awakened. He fussed during the whole thing and even refused to open his eyes most of the time.
The ekg people came by to remove his holter monitor so now the only foreign object on him is the ng tube! One step closer to going home. Our discharge echo is set for 8am. They usually like to do the x-ray first before they get sedated but since it is so early they aren't sure if he'll be able to get it first or if he'll have to wake up from the sedation and then be able to have the x-ray. I guess it could be entirely possible that he'd be discharged late tomorrow, but I'm not holding my breath. They said yesterday that they really wanted to wean him a little more and make sure he was tolerating the wean, so it still could be a few more days. However, it is a good sign that they are getting all this discharge planning done.

TUESDAY, OCTOBER 02, 2007 01:17 PM, CDT
Connie had a new OT today as his girl, Stacey, was out sick. Since he's getting his discharge testing done tomorrow, we wanted to get an assessment out of the way today. They assessed his hand-eye coordination and fine motor and he rated the equivalent of a two month old. That kind of shocked me, but on the good side, at least he will have an easier time qualifying for help back home. They tried to do vision, but he didn't want to open his eyes all that much. He fussed through most of the session except when he was in the big swing. Even then he only quieted for about two minutes. We came back up to the room and then it was time for me to learn how to place the tube. I removed his old tube, lubed up the new one, measured it and placed it all on my first try. It's nice to have another set of hands there to hold him still. The quicker, the better. Then I checked placement and set up his next feed. He's held it down and done great. He's napping now. He's had kind of a busy morning. Now someone is banging on the wall outside of his room. The commotion never stops here. People have been moving all over and there are empty beds on the floor, but no one has said he'll get one. The downside is we can't sleep when he sleeps. In about five minutes we are going downstairs for 1/2 hour of PT. Hopefully he's more cooperative since he's slept.

TUESDAY, OCTOBER 02, 2007 09:51 AM, CDT
9:20--Connie only po'd about 10cc's. He was hungry and fussed until about 1/2 of his feed was into his tummy via the tube. He settled down after I turned on the Today Show. I guess it reminds him of home.
Wheels are being set in motion for our discharge!! Connie has all his big testing tomorrow--echo, x-ray, blood work, etc. As long as he's handling the wean well enough, we could be out of the hospital as early as Thursday!! We've still got to be trained on ng placement. I'll have to put it in today, Greg has to put one in tomorrow and then I'll put in the Gorpak tube on Thursday before we leave. I feel bad that he has to keep enduring this. He just had a gorpak one placed this am. They are good for 30 days but they want to see us do it successfully. They are also talking about packing up the six tubs of breastmilk that are in their freezer for sending home on dry ice and about setting us up with a home health care company to deliver the feeding tube products.
Note to self: Conway needs some type of weights on his hands to calm them from rubbing his face off!
Thank you Lord for Conway's continued progress. We are seeing the light at the end of the tunnel and know you are the true Light and Life. Thank you for breathing in health to Conway's body and renewing his spirit. Please continue to wrap him in comfort and peace as his recovery continues. In Jesus' name we pray, Amen.

TUESDAY, OCTOBER 02, 2007 06:49 AM, CDT
6:30am - Conway had a great night, except for his 2am feeding. He hooked his thumb in his feeding tube and pulled it out half way through his feeding and vomited. The funny thing is all 3 babies in this room pulled their tubes out last night like they had some kind of protest planned. - Greg

MONDAY, OCTOBER 01, 2007 08:41 PM, CDT
Held down that 5:00 feeding with sodium, but just barely. They are now spreading it out over 6 out of his 8 feedings so hopefully the smaller dose does the trick. If it isn't the sodium, I don't know what we'll do. It's almost 9pm and he's held down his 8:00 feeding too. The thing is, if he coughs just a little bit, which you do when you are recovering from heart surgery and have fluid on your lungs and have been in bed for over a month, then it is just enough to push that ng tube to where it sets off his gag reflex. This game just keeps going. When you are in the hospital, they give you something to help--in this case, the feeding tube to get calories--and it ends up causing something else. It just never ends.
He played and strolled and sat and worked until about 7:20 when I gave him a bath. It was the first bath that he hasn't cried through. He actually laughed a few times and enjoyed some of it. That was nice. I got him all cozy before going to pump and he was too tired to PO any bottle so they tubed it. He got his meds and is not off to sleep. Hopefully for another restful night.

MONDAY, OCTOBER 01, 2007 05:24 PM, CDT
Sorry I haven't updated frequently today. We've probably only been in the room a total of 20 minutes today!
I talked to the nutritionist who felt like the decision to put his feedings on a pump over an hour or more was moving backward. She wanted to take him off the pump and spread the sodium out over more feedings. Well, the next feed was at 2:00. It had sodium (a large amount because instead of spreading it out over 8 feeds, they only spread it out over 4) and he threw it up. He threw it up right in the middle of the lab where they interrogate his pacemaker! He actually had a bm and threw up at the same time. So, I'm down there with the stroller, the IV pole with all the feeding stuff and no diaper, blanket or new gown. The staff down there were wonderful and went and got stuff for me to clean him up with. He was a mess. That kid needs to soak in the tub but he's still on spongebaths for now.
Pacemaker interrogation: Went very well. The tech said that actually his amplitude will be able to be turned down very soon based on what he's doing himself. What that means is that it is requiring very little energy for the pacemaker to help him and when they turn down the amp it will save the battery which will lengthen the time between future surgeries. The longer the battery lasts, the less he'll have to have surgery to replace the battery. He also had an ekg while we were down there. They printed out two of everything. One for me and one for our cardiologist in St. Louis. He is now completely off his sat monitor (the little E.T. probe on his finger/toe) and off of the telemetry machine that monitors heart rate and respiratory rate and such. They did put him on a holter monitor for 24 hours. This is just three stickers on his chest that connect to a little remote control sized thing that he has to keep on for one day. After that he'll have NOTHING!!
Since we got the pacer interrogated, we were free to roam off of the 5th floor. Of course it was rainy and ugly out today, but we went out anyway. He liked watching the leaves blow. PT came outside to find us and we told them all the work we've been doing with stretching and stuff. They walked us to the Rehab area on the 2nd floor and said that Connie can start coming down for rehab. We can do a lot more down there than at the bedside and he'll like it better. OT will probably be down there too. 30 minutes a day, five days per week for each OT and PT. They will write a script for outpatient OT/PT as well for when we are home.
I'll have to cut this short since he just woke up.

MONDAY, OCTOBER 01, 2007 12:49 PM, CDT
Connie slept in today--just like at home! He had to get up for OT and wasn't too thrilled about it. Then he had a blowout diaper so I'm sure he felt better after that. He held down his 8am feeding but later they gave him his multi-vitamin and he threw it up about 10 minutes later (just the vitamin though). He's held down his 11:00 feeding and could barely keep his eyes open while we strolled around during it. He's still in the stroller sleeping as I type. I carried him out to the waiting area for about 20 minutes of our own therapy. I stretched his little leggys and we did lots of 'so big' and patting and singing and arm/leg movement with him looking at a cartoony show. I would never let . . .
I'll have to tell you more about the talk with the nutritionist and with the First Steps Coordinator later. He's awake so we're going back to walking the halls.

MONDAY, OCTOBER 01, 2007 07:32 AM, CDT
7:30am - Conway had a good night. He only woke a couple times and held down all his feedings. He's really starting to get a good separation between "awake time" and "sleep time."

MONDAY, OCTOBER 01, 2007 12:53 AM, CDT
1am - Connie woke up a half hour ago and is just now settling down back to sleep. He currently has one of his old nurses that was with him about 3 days after surgery. She's so happy to see how much better he's doing. Carol, please send me your email again, I'd be happy to put up a web site...

SUNDAY, SEPTEMBER 30, 2007 08:51 PM, CDT
Conway has been awake since a little before his 5pm feeding. He kept it down. He was strolling while being fed again. Then after it was done, I took him to the waiting/lounge area that has nice chairs and a tv. The Colts game was on and I got him out of the stroller and we had about a 30 minute "therapy" session. He sat between my legs, facing out. We played pat-a-cake, itsy, bitsy spider and every other thing we could think of. We kept it very sing-song and did lots of foot tapping and hand clapping and stretching his tight little muscles. I was so surprised that he tolerated it so long. He would even sit completely still if I held his arms in close to his body. For a bit, he watched the game as intently as he used to watch the Redbirds play. We came back in time for his 8pm feeding. He was rubbing his eyes and so tired so I put him back in bed and talked softly to him until he got very quiet. Then I left him alone and he fell asleep by himself. He had a great evening. The best yet. He smiled for nurses and strangers and even went quite awhile without needing his weighted vest/blanket. I can't help but feel so proud of him. I don't think I'll ever look at a milestone the same again.

SUNDAY, SEPTEMBER 30, 2007 03:40 PM, CDT
Connie woke up about 20 minutes before his feeding. His nurse rocked him while I had to pump. He liked that. When I got back I took over and he continued to nap. He took about 25 or 30 cc's from the bottle and the rest went in over about an hour from the feeding pump. He and I rocked while we waited for his feeding to end. He fussed right about the time it ended and I put him in bed to check his pants. He wasn't wet. I Think he was just getting hot laying in my arms so long. He's all sprawled out on his bed looking up at the Lions/Bears NFL game on TV. Awake and calm. This is great. The stroller is standing by, since this may not last long!!

SUNDAY, SEPTEMBER 30, 2007 01:07 PM, CDT
It's been two hours since his feeding and Connie hasn't thrown up!! He got strolled for quite awhile and then the nurses kept an eye on him while I took his vest to the wash. While the vest is gone, we're using a bag of glucose like they hang for IV's wrapped in a baby blanket and laying across his legs. It's helping. He had a bm while I was gone and when I got back I laid him sideways on his bed to change him. As soon as his pants were changed he fell asleep and has been asleep ever since, sideways in his bed, all sprawled out! I didn't dare disturb him since my lunch was coming and I wanted to eat sitting down, not walking through the halls!
I looked at some websites online and found some vests and blankets and such. Those things are outrageously priced. The vests are anywhere from $75-$150!! I found a "shawl" that is fleece and can be microwaved to feel like a warm hug that weighs five pounds and has a jungle print. I'm going to ask OT/PT if they think I should order it. It was $37.50 or something. It looks more his size. The regular blankets that they showed draped over preschoolers were $100. I think that's too big for him. I'll try to post the link to the shawl so you all can see what we're talking about. Our nurse is so impressed with how well the vest has worked for him, laying it over him like a blanket. She said she's going to request it from now on for all her patients who have difficulty calming. She wanted to know the reasoning behind it and I showed her the website where I found a bunch of info and products for sale. She had never heard of it and was amazed.
I think this is the link to the shawl:

SUNDAY, SEPTEMBER 30, 2007 11:26 AM, CDT
So after talking to the nurse a little myself and telling her about his vomiting episodes yesterday evening, we looked back and it looks like the feedings where he vomits are also the feedings where he's given sodium in his milk. This same thing happened when he was in ICU, remember? This feeding he does not get the sodium so we'll see what happens. I told her that in ICU the docs told the nurses to spread the sodium out in small amounts over all eight feedings, not to give it in three big doses. She replied that he'd been tolerating it so far for the last several days and she didn't want to change too many variables. So for now we're just slowing down his feeds. He's not on a feeding pump yet, but we hung this 11 am feed in a bag rather than the syringe. You have a little better control of the speed at which it goes, kind of like an IV. Of course, if he doesn't vomit this time, we won't know if it was because we fed him more slowly or if it was because he didn't get sodium this time. The weighted vest that he loves so much has been vomited on and smells horrible. It was hanging on the side of the crib. I guess they just rinsed it and hung it to dry. He was fussing and wanting out of his swing at 10:30 so I got him ready to go for a stroll, forgetting that I needed to pump. The nurse said she'd take him out, but I guess he ended up getting comfortable. I had changed his pants and put a blanket between him and the pukey vest. I want to take the weights out and go wash the thing, but am afraid to remove it for fear that he'll wake up. He needs his rest after such a trying night. This is like a security blanket. Like Mary Kathleen's bunnies. It would definitely pay to have two of them. I wonder if they are going to let me take it home. Great. I better start researching where to buy weighted blankets or vests. Anyway, he's sleeping now and getting fed slowly from the bag. I'm off to find out how to get another weighted vest.

SUNDAY, SEPTEMBER 30, 2007 10:27 AM, CDT
Connie is sleeping peacefully in his swing now. He looks like he's had a rough night. The nurse said something to Greg about seeing about getting a feeding pump which would feed him more slowly--over an hour, rather than over 20 minutes. Talking to Kellen's mom about it, she said that Kellen had to temporarily have an NJ tube. This is where they bypass the stomach and go into the intestine. That way when he gags or throws up, he doesn't lose his food or meds. Ope, he's fussing. Gotta go.
Be sure to watch the video from the previous post.

SUNDAY, SEPTEMBER 30, 2007 07:04 AM, CDT
The first half of Brother's night wasn't so great. He threw up his 11:00 feeding, this time unprovoked. I'd imagine he's thrown up most of his meds too, which may have led to his increased fussiness until about 3 am. Greg said he slept pretty well after that. He kept down his 2am and 5am feedings and meds so hopefully he's caught up and feeling better. Greg said he tried the baby swing too. I gather he wasn't too impressed. He's big enough that it would probably take a real playground swing to appeal to him!
The video clips of him smiling finally uploaded successfully. Here is the link: Just click on the blue and it should come right up. Enjoy!!
Conway Turning the Corner

Connie had more stroller rides this afternoon. We came back in the room for his 5:00 feeding which he wanted none from the bottle. She tubed it and he fussed while in bed so we decided to hang the tube from the stroller and he got fed while being walked. We came back in the room to refill his tube (only 60cc's fit an one time and he takes 150) and the nurse said it was time for his ativan and would he take it orally. I bragged about how well he took meds at home before surgery so we gave it to him that way so we didn't have to mess with disrupting his feeding. Well, apparently he had some phlegm sitting at the back of his throat and the little bit of liquid I squirted in was enough to gag him. He promptly vomited most of the feed and all of the meds. It was huge. He was soaked. So, I had to get him out and give him a spongebath. Then clean the stroller (think pukey straps!) then get him back in it all the while listening to him fuss. No sooner did we get out in the hall and around the corner and he did it again. This time not as big. Repeat clean-up, back to walking. Daddy came bringing spaghetti dinner over from the RMH and we ate WITH Connie looking at us, sitting in the waiting room outside of ICU. Connie smiled and laughed lots for Daddy. Of course we had no camera with us. When he does that I want to run and show everyone. Alas, the ICU was closed for shift change anyway so none of his old nurses got to see him show off and actually be happy. Daddy went back to the house and Connie and I walked some more, trimmed his fingernails (can you believe they make you clip them yourself and you have to have your own clippers?) and visited in the waiting/play area between 5E and 5W for awhile before taking him back for his 8pm feeding. He was alseep and I needed to go pump anyway so the nurse just kept him in his stroller and took him back in her office area and tubed his feeding. Then when I got back I moved him to his bed. He woke up and fussed a bit until I got him situated and soothed. He's been sleeping since. It's like he's a real kid with a real bedtime and all. I sure hope he does as well tonight as he did last night. Pray that he gets more good rest so he can tolerate going down again tomorrow on his meds.

Connie wasn't weighed last night. This is a nightly ritual which affects the next days doses of diuretics. First the child is given a spongebath, clean sheets and bedding, then weighed with a dry diaper. I don't think the bath thing has happened much since we've been in Moderate Care. Last night he wasn't weighed. When I got here this morning, he looked bigger to me (puffier, that is). The nurse practitioner decided to go down on his Diurel from three times per day to two times per day. He's still on Lasix and Aldactone. They weighed him at 4pm and he is up from 8.4 kilos to 8.8 kilos. That's a pretty big jump for a little guy. They paged Katie and told her, but she just wants to sit on it and watch him. She said his eyes aren't puffy and his hands and feet aren't blown out. So, maybe he just has a big bm he's saving for us! She said we'll reassess tomorrow after he's weighed again.
He fussed during the weighing part and once we got back out to the hallway he was fine and fell asleep after about 15 minutes of strolling. They say once you get out of Moderate Care you never want to go back! Maybe that's his problem. He's had a taste of what lies outside his doorway and finds it much better than what's inside:)

Conway took about 45 cc's again for his 2:00 feeding and the rest is going in his tube. We tried nursing, but it was frustrating him. He's back to his napping. Hopefully he wakes up cheerful like he did yesterday after his afternoon nap.
I talked to his Parents As Teachers educator about getting a referral for First Steps. This is who will evaluate and do early intervention (PT/OT, possibly vision) work with him when we are home. It is for children birth-three years old. Once he is three, if he were to still need it, the school district would be responisble for it. She is going to present his case and do a simple form and give it to her supervisor on Monday. She'll call me back Monday evening to let me know what the next step is. Usually they have 30 days to evaluate him and then determine what he qualifies for. I'm sure the hospital records from Neurology and the PT/OT will help.

He woke up for a minute, right after he heard my lunch was about to come up. So, back to the hallways we went. He fell back asleep in a pretty short time so we headed back to the room. He has stirred a few times but has gotten quiet again on his own with no help. I think I heard him make a bm, but it didn't wake him yet so we'll see about that. He's due to eat again in about 25 minutes so we'll change him then if not before. Lunch came and I got to eat in peace!! For some reason, the movie we took this morning is not uploading properly. Greg got sick of messing with it so he is going to sleep for now and we'll try again later tonight to see if we can't get it on here. Thanks for looking in. . .Erin

Connie went for a stroll a little after 10. He still was a bit agitated until we added his weighted vest. That did the trick. He was due for a feed at 11 so I brought him back and the nurse fed him 45cc's from the bottle. He fell asleep while she was feeding him so she moved him to his bed and tubed the rest. He woke up mad. Then the Nurse Practitioner came in to remove his central line (the one in his shoulder). He did not like that, but now he has nothing going into his body. All he has are four stickers placed on his chest that monitor his heart rate and respiratory rate and the little E.T. light thing on his finger or foot that monitors his oxygen saturations. No more needles. So his feeding took forever to go in the tube and he was still fussy and holding a grudge about getting his line out. The nurse and I tried everything to get him out of that mad, agitated state. As soon as the feeding was done, we strapped him in that stroller and took off. He immediately settled down. Five minutes later he was asleep. We don't dare move him, so he's sleeping in his stroller as I write this update. We took a movie this morning and I think Greg uploaded it when he got back to the RMH. I'll go try to find the link now and post it shortly.
I told Katie, the NP, what I had been told about Connie not getting to move out of moderate care today because of no beds available. I don't get it. A couple of days ago they were trying to kick us out and now they can't get us out. The big reasons I want to go out are so we can sleep when he is sleeping. The night shift is hard for Greg b/c you can't sleep in here. We don't want to leave him b/c they aren't always right there. The other reason is so we can take him outside or at least off this floor. She said that since she had written orders for him to got to the floor as soon as possible, he could leave the floor. As she was putting the orders in the computer, she saw that his pacemaker hasn't yet been interrogated. That means it has to be checked again. They usually do this right before you leave the hospital. She said the earliest it would be done would be sometime next week. So now even when he gets moved to the floor, he won't be able to take rides anywhere other than this floor until his pacer is checked :(

10am - Conway's still asleep. He fussed a bit when they had to stick him with a needle to draw blood, but I was able to settle him down quickly. He looks GREAT, skin color and all. Erin will be here soon to relieve me. I know her updates are a little more informative than mine!

7:40am - Connie had a WONDERFUL night. He's still sleeping and didn't need any extra doses of pain medicine. I think the walks mom took him for tuckered him out.

2am update--Greg called to say that Connie is still sleeping!! He was sleeping since before I left. And to think I was confused he'd get his days and nights mixed up like a brand new baby. I had actually joked earlier with the nurse that I didn't care if his days and nights were backwards. I was just excited he was getting "days and nights" (a sleep cycle of sorts)!

FRIDAY, SEPTEMBER 28, 2007 10:23 PM, CDT
We received a wonderful package a couple of days ago from my cousins in Texas. Yummies for the adults and a new teddy bear for Connie and baby doll for Mary Kathleen. Grandpa helped Mook come up with the name Annie Arbor for the new doll.
Greg just called to say he's on his way over for the beginning of his shift. This should be the last night of someone having to stay awake with him. Once on the floor, they have recliners or little tiny couches to sleep on, but it's better than a hard glider and you can actually sleep some. In here and in ICU, you're not technically allowed to sleep in the room. Good night, and thanks for checking in.

FRIDAY, SEPTEMBER 28, 2007 08:57 PM, CDT
Conway woke up around 7:15pm and is still awake at 9pm!! When he woke up, he just opened his eyes and started moving around, but not in his typical, fussy way. I got up to engage him and he responded to me talking to him by "talking" back. He cooed and even LAUGHED! It was not nearly as animated as he was pre-surgery, but the noise he made and the actions he did with his arms and legs were familiar. I am starting to see my little boy underneath all of this. I got him out of bed and we sat upright in my lap playing pat-a-cake and slapping his feet together. He was making good sounding noises but I couldn't see his expression, as he was facing out. After he first woke up I ran to get his nurse. I was desperate for someone else to see him behaving in such a positive way. I tried to take a video of it, but he didn't "perform" quite like he had at first. He began to get a bit fussy and I think he may have been hungry, since he was smacking his lips. It was now 1/2 hour before he was due to eat. The NP said we could try nursing strictly as extra calories, not to count it as part of his feeds just yet. She said it's okay to try and then wait a bit and give him his normal amount of feeding. So at 7:30 I asked if we could try. We did, but he did not latch on. He acted like a brand new baby who didn't know what to do. It's another thing he'll have to relearn. It was exactly like those first couple of days when the baby is just really disorganized and hectic at the breast. So, we went on a 20 minute stroller ride and then fed him his bottle at 8pm. He drank 45 cc's by mouth and then we tubed the rest. He's back in bed now and just fell asleep on his own, with the help of the weighted vest, side lying. His arm is outside of the vest though, which is a pretty good sign that he's feeling secure, I think.
I saw God's power when I saw glimpses of my "old" baby today. Some days it seems never ending and hopeless and feels like he'll be like this forever, and then days like today happen. These are the days when I can't believe how far he has come and how much improvement he can make in one day. Just the fact that he was awake without crying. The fact that he could be engaged for a few seconds or minutes. The fact that he was 'playing' with his blanket in his fingers on the stroller ride. It's really nice to feel like you are connecting with your child again after such a long time of feeling like he doesn't even know who you are, trust you, or feel safe with you. Even newborns feel safe when they hear their mommy's voice. He hadn't been able to be soothed by mommy for quite some time.

FRIDAY, SEPTEMBER 28, 2007 05:57 PM, CDT
Just talked to the nurse practitioner and asked if we could take stroller rides outside or up on the eighth floor (laps around 5E and 5W and the ICU on the 5th floor get redundant after a couple of hours). I think the more distracting things Connie has to look at, the more he will not think about feeling lousy. She said we could go off the fifth floor tomorrow, once we're out of moderate care. That's right! We're going to the floor sometime tomorrow. She said we could go tonight, but there's no room at the inn. She knows for sure a couple of kids are being discharged tomorrow so we're in like Flynn (is that how you spell that saying?). Then we will have the freedom to walk around outside and give him some fresh air. That gentle stimulation will help him to develop a sleep cycle with awake periods during the day and naps and such. He has to relearn all that. It's a pretty sure thing that he'll go home with an NG tube in his nose for feedings. I'm pretty bummed. I'm hoping it is just short term. He was such a healthy boy before we came. I hope he regains his appetite and endurance for eating in time. I will be trained in how to insert the tube and take care of it and check for proper placement (you have to make sure it's in his stomach, not lungs or intenstines). Looks like I will have my RN when we leave here!

FRIDAY, SEPTEMBER 28, 2007 03:54 PM, CDT
Okay, he fell asleep just in time for PT to show up to work with him. I told them all about his big adventure and they decided to leave him be, but when he wakes up, he and I are going to work on sitting up some and me holding him facing out and bouncing a little. We want his trunk to get a little work today.
Since he's asleep, I've got time to tell my story from this morning. Here goes:
So I knew that after I dropped Dad and Mary Kathleen off at the airport, it would be time for me to pump again. I brought my pump with me and we have an a/c adapter so I can plug it into the adapter and then the adapter into the lighter. I got back on the highway heading toward Ann Arbor and planned to get off at the first exit to look for a nice quiet place to pull over for 20 minutes. The first exit didn't work out, so I went to the next. I found a building back off the road that looked like it used to be a bank but the windows were boarded up. There was an apartment complex nearby on the other side of a cement wall. It seemed perfect. I pulled up under a shady tree, turned the car off and got busy pumping. About five minutes later a police car pulls in and stops behind my car. She radios in my license number and then comes up to the window. I roll it down and tell her how embarrassed I am and the whole story about what I was doing, why, all about Connie, etc. She and I laugh and she wishes me good luck with my baby and leaves. Several minutes later, another patrol car pulls in but drives by and leaves. Finally I finish pumping and I'm putting everything away and go to leave when I discover that my car won't start. Apparently I had drained the battery dead with my pump! I don't know where I am or anything. I called information to get the number for the police and I gavve them the name of the police dept that was on the side of those patrol cars. I tell them my whole story and they tell me they can't help but they can transfer me to a tow company. I then tell the tow company what happened and they say they'll send out a truck. I call my friend while waiting for the truck. Just then, a rather shady looking character comes out of nowhere and is heading for my car. Where are the police when you need them? I tell my friend about it. My window is up, doors locked. I can't drive away. My battery is dead. He asks if I'm stranded. Given his appearance, I reply that I'm fine and that the police are on their way, hoping to scare him off. He starts to walk away and I exhale. I was sure that since he saw me on the phone he wouldn't bother messing with me. I was wrong. He turned around and came back up to the window. I just knew that I was about to be raped and murdered and no one would find me for weeks! He asks if I want a drink, motioning his hand to his mouth like he's drinking from a bottle. It is not even noon! I don't know this person. What is going on?! I reply that I'm fine and am just waiting for the police. He then asks if I'm married. I reply that I am and I'm not interested. I thought twice about showing my ring, for fear that he'd have a reason for robbery or something. There is no one around and I'm starting to get really scared. My friend says to hang up and call 911. Isn't it something that in the middle of the situation, it never even crossed my mind to call them? Well, I didn't have to call, he walked away. Another several minutes passed and I tried the ignition again and it worked! I got out of there so fast. On my way out of the lot, the tow truck pulled in. I rolled my window down and told him that I gave it some time and it started, although hesitantly. He said that was great and wished me luck. So, we've had quite the day.
I got a call earlier that our travelers landed safe and sound in StL. Apparently Mookie was a great passenger again. She was very happy to see Grandma and told me about eating peaunuts on the plane.

FRIDAY, SEPTEMBER 28, 2007 03:13 PM, CDT
Sorry that there hasn't been an update in awhile. We are kind of at that stage of the withdrawl where we need him to fight through some of it, so to speak. We just can't keep sedating him back to sleep every time he gets fussy. The nurse practitioner recommended that when he wakes up mad we try to play with him and distract him. She said he won't like it, but we should try anyway. I got to the hospital around 12:30 or so after taking Mook and Grandpa to the airport in Detroit. He was fussing when I came in and I asked if we could try a stroller ride. Kellen's grandparents said that helped him when he was going through the rough part. So, we've been strolling the same hallway on the fifth floor for the past 2 hours! As long as the stroller is moving, he's content. The second I stop to talk to another mom or show him the fishies in the aquarium, he goes after his eye with that right hand and starts kicking and getting mad. So, we just don't stop. We did go back to his room for his regular dose of medicine and to get his feeding, but other than that we've been out and about. I'm actually shocked that he handled it so well sensory-wise. We have had to keep the lights off, door closed and curtain pulled in his room this whole time. He has detested the light or any noise other than some white noise. The hallway is hustle-bustle and bright lights and lots of noise. The man rolled a big, noisy trash can right next to Connie's stroller and he didn't even flinch. Connie was awake the whole stroller ride, just taking it all in. That is the longest he's been awake since AUGUST!!
My lunch just came (eating is low on the list of things to do--if he's fussy, we just keep doing what it takes to soothe him). He's actually laying in his bed watching the channel that tells you what channel is what in the hospital and the background music is classical. I had him all tucked in like they say he likes and he completely released himself from that position to lay flat on his back with one arm up by his head and one by his side holding blue bunny elephant. He kicks and squirms every now and again, but is not fussing at all. One thing that may be helping is a weighted vest. We're using it like a blanket and the thought is that it may help him to feel more secure and help with those neuro movements and the agitation. Seems to be working pretty well, but he squirms his way out of it often.
So, although he had a rough start today, I think we're heading in the right direction. I can't believe he is awake and not screaming! This is progress.
When I have more time, remind me to tell you about my trip back from the airport this morning. It's a good one. . . .

FRIDAY, SEPTEMBER 28, 2007 09:36 AM, CDT
Conway's feeding tube was accidentally pulled out at 4am. He really fought getting a new one insterted. The nurse put in a 30 day feeding tube in this time so it won't have to be changed every 3 days. Conway's had a very rough go of it since 4am. He's been agitated and crying most of the time. He'll take 2 minute naps but keeps waking up crying. We finally decided to go ahead and give him a dose of morphine at 9:30am. He's now been quiet for 10 minutes.

FRIDAY, SEPTEMBER 28, 2007 07:02 AM, CDT
Connie had a pretty decent night. He got an extra shot of ativan. He got upset around 1am and Grandpa got to hold him and rock him until about 2:30 when he got upset again. That's when he got the extra meds.
Checking the weather forecast, flight information and getting directions to the airport now. Will check back in later. . .

Right before dinner we got very fussy and crying a lot. The deep pressure trick seems to work, but as soon as we stop, the fussing starts back up! The PT guy mentioned that they have a special neoprene type suit (I'm picturing a wet suit for some reason) that they may put him in which would hold him in tight and give him that secure feeling he's craving. He says Connie's got to relearn how to soothe and how to be soothed. They say bringing his hands together in the middle helps and it does. So does lots of pretty rough patting on his bottom.
He's resting now. The only PRN meds he got tonight, despite the rough time was some benadryl. It seemed to help a little, the nurse thinks, but I had to rock or pat him to keep him calm. One thing that throws our assessment of how well it worked was the fact that they messed with him not long after it was given. His central line dressing had not been changed since 9/20 (and I think they are supposed to be changed every 4 days) and the skin under the tape is starting to break down. It hurt so bad to have the first tape removed. Poor baby. Then he was too upset to eat. He wanted it and started verociously taking the bottle, but tired very quickly. We tubed the rest.
Grandpa is coming on for his shift soon and then Greg is going to take the morning shift while I drive Grandpa and Mary Kathleen to Detroit to the airport. They are going home. Please say some prayers that we are not here too much longer as the separation from her will be excruciating for us.
God, Thank you for the pretty stable day today. You have blessed Connie with some relief and showed us ways to help him cope with the effects of withdrawl. Please continue to envelope him with your mercy and love and allow his body to detox from these medications safely and painlessley. We come before you asking for safe travel home for Grandpa and Mary Kathleen tomorrow and that you'll continue to help Greg and I as we muddle through this experience. These things we ask in your son's precious name, Amen.

I also wanted to add that I took a few pics recently but haven't had a chance to upload anything to snapfish and email them out.

We didn't change anything with weaning his pain/agitation meds today. They decided to leave him be since he had such a rough day yesterday. Their overall plan is to try to wean 10% each day, and to alternate days. This means we'd wean 10% of the oxycodone one day and then the next go down 10% on the ativan. If he was doing really well with it, they may try to go down on both on one day. It is for sure that we'll do some weaning at home.
His weight was up some today. We are keeping the oral only lasix and we'll just watch closely. We want to find a balance. He's still on the diurel for drying him up some. The goal would be to get him home on just lasix because the diurel is so bad about stealing all his potassium. He was low again today, despite the oral potassium additives. They ordered potassium iv supplements today. We hope to not have to go home on supplements. They taste horrible.
When we get to the floor, hopefully by the weekend, our stay will be shorter than our stay in the other two units, we think. We will have to have testing done before leaving--echo, ekg, chest x-ray--and they all have to be clear. The main reason we're still here is his inconsistency with comfort. They don't want him like this at home.
OT came by this am and he sat in the bumbo seat. He was not happy about this. It was right after he drank 30 cc's by bottle and struggled while doing so. His sats dropped and his respiratory rate skyrocketed. Eating is supposed to be a positive experience so we stop when he shows signs of struggling. He cried while on the bumbo. She tried to see if he would play with toys on the tray and tried to assess his neck/head control. I told her that he had played some this morning with his pacifier. PT came by in the afternoon and did more bumbo sitting. He still was unhappy, although not nearly as mad. It is very hard for him. He gets out of breath easily, especially when crying. We adjusted the straps on his boot splints and since he is still pointing those feet downward, he's keeping the splints for now. We hope that as he is awake more, he'll only wear them while resting. We found that he is better soothed while on his side when we apply deep pressure over him, even his head.
The pacemaker people came by and talked about once a month sending an ekg or something over the phone to the doctor. They said it only works over a land line. Oops, guess we'll be going to the neighbors to do that!
Things seem to be moving toward getting out of here sometime in the next week or so. At least people are mentioning the words, "When you go home. . ." That's a good thing.

Connie had a pretty good night. He had to be given a bit of extra meds. At 5 am he woke up pretty miserable and after his dose, it took about an hour or so for him to settle back down. I feel sorry for the 19 year old girl sharing this room. I don't know how she can sleep.
OT just came by but we asked them to come back later since he's settled now and had a rough early part of the morning.
My breakfast is here so I'm going to go eat. The nurse that had him yesterday who wouldn't give him any PRN meds is back with him today. She was quick to let me know that overnight he had some extra stuff and I was quick to let her know that both the pain service and the nurse practitioner think he needs it. The she changed her tune and said she didn't doubt it.

Okay, now my Irish is up. I heard one of the cards in the little nurse's station talking to the nurses about Connie and whether or not he should be moved to the floor. He was arguing that he warranted closer monitoring b/c of his withdrawl issues. Someone commented something to the effect of, "Well, Mom is here all the time." He answered back with, "But it isn't her responsibility." He said he'd talk to me and get back with them. He came out and asked if I'd heard anything about when he'd be moved out and said that the reason he was asking is that someone higher up is asking for a bed and wants Connie to be moved to the floor. I told him that the NP told me he wouldn't be moved until possibly the end of the week if he was doing well. Considering today was not so hot, I'm not even sure if that's still the plan. So, after I told him that, I added that I'm concerned that with me having to leave him to pump every three hours, I was very leary of him being on the floor with no one around. Tonight while I was sitting here he started coughing and I looked up at him and he had pulled his NG tube half out and it was coming up his throat making him cough. Who knows how long he'd have sat there coughing and possibly aspirating (it was during a feed) if I was gone pumping and he was on the floor. I reminded him that we were paying for him to be watched and that Connie shouldn't be given less care just because his family is involved in his care. He agreed and told me that he felt that Connie needed to be watched and that he wouldn't be moved before the end of the week. Geesh. . .

Pretty rough evening. We gave him a prn dose of iv ativan an hour before his regularly scheduled oral ativan. Still not as calm as yesterday, but definitely resting better now. He has been too exhausted to PO any more feeds so we're tubing them. He's just not interested in even trying. Hopefully if he can get a decent chunk of sleep he'll be able to PO some tonight. Mary Kathleen came over to visit Connie after dinner tonight. She shared my baked potato and chocolate chip cookie. Really she mainly ate sour cream and butter! Child Life volunteers brought around newly donated books and I got one for Mook about tadpoles turning into frogs. It's got fun textures and illustrations.
I gave Connie a bath and changed his sheets. I noticed a white circular spot on his back and wondered if it's the beginning of a bedsore or something. One nurse, not his, took a glance and didn't think it was anything. She said we might try to keep him off of it. Next time he gets his pants changed our nurse will take a look.

Shift changed over at 4pm. The good thing about moderate care is that you don't have to leave during shift changes. He was crying when I came back from pumping but his new nurse was soothing him. We talked about the plan for the evening and she is very on board with trying some prn doses or giving motrin. I described his reaction when I lift his legs to change him and she agrees that he probably does have some pain. We'll try the motrin and if it doesn't work, we'll know it isn't pain related but rather withdrawl related. She's been around the last two nights so she kind of knows him. She said she remembered him being much more settled yesterday afternoon and evening and that is her goal today.
Today is Kellen's 2nd birthday. His family had a party for him and invited several families that they've come to know along with the staff that has become so close to him. He has been here since July. You may remember me mentioning him. He came for what was supposed to be his third and final heart surgery and ended up with major neurological complications and brain surgery. Today he sat in a high chair with nothing connected to him and ate icing. What a miraculous recovery he's had and continues to make! Even when we see suffering all around, God reminds us of his almighty power.

Conway just finished with his OT therapy session. He didn't grab and play with the links she offered him. They used to be some of his favorites. He did grab onto her finger though and he looked at her a lot. It was time for him to eat so we were all set to let him show off his amazing bottlefeeding skills but he balked at that. She said it is very common to PO every other feed at this point. He is just too tired to do it every time. That is exactly how he seemed. He was just exhausted after trying to hold his head up with support. She says she thinks he has some control, but he just can't find the middle. Tomorrow we're going to try the bumbo seat some. I told her we'd tried the bouncy chair once but he was just too big and never got comfortable or happy. She said that it wasn't age approriate anyway and he needed to be an active participant not a passive one. The whole hospital only has one bumbo seat so we can't keep it bedside to work on and off during the day with him. That's a bummer. I may send Greg out to buy us one and then when we leave we'd just donate it. She was pleased with his hands and said that he doesn't have to wear the splints on his hands anymore!! He's keeping them on his feet for now. Progress, not perfection, baby! He no longer has his thumbs curled in tightly with his fingers wrapped around. He's nice and relaxed.

Today is getting a little frustrating. Connie doesn't go still more than a few minutes at a time. Not as fussy as two days ago, but not as peaceful as yesterday. This nurse seems hesitant to give him any "rescue" doses (meds other than the ones scheduled at regular intervals) even though she believes this behavior is due to drug withdrawl.

Connie just took another 70 cc's PO (by bottle). That was great. Maybe that effort he expended by eating was enough to wear him out a bit more to get some decent rest. He looks like he's starting to settle out a bit better.

Connie has still been restless and agitated most of the morning. He's not particularly fussy or crying, just constantly moving. It has really been noisy. Once he settles, they make noise and he stirs again.
His chest x-ray looks better today. Just a little junky on one side still. We're putting a vibrator under him to help loosen it all up. We're going to try one dose of his lasix orally today and see how he does. It isn't as effective as iv lasix so we don't want to completely switch over until his lungs really are clear.
Pain service came by and said that if he's consolable then we're keeping him another day or so where he's at before weaning anymore. She said if he just doesn't settle, we can PRN (per nurse) give him an added dose of ativan or morphine. I really think if it weren't so darn loud and hectic in this room he'd be better able to rest. He didn't need any prn doses of anything extra yesterday or last night. They said it's not a failure to need it though. If he needs it, he needs it. I'm just going to watch him close and see. Carol, his nurse seems to think he is very consolable so she is hesitant to add anything right now. We wondered if his splints were upsetting him, but we've kind of ruled that out.

During Grandpa's shift Connie got a little restless swiping at his face again. He settled down about an hour later and rested for about 4 hours. Then he started crying and settled down after about 10 minutes. He's been restless for the last 1/2 hour that I've been here, but it's awfully noisy and lots of hustling and bustling with the shift change and the stream of docs/staff coming in to look and talk to the guy next door.

Guess what? Connie drank 70 cc's from his bottle at his 8 ish feeding. He had been up and had just dozed back to sleep when it was time to eat so I picked him up, sat in the rocker with him and offered him the bottle. He took right to it and made quick work of the first two ounces. He ended up taking a little more before getting kind of tired. We sent his meds through the ng tube and then poured the other 50 cc's in. I flushed it all by myself, changed his poopy britches (first bm I've seen since my noon shift began) and settled him back into bed. He's laying there with his hand over his face, sucking away on his pacifier and putting himself back to sleep. No constant patting or shushing required. He looks funny 'cause his red lighted pulse ox monitor is glowing right over his face. What a great day! I hope these docs and nurses get Connie's grown up roommate all taken care of and leave the room. I think he wants to sleep since they just turned the light off over there.

Connie slept the whole time I was gone. A few minutes after returning he fussed a bit. I changed his pants and got him turned and situated again. He slides down his inclined bed constantly! He's sleeping again now.
He got a new roommate while I was gone. A 24 year old transposition patient who I believe is getting a pacemaker. He's been seeing the cardiologist downstairs for 24 years so I guess they let him keep coming even though he's no longer "pediatric". Kind of weird to see such a big person in a room with no one else over the age of 6 mos.

Connie has had such a good afternoon and has the same nurse that he's had for the last three days so I felt okay leaving him for an hour to go have supper with the family.
From 12:15-6pm he woke a few times signaling the need for dry pants. He wasn't awake enough for his 11 or 2 o'clock feeds but at 5 we gave him some and he inhaled it and wanted more! Most of it he got in the tube b/c he was sleeping when we started but after he woke up we saved the rest so he could have a taste and he acted like he'd waited his whole life for it. He fussed a little more after he had two big wet diapers (lasix induced) and once changed started settling down again. At one of his awake periods, he lay there "playing" with his new gorilla from the Sundman's. I noticed he was noticing the pulse ox monitor (the little red light) on his finger and so I thought he might like to feel the soft texture of one of his toys and look at something other than the crib rails. I put 'Rilla's arm in his hand and he squeezed and felt the fur several times. It was like a newborn learning about their fingers and how their hands work and the fact that they have hands. Then he got tired again and fell back asleep.
Thanks to Jenni and Tiana for sending up the "taggie" pillow and blanket square and glo-worm. I can't wait for him to wake up enough to be interested in toys more than he is now.

The Nurse Practitioner, Kim, just came in. We talked for about 15 minutes about Connie. She said that Pain Service actually raised his dose of oxycodone today. She said that if he continues to do well, he may go to the floor at the end of the week but she is in no hurry. He warrants more 'watching' still at this point. We need him to be to the point where he has some periods of wakefullness where he is not fussing but peaceful. She said he could actually go up in his feeds to more milk at one time. She said we may be able to try nursing and then if I pump afterward we'd kind of know how much he got and give him some by bottle or tube to make up for what he didn't get. He got a multi-vitamin added today since he is exclusively breastfed and isn't getting any sunlight. We don't want him to be Vit. D. deficient. That poly-vi-sol stinks so bad. I bet he's glad it can be put in the tube and he doesn't have to taste it. He's also getting potassium and sodium addded to his milk. He's tolerating it all very well. I'm actually surprised b/c they say both of those tend to upset tummies. We got to talking about how he still has a lot of recovering to do. She said something that I guess I kind of knew but I forget a lot. She said, "He had the 'biggest' surgery you can get." Heart-wise, his condition required the most intense, difficult procedure that can be performed on the heart, according to her. Recovery from that is quite a process.
OT service has been reordered (was supposed to be last week!) so they should be coming to see him. We want to ask about bottle feeding and try working on that some to get it to improve. We don't know how much we can expect from him at this point since he's on sedatives, but maybe they can help us get an idea of whether or not he will be able to nurse/bottlefeed again well enough to go without the tube. He sure sucks that pacifier well enough that we're fairly confident his suck is just fine. Since I planned to already be back home and starting him on solids by this point, I want to ask how to begin that or see if that needs to be evaluated at some time. I don't want to get ahead of things too much, but he'll be 7 mos old pretty soon and I think most kids are starting solids by that point. Again, I'm not sure what capabilities we'll have in this department given whatever is going on neurologically, but we want to ask nonetheless.

This last feeding he did not get fussy. He may have had some gas. I'm wondering if he's a bit constipated again. He is calm and awake right now. His eyes get heavy and he closes them for a bit. Then I'll look over at him and he's just looking around and being quiet. I think he's eavesdropping on the nurses. Some are SO LOUD!! We had a great nurse last night. She put a sign on the door telling people to go around the other moderate care entrance and keep the door shut since there were sleeping babies inside. On the floor he would only have one roommate and not two like here. Plus, here it is pretty active 24/7 and on the floor they try to make the nights a bit more quiet, I think.
Mookie is taking a nap and when she wakes up Greg is either taking her to the park across the street from the hospital complex (a new one she hasn't seen yet) or maybe to the hands on museum. The RMH has free entry passes into lots of attractions so hopefully we can sit down tonight and plan out some fun things for her to do.

Grandpa took over at 2:30 am last night. Connie was sleeping pretty much the entire time I was here, other than when we had to weigh him. I held him and rocked him after that so his nurse could give him clean sheets.
Greg took over around 9am and Connie had a couple of rough hours. I got back at 12:15 or so and he's been asleep ever since.
They upped his milk to 22 cal (adding some formula, but not as much as before). He seems to be tolerating it, but gets a little fussy when his feeds are going in his ng tube. Pain service came by and said they are going to try to wean him more slowly than normal kids. Hopefully that will help. He is currently on 5mg of Captopril, three times per day. That is for his aortic insufficiency. Last night they were adding sodium and potassium to his milk, but he tolerated just fine, no spitting. He still isn't drinking much from the bottle.
As the nurse last night put it, what he needs most right now is to eat and sleep. If he doesn't get those two things, he can't heal and recover. There's time down the road to wean him off the meds at a pace that's tolerable for him.
There's been some talk about going to the floor today. No confirmation of that. The nurse says there are orders, but she doesn't know anything until her charge nurse tells her so.
We've talked to some other families here and they said that the shift rotation that works best for them is for the mom to be here during the day because that's when docs are here, pt, ot, all of that. I think we're going to try me being here most of the day/evening and then going home and Greg and Dad splitting the night shift. Maybe Grandpa from 10-2:30 and Greg from 2:30-7. I'd be back at 7am in time for rounds, etc. Hopefully then one of the guys can bring Mookie over for lunch with me and if the baby is settled, we may all eat dinner together too. This will help the nurses and doctors better too if they are communicating with the same person each time. Also, it is helpful when they come in if the person watching him has been here a good enough chunk of time to really gauge how he's done and what his response has been to meds/feeds/etc. Nothing is set in stone and we're trying to be flexible and just figure out a way for us to all get a bit better rest and give more consistency for Brother. We'll see!

Conway got a dose of oxy at 10pm and has been asleep since 10:20 with just a few positional changes here and there. He's actually been sleeping without constant flinching and flailing around. Of course, as I write this he is stirring quite bit so I'm gonna stop and go knock on some wood.

MONDAY, SEPTEMBER 24, 2007 10:05 PM, CDT
Focus on the good: Connie has been playing with his hands some, raising his legs up rather than kicking them in frustration and not crying. We got moved to a room with working air conditioning at the RMH.
We'll evaluate the situation in the morning and try to tweak his treatment based on how he's feeling.
So far it looks like he's got the same nurses he had yesterday evening and night so that is good that they will have something to compare his behavior tonight to.

MONDAY, SEPTEMBER 24, 2007 07:23 PM, CDT
Hi all, Greg here...
It's currently my shift with Conway. It's interesting, whereas before he was agitated AND restless, now he just seems restless. He's definatley not in pain in my opinion, but he sits still for 5 to 10 seconds and then flails his limbs. He's stopped rubbing his face which is good.
I've had restless leg syndrome since I was a boy. I remember going to the opera with my mom and I just couldn't sit still in the seats because of that awful slow electrocution feeling in my leg.
I swear it seems to me that this is what Connie seems to be going through. He's very content for a little while then just has to flail as if to get rid of the feeling. My gut sense is that this is part of the withdrawal. The Nurse Practitioner came in about a half hour ago and said they're going to give him Oxycodone every 4 hours to help ween him off the Morphine which he stopped abruptly yesterday. Nobody seems to be able to tell my why he was stopped cold turkey, but everyone agrees that this should never happen. sigh...
I'll keep you posted,

MONDAY, SEPTEMBER 24, 2007 01:08 PM, CDT
I left after the morphine should have taken effect. It didn't. I think Grandpa and the nurse were trying to determine if he could get some benadryl because it seemed to help overnight.

MONDAY, SEPTEMBER 24, 2007 01:07 PM, CDT
Connie has been quiet, but still agitated and restless. He doesn't stop moving and rubbing his head. Nurse Practitioner says it must be withdrawl and so we gave him a little morphine just now to see if it takes the edge off. If so, we'll know he is having withdrawl. If not, I don't know where else we'll turn. We've just got to find a way to get him comfortable. We'll see. It should take effect in the next 10-15 minutes. A harpist came in this AM and played for awhile. It was nice, but didn't do much to soothe him.
The loud nurse is back from lunch.

MONDAY, SEPTEMBER 24, 2007 12:33 PM, CDT
He has been fussing more. His nurse and I think that the oxy should have taken care of any pain by now. We don't think he is in pain unless he has some constipation again. What the nurse practitioner, nurse and I decided was that we should add a little extra ativan on top of his scheduled ativan to try to decrease his agitation. Hopefully the two crying roommates leaving for an hour or so while they go down to surgery will decrease his agitation as well. Poor little two year old from El Salvador is probably starving. She's waiting for her pacemaker implant too. Nurse says that's (complete surgical heart block) seems to be happening a lot lately.
Found a possible cause for his inability to drink much from a bottle and some fussiness. He kept yawning and spitting out his pacifier and when his mouth was opened, I noticed his ng tube coiled up in the roof of his mouth. He's probably been trying to clear that feeling out of his mouth/throat since the tube was placed yesterday afternoon! I told the nurse I thought it looked funny and she pulled it immediately. He wasn't finished with his feeding, but only had about an ounce left so we may just feed him a little early next time. We can't replace the tube on a "full" stomach.

MONDAY, SEPTEMBER 24, 2007 11:34 AM, CDT
Back for the late morning shift. Connie slept for a good chunk of time this morning but on que, woke up when I arrived. It was time for his feeding. The nurse tried this time since he was so fussy and hasn't taken the bottle well from me. He took 20 cc's but fought it the whole way. We tube fed the rest of the feeding for him. He was ready for his dose of motrin and also got some oxy. By the time I was done pumping he was settled back down and resting. Nurse Michelle got him situated and straightened up his crib and got him fresh blankets. Maybe he's like his Momma. He just can't stand to be in a mess!
Now the neighbor baby has about 5 loud docs and nurses standing around debating about the monitors. I am crossing my fingers he doesn't wake up and fuss.

MONDAY, SEPTEMBER 24, 2007 07:46 AM, CDT
Good morning all! Greg here. I relieved grandpa about an hour ago. He said Connie's had a wonderful morning. He's been resting peacefully for the past 4 hours or so. He looks hilarious. He's got his blue-elephant-lovie-blankie wrapped over his eyes and his arms are stretched out to his sides. His current nurse, Stephanie, is very caring. So far I have been impressed with the moderate-care staff as compared to the ICU staff.
I'm currently writing this from Connie's bedside as his room has internet access. When he wakes up I'll try to teach him to maintain his own web site so mom can get some much needed rest.
He's still quite fussy when he's awake, rubbing his face and eyes every 5 - 10 seconds and moaning. The doctor said this is probably due to withdrawal.
I held Conway for about 6 hours total yesterday and it was AWSOME. He is definately consoleable. Still waiting for him to smile though...
Hmmmph... a nurse just walked in and asked me to put out my cigarette and finish my beer so gotta go!
All my love,

MONDAY, SEPTEMBER 24, 2007 07:16 AM, CDT
Night shift report: I got over abotut 8:30 or 9pm. Connie was sleeping in Greg's arms. He woke up very mad. It was time for him to eat. I was trying to calm him down. Our nurse was busy so Greg got the other nurse and she got his bottle ready. She put in his potassium supplement so he wouldn't drink it. I can tube feed him but they didn't have the setup ready. I asked the other nurse and she said our nurse would be over in a bit. It had already been 45 minutes. When she finally came over to help, we got to talking and it sounds like a large part of his neglect was due to the fact that he was transferred right before shift change. His nurse that came on at 4pm got a report from someone who had only spent about 10-20 minutes with him. Therefore, it wasn't too detailed or accurate. It wasn't until 10pm that we realized he had gone all day, the day with his morphine drip turned off, without anything round the clock. I didn't know that the withdrawl would show itself after 1/2 a day. I guess I thought we'd have seen it sooner. I kept asking all morning, but he wasn't tremoring or anything. By last night, he was shaking his head, had a high heart rate, even when not crying and yawning a lot. He did settle down and stop crying after the oxycodone, but he never got still and peaceful. Every few seconds he'd try to scratch his face, move his head around an squirm. The doctor was called down and ordered a little morphine to see if it was withdrawl. We gave him 1/2 dose and even tylenol (we try to stagger it with the oxy). Then we thought he was itchy to the morphine possibly, so we gave him benadryl. By this time he was no longer quiet and stirring. He was starting to cry again. It wasn't his pants. We took his temp and it was climbing. We put a cool cloth on his head and kept trying to talk him into calming down. I was relieved at 2:30 by Grandpa. After his second dose of benadryl and some motrin around 3 or 4am, Grandpa reported that he finally settled out and slept. His fever went down and according to Greg, he's been sleeping well.
The hard thing is trying to figure out what is bothering him. It could be his stomach, withdrawl or pain or something brewing illness-wise. We just don't know so it is difficult to treat. It seems as though the variables are always changing as well. One time something might work, but you're never really sure if it was the med or feeding or what that ended up helping. Our nurse last night from 12a-8a was superb. After I educated her a bit about how he's been since we've been here, she seemed to have a bit better idea of what we could try. Thank God for her. Even if we couldn't figure it out, she at least tried and cared for him.

SUNDAY, SEPTEMBER 23, 2007 07:33 PM, CDT
This afternoon I came back to the house for a late lunch and a nap. Greg has been with Brother since about 3:45. That was the best hour and forty five minute's worth of sleep I've had since we've been here! Grandpa and I went out and picked up some Arby's for dinner. After dinner I'm off to the hospital to begin my four hour shift with the baby. We're going to try splitting it between the three adults here, in four hour increments, 'round the clock. We got spoiled when he was in ICU. Not only were the nurses more hands on, he was sedated more! Now we're back to being full-time parents, only there's nowhere to sit/lay bedside other than a wooden glider or an office chair with no arms. I can't wait to get to the regular floor where we can at least rest when he's resting.
We are trying to focus on what's going well. Connie is takking almost all meds orally (ng tube), He only has one IV in him and it is capped off so he's not hooked up to any pumps or meds. All he has hooked to him is his sat monitor and the four stickers on his chest measuring heart rate and respiratory rate. He gets his bp measured with the cuff. He has a tube in his nose that can be disconnected from the syringe where food is poured. I'm so happy that in moderate care they change the feeding set (syringe and tubing) every feeding and flush out the ng tube with sterile water after EVERY feeding. In the ICU, if I wanted it done more than once every 24 hours I had to ask for it. I think it is like feeding a baby out of a dirty bottle when they don't change out the stuff. The milk just sits there in the tubing until the next feeding. I have been told he'll be able to go for rides in the strollers while in moderate care. Maybe that will distract him and give him something to be happy about. When his bed was moved he like being wheeled around. Hopefully it's not overstimulating. The hallways are bright and he's kind of anti-light now. The other great thing about today is that he hasn't needed any drugs for pain. He did get one dose of tylenol around 4 or 5pm. That's it. Isn't that great?

SUNDAY, SEPTEMBER 23, 2007 03:39 PM, CDT
Connie has been moved to moderate care. He is in a room with three beds. A little two year old girl that is in his room has been quite upset during part of his time there so far. First he came in crying, needing his pants changed. Once he settled down, she started in and the stimulation was enough to set him free again. We have been rocking him since about 10am! He has had no pain meds all day. His morphine drip was turned off this morning after rounds. His orders are for oxycodone, but he hasn't needed it yet. He is still on oral ativan. Tomorrow they will wean down on that some, I'm sure. We are adding potassium to his feeds which is upsetting his belly, we think. He seems fussy before a feed and then gets happy for a minute and then is fussy for about an hour. We thought that his stomach may have shrunk and that 4 oz was hurting to put it in all at once so we tried half, waiting a bit and then giving the other half. Then we thought that it was the potassium. It may even be the fact that the pacemaker is sitting right on top of his stomach and when the stomach is full, it could press on it. Who knows!? All we know is that so far in moderate care, the care seems pretty moderate, at best.

Hi all, Greg here...Conway is resting very peacefully tonight. My heart goes out to his roommate John (2 yrs old). John's dad Mike is here for the weekend. We spoke a bit and actually both enjoy non-fiction adventure books, ie. North Pole Expeditions, Everest, sea-faring, etc...When I got back to the house a new friend named Tony asked how Conway was doing. I told him it was bitter-sweet, that Conway is resting and doing well, but the doctors said his roomie John is not, and that there is nothing more they can do.Tony reminded me that God performs miracles every day. Thanks Tony... =)As I sat with Conway tonight I couldn't keep my eyes off John. He was awake and talking. His mom, Sarah, picked him up out of bed and sat with him in a comfy glider. He fell asleep in her arms. I can't describe the joy of watching this little boy rest so peacefully with his mommy, and at the same time feeling my heart rip in two at the thought of losing him.If you say only one prayer tonight, pray for little John, pray that God holds a miracle in store for him, pray that his parents, Mike and Sarah, find a rock to stand on in His name.G'nite all, thanks for being there when we need you most. =)All my love,Greg

No, we're not "on the floor" yet. Maybe sometime next week. My bet is we'll be moved to Moderate Care tomorrow or Monday. The thing is, he's ready to be moved, but there may not be any beds available there for him yet.
Connie is settling in with Johnny. Poor Johnny was trying to take a nap (he was sleeping soundly, actually) and Connie couldn't stop fussing. I feel so bad that he's being so noisy. He drifts off to sleep for a few seconds and is disturbed by something. We're pretty sure he's consipated again. He's been given a glycerin suppository and if that doesn't work, maybe a dulcolax or something.
The Rotary Club made lasagna and salad and bread for dinner tonight. It was very good.
Yesterday we received a package from a former MOPS member, Jessica. She and her family sent Mary Kathleen lots of snacks and activities. I got a book, homemade cookies and gift certificates to Red Lobster and Pizza Hut! Thank you Jessica, Ken, Ashley, Addie and Nicholas!! Mary Kathleen loved the blue poster.

I'm sorry it's been so long since an update was posted. I thought Greg updated the site last night.
On his transfer last night to the PICU, Connie told everyone what he thought of it by vomiting all 4 oz of his fortified feeding. Greg and I gave him a bath all by ourselves and then he was weighed and tucked in for bed on clean sheets. His weight was down below dry weight again (he's dehydrated). Since he's not tolerating the 24 cal feedings, they dropped him back down to breastmilk only and he's tolerated that perfectly all last night and today so far.
During the night he drank from a bottle and woke up every three hours to eat and only fussed if he was poopy.
At rounds today we learned we are moving back to POD A (the PCTU--where we have been the whole stay). We are getting a semi-private room and we're roomies with Johnny Eason again!! Sarah and I are pretty excited. They stopped the Diurel, changed his ativan to oral, added oral potassium supplements and increased his captopril. He may get his arterial line (the one in his femoral artery) out today. The only drawback to that is that the blood gases aren't as accurate coming from the vein and his bp can't be monitored continuously. They have to squeeze that awful plastic cuff on his arm or leg.
This morning he has been rather fussy. I tried from 9:30 until 11:45 to calm him down but he just couldn't rest peacefully. Then Greg tried for an hour and then Grandpa. The nurse was no help. I tried changing pants, positions, holding him, checking for him laying on things, everything I could think. The male nurse would say, "You're the mom. You know him better than me. If you have any ideas, I'm game." That's the problem. I tried all my ideas!
Grandpa said that after they moved him back to the PCTU, they gave him some benadryl and he felt much better. Apparently, when he kept rubbing his eyes, he was actually trying to scratch his face. I guess the morphine must have made him itchy. It doesn't usually. Who knows!? I just thought he was tired and was rubbing his eyes.
I tried to take a nap with Mary Kathleen this afternoon because Grandpa and Greg kept us both up most of the night with their snoring. Also, the a/c is not working in our room so it was 85 degrees. She wouldn't fall asleep with me in the room with her so I finally gave up and came out in the hall to post this update. Now my window for napping has passed as it is time to pump again. Then I best go relieve Grandpa and see what my boy is up to.
I wore my "Fightin' Irish" softball sweatshirt (from the team I coached) today. Mom packed it and sent it with Greg 'cause I asked for some warmer clothes. I didn't think anything of it. Dr. Devaney, the surgeon that put in the pacemaker, said I had some nerve wearing that around at U of M. The Wolverines and the Irish are pretty big rivals. He said it was okay, though, since U of M whipped up on Notre Dame this year.

FRIDAY, SEPTEMBER 21, 2007 04:23 PM, CDT
Connie is still zonked out from the doses of Morphine and versed that he received at 10am this morning right before they pulled his chest tube. He only wakes up if he wants his pants changed.
Connie is being transferred in a bit to the PICU. This is right down the hall from the PCTU. Basically, it is the same intensive care, same docs will see him, same nursing ratio (but they are not cardiac nurses). He is being moved because he is the only in POD A (PCTU) right now that does not have a breathing tube or oxygen of any kind. He is the most stable and they have an emergency case downstairs that needs a bed so he is being bumped. They do still want to watch him closely though. I feel better about bumping him to the PICU rather than moderate care or the floor. If other kids go out to the floor tomorrow, he may go back to the PCTU. They don't really like to bounce kids around too much though. Dr. Ryerson forsees (barring any complications) that Sunday or Monday he would be out of the ICU and either in moderate care or the floor. She is in no hurry to dump him off, but if they need the bed, he's gotta go somewhere.
He's getting ready to have his second feeding of fortified breastmilk. Basically we mix 1.5 tsp of Nestle Good Start powdered formula into his 4 oz bottle of milk and he gets extra calories that way. Since he's been so sleepy today he's had it fed through the NG tube. I wonder how he'll do with it in the bottle.
Greg called and said he will be here in two hours. Mary Kathleen will be so glad to see him.

FRIDAY, SEPTEMBER 21, 2007 10:52 AM, CDT
Connie's chest tube has been removed and the hole stitched up. The stitches come out in five to seven days. They removed his stitches from the other three tubes in the OR apparently.
He's sleeping because they gave him some Versed and Morphine right before the procedure.
Nurses think he may move to the floor tomorrow and skip moderate care altogether. They think the docs are just watching him closely to monitor pressure issues since they went up on the captopril again. They said he's the type of kid that when you look at him by the numbers he looks great, but when you actually look at him you don't see a kid that's ready for the floor.

FRIDAY, SEPTEMBER 21, 2007 08:55 AM, CDT
We're staying put. No moderate care for us just yet. His potassium is chronically low. He lost a bunch of weight so they changed his diuretics both to every 8 hours rather than every 6. The attending felt like they could nix one altogether, but they just adjusted the dose. They added a new diuretic that is not as effective for getting off fluid but also doesn't suck out all of the potassium either. We'll see how that works. The dietician is sending up powdered formula to fortify the breastmilk with so that he gets more calories in less fluid. It's all to give him a good fluid balance. He looks dehydrated today. His eyes are staring to sink in, but his chest x-ray looks much better so that's what the driving force is behind limiting his fluid intake and aggressively getting the fluid off.
His chest tube is being pulled around 10am so he is NPO and will miss his 9am feeding. He will stop getting the antibiotic now that this is happening. His dylantin (seizure med) is being switched to PO (oral) rather than IV. They are coming down on the morphine from 20 to 10. They are leaving the ativan alone for today and will go down tomorrow if he is tolerating it all well enough. I haven't seen the Neuro team in weeks so I asked what level of involvement they have at this point. They are paging them and telling them to come see him and talk to me.
Overall, he is not as happy as yesterday. There was some sort of kink or something in his line that was discovered this morning which may have affected how much morphine he was getting from his drip. He could be behind (in pain) or having some withdrawl. He settles down quickly though. They were going to give him Nurse Jen again today, but at shift change there was some talk like he may be moved out of the unit today so they gave him someone who has to take a new case later in the day. I wish the nurses would wait until the doctors give orders before they go arranging the staffing based on what they don't even know will happen. So now Connie will get a different nurse/s either mid-morning or early afternoon.

If I were a betting person, and I'm not, I'd bet than Connie will be moved out of the ICU tomorrow. If he continues to stay comfortable and the fever stays at bay as it did today, then I feel like they are ready for him to leave. Where he goes would be the question. I don't think you can be on the floor with a chest tube (not for sure on that though) but his hasn't drained anything at all since last night. So if it stays dry tonight, they may pull it tomorrow anyway. Moderate care would be the likely place for him (and I'd feel better there since they keep a closer eye on them than on the floor) but it depends if they have any beds available. I'm anxious to see what they decide.
Nothing at rounds tonight to suggest anything was remarkable on today's echo.
He was peaceful and comfortable all day today, except when he had messy pants (and of course he cried when they tried to start an IV and couldn't and when they shoved a tube down his nose into his belly). When he does get upset, he is quickly consoled. It wasn't like he was completely zonked either. He was awake a good portion of the am and took a long early evening nap and then was awake most of the evening. I hope he has a repeat of the last 12 hours tonight! I got to hold him for a bit tonight. I can't wait to hold him when he doesn't have so much junk attached to him. It's such a weird, uncomfortable experience. It'll be nice when we can both relax a bit.
I'm becoming a pro at the NG feeding thing. I can now pull air and residuals out of his belly and start a feed. Pretty impressive. Hopefully this is a skill I will not need once we are on the floor awhile or at home. I do hope that once off his meds he picks up where he left off with feeding. I was hoping to introduce solids when we got home. The little guy's gonna have to rehab enough to regain head control before any of that's going to happen. All in time, I guess. There I go getting ahead of myself and out of today again. . .
Thank you for the prayers and notes. Today we received a package--a David Stone--from my best childhood friend, Caryn, and a card from Connie's first NICU nurse, Krista. We also received prayer cards and a Green Scapular from the Ahlheim's. Yesterday we got a card from my MOPS friend, Sandra. These are all reminders of the love and friendship we have. We are NEVER really alone, even though it can sometimes feel that way.

From the initial look at the echo, it appears that there is no change from last week's study. Pressures on the right look to be about 75% of the left, which is the same and still the same AI. No visible signs of infection in the heart. All good things and things we wanted to hear, but still no good reason for why he spikes fevers and gets the way he does at least once a week.

Went back in after I finished pumping and Connie was awake again. Jen went ahead and tried to find a place for a peripheral IV. She ended up poking 2X to no avail. At that time, Dr. Ryerson, the attending, came over and said she wanted Dr. Crowley to listen to his murmur because it is different today. The debated back and forth about the possible cause and discussed his previous echos and cath. They decided on drawing more blood cultures (nothing grew from yesterday's) and since this is the third time he's done this, taking another look at a new echo. They feel there is a possiblity of infection in the heart which might be causing a greater leak and a different murmur. His skin is modeled but he is resting comfortably. There was some question as to how effectively his meds were being delivered since there seems to be a leak in that veinous line in his shoulder. They've had to change the dressing 2X this AM and his sheets are wet in that area. That could explain why even on the morphine drip he's been uncomfortable. When they check the line there is good blood return though, so it looks like a good line still. Who knows. For now, they are ordering more blood cultures (I asked that they not do a foley cath for another urine culture and they agreed--blood was all they wanted to check) and ordering an echo. He fell back asleep after crying some while they tried to do an IV, but that has been put on hold for now.
I don't want anything to be wrong with his heart, but it'd be nice to get some answers either way as to what is causing these symptoms every Weds PM/Thurs AM! He really doesn't like Thursdays.
On the neuro side, he has seemed MUCH more alert/awake today. Still upset to be messed with, but seems happy when I'm next to him. There was some talk earlier about giving him some blood, but that hasn't been added to the plan yet. I think the echo is first priority.
He technically didn't receive the Double Switch. Since the RV-PA conduit was used, he's technically a Rastelli-Senning procedure, according to Dr. Crowley.

Connie spiked another 102.5 fever last night. It was gone in about two hours. I got the call around 2am and when I called at 4am it was down. His white cell count is elevated, which is concerning. He might possibly be fighting some type of viral infection.
The goal today is to come back down on his morphine drip since he was more comfortable yesterday late in the day and overnight. They want to do this slowly so they are decreasing about 15%. They said in rounds, "He's been through enough, we don't need to add withdrawl." They are just going to watch him and see. When I got over here this morning he was on Room Air (no more nasal cannula--yesterday he was pulling at it to get it off anyway). He was awake and staring at his nurse. Nurse Jen is great. She talks to him and plays peek-a-boo and tries to stimulate him. She is the first one I've seen work with him to try to get some of his muscle tightness decreased. She said that we're gonna have a great day and that she wants to get him up out of bed and on a bouncy chair some if we can. She said she forgot we were from so far away and said it must be hard here with not a lot of friends so she'd be my friend! I thought that was nice. I told her we've had a ton of support, more than ever expected.
He took three ounces of milk from the bottle in almost record time. His sats dropped into the 80's while he was drinking so she gave him a little "blow by" O2. He didn't like that and quit drinking until she took the O2 away! He's getting to be a stinkpot.
When he was looking at her she asked him if he could find Mama and I came on the other side of the bed and talked to him and he turned to look at me. It is like night and day from yesterday at this time.
Right now he is taking a little nap. When he wakes up she's going to try to get a peripheral IV in him so they can take the veinous line out of his shoulder. It's been in since 8/28 and could be a source of infection. It's been leaky and the dressing's had to be changed frequently lately so they'd just rather get rid of it. Jen assures me that she's a pro with getting a vein, even on cardiac kids (who are harder to get than normal people).
I'll update more later. Hopefully this trend continues. I just pray that his pain is decreased and that he is able to wean off the meds without withdrawl. Please continue to pray for him and focus on these two areas. You might also add that his fever stays at bay and his white cell count return to normal and whatever is trying to bug him loses the battle.

Connie rested better this afternoon and then got a little fussy later in the evening. I held him from 8:30-11pm and with the help of a bit more morphine than what he gets from his drip, he was nice and comfy.
He seems in pain to me and the nurses. He did have two big bm's this afternoon, but his tummy is still hard as a rock. I'm not sure if he's tightening his abs because his chest hurts or if it's hard b/c he's full and constipated. At rounds tomorrow, I'm going to ask them what the plan is and see if we can't get a pain consult already. The nurses have mentioned it but made it sound like they only come in when his pain is gone so that they can help get him off the meds safely and avoid withdrawl. My heart mom friend, Heather, suggested this so I think we'll give it a try.
Thanks for looking in,

Basically they've given him everything under the sun for sedation/pain and he's still not settling. Still has a fever. The good news is his blood gases were fine, even with the agitation. The next step was to try me holding him but they changed nurses so they had to report. Asked me to come back in 15 or 20 minutes. Then the roommate came back from surgery so they'll need an hour or so to get him situated. By then I'm sure it'll be time to pump again. It's getting really old watching him this upset and not being able to fix it.

Connie is not doing so hot today. Fever. Agitated or in pain. Nothing is working to settle him down. It's been this way for awhile. He was going to be moved to moderate care (step down unit) if it weren't for this inability to get his pain under control. They are talking about starting him on methadone (yes, it is meth) but want to see if he is getting an infection or cold or some other illness and that's what's causing this behavior. Skin a bit modeled but improved. He's getting a urine catheter now to get a sterile culture.

Heading over to the hospital now. Just wanted to send a few thank you's out there:
1) Chicago Beckemeiers--thanks for the care package. The fresh fruit was such a welcome treat. Hospital "fresh fruit cup" just isn't so.
2) Kim and The Haseltines--we got your cards. Thank you so much. The extra words of encouragement go a long way to sustain us. Plus, everybody likes to get mail!
3) St. Luke's MOPS group, especially Jennifer--Thank you for the prayers, the dinners and dessert, the trip to the grocery store, the offer for help of any kind and the hugs. I'm really glad I finally got to meet you and tell you a little bit about Connie.
4) Kershenskis and Russos--Thank you for the basket of goodies that you sent up with Greg the last time around. I've never seen so many poptarts in my life:) The cereal bars came in especially handy after we got to the RMH and realized we had no milk at breakfast!

Just got back from visiting Connie tonight. It'll probably take a few hours for the morphine drip to be that effective. He started fussing a few times while I was there, but either I or Jim, his nurse for the night, would just cuddle him tight and he would stop. It's like he needs to feel pressure all around him to feel secure.
Met a mom today who gave me a ton of hope. Sarah introduced me to Kellen's mom, Tonya. Kellen has been here since mid to late July and had major neurological complications after his Fontan procedure for HLHS. He will likely be here rehabing two more weeks and then back to Nebraska for outpatient rehab. Anyway, she said that I shouldn't judge Connie's neuro status until he is off the meds. She said that even two weeks ago Kellen was a totally different child than the active, happy boy is he today. She said that once the drugs were out of his system, he really began to blossom and make progress. And this is after having 1/2 his skull removed to allow for the swelling due to the massive brain bleed and stroke. So, that gave me hope for Connie.
I asked John's mom, Sarah, for his carepage and told her that I had friends and loved ones praying for him too. She was glad to give it. His page is a carepage, not a caringbridge site. So you have to go to www.carepages.com and sign in (create an account). Then you type in the name of the page. His is JohnRobert2005. They had a meeting and the plan is to get him stable enough to transport back to a hospital closer to their home, near KC.

Bummer. . .
Grandpa hung out with Brother while I took Mary Kathleen through the Nichols Arboretum and all along the river and trails this afternoon. When he returned at dinner, he reported that the nurse asked the doctor at rounds if she could start Connie on a morphine continuous drip. So, we just stopped the ativan drip yesterday and added a morphine drip today! I don't want him to hurt, that's for sure, but I also don't want him overmedicated. We'll never get to see what his neuro status really is if he isn't allowed to "wake up". I guess all in good time. I feel like a kid waiting for school to start again. You are so excited you can't hardly stand the wait. That's how I feel about going home now. It seems like now that this pacemaker surgery is out of the way we are finally actually on that road home. It's even harder to be patient once you get a glimpse of that light.

After Connie was extubated he was still crying. They came and got me once the procedure was finished to see if I couldn't get him to calm down. After a few minutes of shushing to no avail, one nurse was looking on the computer to see what other meds she could give him. The other nurse said, "Instead of more drugs, lets try to give him more Mom." She got him out of bed and in may lap and before he was even situated, he fell asleep and stayed that way until I had to leave an hour and forty minutes later at shift change (and to pump, which I put off, of course, so I could hold him longer).
When we put him back in the bed he started crying again. He was due for his ativan so hopefully he settled out pretty quickly.

Connie is coming off the vent now. Here's the story: He came up from surgery very awake and agitated. They ran a blood gas that said he was acidodic. They don't want to pull the tube when kids are like this. Kids get bad gases after a period of agitation, from what I understand. Anyway, they gave him a dose of ativan, morphine and chloryll hydrate and it only kept him down for about 2 hours. He's awake now and crying, but there is no sound because of the tube. They gave him another dose of morphine and it did nothing. Still crying. Nasal flaring. Nurse says that he can't be extubated with nasal flaring. His chest sounds fine and the longer he thrashes around, the more rattles he'll get in there. His nostrils are flaring because he's mad and crying. Even the respiratory therapist says so. We all thought that the plan was to extubate asap. The nurse (who is just covering while his nurse is at lunch) thinks he has to be sprinted for an hour first and go through the whole wean down on the vent thing. I just kept saying that I thought they wanted to lose the tube asap and she went to get a doc. Dr. came over and looked at him and said he was mad and breathing fine, PULL THE TUBE! So, that's what is happening now. Of course, I was asked to leave for 10-15 minutes while they do this procedure.
He has one chest tube in the middle that will hopefully stop draining in a couple of days or so. He has a dressing over the middle of his chest and one on the left side under his ribcage. That one sticks out, I guess cause the pacemaker bulges out a bit.
God, Thank you for allowing Connie to breathe on his own without the ventilator that he hates so terribly. We ask you to continue to heal him and let him rest so that he may begin the journey of recovery and a return to his normal activity level and health. Through Christ, our Lord, Amen.

Just saw him. He is still on the vent. His skin is modeled looking again so they are watching that and his last gas was very acidodic. Here we go again. . .

I'm so embarrassed! I fell asleep in the waiting room and the surgeon came in to tell me it was all over.
Dr. Devaney just popped in the waiting room to say that he is done and all went very well. So well in fact, and faster than they thought it would, but anesthesia may have given him a bit too much sedative (thinking it would take longer) so he's not awake enough yet to extubate:(
He was able to just reopen the lower portion of his chest.
He may come up on the vent or they may give him a little more time down there to wake up. Either way, he'll hopefully get it out when he wakes, where ever that will be. I can probably see him in about an hour from now.
Pacemaker batteries usually need to be replaced about every five years (according to Dr. Devaney). This is a minor procedure where they just go back in the belly incision and put in new batteries and go home as an outpatient. Since he is so little, he'll also need to have his "leads" replaced. These are the wires that go from his heart to the actual pacemaker. He'll outgrow them and have to have longer ones placed. The goal is to do as few surgeries as possible, so hopefully when the time comes for his PA-RV conduit to be replaced, he'll be able to have the leads changed out then and not require additional procedures.
Lord, Thank you for guiding Dr. Devaney and his staff this morning and making this procedure smooth for Connie. We pray that Connie will breathe well on his own and have little trouble with pain. Please hold him and comfort him until we can do so again. In Jesus' name, Amen.

7:37am: They just took Connie down for surgery. Anesthesia came to get him right during shift change so the nurses didn't have him ready to go yet. It was a stressful 10 minutes, but it all got worked out.
Dr. Devaney, the surgeon, said the the most time consuming and difficult part of the procedure will be re-opening his chest safely since there has been 3 weeks of healing. He will start with just opening a small portion from the bottom and see if he can get the leads in that way. Otherwise, he'll have to go all the way up the original incision. He said it'll probably be 2 or 2.5 hours before he comes to talk to me. Anesthesia said that depending on how Connie does with the extubation attempt post-op, he may or may not go to recovery for a couple of hours. If they are able to extubate, he'll stay down there for a bit. If he comes up on the vent, he'll come up right after surgery and not go to recovery.
We had a rough night last night. Right about the time I settled into bed, Mary Kathleen woke up with one of her crying for no reason spells. It lasted at least 1.5 hours. I finally ended up sharing my twin bed with her. She kept up the whimpering for a bit and then settled down. She was up again at 4:45. I bet she got no more than 3 hours of continuous sleep last night. Grandpa and I got up at 4:45 anyway. He came over to see Connie one last time before surgery while I got dressed and then I headed over at about 5:45. When I got here, they said that Connie was on the schedule but didn't know when. It might be after the other four cases! I couldn't believe it. Here he is NPO (without food) and they don't even know when he is going? Ugh. . .
Well, Sarah is here to update John's page so I'm going to eat breakfast.

MONDAY, SEPTEMBER 17, 2007 10:00 PM, CDT
Just got back home. I'm a little disappointed b/c he fussed for an hour and a half before we figured out he was constipated and had gas. He fussed while I held him, he fussed when I didn't. It was so frustrating. I just wanted him to rest peacefully and sleep and rock the night before his surgery but all it did was make him uncomfortable. His little belly is rock hard. They gave him a suppository and also some morphine to help him relax. It was the first pain med he's had all day.
Tomorrow the plan is to head over to the hospital by 5:45am and sign the consent and then ride down the elevator with him to the pre-op holding area until he goes in for surgery. I'll try to update once they take him back. If not, I'll update after the surgery is over or after an update.
If you could also pray for two week old Onan, Connie's roommate who is having surgery at 10am tomorrow to correct his Tetralogy of the Fallot (another type of heart defect). His family just got moved into the RMH today and his mom and I have been hanging out some. Baby Onan also has an older sister like Connie, but she's not here.

MONDAY, SEPTEMBER 17, 2007 03:08 PM, CDT
What a great day! Connie has been the opposite of agitated and yet awake. I'd say it has been his best day yet. He has needed nothing for pain. He's on order to get ativan every four hours so that they can turn off his drip and he won't go into withdrawl. They'll wean him down each day on the time and dose of the oral ativan. Tomorrow he will come back with a morphine drip probably after surgery. That's the other news. Right now, we're planning on being the first case with Dr. Devaney. I'll probably be signing the consent form by 6am and they'll start sometime after 7am Eastern. It should be less than two hours this time. The hope is that he comes off the vent as soon as he starts to wake up enough to take his own breaths. I did get the docs to change the NPO (no food) orders. They ordered him to be NPO after midnight for a 7am surgery. That's bologna that he has to go 7 hours without eating at the age of 6 months old. Before his first open heart he only had to be NPO for 4 hours from milk and he could have pedialyte up to 3 hours before the procedure. When they check his belly for air about 2 hours after he's been fed, he has no milk left, so there's no reason he can't eat closer to 3 or 4am for a 7am surgery. I gently asked and they politely agreed that it was fine and changed the order to say 4am could be his last feed. I think the way the timing will work out though, his last feed will be at 3am. He should be fine making it to 7am after that. Although, just now he started fussing to eat about 10 minutes before he was due.
Someone's knocking on the door to use this computer so I'd better go.
Haven't held him yet. Between getting the boot earlier and my pumping schedule and his sleep schedule and shift change, it just hasn't worked out. I thought that since he's awake now, it's time for him to eat and his nurse is staying his nurse until 7pm (doesn't have to "report") that she'd let me stay and hold him but it just wasn't to be. She said let's plan on holding him when I come back at 4pm. Well, the bummer about that is I should be pumping again at 4:45. I'm trying to get back on track with it because I'm noticing my supply is starting to dwindle. But honestly, between what's in the freezer here and what's in our deep freeze at home, the kid could drink pumped milk until he's 12! It's just so hard to leave him to go pump. When given the choice to hold him longer or spend time with Mary Kathleen or sleep, I tend to choose those things over pumping. Oh well, I guess it's back to getting up in the middle of the night.

MONDAY, SEPTEMBER 17, 2007 12:19 PM, CDT
Ugh. . .There are four new cases today (that means new kids coming into the PTCU post op) and two of the empty bedspaces are in Connie's area. That means that we have already been kicked out for the first and will be kicked out later for the other one at some point. It's only for an hour or two, but it is frustrating between him being awake and when I have to pump, etc. The timing is just a bummer. He was awake so much this morning. Kind of sleepy (the meds) and in and out, but eyes about 1/2 open and clearly looking around. Like he was scanning the room.
I met a priest, Fr. Pat, in the waiting room. He was there waiting with a spanish speaking mom who's daughter was having her second open heart surgery at the age of 26 months. He started talking to me and asking Mary Kathleen's age why we were there. I told him and he offered to pray over Conway. He came back to our bedspace and prayed over him and blessed him and got a relic out of his pocket and laid it on Connie's chest and said more prayers. Connie laid still the whole time. He watched the priest make the sign of the cross over him and didn't fuss when he blessed his forehead. It really made me feel good. I also thought it was neat that he was here with that mother, waiting it out while her daughter was in surgery.
OT and PT are supposed to resume to every day now that he's off the vent and they are supposed to get Neuro in again today. I hope I'm allowed to be in there when they come by. I'm heading down to call to see if I can come back in now.

MONDAY, SEPTEMBER 17, 2007 11:18 AM, CDT
Conway has gained one pound of fluid since yesterday. That is not good. He looks like a little marshmallow. They increased his lasix to every 6 hours and are allowing him less intake of milk but will fortify it with extra calories. They want to find a fluid balance. Not sure how to nurse and fortify the milk after we're home, but I guess we'll figure it out.
His x-ray is a little "wet". That means he has increased fluid and a little collapse of the lungs. His sats are still great so we'll just try to get that fluid off throughout the day with more lasix. They want to turn off the ativan drip and give ativan round the clock and then wean down off that. They have turned off the milrinone and started him on captopril. This is to help his heart since he now has severe aortic insufficiency (basically it is leaking back into his left ventricle rather than getting out to the body effectively). The attending this morning was great. She told me that he will be a normal boy and can do junior level sports like soccer, baseball, etc. She did say that it would be in his best interest to steer him away from games with lots of running but more skill so that when he's older he's not disappointed when they say no football or higher level basketball. And no, he probably won't run a marathon. I'm not too bummed about that one!
He seems happy today. Lots of loose bm's which make him immediately start to fuss, but after the production of changing him is complete, he seems to settle out easily. He has been awake and looking right at me for most of the morning. Sissy came in to see him and talk to him. They were coming around with stuffed bears that had been donated so I let Mookie take it this time. He has enough junk in his bed at this point! She named him Cranbeary, which is rather clever because he has a cranberry colored scarf and is a bear. She calls him Beary for short. "Pitty cute" (inside humor if you've ever heard her talk).
The latest is that the surgery may be Wednesday, with Dr. Ohye. We're waiting to hear.

MONDAY, SEPTEMBER 17, 2007 05:48 AM, CDT
Connie had a good night. Some head shaking around 2am, but was given chloryll and fell asleep and has stayed that way. Tolerating feeds very well. Still junky in his chest. Hoping the x-ray is clear. His weight was up quite a bit. He finally had that big poop we were wating for. Ruined his new space shuttle blanket! Can't wait to hold him again.

SUNDAY, SEPTEMBER 16, 2007 11:06 PM, CDT
Gave Connie his 9:00 bottle. He drank about 45cc's (over 1/2) and the rest we put down his tube. His nurse Whitney was very nice. He has a new nurse now at the 11:00 shift change, but I've seen her around. I've been told she's worked in this unit longer than anyone so that makes me feel good, plus, I've seen her with other babies a few beds over from Conway and she seemed caring. I had heard earlier in the day that his nurse was one that I specifically requested he not have again. I was bummed all evening thinking about it so I was relieved and thanked God when I came in and saw Whitney.
Did I mention I held Connie while I gave him his bottle? He was just finishing his bath when I came but wasn't fussing. It seems as though he is able to tolerate a bit more touch-wise lately. I hope that is a good sign of some neurological recovery. I been rocking him since just before 9pm. It was wonderful. We watched the Emmy's. Well, I did, but he just slept comfortably. When we moved him back he was still happy and calm. He got a new fleece blanket today from the nurses and also a really cute thicker blanket to lay on with space shuttles on it. He seems to like it. He's also wearing a big boy hospital gown. I do hope he gets some rest tonight.
I asked when the pacemaker surgery was scheduled and Whitney said that Amy (the nurse from earlier) told her it was scheduled for Friday. She went to double check and said it wasn't on the schedule yet. I have been told that Dr. Bove is out of town next week and won't be the one doing the surgery. It would either be Dr. Ohye (oy-yay) or Dr. Devaney. Maybe he'll be back by Friday and that's why they're waiting. Maybe it'll be Tuesday. Who knows?! I am very at peace with waiting for some reason. I know it is God's plan that Connie not get it just yet for whatever reason. Maybe God will restore his rhythms on his own, without the help of a pacemaker. I know it's a long shot, but every morning they turn it off and see what he does on his own. It could be that the morning of the scheduled surgery, when they turn it off, that he starts doing it himself. I'm not saying that I'm counting on that, just trying to figure out and explain in my own head what is going on.
Alright. I've gone on long enough. I've got to pump and then get back to the house. I want to be in bed before midnight if I can.
PS. Goodnight, Greg.

SUNDAY, SEPTEMBER 16, 2007 03:11 PM, CDT
Once again, funny how God works and gives you what you need, when you need it.
I was just searching through the messages on our L-TGA support group's website looking for a link to a CHD (congenital heart defect) awareness video and came across a saying that another mom adds to each of her posts. The saying goes:
You can be upset because rosebushes have thorns,Or you can rejoice because thorn bushes have roses.
That's something I needed to read just now. I thought I'd pass it on as maybe it is something you needed to read too.
Waiting for Mary Kathleen to wake up so we can go back over to the hospital and relieve Grandpa.

SUNDAY, SEPTEMBER 16, 2007 02:42 PM, CDT
As I sit here with enough time finally to browse through the information given to me on Thursday about Connie's pacemaker, I find myself getting mad. I am mad at myself for handing over my little boy before he was "heart sick" and putting him through this. I'm mad at the surgeon for not being able to fix him completely the first time around. I'm mad at the doctors who can't find the answers to whatever caused his multiple setbacks. I am mad at the doctors who can't tell me when or if he'll ever regain his sight or neurological function. I'm mad that he has to have a pacemaker put in when before the surgery his heart rhythms were fine. I'm mad that he can't be on the football team or play baseball, as anything that would bump the pacemaker is prohibited. I'm mad that he can't carry a cell phone in his pocket or on his belt when he's older because it may interfere with the system responsible for making his heart beat. I'm just mad and I guess I want to be for a bit.
Lord, help me to see the humanity in others and understand that life is not fair. It is exactly how you planned it and that someday I will understand all they whys and hows. Right now I'm trying to figure out how I'm going to tell my little boy someday that he can' t do everything his friends are doing. Instead I should be praising you that he's alive. I should be grateful that you gave him to me to raise and rest peacefully in the knowledge that you have a special purpose for his life and mine. God, when I start getting ahead of this day and thinking and worrying about tomorrow, help me to just turn it all over. Your son has carried far worse and he can carry those worries as well. Help me to replace the worry with confidence in your will and a renewed strength to follow you. In Jesus' precious name, Amen.

SUNDAY, SEPTEMBER 16, 2007 12:32 PM, CDT
Connie got a little milk (50cc's per hour for now) and has settled some. He keeps having very loose, very acidic bm's. It burns him instantly. He was back in great shape (not pooping for four or five days while you're doped up on pain meds will allow your bottom to heal, I guess) but after about 5 little poops in a row, he's totally raw again. The U of M actually invented some sort of miracle cream, but it's a better healer than protector and we're in the needing protection stage right now. The dirty pants is the first thing we check when he gets agitated. And once the problem is solved and he's patted a bit, he calms right back down to sleep. All he's gotten this AM is some tylenol. He's keeping his food down and even bottle fed (they call it PO) almost an ounce. He's still very rattly in the chest. Since he's not on a ton of meds and completely out he's been able to cough some. They don't like to suction too much b/c it further irritates the throat and causes more secretions and more rattles. I sat him up and beat on his back for a bit and chanted "Ruggadoo, Ruggadoo, Rugga-Rugga-Ruggadoo" just like Daddy says to him at home when we are all playing in bed on the weekend mornings. He stopped fussing and seemed to be listening and liking it. He's opened his eyes, but not looked at me. Grandpa's with him for the afternoon while I rest with Mary Kathleen. I've got a sinus headache and am feeling pretty low on energy.

SUNDAY, SEPTEMBER 16, 2007 11:04 AM, CDT
Hi everyone, Greg here...As most of you know I've come home for the weekend to produce boxes for my side business. I bought a new printer last night from Office Depot and the checkout girl was very kind. Well, I returned this morning to return the printer because it wouldn't feed my paper. The same woman was working. As I was handing the printer over the counter to return it I asked if she had been working all night! We had a little laugh and she said 'No, but I'm here until 8pm tonight.'We got to talking and it turns out that she is going through a divorce after 15 years of marriage. She has 15 and 12 year old children. She's working very hard to try and keep afloat. Before Office Depot she had a job taking care of the elderly and she loved it, but the money just wasn't enough.What's the moral of my story?She asked how I was doing and I told her about Conway and gave her the web site. Would you believe that we held hands and she said the most beautiful prayer, referencing scripture and pleading to God that He will NOT take Conway.So, here is this woman going through hell herself, yet praying for my son...It made my week... Thank you Michelle...Greg

SUNDAY, SEPTEMBER 16, 2007 10:12 AM, CDT
Connie was pretty restless over night, even with chloryll and morphine and ativan. He finally fell asleep at 6:30 but woke up at 8:15 with a huge bm. He was unsettled again until 8:30 when I got here and calmed him down. He fell right to sleep and his pressures have actually been lower since I've been here than I've seen them in days. He didn't even fuss when they put his splints on (not even sure why they were putting them on right after he fell asleep. Let the poor little buggar alone!)
At rounds today they decided to keep everything pretty much the same except come down just a tinge on the ativan drip. We don't want withdrawl. As soon as possible he'll get off the milrinone drip and switch to captopril orally. Lasix stays the same and they are going to let him eat today. Finally. The poor kid hasn't had anything to eat since Wednesday. Maybe that's why he was so mad last night.
Oh yeah. Sometime overnight his pacifier from home (the only one he'll take--a gerber nuk orthodontic 0-6 mos, SILICONE nipple--was lost). So now all the hospital has is rubber nipples and he only likes silicone. Sarah said she'd send her dad out later to target or someplace to get us one if Grandpa doens't find another one in Conway's diaper bag back at the RMH. She's so great.

Connie got restless again around 7pm tonight. His sats dropped into the 80's (this doesn't happen to him). I was at the house with Mary Kathleen and called to check before giving her a bath and doing the bedtime routine. His acid was rising along with his lactate again. This can happen when he gets fussy or it could be a signal of something bad again, possibly infection or whatever. Anyway, they gave him some chloryll hydrate to settle him down and his next gas was beautiful.
I got there a little after 9pm or so and he was starting to rouse again. He should have still been knocked out but was kicking and trying to cry with his hoarse little voice. They were in the middle of extubating the baby next to him so the nurses were too busy. His pressure kept rising and his alarms were going off. I discovered his pants were dirty and he needed to be changed. They got another nurse over to help b/c with the arterial line in his groin, they don't want anything getting near it to infect it so it takes two people. After he got new pants he settled back down.
I came in to type this update and ran into John's mom. He is two and they just found out yesterday that there is really nothing more the docs can do for him. He is basically in heart failure and is not a candidate for a transplant. We talked and talked about all the feelings associated with this horrible disease and how to be a mom to a sick kid (she also has other kids back home with dad in KC). Anyway, if you could add little John Robert to your list tonight and his mommy, Sarah, it would be great. Just ask the Lord to give him peace and reveal his plan so that his family can prepare themselves the best they can.

I just came back to the house for dinner with Mary Kathleen after holding Connie for the last three hours. He was extubated just before 1:30 and was quite agitated afterward. He has some pretty labored breathing, but his gases are fine. He needed Mommy to calm him down and for the first time, it worked. As soon as I started rocking him, he stopped all the fussing and moving and just rested peacefully. He needs to be suctioned frequently and when he cries a bit it is very hoarse. I'd imagine that he's got a huge sore throat. All I know is that the whole time I had him, he needed nothing. His #'s were great and he didn't need any attention from the nurse. It was the first time that I've held him where it actually seemed like it was him more good than harm. The last two times he's been in my arms he's been so irritated and seemed overstimulated and upset by the whole moving him ordeal and being touched. This time he seemed to like it. When we put him back in bed, he opened his eyes but did not get upset by being moved. I'm so happy for him. I hope and pray that he continues to clear out those lungs feel better.

So, here's the dilemma. Connie won't breathe over the vent when he's snowed on drugs, but when he's waking up and breathing on his own, he's physically out of control. We want to make sure he can breathe on his own before extubating. They said today they may try to do a series of sprints (you remember these from before) and if he does okay let him get extubated tomorrow. Well, since he is so difficult to sedate, we are trying one sprint now. If he does fine, he will be extubated TODAY! Since he is so coarse and had strider the time before, they are giving him a special steriod to help relax and unswell the airway BEFORE he's extubated.
We're trying to tweak his lasix. He is putting out a ton, which is good for respiratory health, but we don't want him to get dehydrated. He's had no food since Wednesday night. He got so dehydrated last weekend so we may turn down the lasix a bit. His potassium is crazy low too, even with getting a bunch. So we may have to look into that.
Gonna eat lunch with Mook if it ever comes. Thanks for looking in.

FRIDAY, SEPTEMBER 14, 2007 10:15 PM, CDT
Just back to the house. Shift change. Public Safety offers escort service after dark for females going back to the RMH from the hospital. So that's good. Actually, I wasn't so much worried about my safety as I was cold!
Connie is snoozing away. He's not doing much breathing on his own. That's okay though since he had such a hard day yesterday.
Echo results: Nothing remarkable. So unremarkable, in fact, that the day docs didn't even discuss it with the night doc at rounds! They do note the Aortic Insufficiency as moderate to severe (the last echo showed moderate--but it was read by a different guy so that's probably the difference). Don't see any changes really.
The line of thinking now is there is a link between Conway's deterioration and the drug Metro. . .(generic: Flajel--not sure of spelling). We are suspecting that he has an allergy to this drug now and that the reaction is what we saw yesterday. He was given a dose at 8am yesterday when all this started going downhill fast and after he was intubated he was okay for awhile and then after the next dose of it was given at night he started declining again, even on the vent. They aren't ready to blame all the events of yesterday on it, but do think that it is at least the culprit of last nights difficulties.
He's on Diflucan for possible fungal infection.
The goal is to extubate this weekend. Possibly as early as tomorrow.

FRIDAY, SEPTEMBER 14, 2007 07:58 PM, CDT
Grandpa went over to the hospital while I put Mary Kathleen down for bed. She had another one of her crying jags just before we sat down for dinner so Grandpa and I had to take turns eating while the other sat up in the room with her. After about an hour or so she finally calmed down enough to eat. We'll never know what started it. It's just a phase I'm hoping.
I can't remember if I mentioned it in earlier posts, but Connie got more blood today. 1/2 unit. Do you know they have to throw the other 1/2 away? No wonder they're always hurting for blood. Seems simple to me; if they would portion it in smaller portions they wouldn't have so much waste. Once I'm done with all this I'll get right on getting the Red Cross to alter their current practices. . .ha ha!
Okay, Grandpa's back. Reports that Connie just had a little extra Ativan (I know, I've been misspelling it all along) and that he looks puffier. He is still peeing gobs and gobs but he got a lot of fluid today (the blood and other junk). Better fold the laundry and get back over there. Night night!

FRIDAY, SEPTEMBER 14, 2007 04:47 PM, CDT
I forgot to mention that the social worker for POD A, the PCTU, came by this morning and offered me a gift certificate for a 30 minute chair massage. I graciously accepted and had my massage at shift change this afternoon.
Connie has been more peaceful and settled today than I've seen him in a long time. It's a nice change of pace. Thank God!
Still not taking breaths on his own. Most likely will keep the vent through the weekend, but we'll see.
Have not heard from the docs yet about the echo. Not sure if I've just been missing them or what. I did ask the nurse to see if one could stop in to let me know what they thought of this latest study, but she said they were all with another patient.
Since he's resting so nicely (completely knocked for a loop on pain/sedating drugs) I went back to the RMH to get some laundry done and spend the evening with Mary Kathleen. Will probably head over again after she's in bed.

FRIDAY, SEPTEMBER 14, 2007 01:07 PM, CDT
Connie just had another echo done this morning. It was done with one of the super machines, not the bedside machine like yesterday. Have yet to hear the results. What generally happens is the tech shows the echo attending, he writes a report and the cards in the PCTU will read it and share it with me later on. The attending that reads it is a new guy to this hospital, according to the tech. But, he came from Boston, another superior heart center.
Connie is stable. They stopped orders for the chloryll hydrate and for the antibiotic that was susupected to cause an allergic reaction. Tomorrow is his last day of the other antibiotics. The anti fungal he is on is diflucan. Nothing grown on any cultures yet. The thyroid check was normal. Still no answers as to what is causing this. His gases have been good. Now a little too much PO2. They went down on the pressure setting on the vent and will take another blood gas in an hour. He's had so much blood taken for gases and such that he needed another transfusion this morning. It seemed to help his color and overall look. They think he'll feel better too. He is still difficult to keep sedated. He isn't thrashing his head about as much, but his right side is moving a ton. I told the nurse this AM that I hadn't seen any movement on the left side and was concerned and she said that the night nurse said the same thing. She unhooked his restraint on the left side for this reason and do you know that that little buggar immediately reached up and grabbed the tube with his left hand!!?? All he has had were non-purposeful movements on the right and all of a sudden a VERY purposeful, get this thing out of my mouth, movement on the left. Strange.
Rather peaceful morning this morning, especially compared to yesterday morning. Mook and I are up in the Family Resource Center so I can update (sorry they are less often, but computer access isn't as close or always available anymore) and she is playing while we wait on lunch to be ready. Grandpa is with Connie watching him sleep (and Grandpa's probably catching some shut-eye too!).
It's funny how God works. Instead of getting worried because Greg had to go home, God has introduced me to others on this journey and I have a special commraderie with some of the families here. It's like I've been told, "God will provide the support you need, when you need it." It may not always be from the person or people you expected. This morning I met a mom and grandpa from St. Louis. They delivered at St. John's too and their cardiologist back home is in the same group as ours. We go to the same office! Bove is also their surgeon. It was so nice to chat with them and another mom I've met whose little boy has been here since August 7th. His 2nd birthday was yesterday, spent in the ICU after having been moved to moderate care but coming back after a lung collapsed. We can draw strength from one another and it helps us all to not feel so alone and isolated. What a blessing.
Okay, lunch should be ready. Gotta feed the toddler. I'll post after I talk to the docs about his latest echo. The plan this morning was to possibly wean down the vent for potential extubation tomorrow. All hinges on blood gases. . .

11pm: I went back after Mookie went to bed. Connie is having a rough night. He is not sedating well and continues to thrash his head and right leg about. He was put on an Ativan drip and given versed on top of that. When that didn't work, they started him on a 1/2 dose of chloryll hydrate. That settled him to the point of dangerously low blood pressure. Thus begins the cycle of keeping him still, but not dropping his pressure. He continues to work very hard to breathe. His nostrils are flaring and his sides are pulling. I thought this wasn't supposed to happen on the vent. Every time he moves his head, more secretions are released in his airway causing more constriction and more agitation. On top of all this, he had an allergic reaction to a med (not sure what yet, but it came right after one of his antibiotics was hung. He broke out all over in hives. They quickly gave him benadryl, flushed his line and then started steriod treatments to reduce the swelling in his airway. Thank God he was intubated. It protected his airway. The hives increased his agitation. I came back to the house to pump but will probably go back to his bedspace after midnight. He just isn't right tonight. . .The doctor is very present in Connie's bedspace and his nurse, Jan, has been wonderful. There was some talk about doubling him tonight with another patient but I think his "misbehavior" squelched that thought.
Greg is in Chicago tonight at his brother, Dave's house. He will head to St. Louis early in the morning to produce some orders as quickly as possible so he can get back up here.

Connie is now resting. The ventilator is doing the breathing for him. He is not "breathing over" the vent at all, but that is b/c he is heavily sedated. Every hour the sedation wears off (the more drugs you get the higher your tolerance) so they are starting him on an Adavan drip (continuous). At rounds tonight some of the docs who weren't there this morning were shocked and dismayed to see him in this condition, tube and all. One suggested that they check his thyroid. It controls so much and is a shot in the dark at what might be causing Connie to do this, when he has no sign of infection, fever, etc. By tomorrow afternoon we could have info as to where his thyroid levels are. It is possible that during the surgery when he was deprived of O2 to the brain, that his thryoid could have been damaged. It is easily treatable.
He's on 40% O2 on the vent. He had an arterial line placed in his femoral artery and a foley catheter inserted to measure his urine output better and get a sterile urine sample for culture.
Our friends from MOPS came in on their way to Grand Rapids. Jean and Dan and their kids were a welcome sight. They were kind enough to think of goodies for us and Mary Kathleen and Connie and delivered a card signed by all the MOPS moms as well as gift cards to help offset our costs while we're up here. Jean included scripture verses and a special annointed cloth that her pastor prayed over for me to use on Conway. What a blessing it was to pray with them for Conway to have God take his pain away and improve his respirations to that he may be rested and well enough for surgery.
Surgery may take place next week. We're waiting to see if any fungus or infection shows in the cultures that we're drawn today and we're waiting until he's rested enough.
Going to give Mary Kathleen a bath and put her to bed before heading back over for a few hours to the hospital. I think she's gonna love this RMH. There's way more to do here than the hotel/hospital. Grandpa has been such a help with getting her dressed, feeding her and playing with her during all of this.

Connie has just been re-intubated. He will have to stay heavily sedated so he doesn't move his head because that would cause irritation and swelling in his throat. They had to do this despite trying sodium bicarbonate and nasal c-pap. Definately no pacemaker today. He is not well enough.
We've been accepted into the Ronald McDonald house and Greg and I are packing now while Grandpa sits with Connie. The address and phone numbers are:
The Ronald McDonald House1600 Washington Heights City : Ann Arbor, MI 48104Phone : 734 994-4442Fax : 734 994-4919
We'll update as soon as we know more...

Correction: It was Dr. Bocks, not Dr. Cotts that helped remove the tube. All the moms around here and even Greg call him Dr. GQ, so you can see where I could get the name wrong.
I went in after shift change. Connie had just had a diaper explosion. He had been changed and got new bedding but was just calming down. His breathing looked labored and his skin was modeled (patchy). I forgot to mention earlier that he has an incredible diaper rash. They think it is from all the antibiotics. I've never seen anything like it but he is bleeding it is so bad. They aren't using wipes, but some foam stuff and gauze to keep from irritating it more. They are also applying a ton of zinc oxide cream type stuff to it. It is improving. I got to hold him for about 1.5 hours tonight. He never really settled. He was either in pain or was having neuro movements. He wasn't crying, but kept opening his eyes and moving around with non-purposeful movements. The nursing didn't go well once again. He got very upset which made him work harder to breathe. I think he looks like he's retaining lots of water tonight. His weight is up from a dry weight of 8.2 to 8.5 something tonight. He is definitely retaining.
I am nervous about tomorrow. I know on the scheme of heart surgeries, this one is "not a big deal", but it just kills me that he's got to go back in and endure more pain and more aggravation.
Please join us in asking God once again to reveal His will for Connie and for us.

Final chest tube removed. Morphine given. Dr. Kollars and Dr. Cotts did the procedure. I got to stay and watch. Gonna hold him bunches and bunches tonight. Can't wait.
We got subs from this place called Jimmy John's that everyone has been raving about. Don't see the big deal. Mookie was very defiant about eating (this is unusual for her). She and Greg are participating in a BINGO game in the Family Resource Center on the 8th Floor while Grandpa sits with Connie for a bit.
Tomorrow, my friend from MOPS, Jean, is coming by to visit on her way to Grand Rapids with her family. Isn't that nice? Hopefully she'll get here before they take him in for surgery.

Shift Change, 3pm: Connie was supposed to have both chest tubes removed today. Something went wrong with communication b/c they only pulled one. Now he has to go NPO another 4 hours and get more pain meds which he wouldn't need otherwise so that they can pull the other one. With the pain meds he doesn't do so well on the bottle or nursing (we only tried nursing the one time yesterday). So that's aggravating.
Dr. Gajarski, the attending, came over when Dr. Kollars, the fellow was examining Connie. She was examining him b/c his nurse, Bonnie said that he had increased work of breathing. It may have been due to getting his lasix dose late. It was late b/c it is PO (oral) and he wasn't allowed to have anything oral before the first tube came out. This could have allowed increased fluid around his lungs. His vitals were fine though. Anyway, Dr. Gajarski said that Connie's pacemaker surgery is set for 2PM tomorrow. They will go in through the same incision in his chest, reopen the sternum and place the leads on his heart. They then feed them down and connect them to the pacemaker, which will be placed in his abdomen through yet another incision. Babies don't have enough fat up on their chest to put it there. I guess it would be a big bulge. In his belly it would be hidden better. He will get a new chest tube again tomorrow in the medial-steinal space but hopefully will only need it a few days. He'll also be on the ventilator after surgery but may get taken off tomorrow night.
OT came by but he was sleeping and when I described the chest tube scenario to her she decided they'd leave him alone for today.
Nutrition came by and gave me directions for administering Captropril (his new heart med) when we get home. If taken with food, it is 50% less effective so it has to be taken on an empty stomach.
His potassium is lower with every check, despite getting potassium IV's. Not sure what is going on with that. Connie's roommate from Kosovo is getting moved today to the regular floor. I hope whoever he gets next is fairly low maintenance and not loud. Two other babies got discharged today from the hospital. Nicholas and Justin both got sent home. We became close to their families while we were here. Justin's surgery was the same day as Connie's (but for Tetralogy of the Fallot) and Nicholas' was three or four days after Connie's (for Hypoplastic Right Heart Syndrome).
Still not in the RMH. Justin's family was there and got discharged today so I called to see if we got in yet and they said we weren't the first on the list. So, we'll see. It's still the MedInn for now.

Dr. Bove came in this AM and said that tomorrow (Thursday) afternoon will be the pacemaker implant. However, there is a person who specializes in setting them and making the connections and all the electrical stuff and they have to make sure he is available at the same time as Dr. Bove. So, we still don't know when it will be. The EARLIEST is tomorrow afternoon.
Connie's other two tubes are coming out today. Probably as I type! Grandpa's with him now while I take Mary Kathleen. He could be weaned off O2 all together and just on room air, but they are keeping the cannula in since he is not bothered by it and since tomorrow he will be back on O2 again for the surgery and afterward.
He doesn't care for the sodium chloride (salt) that they put in his bottle three times per day. It is to replace the stuff he's losing b/c of the diuretics. Instead of decreasing his diuretics they upped his NaCl. He won't take the bottle with the salt water in it so they have to put it down his tube. This isn't all that great either, as he throws up shortly after a huge crying spell. They have him on zantac for possible ulcers, but put salt water directly into his belly. Go figure!? Anyway, I told this to the docs and that he'd not been having tolerance issues before the NaCl was introduced. They said that the nurses give such huge doses so they only have to give it a few times per day. The docs ordered that they give it in much smaller doses and with every feed so they weren't having the throwing up issue. They said they are even going to have a meeting about it because it has been an issue for some time with the nursing staff.
Physical therapy came and aggravated Connie today. He was quite fussy but calmed down.
Daddy is going to go visit now.

It appears that his "poor suck" is due to pain/sedating drugs. When he has gone several hours with no pain/sedating drugs, he drinks from a bottle just fine. He didn't do well with nursing today. The nurse thinks he still had the morphine in his system from pulling the chest tube.
I think all but 2 feeds today were from the bottle and he's drinking the whole 160 cc's. He's starting to get a very sore bottom, probably from all the antibiotics he's on. If it's not one thing, it's another making him uncomfortable.
His other two chest tubes have put out nothing over the last few shifts. He should get them out tomorrow if nothing new comes out.
The nurses planned on him going to the OR tomorrow afternoon for his pacemaker but Dr. Bove has two fairly long procedures scheduled tomorrow so it is sounding more likely that he'll go on Thursday.
He did not like the OT girl, Stacy today. She's the one he screamed at last week when she shook a rattle in front of his face. She woke him up and started trying to play with him. He is very unsure of everyone right now and so was not pleased by this. He was still upset when she left which was when we tried to nurse so this may have had something to do with the failed attempt. She said that he was tracking visually for her. Better to the right though than the left. He still looks like he doesn't recognize us most of the time.
Our nurse yesterday called Child Life to have them bring Connie and his roommate something. They each got crib toys that attach to the rail and play music and light up. Greg went to find some D batteries so we can get some soothing stimulation for him. He's also gotten a stuffed Lion and a fleece blanket from them. Volunteers crotcheted him a small lovie blanket too. People also come around with new books for the kids. They even gave one to Mary Kathleen.
Yesterday I had an issue with my pump and the people in the PCTU got together and got the lactation consultants involved, along with the social worker and the unit host. Turned out that the lactation consultant's advice was to go to a pharmacy a few miles away and buy the new parts. The unit folks were very unhappy with that response so they sent the unit host to the store for me since I'm not from here and was here by myself at the time. They were so accommodating and willing to go to any length so that I could be at my son's side and not running around a town that I am not familiar with looking for stuff that the hospital should provide to nursing mothers. Very nice.
Mary Kathleen took a nice nap and we took a little break and went to Steve & Barry's, a U of M retailer a few miles away. Mook got a pink Michigan hoodie and Connie got the traditional gold and navy colors on his sweatshirt. I got a zippered Michigan hoodie b/c we came up here in August with shorts and sleeveless shirts and the temps barely get into the 60's some days. I'm not outside much, but the MedInn and the hospital are FREEZING, and I'm not usually a cold person. When you walk around the streets and see the students, most are dressed in fleece jackets and long pants already. It looks like December in St. Louis, but with leaves on the trees. Crazy.

Connie's middle chest tube (medial-steinal??) has been removed. Now he only has the two tubes left in his pleural spaces. He seems like he feels much better and is laying calm and even playing and watching some tv. He laughed, though not out loud, when the nurse specialist removed the tube. Maybe it was the 1/4 dose of morphine making him smile, maybe not!! I'm going to get to try to nurse him at 2:30. We'll see if it works. At his 11:30 bottle he didn't do as well as he had done this AM, but he was kind of out of it from the meds so maybe that's what it was.

Sorry, I thought Greg put the early morning update on. Here's the latest:
Don't know when surgery to place pacemaker will be. They do have to attach the leads to the heart. We are not doing further repair to the right side at this time!! Yay! Dr. Bove said that the systemic pressure is about where it was after surgery. We will watch it closely when we're back home with frequent echos and possibly more caths. Just think, if he were not needing the pacemaker, we'd be moved to moderate care today.
He has been easily upset today. This is common for kids with neurological injuries. He is not purposefully moving arms but legs are quite deliberately kicking. He is virtually inconsolable when he fusses. Trying to soothe him sometimes makes him more upset. He did drink 160cc's from a bottle this morning in only 20 minutes. The nurse today said we'll try nursing with him in the bed.
His one chest tube has quit draining and will be pulled today around 11 or 11:30. He had to go NPO (without food) before this procedure. He's had tylenol and a little versed but has been awake most of the morning. I held him for an hour an a half. I was holding him when PT came by to work with him. Chris is our PT and he was great. He even got Connie TO SMILE!! First smile since August 27th. He was playing pat-a-cake with him and his mouth made a little smile. His eyes didn't light up like they usually do, but his mouth definitely smiled. I even asked Chris if that was a smile and he agreed. Connie did it three times! He also did that look that he gives when someone ooos and ahhhs over him. Kind of those flirty eyes and turning the head a bit like he's shy. It looked a little like our old Connie for a second. I wanted to jump up and call everyone to come see, but it just didn't work out like that. What a hopeful sign! Thank you, Lord. The PT agrees with Aunt Barb, in that Connie is afraid of everyone and everything right now. With his compromised vision, he probably doesn't even see people coming at him and before he knows it he's being hurt so he doesn't trust any touch right now. Not even Mom's. We have to reteach him that our touch is okay and can be soothing.
I asked if Connie could be moved to a quieter bedspace. There is a room with a door that has been empty for two days but they won't put him there b/c it is a single room and then they'd have to pay an extra nurse for him b/c he's technically stable enough to be doubled up. The room he's in now is probably the noisiest and has the most commotion of all. It's pretty unfortunate, actually. Kids with neuro issues really benefit from very little noise and light.

MONDAY, SEPTEMBER 10, 2007 07:41 PM, CDT
Just opened a care package from our wonderful Assumption family. It included comfort foods, snacks, magazines and Christian music cd's from our talented group, Praz. It also included prayer cards and a rosary blessed by Pope John Paul II. We want to thank everyone from Assumption who is praying for us and our baby and for donating to the package. Thank you to Jeanette for letting us borrow your very sacred rosary and to Jennifer for organizing the donations. We miss you all and can't wait to be back home to thank you in person.

MONDAY, SEPTEMBER 10, 2007 04:43 PM, CDT
Just got the word from Connie's card fellow about the cath today. They found that there is narrowing, which was expected, as Dr. Bove had to close up and get out of there during the initial surgery since it had gone on long enough. I'm not sure they expected it this soon or what, but that is the case. They don't know where to proceed from here. If he were 6 mos to 1yr out of surgery, he'd be able to have balloon angioplasty done to open it up, but since it is not healed yet, that isn't possible. They said they will meet with Dr. Bove and the team to discuss the risks and benefits to further treatment at this time, or waiting and ballooning it later on. They said his systemic pressure is at 75% and they don't like it to be above 50%. In laymen's terms, his right side is working too hard. I called our St. Louis cardiologist and his opinion, based on my non-medical description of the procedure, is to let Connie's brain try to heal and just put in the pacemaker at this time. He said we have a very good interventionalist (person who would do the ballooning) in St. Louis so we could have it done there (Bove doesn't do those anyway, I don't think). He would like to see them let Connie try to recover without having to go on bypass again so soon. He said he can live with the 75%, especially if certain factors (which were over my head) were present. He said part of their decision may rest on the uncertainty of who would be following Connie at home (doctor-wise) and on what our options are as far as getting the balloon done there if it needed to be done quickly. He said he'd shoot Dr. Bove an email and let him know about our discussion and what his opinion was and what our options are in St. Louis. He gave me some questions to ask and made me feel better about the pacemaker surgery. He said that they "probably" already attached pacer lines in his heart and fed them into the abdomen so all they would have to do is insert the pacer into the abdomen and connect it. He'd probably only be under for about 45 minutes and not on bypass at all. As far as procedures go, it's not anything along the lines of what he's already had.
That's all I've got for now. Thanks for looking in.

MONDAY, SEPTEMBER 10, 2007 12:42 PM, CDT
Connie was taken for his cath right around 1pm today. It is expected to last at least a couple of hours. Of course it will probably be over at shift change and I won't be able to see him till 4. The cath lab will send a report to the card team and I'd imagine they'd discuss it with Dr. Bove before telling me what the next step will be. He is in surgery today, I think, so it may not be till much later this evening or tomorrow before we know what is going to happen. I heard him crying as they wheeled him away. I hate not being able to go with him.
He rested more comfortable the last 1/2 of the morning. As long as I patted his leg he seemed rather peaceful. I am rejoicing for that. His nurse today will be his for 12 hours. Another reason to rejoice.
Just got a bite and now I'm going to try to rest while he's away. Probably won't update again until the 7pm shift change. Hopefully Mookie, Grandpa and Greg will be here by then.

MONDAY, SEPTEMBER 10, 2007 10:17 AM, CDT
Cath is set for 1pm-ish. Consent signed and everything. His feeds are being withheld so pray he doesn't get too mad or hungry. Now the buzz is possible surgery Weds, pending Dr. Bove's schedule.
He has been more comfortable, but still restless and fidgety. They think his "cloudiness" neurologically may be the cause, but it sounds like it is a good sign of possible neuro recovery. His movements today are called "non-purposeful".
A deacon came by today to visit, which was nice. I learned (I guess I should have already known, but oh well) that he cannot receive the sacrament of Annointing of the Sick. It isn't done unless a person is of the age of reason. I was hoping he could have some sort of special blessing or something before his next surgery later this week.
We are still waiting on getting into the RMH. The MedInn says we can stay as long as needed, so that's a relief if nothing opens up across the street.

MONDAY, SEPTEMBER 10, 2007 06:21 AM, CDT
7AM: Connie has been awake (pretty much for the first time since yesterday morning) for the last two hours but miserable. He isn't sobbing, just visibly uncomfortable. I tried everything I could think of for the past two hours. I changed him, fed him, got the air out of his tummy, turned him, sang to him, stroked his head and arms and legs, patted his bottom. He still had two hours until he could get more pain meds so the nurse gave him adavan. When that didn't do it she gave him versed. After two hours of me trying everything I could do to soothe him I asked for the doctor. Two cards came in and looked at him. They actually think he looks better color wise, etc. He had good bowel sounds and checked out okay. Then it hit me, maybe he was a little consipated. He had had some bm's but they were loose and not seedy like they like. So, we tried a glycerin suppository. I'm not sure if it worked yet as I had to leave b/c of shift change. The next step is to try morphine again. I hope we don't have to go back there.

SUNDAY, SEPTEMBER 09, 2007 10:06 PM, CDT
I gave Connie his "bath" tonight. He cried for most of it. He never was one for spongebaths! His weight was up a bit, but I'm not sure how accurate it was given the fact that he wouldn't quit moving. He had his 10:00 feeding (tube) and just before 10 he got another dose of pain meds. Please pray that his chest tubes will quit draining so that they can be pulled soon and give him some relief. He's been put back on something for his stomach. Some blood was coming back up the tube when they check for air in his belly or residuals from his feeds. It may just be from irritation caused when the tube was put in, or it could be an ulcer or some gastroenteritis (sp?). Better to be safe than sorry. He had it the last time he got the tube put in too so maybe it's just irritation. I had the Tigers game on for him this afternoon but he didn't watch. I think he misses the Cardinals. Those Tigers played about the way Michigan has been playing lately!

SUNDAY, SEPTEMBER 09, 2007 06:20 PM, CDT
Connie continues to wake up a little before time to feed very upset. Every time he is awake he is upset. We're hoping that alternating the tylenol and oxycodone will get ahead of his pain and maybe let him rest tonight so that tomorrow he might be a little more playful.
Status of further cardiac procedures: We are hoping to get a cardiac cath either Monday or Tuesday. We were told "early next week." The charge nurse, Erica, just told me that he is NOT on the surgery schedule for next week at all. That's not to say he can't be added, but Mon-Weds the surgery schedule is full anyway so the absolute earliest he would have his pacemaker implanted or have any other procedure to correct whatever they find during the cath would be next Thursday or Friday, Sept 13 or 14. It doesn't look like we'll be home anytime soon:(

SUNDAY, SEPTEMBER 09, 2007 04:56 PM, CDT
The oxycodone really knocks him for a loop--surprise, surprise. He's been sleeping all day, except when he wakes up crying. He had to have tylenol about two hours before he was allowed to have any more oxycodone. He's been eating 120cc's every three hours and doing fine (through the feeding tube). When the food gets put into the tube, we also try to give him some by bottle so that he associated the feeling of getting full with the act of sucking--and doesn't get lazy. He's not doing so great with this. They said if it agitates him more to just stop and let him get it in the tube only. He got turned and laid on his belly for the first time today. Took a nice nap that way but when we flipped him back over, the pacer controls and chest tubes left big red imprints on his little belly. The nurses think he hurts. He didn't move his arms until just about 5:15, when the oxycodone was wearing off. He rubbed his eye with his left arm. Right arm does not move today. Both feet kick when he cries. I can't wait until he can get those three horrible chest tubes out. Pray that they stop draining so that they can be removed and he can be more comfortable. The plan is that he will be cathed as soon as they can fit him in. Have no idea when. We had a great nurse, Kelli, today. She is very knowledgeable and gets the charge nurse when necessary.
By the way, Connie's roommate is a 2.5 yr old, beautiful little boy from Albania. He is over here to get his heart fixed and the whole deal is funded by Samaritan's Purse, a charitable organization run by Billy Graham's son. It is a wonderful organization. I met another family that is here b/c of them and the families stay with host homes and interpreters and everything is organized by this charity. I know of Samaritan's Purse b/c of my MOPS group who collected shoeboxes full of Christmas goodies to be distributed along with the Gospel Story to children in third world countries. If you have a chance, check out their website (www.samaritanspurse.org) and possibly consider giving to one of their causes. It really makes giving real when you see this little boy and his mother. He probably wouldn't be alive today if it weren't for that group.

SUNDAY, SEPTEMBER 09, 2007 12:43 PM, CDT
Tolerating 120 cc's every three hours by NG tube feeding very well. Only 3 cc's residual. Was given Oxycodone at 11:15 am. Woke up three hours after first feed and was hungry. Was fed through NG tube and fell back asleep. Not moving arms, but moving legs. Probably too sore from the chest tubes to move the arms. That's our hope anyway.

SUNDAY, SEPTEMBER 09, 2007 08:59 AM, CDT
10am: Connie had a bad night again. Between 9pm and 8:10 am he only had 130 cc's of milk. He gets agitated while trying to drink the bottle so as soon as he wakes up they are going to put in a feeding tube. I am frustrated that they don't call. He now has a big sign on his bed that says to call me if he is fussy, not eating or inconsolable. The nurses this am think that he is so hungry and getting mad that he can't get it fast enough. If he is still getting agitated after being tube fed we will pursue other avenues to try to find out what is wrong. His nurse said, "It's a guessing game." He won't be nursed for a while:(
He is tolerating the nasal cannula fine so far. Since his weight is down again, they are going down from lasix every 6 hours to lasix every 8.

SUNDAY, SEPTEMBER 09, 2007 05:12 AM, CDT
5AM: Splints are off for a break. Jacqueline is his nurse overnight and she said he had been pretty fussy. She gave him more adavan and he is resting comfortably now. He had two medium sized bm's, but only drank about 70 cc's for her. She said he would suck for a second and then stop and start crying again. He had over 150 cc's at each feeding yesterday before getting any adavan so I'm not sure if his inability to drink much is from the sedation or if it is from her giving up too quickly on the bottle feeding. She did have two kids to take care of so she may not have had the time to keep trying. He did fine weaning down on the O2 and is getting the regular cannula today instead of the high flow.

11:00PM--shift change. Frustrated again about nursing. He had a 7a-3p nurse, a 3p-7p nurse, a 7p-12a nurse and will have a 12a-7a nurse. I was told that he would have no more than three in a 24 hour period and it is happening again. The thing is, only one of the four he's had so far today has ever seen him before in the almost two weeks he's been here. It would be nice if we could gauge improvement or backsliding from day to day. Also, every nurse has a different opinion on his behaviors. One says that a certain behavior indicates pain and treats him for that. Another says it's gas and treats him for that. Another says it's anxiety and treats him for that. Another says it's just the neuro stuff and doesn't treat it at all. I know I'm his mother, but I've never seen a kid recover from a big surgery and don't know how they behave after surgery. Ugh. I talked to the charge nurse tonight who basically said it was out of her control.
Connie got rocked and held from 8:30-10:30 tonight. I gave him is 9:00 bottle. He ate about 6 oz. He was pretty agitated and we ended up giving him some adavan. He hadn't had any since yesterday at 8pm. But since we had to bathe and weigh him and get him back to bed, he needed something to settle down. He weighs less than yesterday so I'm thinking they will back down on the lasix some tomorrow or tonight. He ate great today. I'm blaming his lack of arm movement and general behavior today on his dehydration. I got his splints on him finally after his sponge bath. He was all tucked in a sleeping. I know his roommate already was bathed and tucked in so all that had to be done was meds tonight. Hopefully the room will stay quiet and he can get some more much needed rest. If he wakes and is up, they may change that chest tube dressing as it is leaking again. It isn't bad. It is old drainage, probably from right after they soochered yesterday. Since he just settled into bed, we thought we should wait until he wakes to eat tonight or until morning, but definitely sometime tomorrow if not tonight. They are weaning down the high flow O2 to 30% and 3 liters. They are going to do a gas in the morning and see if he is okay to go back to the regular nasal cannula. I think that is all for tonight.

Drank over 5 oz at his last feed. He was given a tylenol suppository to kill two birds. We think he needs to have another bm so that will help relieve any discomfort as well as get things moving. His eyes are looking less sunken in tonight. Must be all that good milk! I'm anxious to see what he weighs in the morning. I do hope his night nurse is gentle with him tonight. Every time he's been touched today he screams. Even by me. He hasn't worn his splints because the 7a-3p nurse said he didn't need them anymore. I asked the 3p-7p nurse at 6 if he'd be getting them on and she said that she saw them in his drawer but wasn't told anything about them from his morning nurse at report. There is a big sign on his bed from OT with instructions on when and how to wear them! She then added that it isn't up to the nurse to decide whether he needs them or not. He is looser and isn't fisting unless he's crying, but his hands are still generally curved with his fingers not stretched out like they should be. After the shift change I'll say something to the night nurse about it and we'll go from there.
Thank you for the stable day. I praise you for allowing me the chance to hold him again. Thank you for helping Connie drink his bottles and avoid the feeding tube. Continue to grant us peace as the time draws near for further testing/surgery on his heart. Help us take it one day at a time and not look toward tomorrow just yet. In Jesus' name I pray, Amen.
P.S. On the day Conway was born, March 3rd, we also passed a Con-Way freight truck on Hwy 70 on our way to the hospital for his delivery. Also the hospital where he was born is bordered by Conway Road.

3PM: Shift Change. Found out why Connie has been so sleepy today. Turns out that the mom of his roommate stayed most of last night because she was afraid to leave her baby after the way she saw them handle Conway. According to her he cried a lot because they "wouldn't leave him alone" and they were very rough with him (getting his lines snagged, etc.). I'm letting it go, but if either one of them is assigned to Connie again--it was one nurse and her orientee--I will ask for a change.
Back to the good stuff: Connie drank over 7 oz at one feeding from a bottle early this afternoon. He kicks his legs while he's drinking just like how he kicks his legs at home while eating. Most of the day his eyes have not appeared to be seeing. He hasn't really focused much. He did start to a bit around the feeding time, but just for a few seconds. His nurse said she didn't see any focusing until later either. She described his cries as "neuro cries". She said that kids with neuro issues have a higher pitched cry. It doesn't sound like his old cry. It sounds like a scared cry to me. She did say (and it was her first day seeing him) that to her, he looks like a kid who will come back in time--even a matter of days. She kept saying, "You aren't going to believe how different he'll be this time next week." Any time he is messed with at all he cries out. We had to wake him up to change his pants and try to get him to eat. Even the skin on his eyelids is loose from being so dehydrated. When he squints to cry it wrinkles up like nothing I've ever seen. His eyes look quite disturbing to me today, but hopefully with the eating that he's doing now that'll turn around quickly.
I got to hold him and rock him for about 45 minutes. He was extremely agitated and had been since before he started eating even, but as soon as she got the adavan to give him, he fell asleep and stayed that way. He has had no pain meds or sedation in almost 24 hours. He got some tylenol and adavan yesterday because they had messed with his chest tube resoochering it. I'm glad he calmed down on his own when he was in my arms and didn't have to go back in bed and get drugged som more. He seemed a little less himself during his awake time today. Maybe he was still tired.
Everyone's back home safe and sound after uneventful flights.

Hey all, greg here...I'm in St. Louis right now since God blessed us with a large amount of orders (www.rockybox.com). I'm producing boxes all weekend and will hopefully have them finished in time to shoot back up to Michigan on Monday.Erin & I were SPEECHLESS when we received the money that was gathered from Harris Elementary and other friends of the family. To Carol Stadtler and all of you who donated I just wanted to say THANKS A LOT FOR MAKING US CRY EVEN MORE!!! ...like we have any tears left anyway!!For those of you that have been offering prayers, I want you to know that we value those just as much!So basically, THANK YOU EVERYONE!!! Your support, whether monitary, spiritually or both are undeserved and we humbly accept them! Even the heathens (Alfi =)) are helping in ways we can never repay!Just a side note, I wanted to say a special thank you to Josh, Alif, Leonard, Carrie, Ryan, Jessica, Rob, John, Patrick, Mikie and Laura from United Forensics. I've only been there a handful of months but the support I've received from my employer and coworkers is unfathomable in todays rat race. Thank you for letting me know I am family!!! I know it's got to be tough from an employer's perspective as to how to handle my dilemma, and I can't believe the support I've received.God bless all of you!Greg

Just finished folding the laundry and pumping while he napped. When I went back down with the bottle brush and dish soap, his nurse was at lunch and Mike, a young nurse, was taking over for her during her break. Wouldn't you know that as soon as a guy gets in charge, he's got the TV on with cartoons playing! Connie has the speaker by his head and is sucking his paci quietly with his eyes 1/2 open staring at the tube! He can barely stay awake. I am pretty sure that if Greg were a nurse we'd see that same type of set up as well, ha ha! Since he's catching up on rest I'm gonna grab some lunch real quick before the cafe closes.
Michigan is playing Oregon today. Apparently in the college world that is a big deal. I hope they don't flop as bad as last weekend. Everybody was walking around here like they'd just been told that their dog had died.

Well, everyone has gone back to STL. Connie took a nice rest this AM from about 4 until almost 10:00. He was exhausted and only took cat naps all day yesterday. He woke up b/c of a diaper blowout. Even had to change his bedding! He is dehydrated and his eyes are sunken in. He is below his dry weight, the amount he weighed before surgery. For this reason, they are scaling back on his diuretics.He was getting only 80cc's per feed so now they say feed him until he stops eating. Might get to try nursing tomorrow:) His hands aren't tight today. Blood gases great. Nothing growing on cultures. Greg said this is the best birthday present he could ask for!
We received a very generous contribution from my Harris family, past and present, to help out with all the expense of travel and being away from home and work for such an extended time. I don't know who all donated to the fund. I wish I did. Carol Stadler has been an angel to us spritually and emotionally on this journey. She also was the organizer for this donation. We thank everyone who helped out with this and everyone who has said a prayer for Connie. We feel so blessed and so loved. Thank you.

4AM: Conway has had a good night. He had a big BM, drank another bottle (almost 3 oz, so we're working our way back up), cried like a normal baby and fell back asleep. I think since about 6 pm he had been getting a bottle every 2-3 hours, but was so sleepy that he only got one overnight. I'm so happy that he didn't get the feeding tube (NG) put back in.
Yesterday my presence seemed to aggravate him more than calm him. He was overtired in the first place, and being in a room with all the activity that surrounds 3 other kids doesn't help. He can barely even get any sleep sharing room at home! On top of that, he hadn't been allowed to eat since 3 AM on 9/6. So, he gone about 40 hours with no food (IV nutrition only). His mouth was going crazy trying to suck something and he kept getting frustrated when nothing would come out. When I came around it got worse so I stayed away for the most part until after he had been fed. Nurse Jen (whose humor and general personality reminds me of Lindsey Schweppe's Mom:) got the cards to let him have a bottle of pedialyte. They wanted to tube feed b/c of respiration and the possiblilty of aspiration. An hour after the pediatlyte, he got milk and has been doing great ever since. He takes a long time to drink and Nurse Sarah says his suck is a little inconsistent. We're not sure if it's because he's still "waking up", the fact that he was on Adavan yesterday, the fact that he was deleriously hungry and just going crazy with the bottle or the fact that he never took bottles regularly at home before we came anyway. Maybe it's a combination of all of the above. We might address it with OT in the near future.
PT/OT: He got his splints on his hands and legs today. Poor baby tries to rub his eyes cause he's tired and he hits himself with those things. His face looks raw from being scratched with the velcro straps! He wears them for four hours on, four hours off.
Neuro: A new doc is on this weekend and then another new one takes over Monday. It's kind of a shame that the one who had been following him and saw him "at his worst" wasn't there yesterday to see the remarkable improvement. They think his eyes are still "slow to react" but they do react. Overall, very happy with the progress. Dr. Leiber knows lots of good neuro docs in St. Louis, both at St. John's and at Children's, for us to follow up with after we get home.
Heart Status: Probably Monday or Tuesday (all they'll say is early next week), barring any infection, Conway will have a procedure called a cardiac catheterization. They go up through the femoral artery and look at the heart. They specifically want to see the leaking aorta and the narrowing around the pulmonary artery/pulmonary valve. Our card in St. Louis said that Dr. Bove mentioned that he suspected one might be warranted because of the level of difficulty of the repair. I do not know if any repairs will be able to be made through the cath or if we will just let it go for now or if he will need additional open heart surgery on this trip. We are fairly certain that a pacemaker will be implanted, but I think that surgery is pending the findings of the catheterization. The pacer is put into the belly area and the wires go up and attach to the heart.
I can't think about next week without getting completely overwhelmed. For today I will try to just revel in this day, knowing that my God is doing miraculous things with my son. Just Thursday he was going downhill fast and all of a sudden, he's improved immensely. It really is One Day at a Time.

FRIDAY, SEPTEMBER 07, 2007 05:27 PM, CDT
Hi everyone, greg here...
I'm not a big Christian rock fan, but this song really speaks to me each time I hear it as it really describes blind faith well. It's by the Barlow Girls and called "Never Alone." I've uploaded it and here's a link:
For those of you that can't hear it, here are the lyrics:
I waited for you todayBut You didn't showNo.No.No.I needed You todaySo where did you go?You told me to callyou said You'd be thereAnd though I haven't seen YouAre You still there?ChorusI cried out with no reply andI can't feel You by my sideSo I'll hold tight to what I knowYou're here and I'm never alone.And though I can not see Youand I can't explain why.Such a deep, reassuranceYou've placed in my life ohWe cannot separate'Cause You're part of meand though You're invisibleI'll trust the unseenChorusI cried out with no replyAnd I can't feel You by my sideSo I'll hold tight to what I knowYou're here and I'm never aloneWe cannot separateYou're part of meand though You're invisibleI'll trust the unseenChorusI cried out with no replyand I can't feel You by my sideSo I'll hold tight to what I knowYou're here and I'm never alone

FRIDAY, SEPTEMBER 07, 2007 11:55 AM, CDT
Since Conway has been so comfortable today, we took Mary Kathleen for a long walk and to a little pub called Casey's. We had lunch and then took a cab back to the hospital (we got caught out in the rain once and feared it again). God laughed at my plans. It is the first time it has rained since we've been here and it's the only day I've been able to get out of here. Go figure! Just got back from seeing him (Grandma and Aunt Barb are with him now) and his is going to town on his pacifier, kicking his legs playfully and the nurse says she thinks he is tracking with his eyes. He has gotten his splints for his hands and legs but we can take them off if we are interacting with him. He is not nearly as tight when he's relaxed which is why I feel like some of his behavior that makes us think he has neuro problems could partly be fear or pain causing him to tense up so much. He was repositioned (they turn them so they don't get bedsores) and he rolled back on his own. That is great news. We are hanging on to his triumphs and no matter what else happens today, we have that. Even the neuro team said that we should judge him by his "best performance", meaning that if he takes a bottle at one point and can't later on, we know he can take a bottle. Of course now his feeding tube has even been pulled and he's only getting IV lipids and TPN, but we'll get there again someday.
Keep the prayers coming. We will find out later what the plan is with his chest tubes. One may come out today b/c it is leaking. They may have to replace it though, which we don't really want. Despite the rain here, maybe there's a glimpse of sun shining down from above onto bed one of the PCTU. We see it, anyway. Thanks especially to Carol and Ronnie for reminding me about God's promises and the joy that follows the night. That really helped.
We praise you for your continued healing of Connie. We thank you that he is stabilizing today and that he seems free from agitation. We thank you for helping the doctors and nurses help him. We continue to lift him to you each minute of the day. Help us remember to praise you even in the storm. In Jesus' name we pray, Amen.

FRIDAY, SEPTEMBER 07, 2007 07:49 AM, CDT
5AM: His chest tube dressing is leaking so it has been changed twice during the night. He cried when they messed with him for this. He is doing much better with the blood transfusion. They gave him some adavan because it sedates longer than the versed. I doubt we'll see any neuro hurdles today b/c I think they want to keep him pretty calm and sleepy in order to ease the respiration as much as possible. His blood gases looked good through the night.

I had a huge update but Caring Bridge ate it again. I'll just close with this:
We had a bad day. It is better now, but we're not out of the woods. I'll explain more when I'm not so tired. Further testing required, but can't do until we rule out infections. Just trying to keep him stable. He is septic, has aortic insufficiency and a narrowing of his pulmonary artery or valve, not sure yet. He got a blood transfusion and a bunch of other stuff. Have been giving versed (sedative) all evening to keep him calm.
Neuro is very pleased with his progress today.
Good night.

1:00PM--Connie has been moved. Since his nurse said it she wanted to keep him (which is what we wanted) they moved him out of the room he was in. He's now in room with three other kids and right after I got back from pumping, they asked me to leave because they were getting an O.R. case back and it would be at least an hour to an hour and one half. When I got in there they were doing an echo on him. His last labs looked a tiny bit better and the card thinks he is doing okay on the high flow o2 for now. They are waiting on his milrinone to kick in (the heart med). He did say that his heart was squeezing well on the echo. I also overheard something about two residual VSD's on the septum. One card this am thought his murmur was louder. He doesn't look peaceful now. He is in and out and is trying to move his head but can't. My heart is breaking. When they moved him his pressures went crazy.
I am thanking the Lord that his does not require the ventilator at this point and that his heart is squeezing well on it's own and asking God to keep holding on to my little boy, especially when I can't be in there.

They are helping Connie more. They are concerned he will tire out later today and they don't want that. They are giving him heart meds again to help perfuse oxygen out to the body better. They put him on High Flow nasal canula which is the step before putting him back on the vent. He is looking "sick" to them. No fevers but blood gases show increase in lactate and other areas signaling possible infection. No report on yesterdays' cultures yet.
OT came to see him and they are for sure making splints for his hands. He'll get them tomorrow and then they will see him 3-5 times per week. She gave me some things to do with him (hands to mouth, etc.). Said lots of repitition is needed so that the brain can lay down new pathways and relearn. PT will come later today.
He hasn't had a feed since early AM because it will make it harder for him and b/c they want to do more tesing. He'll get an echo at some point.
We have a wonderful nurse. She was going to be moved at 11am and Connie would have gotten another new face but she insisted that she was staying with him. I had shared my concerns over the lack of consistency for him and they are going to work on that. She treats us like we're human and have real feelings. I walked in in the middle of rounds and got blindsided by the 8 people at his bedside. They had grim faces and I didn't know anything about his lab tests. I'm still feel a little "thrown for a loop". I had MY plan for today but it wasn't God's plan so I'm still working on accepting God's plan.
Neuro Status: I have never seen him this "alert". The downside is that while he has been more expressive, and I want to celebrate that, it has been negative expressions. He has cried. He has screamed. He has shown fear. These are all very difficult to witness. Especially when you can't fix it. The OT was shaking a rattle in front of him and he screamed in fear. The whole room was taken back. He cried a ton when they sat him up and when they switched him over to the high flow o2.
Good and Gracious God,
We come before you now praising you for restoring some of Conway's ability to express emotion. We ask that you give him peace and allow him to rest to fight off whatever is making him sick. We fear that if he continues to decline that he will be put back on the ventilator which requires sedation. We ask that you keep him strong enough to limit the medication going into his body. We know you are all powerful and all knowing. When we are discouraged by the lack of answers, we remind ourselves that you have the answers and have had them since before Conway was even born. Help us to remember that and lean on you and your word during this time. In Jesus' name we pray, Amen.

Hi everyone! Greg here,Connie did some new things this morning that only I got to see as Erin was pumping. He was the most alert I've ever seen him. He was kicking both his legs wildly. He went five minutes without his eyes rolling back in his head. He yelled five times in a row as though trying to speak. He puckerd his face and ALMOST CRIED.His last feeding was at 3am as they now suspect an infection because his lactate is up, potassium down and oxygen down. He ran a fever yesterday and looks a little pekid this morning. So, they're broadening the antibiotic spectrum and measuring his blood gases often today. They just want to be catching a possible infection early on. They'll also be doing an echo today to check his heart to make sure nothing's up. They're pretty confident they won't find anything wrong, but again, better safe than sorry.Keep praying, it's working!!Sending our love and deepest gratitude,Greg & Erin & family

Here's a video of last night and tonight.
Connie in Mommy's Arms
I got to hold him for the very first time since his surgery and Chuck, our nurse, said that tomorrow I can hold him even more. Since there isn't a much of a medical plan for him at this point, we're going to start the soothing, comforting Mommy and Daddy plan. It includes rocking, singing, massaging, kissing and loving.
Cardiac Status: He is doing great. He had a huge operation and is recovering well. He has arrythmias due to his conduction tissue being injured during the surgery so it is more likely than not that he'll have a permanent pacemaker implanted. This requires surgery, being back on the ventilator and a longer stay in the ICU. Not sure when or even for sure if it will happen, but it should have corrected itself by now if it was going to.
Neurological Status: A big question mark. His EEG shows slight abnormalities in brain function and his CT scan shows "fuzziness". No one knows what this means or what has or will be affected. He acts like a baby with brain damage. His eyes roll in the back of his head. They aren't always working together. They usually aren't focused on anyone or anything. He sometimes shakes his head back and forth kind of like he has a palsy. His hands get very clenched fists and you can hardly straighten his arms and legs or open his hands. The neuro team feels at this point that the most reasonable explanation for his condition at this point is that during the surgery his brain was deprived of oxygen (a risk associated with going on the heart lung machine). They do not know if/to what extent a recovery is possible.
Therapy Status: We've asked about PT/OT/Rehab. They are having OT come tomorrow for an eval and said they could help with bottle feeding and relearning how to suck/swallow. They said he will be fitted for splints which he will wear for four hour increments that will force his hands open so he doesn't lose flexibility. We are hopeful that they will give us some good suggestions and ways to work with him.
Belly Status: Connie's tummy has been getting more and more distended. They were going to "watch" it and "wait and see". I didn't leave during shift change tonight and was there during evening rounds and I said that I was concerned because he wasn't digesting his feeds and had pain at every feed. He's had so much air in his tummy and almost 1/2 his feed gets pulled out each time too. They said they'd do an x-ray of the abdomen. Turns out he is full of you know what. He's been pooping about three times a day for the last three days, but he hadn't pooped anything for the five days prior so he's going to be getting some glycerin suppositories to help keep things moving. They talked about a drug called Reglan to help with digestion, but it has neurological side effects. I definitely don't want that drug introduced. If we lay him on his right side and remove the air from his belly he digests just fine. Pray that he keeps pooping!
Many of you know that Conway is a huge Cardinals fan. He has loved seeing the ballgames on TV since he was a newborn. Our nurse, Chuck, had ESPN on tonight in "The Boy's Room" (Connie, his two year old male roommate and his male nurse) and it was a Dodgers game. There was a glimmer in his eye like he recognized something familiar about the game.
Thanks for the messages and prayers. Each day brings new hope for recovery.
I discovered tonight that Satan has been trying to make me doubt God's power and plan. When I took Connie for his second echo, I just knew that we would see a perfect heart and that God would have healed him himself, without needing any surgery. That didn't happen. Now I am confident that God will restore Connie's health and brain and heart function fully and yet I hear little whispers saying, "He didn't fix him the last time; what makes you think he'll do it this time?" I know that is the voice of Satan. When I hear that I have to immediately call upon the Lord to take those thoughts and fears and doubts from me. He has raised from the dead. He has healed the sick. He is an awesome God and like the song says, He reigns.

Erin just spoke with Dr. Bromburg, Conway's cardiologist back in St. Louis. After describing Connie's condition, Dr. Bromburg expressed great concern and said it's time that we start asking some very pointed questions about his brain. He said we're past cardiologists at this point and he gave us questions to ask the neurologists. He said there's nothing on an MRI the the recent EEG wouldn't tell us regarding abnormal brain activity.I'm going back down now to see Conway and go neurologist-hunting.Greg

12 Noon: Conway doesn't seem to be in pain. He has had some more eye movement. Still lots of rolling back and not rolling the same (one goes one way, the other goes the other way). I've been with him since 8:30 and he had one bout of discomfort. I asked Michelle to check his belly and he had quite a bit of air so she emptied it. He also had some undigested milk, but not much. She gave him the milk back and checked it again later and the milk was gone so he's digesting. He was starting to hint around at fussing again when I left, but it was time for his feed and I'm sure he was wet since he had been given his diuretic. Neuro still not by today. Michelle or Greg will ask if I'm not there when we will start testing vision since he's more awake and definitely not drug induced sedated at this point. Michelle also is going to get the ball rolling for us on the OT end. She will ask them for an assessment and said they may do a swallowing test (it's done by x-ray). He took about 50 cc's of breastmilk in a bottle. It's the first time he's tasted milk since August 27th. I think he loved it, but you can't really tell. He didn't quite finish the feeding (took about 1/2) so he got the rest through his tube. At 11:00 Michelle noticed that the suction had been turned off and disconnected from his chest tubes and that no one had told her or noted it.
Thank you for easing Connie's pain and for waking him up more this morning. Please continue to do your will for him and for us. We thank you for Michelle, Lord, and praise you for her proactive attitude. It gives us something to look forward to and hang on to. We ask that you continue to send your angels to us. We can see your son in so many people here. Help us to not miss those people and glimpses of Jesus because we're focusing on the negative things. You have put your servants in our lives and through their words and kindnesses, bring us closer to you. Continue to heal Connie, Lord and give him peace. We ask these things through Christ, Our Lord, Amen.

4AM--Stable and comfortable. No news.
8AM--Just after shift change nurse reports he's awake, quiet and focusing on her. Said even the RT that came in the room noyiced a change. We are guarding our feelings a bit.
Greg just called and said the nurse asked him to stand by the bed and not say anything. Connie turned his head and looked right at Daddy twice.
Healing Creator,
We thank you for your work on our son, your little lamb. We trust that this is a sign of continued healing and restoration. We love you and praise you. Amen.

11PM: 5th nurse of the day started with Connie at 7pm. Ridiculous. They missed taking his dylantin levels again. Luckily, I asked about it again (3rd time today since they haven't taken them since 9/1 and have had orders to take them every day) and they had taken the free levels only. The lab still had the blood (you have to take it before the med is given and the med had already been given) so they were able to do it. His free level is down. Still don't know what his other level is.
We got back in after the evening shift change around 8:15. Connie was visibly miserable and continued to get even moreso, quickly. His legs were shaking and fists clenched and head moving back and forth as if to say no, no, no. His eyes were rolling around the whole time in his head. We thought it was another seizure. He had had tylenol at 6pm and couldn't get more until 11 so I asked if we could do something else. They said he could have tylenol with codeine. She gave it at 8:45. By 9:45 he was still being tormented and writhing in pain. I asked for the doctor again and he came in and said he's not sure what is causing this. He's not sure if he's in pain or what. I said, "Can't something be done? He's not right." I tried to sit him up and get closer and nothing helped. I laid my hands on him and begged God to send his angels to carry away his pain. They said that it was up to me if I wanted to give him morphine or whatever. They have lots of drugs available, but it was up to me. I can't stand this pressure. I have never seen a child recover from this surgery. I don't know what they should look like or how they should act. I don't know what to treat them with. Thankfully, at 10:10, 2 hours after this started, our nurse looked to see what was in Connie's tummy through his tube. Over 1/2 of his 8:00 feeding was still there, along with all his tylenol. He's not digesting his feeds completely. A full belly compressing on those chest tubes on top of fluid retention has got to be excruciating. She pulled out 60 cc's of milk and medicine and within five minutes he was quiet and calm. Thank God she found it. That had happened earlier in the day, although not that much was still in there, but whatever nurse had him then failed to mention it to anyone of the others that took over after her.
Those two hours were agonizing for us. At one point I even asked God just to take Connie home to heaven to alleviate his suffering. I would rather not have my baby here with me than for him to suffer so. Whatever is going on neurologically doesn't even allow him to cry, but anyone can see his is hurting.
Connie was sleeping pretty peacefully at 11 when shift change started. I think we keep the same nurse all night, but we've thought wrong all day.
We will try to talk to the head of the nurses tomorrow morning when she gets in about some of the issues that have gone on the last couple of days and see if we can't start getting some continuity and better communication.

Here's the video from today as promised:
One Week Post Double Switch
7PM Status: From 4-7 Connie has been back to his sleepy self. Around 5:50 or so he started in like he was hurting so they gave him another dose of tylenol at 6pm. He hadn't had anything for pain since the tylenol at 9 am. He's so brave. New docs came around (I think they switch off every two weeks or something and we must have arrived in the middle) and suggested that Connie may get a pacemaker if his block continues past this weekend. I understand that there was a risk of block, but with this procedure it was supposed to be very low. I'm kind of in shock about it, I guess. They hooked him back up to it today (just in case his rate dropped down in the 50's). His rate has been low during sleepy times and goes up during alert times. The pacer was supposed to give his ventricle a little umph if he dropped his rate too low. I looked at it and both the atrium and ventricle were firing for him. I asked the docs why the green light was going when (the machine doing it instead of Connie) he'd been fine for days. He said that someone had it set wrong. Oh my! I don't believe my ears. My kid hasn't needed a pacemaker and now we have him on it and are making it do the work that he has been able to do! He adjusted the setting and told the nurse and she thanked me for catching that. I don't have a medical background. Why am I "catching" anything?
The other concern (other than the big neurological one) is those chest tubes. They should be finished draining and two of them have restarted in the past 24 hours. They don't anticipate it just yet, but they may have to go back to the O.R. to see what is causing it and fix it. If they did do this, they would probably go ahead and implant a permanent pacemaker just for grins (so they don't have to open him up a few days later again if they find that he's not over the block).
Dr. Bove came in and asked about him. I was visibly unhappy and told him honestly, "Well, he's not waking up yet." He didn't really respond and walked out. What a guy.
I asked the new doc if it was okay/normal that his eyes kept rolling back in his head and he looked at him and said, "Well, I can't make it stop." Nice.
We need an attitude change because we are both very negative right now. We just got a call from Pastor John at Spencer Creek Church of God and he prayed with us and gave us some encouragement. He reminded us to hand it over to God, the real healer, each and every time we get news that is not as positive. Do it right there in the room as the docs are telling us. Just say right then, "Take it Lord."

3:00pm--Connie has started to be a bit more rouseable the last 1/2 hour. He was starting to open his eyes some and even seemed to be "looking around". Definite improvement. Still very groggy and we only get a glimpse that lasts a couple of seconds. Neuro had me sit him up and he really opened themthen. He seems to be hearing great as he opens when a loud noise takes place or when one of his alarms sounds. His heart rate has been rising during these episodes of alertness. This is a good thing. We tried to take a video of it, but he wasn't cooperative for that. Of course he starts this right before stupid shift change. It's hard to leave him when you get the feeling that he's starting to turn the corner. It gives us hope, anyway. Neuro was all set to order another EEG to see if his brain activity has picked up now that he's off all sedating drugs, but most importantly to see if he's having continuing seizures. Once they heard he was more alert they said they might hold off. Cardiology put in the order, but it's up to the Neuro attending as to what they do. His chest tubes still warrant watching. They may need to give him something to help clot better or worst case scenario is go back into the O.R. to find what is bleeding and fix it. They don't forsee that option since we are this far out from surgery, but it is a possibility.
All in all, pretty hopeful day so far. His blood sugars have been good so no insulin, he's peeing again with the increase in lasix, hasn't needed anything for pain since regular tylenol at 9AM this morning. I even got three loads of laundry done! I feel a little like Wonder Woman right now. I saw this saying somewhere and thought it was funny. Kind of describes how I'm feeling right now. "I make milk. What's your superpower?" Makes me think of my teacher friends joking about how I must make some kind of special stuff since Connie always gained so well despite being told he wouldn't due to his heart condition. Then I think of them making fun of me when I had to pump every four hours in Sedona in 2005. If they could only see the freezer in POD A of the PCTU now I'd really be hearing it. There's hardly room for the other kid's food!
Still not thrilled with the staff situation. Today I "got told" twice in one shift. Since they are doubled up and too busy to change my kid's diaper, I thought I'd help out. They encourage this and I've done it before. Apparently, this nurse was not happy with the way I did it and she let me know. I held my tongue but politely replied that I was just trying to help her out since they are doubled up. She snarked back with something to the effect of she wouldn't want to see him get a line infection, blah, blah, blah. Later, right when he opened his eyes for the first time in a week practically, she decided that the way I've labeled all the milk so far is apparently not the way it's supposed to be done (I've been doing it for eight days this way and no one else said anything). So, if I didn't want all that milk thrown away, I'd have to go relabel it all.
Sorry for the vent. And it makes me feel better that it's not just me. I've watched her be snippy with others, even the staff, this whole week. Greg just kept reminding me that we only had a few more hours with her.

12PM--Connie's on his third different nurse since 7AM and may get another one at 3 PM. I think once I pump, try to get laundry going and get a bite to eat I may try to talk to someone about this. Greg is with him now. Tuesday is the big surgery day around here. There are 4 new OR cases coming in to the ICU at some point so everyone is busy taking care of getting ready for them.
Status: Not much change, but some. He seems to be moving his eyelids and occasionally opening his eyes some. He did this after I took a few pictures. Maybe it was a reaction to the flash, I'm not sure. He's also been moving his head side to side some. He is more swollen today and his weight is up. They've increased his lasix to help with this. Definitely not getting one of the chest tubes out today. They said it put out 70 cc's last night and 10 early this morning but it looks fine now. They still want to watch it.

The cardiologist that is on this morning said that the CT scan showed nothing at all to him either. Still waiting on neuro radiology for the report and neuro to decide what, if anything, to do about it. Just got a minute to update because as soon as I got down to relieve Greg, they gave me the boot because he got another new roommate and he needed a procedure done to get the fluid off his lungs. I met his parents during the pre-op testing day and both our kids had surgery the same day, albeit different procedures. We've seen each other in passing quite a bit and it's been nice to share and to hear their triumphs and trials as well.
He was moaning more than yesterday evening in the moments that I saw him just now, but I'm not sure what/when meds were given. Greg had said that the plan for today was just to give regular tylenol without codeine when needed since he had gone until almost 9:30 this morning with nothing since last night at 10pm. I think they gave him tylenol this am at 9:30, but I'm not sure. I also think they stopped the insulin, but am not sure what blood sugars have been like this morning or if it has been started again.
Just sitting tight. Pretty positive about today. Have to do laundry at some point but other people have their stuff in the machines right now. I'm sure as soon as I'm able to see Connie again that the laundry machines will become available. Somedays are just like that!
Thanks for all the guestbook entries and emails. They really keep us going when we get down.

8AM Eastern: Still "sleeping". Blood products are being given. The chest tube seems to have stopped draining out the new blood so that is good. Insulin stopped as blood sugar is under control for the moment. He hasn't had any Tylenol with Codeine since last night at 10 pm and isn't showing any signs of pain or discomfort. All good news. They haven't rounded on him yet so we don't yet know the "plan for the day". We do expect to hear from neuro at some point regarding the official report of yesterday's scan. They had talked about getting rid of one chest tube today but since it started draining again last night who knows. I'm just pleased he's comfortable, especially since he's not had any pain meds in almost 12 hours. At the same time that worries me that something's wrong with his brain. Of course, we all know he has a pretty high pain tolerance. He never even cries when he gets shots. Greg is with him now. I'm going down after I pump and shower.

4AM: Connie is still asleep. He's not giving the nurse any grunting, moaning or sign that he's in pain so she's holding off on giving more tylenol.
Connie had his bath and is on clean sheets.
We have another "thing to watch". His one chest tube which was done draining and had been done for over a day suddenly started to drain blood again. They were concerned enough to do another chest x-ray (they already do one every morning) and an ultrasound on his chest to look for a "bleeder". It has tapered off some but they are watching it closely as they once again do not have a reason for this development. They will look at his labs and vitals and drainage and may have to give him more blood if this continues and his #'s drop.
I keep hoping that after a shift change I'll walk in to the room and he'll suddenly be "awake". I just don't know what's going on with him. I just held his hand all evening last night and when I went to leave I kissed his head and whispered good night to him and he seemed like he was trying to communicate to me but his eyes didn't open and he didn't move much to speak of. Just a little noise. I wish I could understand him or he could tell me what he's feeling and what's going on with him.

MONDAY, SEPTEMBER 03, 2007 10:06 PM, CDT
11PM--Shift change. Conway seems to be more comfortable. He has tried to blink a couple of times and had some eyebrow movement. His eyes are closed. I was going to watch him get his "bath" tonight and see if he was any more vocal or emotional while being moved around, but his nurse wasn't able to get to it yet. I kind of feel like he's gotten the short end of the stick today. They try to keep nurses with the same patient as much as possible and both nurses he had yesterday and last night worked again today and tonight. The other kids in the room with him though got their same nurses from previous shifts instead of him getting the nurse that's already familiar with him. Just a gripe, I guess, but it bummed me out.
Cardiologist (the same one from the night he had the seizure) came in and said he didn't see a difference in the scans from Thursday AM and today. He said the official report will be in tomorrow AM and he was going to need them to explain to him what was different because he didn't see anything. I asked, "Do you see kids like this do okay long term?" He said, "Yes." He said there is no way to predict and there is so very little data on the implications of being on bypass, the length of time on bypass, the number of times on bypass, etc. It's just so unknown how it effects the brain. He said in the AM they (the team of card and neuro) will sit down and discuss his case and what to do. I'm so glad he seems more comfortable. He is getting tylenol with codeine every four hours and doing okay.
His chest tubes are creating a concern. Not a major one at this point, but there is some milky stuff coming out of one that they don't like to see. It is fats and other stuff and they sometimes have to treat it to make the body stop producing that. He may lose one tube tomorrow, but the other two will be watched closely.
I think that's it for tonight. He's resting comfortably so I'm going to try to rest. We met a nice couple whose little boy (7 days old) has Hypoplastic Left Heart Syndrome and is having his first of 3 surgeries tomorrow morning. I got the honor of taking pictures of the mom as she got to hold her little boy for the first time. I have much to be grateful for. I had a pretty normal baby for the first 5+ months of life. He wasn't sick from the start and he got to feel our arms and be wrapped in our warmth from the get go.

MONDAY, SEPTEMBER 03, 2007 05:43 PM, CDT
The cardiologist has explained the CT scan results to us. They were a bit surprised to see blood on his brain. It is a small amount. It is not enough to warrant further CT scans daily. It is not believed to be an ongoing bleed. It is not believed to be causing any of Connie's current symptoms (eyes, not waking). It is not compressing the brain. It is thought to be due to all the anti-coagulants used during surgery. It is not been confirmed that this was or wasn't there on his last scan Thursday morning. The card said that when it becomes available on his computer he will hold the two up side by side to see. It is new information, but it doesn't change anything that we're doing. Nor does it explain anything that has/is happened. I asked about therapy of some sort to bring him back and they said that would be looked into when he isn't so acutely post op, meaning when he is healed a little more from surgery. They have lots of tests they can do for vision, etc. but would want to rule out any relation to medications, and so when we are further out from surgery and those meds have all been stopped we may go that route if necessary/no improvement shown. There are a lot of question marks right now. What we do know is that Connie has seemed to be uncomfortable most of the day. He is tolerating his feeds very well through his nose. They stopped (I think) the insulin or at least are staying the same. His sleepy state is not caused by the morphine as it has been over 24 hours since he's had morphine.
Shift change.

MONDAY, SEPTEMBER 03, 2007 03:00 PM, CDT
I think this is the link to some video of him from today and yesterday. Not sure if it worked.
Connie Days 5 and 6 Post DS

MONDAY, SEPTEMBER 03, 2007 02:25 PM, CDT
3:30--Connie just got back from his CT scan. Lisa, his nurse, called to say that nothing blatent stood out on it, but that it still had to be read. The unit is closed until 4 so I'm going to pump and head back down.
Only 15.5 hours until the holiday is over and maybe then we'll get some answers.
We hung some pics of him before the surgery on his crib. The nurses wanted to see what he was like before all this.
Just emailed out the pics of him from yesterday and today. . .

MONDAY, SEPTEMBER 03, 2007 01:27 PM, CDT
2:20--they just took him for his CT scan. I had to ask, "So are they doing the test today sometime?" That prompted the nurse to go ask the doctor. She said he had put the order in, but sometimes it takes time. Wouldn't you know, five minutes later, CT called to say they'd be ready at 2:30. I guess it doesn't hurt to remind people. I wouldn't think CT would be all that busy given that it's Labor Day and all.
Conway's status: His blood sugar went way down to a much more normal level. Not sure if they will discontinue insulin or what.
He had a big BM. He needed some dulcolax to help, but he finally got it. I think he has another because he seems to be trying to push. Either that or he's grunting in pain. They gave him another dose of Tylenol with Codeine at 2:00. The orders said every 6 hours. Hello, the kid was getting morphine two hours apart yesterday and today he can't even get tylenol every 4? The sub nurse (ours was at lunch) seems to be very efficient and effective. Like a leader nurse or something. She got him to okay the tylenol 1/2 hour early, especially since they want him to be comfortable for the CT scan. He still had not calmed down when I had to leave. Hopefully he'll be back before shift change at 3:00. They said they'd call.
It's getting tough now. I miss him so much. I am sick of looking at him like this. He got another new roommate and I looked at the clock and it was over 30 minutes at one point with no nurse in the room with him. I feel like since he can do nothing but lay there he's getting ignored. This probably isn't so, but it feels like it. That's one reason I hate to have to leave during changes or procedures. He's moaning and he needs his Mama there. I wish the sound of my voice was a comfort to him, but it doesn't seem to be. Nothing seems to make him feel better until the medicine kicks in. It is so hard to see these other families who had surgery the same day getting out to the regular floor. I want that to be Connie too.

MONDAY, SEPTEMBER 03, 2007 10:49 AM, CDT
Greg just called up while I'm pumping to say that he seems more peaceful just now. He is still moaning and grunting. They gave him a suppository to see if it would help in his attempt to have a bm.
We are very concerned about the possibility of brain damage and blindness. He does seem blind. Whatever the case, we will go on with God's help, but we are scared.

MONDAY, SEPTEMBER 03, 2007 09:35 AM, CDT
10:30--After rounds the docs decided to stop the morphine and treat pain with tylenol with codeine. He was in a decent amount of pain at that time. They continued rounds and our nurse, Lisa, had to urge them to quickly get the order in so she could give him a dose as he was hurting. It took about 15 minutes to help and he finally settled down. We asked for Neuro to take a look again and they did. Neuro is of the opinion that he hasn't had a stroke, since he's not showing paralysis. They were happy to hear he did nipple some feeds yesterday and was alert enough for the pacifier. Since everyone is so nervous they will do another CT scan to check for damage that may not have shown up right away after the seizure or surgery. They can not do an MRI at this time because he still has the pacer wires in. The CT is not going to change the treatment, but it could tell us if he has damage. They feel he is sensitive to morphine and dylantin, yet are okay with continuing both, at their current levels. Go figure?! They are happy that his eye reflexes are appropriate, yet concerned with the fixed eyes, even during more alert periods. They called it Cortical Blindness and feel that whatever caused the seizure is causing that too. It isn't always permanent. They reiterated the risks of major cardiac surgery as if to say that it is most likely that his brain was deprived of blood at some point during the surgery and that's why we're seeing this now. They also said they feel that his slowness to wake up could be a combination of the meds and the effects of the surgery. Bottom line: our baby may be blind, he may have brain damage, he may be fine and just slow to recover. No one knows. They said to be patient. They think he can move, he just doesn't want to. Nurse Kris from yesterday came over because she cares about him like she would her own kid and she had the idea to have the pain service evaluate him and at least if pain is not causing this "shut down" mode, we could rule that out. It feels like we are spinning our wheels. I feel myself starting to be that parent that doesn't trust what the docs are doing. Why did I just find out today that he may have a stress ulcer and they've been treating him since last Wednesday for it? I have never been the type to think I know more than the medical professionals caring for my child and I have always had almost a blind faith about it. I look at it like this: It is in God's hands and God will direct us to the right places and put the right people in our lives in order to carry out His will. I don't need to go interfering. What I am so confused about is why they feel like there may be a relation to the drugs he's getting and the amounts to his behavior and we're not really changing anything. His apnea started last night right with the dylantin dose and that's staying the same. Greg just called up to the room to say he's stopping breathing again. He moans himself to sleep and then stops breathing. Maybe he's stopping because it hurts to breathe. God, please let those chest tubes dry up so they can be removed and his pain can be somewhat alleviated. We don't know the answers and just want you to guide all those caring for him. Don't let Connie slip through the cracks. We love you and trust you. Help us wait on you. Amen.

MONDAY, SEPTEMBER 03, 2007 07:21 AM, CDT
8AM--Connie's not any more awake yet. He's up to 120cc's of breastmilk through the nose every three hours and tolerating it well.
Learned last night that he's still in complete heart block which I wasn't expecting, as I thought his surgery could be performed without interfering with the conduction tissue, but we'll try to get a better understanding of this soon as to if they feel it is permanent, whether he'll have the pacemaker implanted, wear a monitor once we get home, etc. He's not been hooked up to the pacemaker for days and his #'s are staying great so who knows.

MONDAY, SEPTEMBER 03, 2007 06:56 AM, CDT
7:57AM: Greg just headed down to see him. Kris is on again today, but not sure if she got Connie or not. I'm anxious to see if the three doses of morphine last night are wearing off yet. Last dose given at 6:30 PM Eastern time. At 2AM he was still really out of it. It's now been 13 hours so we'll see.

MONDAY, SEPTEMBER 03, 2007 01:40 AM, CDT
2AM: Insulin still up and unsure of cause. Apnea improving. Sedated state unimproved. Nurse Connie planned to only give Tylenol for pain and no more morphine, but he hasn't shown any signs of discomfort. Still totally limp. This is the most out of it he's been since anesthesia wore off. Plan is to rile him a bit trying to weigh him and mess with him some to see if he doesn't get fussy. Tomorrow's dose of Dylantin will probably be spread out over an hour rather than 20 minutes like tonight. We're hoping he has Nurse Kris again tomorrow and then Nurse Connie tomorrow night, but no one makes any promises. The other kid in his room has a nurse following her also, but she is likely to get moved out tomorrow to moderate care, so we' re hoping that Kris gets the room.
Pray that nothing neurologically is causing this failure to awaken.
P.S. Conway turns 6 months old today!

SUNDAY, SEPTEMBER 02, 2007 08:32 PM, CDT
Since about 8pm eastern time Conway has been having apnea spells. This is a period of time where he stops breathing.
Possible Causes: Reflux, pain, over-sedation, continuued seizures.
Connie is tensing up, arching his back, arms out and straight and stops breathing several times a minute. If pain is causing it and we give him more pain meds we make him sleepier. If it wasn't the pain and it was overmedication, we further overmedicate. Since his vitals, sats and gases all look perfect they want to just watch him closely for the next hour or so before getting neuro involved again. This started around the time that he was given his seizure med tonight, an increased dose from the last few days. We don't know if this is doing it. He still has good reflexes, is moving both sides and his pupils look fine.
The nurse said she was going to request that they "split the kids up" meaning that she thought his case now required his own nurse. Her request was denied. She has another girl in the same room that she has to care for as well, so we are concerned that Connie's needs may not be met as quickly as if he had his own nurse, like he's had in the past. They do have a monitor on him that will alarm if he fails to breathe for six seconds, but I'm not sure that gives me enough confidence.
Please guide the doctors and nurses to find a cause so that Connie will breathe normally. You can restore him to full health and we are calling out to you tonight. Please catch our tears and hold our hands as we hold his hand during this new setback. We put our trust in you. Amen.

SUNDAY, SEPTEMBER 02, 2007 03:46 PM, CDT
I went to see Connie after the 3:00 shift change was over at 4pm. He had a bm finally. It was quite painful for him and he needed a suppository to help. I got to change the diaper. He didn't seem to be relieved afterward so Nurse Kris gave him a little morphine. This made me cry because I don't want him hurting, but I know that the more drugs he gets, the longer it will be until he's back with us. He drifted immediately into a sleep after the meds. This was a good thing since they kicked me out to do another procedure on one of the kids in Connie's area. I'd rather him be sleeping while we're gone than by himself and fussing/hurting. They did start insulin, but this is a really hard time to tell if he needs it or how much to adjust it because there are a lot of factors. His TPN has been turned off b/c it had a lot of dextrose. They hung another bag of something and also started him on breastmilk through a tube in his nose. So, they have to check sugars often b/c they don't know what is effecting it the most or what to adjust.
Conway is moving to a different PTCU bed. He is still in intensive care but will be in one of the two bed rooms rather than his three bed room. The reason is that he is able to be "doubled up" which means that he's doing well enough for one nurse to take care of two kids. The other kids in his bay were very sick. He may not have another kid in his room just yet, but probably by Monday he will. I'm kind of bummed because I like him having one on one care, but I'm kind of relieved because if he's with another kid who is less sick than we probably will be able to spend more time with him and not be kicked out every time they require a procedure.
Kris seems to think that the chest tubes are causing quite a bit of discomfort for him and so our prayer now is that his chest will be finished draining so that the tubes can be removed. One tube is done draining and the other is not. They don't always remove them at the same time, but if they feel like they may be ready to be pulled around the same time then they do it all at once. This would get it over with all at once. I ask God to let his heart heal so that the drains can be removed and Conway can rest better and more comfortably.
Mary Kathleen and Grandma George made it back okay and Grandma Marybelle is almost home too.

SUNDAY, SEPTEMBER 02, 2007 01:37 PM, CDT
Finally got in to see him. There has been lots of activity in his area today. The one little boy who was going to be extubated is now gone and a new little girl is in her place. She has about three nurses at all times. She is on ECMO which is like bypass machine outside of body. It is very intense. Her parents look extremely young. Say some prayers for her. The other little boy, whose mother does not speak English, is going to be put on dialysis because he's not getting rid of the fluid well enough on his own. I almost feel guilty that my baby is doing so well and that we're complaining because he's sleepy. Life is tough.
Update on Connie: The plan for today is to wean down the milridone (heart med) and they stopped the lasix drip. He now gets 4 doses a day. They are weaning down the other diuretic, diuril. His catheter has been removed and he now gets to pee in his diaper!! He's eaten about 1 oz. of pedialyte through a bottle and will likely get some breastmilk through a bottle later today. Whatever he's too tired to finish will be fed through his nose. His sugars were high this morning. They were going to start insulin, but the levels went back down. Dr. said that can sometimes be the body's response to stress. I'd say he's had some stress. Neuro still thinks his sleepiness is a result of the build up of morphine (he had a ton when he wasn't peeing) and did not order any further testing. If he's still like this in a day or two they may do an EEG, CT, or MRI. They wanted his dylantin (anti-seizure) levels to be higher to prevent any further seizures and so they INCREASED his meds for this! It is likely they will make him groggy as well. They feel that the seizure was a combo of the fever AND the surgery/bypass/meds, etc. It lasted too long to safely say it was just a febrile seizure.
Just up here to pump and update. Gotta go relieve Greg now. Thanks for the continued prayers and phone messages.

SUNDAY, SEPTEMBER 02, 2007 08:51 AM, CDT
Still haven't been able to see Connie yet this AM. Other kids in his area have been having procedures done. I hope and pray nothing serious. I'm almost certain that the one little guy was scheduled to be extubated so that is a good thing, but it is still frustrating when you want to be with your baby and because of "privacy" issues you can't. They have a curtain, but I guess they don't want anyone hearing what they are saying, etc.
They did let the grandmas slip in to say goodbye before they leave town. Grandma Marybelle left this morning (driving) and Greg just left to take Mary Kathleen and Grandma George to Detroit to the airport. I don't think Mookie understands all of this. I talked to her a lot this morning about going to Grandma and Grandpa's and seeing Heidi (the dog) and she was telling me all about wanting to play in the playroom, but after I buckled her in the carseat and started to walk away, she said, "Where Mommy going?" and it took everything in me not to fall apart right there. I know she will be fine, but I selfishly want her to be here where I can still see her. Ugh. . .
I'm calling down to the desk soon to see if I'm allowed back. By the time I finally get in to see him it'll probably be time to leave to go pump again!! Sometimes I could just SCREAM!

SUNDAY, SEPTEMBER 02, 2007 06:23 AM, CDT
Caring Bridge just ate my last update:
2AM: He is stable. His weight is down almost to "dry weight". That means he's lost almost all swelling!! Might remove the lasix drip and just administer lasix perhaps every six hours.
5AM: Had one "awake" period. Marked by some movement. Back asleep now. His blood sugars are up so they are discontinuing the TPN feeds. He is slated to receive some pedialyte in a bottle as soon as he wakes enough to eat it. If he handles that he could have breastmilk in a bottle. I can't wait for him to nurse again. He wants to so badly. Whenever he hears my voice and I am right near his face he turns his head slightly and roots and smacks his tongue like he does when he's hungry.
Thank you for the continued prayers. I have confidence that God's will is being done and our little loan from God will be restored to perfect health in God's perfect timing.

SUNDAY, SEPTEMBER 02, 2007 06:21 AM, CDT
I found this while looking for understanding:
Waiting on God is the special process through which the Lord causes our eyes to turn to Him for help in time of need. By extending the duration or distress of our trial even a little bit, our weaknesses become apparent.
It is at this point our hearts become desperate, our faith is proved, and our hope is purified. The process is so common that the phrase "Wait upon the Lord" or "Waiting on God" is regularly used. We need to wait on God for a spouse, for a job, for healing, for wisdom, for ministry, etc. We might say that it is Satan tempting us, and in some cases he is, but at the same time it is God who is testing (proving) us. He is bringing us a step closer to Himself.Waiting on God is a crucial step in which our dependence upon God grows. Without this deeper awareness of God in our lives, God restrains Himself from giving us more grace. Blessing without humbling brings increased susceptibility to temptation. This is the reason growth comes with tests. Humility keeps us from pride which makes us selfishly ambitious where we would otherwise forget the Lord.Waiting for the Lord is not easy. Our heart is often crying out in agony. We feel oppressed and constrained. We yearn for freedom and provision. Waiting upon the Lord for needed supplies is one common area in which He trains us. We have to be needy so that we are forced to look to the Lord for help. Our other resources are stripped away. Someone yesterday said to me, "But I don't like what the Lord is bringing me through." How true this is. We squirm, squiggle and squeak.Waiting upon the Lord are times in which we do not have resources, answers, or direction. Instead we are often confused, poor, broken and limited. Our hope is focused on what happens after that season of humility, where we will experience a period of God's blessing. If we live by confidence in our own resources and abilities, will we not become self-confident? What glory does that bring to God?! But through this process, God enables us to depend upon Him so that we know it is only He who does wonderful things in our lives.Ultimately then, waiting upon God protects us, deepens our trust in Him, forces us to seek His ways and brings Him the most glory. They are times the Lord is testing whether we are really seeking Him and His ways. I can remember experience after experience where I have cried out to God for help and deliverance. When going through those times, I think that if I could just get out of this one pit all would be well. However, not long after the Lord delivers me from one set of problems, I find myself in another whole set of problems. And again I am seeking His help with the same kind of desperate prayer. It began to dawn on me that God has carefully planned out these 'pauses' in life in order to renew, strengthen, humble and focus us on God. This is much like the recommendation that one go around a fruit tree and cut off its roots - shocking it so that it will grow stronger and healthier roots. In this respect 'Waiting upon the Lord' is similar to pruning.

Hi everyone, this is dad. Erin just left to go spend some more time with Connie. We need your prayers as he is still not waking up. He stares into space. It's almost like he's having a lucid dream, where you know your asleep but you are aware of your surroundings and are trying to wake yourself up but can't. If he does not get any better the next step is an MRI of his brain. An MRI will can give the neurologists additional information that can't be seen in a CT Scan.
Please keep praying...

12:30pm--They are lowering the amount of lasix that Connie receives since he is peeing so well. They are also weaning down the Dopamine (the bp med) so basically he's got the anti-convulsant, potassium, lipids, vitamins and that's it. No more pain med. Less bp med and less diuretic. This is good news. They did not have to reintubate as he is coughing and clearing more junk. His blood gases are so good they are checking them like every 8 hours instead of every hour. His strider is gone, I think.
Here's the cause for concern and the area we need prayers. Connie is struggling to wake up. His eyes are half open but he is staring into space. He is moving arms and legs and head and his reflexes are good. His physical exam shows no concern. His pupils are good. We were hoping he was just extra tired because of the anti-seizure med so they ran his levels again. Neuro was planning on keeping him around a 15 therapeutically but his level is only a 6.7. This basically means that his sleepy state is not caused by too much Dylantin. Since his physical exam checks out, they want to wait before doing another head CT, but that would likely be the next step if this persists into the evening. I asked the doctor about brain damage and she said she just didn't know. It could be that the pain meds just really built up. We don't really know.
Good and Loving God,
Please breathe new life into Conway today. Flush his body of the toxic drugs he no longer needs and bring him back to us. We miss him terribly and want him to know we are there. Today has been the hardest day to look at him. It is so painful to see him look at us but not respond and to see his eyes fixed. Please give us the strength to stand by and wait for you to heal him in your perfect time. We thank you for the blessing of him breathing on his own better. We thank you for getting his heart rhythms in sync and getting him off the pacemaker. We thank you for limiting his pain. We ask now that you will wake him up.
In your son's precious name, Amen.

5 AM--Connie is doing well. No change really. Pretty cold so they added two warm blankets. Some nurses have been hesitant to even cover his feet for fear that the fever will come back. Strider is sounding better but he still has a lot of junk. He is coughing more so that's good. She said his tiredness could be meds built up or a result of the seizure. Hopefully it's just too much anti seizure medicine and they'll come down on that.
I called at 8:45 to check and they were in the middle of rounds and said to call back later.

FRIDAY, AUGUST 31, 2007 10:24 PM, CDT
11:25--Kind of frustrating night. We thought Connie's new roommate was coming before shift change so we left around 5:45 or so to get a bite and figured by 8:00 the new charge would be settled in. Poor fellow wasn't even out of surgery until closer to 8:30 so we didn't get in until after 10 to see Connie and then had to leave at 11 because of shift change. This is kind of an important time because many meds have been stopped and he's beginning to come around and I want him to know we're there--but we haven't been able to be. He's not upset, crying or anything like that. VERY groggy still. It's either a build up of the morphine in his system or it could possibly be that the Dylantin that he's on to prevent further seizures is too high of a dose and it's making him too sleepy. His eyelids are cracked open and occasionally he raises an eyebrow. He's doing lots of moving of his arms, legs and scooting himself down on the bed. His eyeballs still are kind of rolled back. It's like he wants to open them but they are too heavy. They had wanted to wean him down on the dopamine tonight but will wait since he's had such a big afternoon and has worked so hard. That will wait until tomorrow if he has a good night. That's about all we know. I'm dying for him to wake up. The nurse said that he's groggy enough that we should sleep tonight and rest up for tomorrow when he's going to need us there and know we are there. He's starting to cough a little more (this is what we want) and his gases still look really good.

FRIDAY, AUGUST 31, 2007 06:33 PM, CDT
7:00--Connie is working pretty hard on breathing, but his numbers keep improving. He's completely off morphine and adavan in hopes that he will wake up enough to cry or cough some of that out. He doesn't seem to be in any pain but is squirming around to get more comfy. They don't want him to get exhausted so they'll watch it. They may have to reintubate, but we're hoping they don't.
So, to sum up the day: No more pacemaker, no more ventilator, no more vasopressin, no more adavan, no more epi, no more morphine.
We added a couple of breathing treatments, a steriod to decrease swelling in the airway and a stuffed animal lion donated by Child Life Services.

FRIDAY, AUGUST 31, 2007 02:16 PM, CDT
3:00--Shift change starting. He was extubated around 2pm. He's being watched extra close. He had to have two breathing treatments and has been suctioned twice. His sats are great. So is his rate and pressures. His CO2 is a little concerning--it's okay, just could be better. They will repeat blood gases every 1/2 hour for awhile to make sure he stays okay and doesn't have to be reintubated. He has something called Strider, which is an inflammation in the airway. They started him on a new med to decrease that swelling so that he gets more air. He sounds terrible. Horribly rattly. He has given them two good coughs. Now that he is off the vent, they have him sitting upright. He's such a squirmy worm that he keeps sliding down the bed! Pray that his airway opens up better making him able to breathe more easily. Still not opening his eyes, but once stabilizes off the vent, I'm sure they'll let him "wake up" more. They've done a great job with pain. He hasn't been grimacing or making faces at all. He is on very little epi now and the morphine has been cut too. This kid doesn't even cry when he gets 4 or 5 vaccines in one office visit, so maybe he's just handling the pain well himself.
Good and Gracious God,
We thank you this afternoon that Connie is pulling through this steadily and recovering so well. We know you are directing all those involved in his care. We lift him to you this afternoon and ask that you continue to heal his heart, kidneys, brain and lungs. Please decrease the swelling in his airway and help him recover from being on the ventilator. We know you can do all things, great and small. Keep Connie calm as he works the fluid from his lungs. We ask these things in Jesus' precious name, Amen.

FRIDAY, AUGUST 31, 2007 10:38 AM, CDT
11:00--Conway has been taken completely off the Vasopressin. His morphine has been turned down, he's being weaned completely off the epi today. His pacemaker is completely off. He's peeing great! We are so thrilled. I just emailed some pics from yesterday and today. Yesterday he looked the worst of all. He shows marked improvement today. He's getting a new roommate this afternoon sometime so we may not get to see him as much as we'd like. We're going out to lunch today. I'm so proud of him I could burst. Dr. Bove stopped by while I was up in the room pumping and he said to my mom, "He's doing great!".

FRIDAY, AUGUST 31, 2007 07:21 AM, CDT
8:15am: Rounds are complete. Plan for today--If chest x-ray looks good and he continues to pee this well, he will be extubated later today. If he's still "a little wet" and/or his urine output slows down, they will wait and see about possibly doing it tomorrow.
They are weaning him down off the vasopressin completely today (this was started after the seizure to help get pressures up).
Greg went down to see him last night while he was kicking around so much and Nurse Holly said he sensed that Daddy was there.
He had a good night. No major events occured. I'm sure that pleased Dr. Bove a bit more this AM than when he walked in yesterday!

FRIDAY, AUGUST 31, 2007 02:58 AM, CDT
3:45AM: Connie is stable, but waking up. They don't want this yet, remember? They've given him additional morphine and versed to combat this but may have to restrain him before morning (to prevent him damaging the tubes or intubation). Otherwise, temp great, pressure fine, peeing great! We'll try to be there for rounds in the AM (unit is closed but if we're in the waiting room they'll give info) to see if extubation is still the plan for today.

THURSDAY, AUGUST 30, 2007 08:53 PM, CDT
Night shift has started and Holly is our nurse. She reminds me so much of my friend Holly back home. Same hair, same build, same teeth. It's funny. She's completely laid back too, so maybe that'll be good for Connie tonight.
Conway has had three "sprints" today (off the vent) and done well each time. They will let him rest tonight and do it again in the morning. If he continues to do well the plan is to extubate tomorrow. Then they can slowly come down on his sedatives and he can be allowed to be more awake. I can't wait! Blood gases are great.
He's back to getting help from the pacemaker. Not a big deal but I'm a little bummed.
He's started his TPN and Lipids.
He's starting to pee!! Praise the Lord!! At evening rounds they raised his dose on the lasix drip and this is doing the trick. His urine output is increasing and moving in the right direction.
If you read this before going to bed, pray that we have a "no news is good news" kind of night and that Connie can rest and prepare for work he has ahead of him.
Thank you for reading about our baby and keep the words of encouragement coming. We check the guestbook every chance we get.

THURSDAY, AUGUST 30, 2007 05:34 PM, CDT
As of 5:30PM: Connie's rate went up this afternoon on his own so he's doing the job himself that the pacemaker was doing. It is still turned on so that if his rate goes below 120 it will help him out. His rate is on the higher end, but his pressure is tolerating it just fine so they are not doing anything to change it.
We are shooting for him to be extubated (get off the ventilator) tomorrow. They would still like for him to lose some of the fluid before removing it, since the fluid will only make him work harder to breathe--and we don't want that. He did some "sprinting" today where he goes an hour without the vent and then they run blood gases to check all his levels to make sure he can tolerate being without it. He did great! They are going to try to give him some IV nutrition called TPN and lipids tonight (vitamins, minerals and fats).
Neurology came by and said that his CT scan showed no clots or damage or bleeds and that his EEG was slower, but it was in line with being sedated. No evidence of continued seizures. Just as a preventative, he's taking Dylantin (an anti-convulsant) and will likely be on it for 6 months. Since he had the fever during the seizure, we may be able to convince them to wean him sooner, but 6 months is the standard for any kid, heart problem or not.
We're tiring waiting for the kidneys to kick it up a notch so they've doubled his lasix drip to get them going. In a few days, or if his potassium is problematic, dialysis may be started. He's gained over two pounds of water! This is not good.
He's had one fever since 2AM. It came on early this afternoon but went right down with a cool rag on his forehead.
I think that's about it for now. Going back after shift change and Mary Kathleen goes to bed. Might update again before turning in.
Overall. . . pretty good day.

THURSDAY, AUGUST 30, 2007 02:26 PM, CDT
As of 2:00: Pressures are much better. Goals are now to wean down on the vent and some of the pressure meds and see how he does. He hasn't needed any sedatives since early this am b/c of all the adavan and dylantin from breaking up the seizure. They would like to believe it was caused by the spiking fevers, but can't rule out a clot or a bleed on the brain. They did a head CT and Neuro is in there now (during shift change of course!). The cardiologist looked at it earlier and said nothing stood out to her, but she wasn't trained to read them that well. Neuro will decide if he needs to be taking anti-seizure medications or if this was a one time event caused by a combination of the fevers, being on bypass, all the new meds introduced into his system, etc. It is looking like the earliest he would be off the vent is Saturday:( With no seizure last night this would have already happened and we'd be holding him by now possibly. He could be awakened and we could start talking to him more. They are just being very careful with him now. He is slated to get some TPN and lipids (nutrition) later tonight possibly. He had an EEG so his head is all messy. He will get a bath too. He looks worse today. He's gained over two pounds of water and is very puffy and tight. His eyelids look bruised. He is supposed to get a bath tonight. I just want him to smile and be able to connect with us again soon. I miss him.

THURSDAY, AUGUST 30, 2007 07:11 AM, CDT
Just got off the phone with his nurse. He is doing okay. They had to order more blood for him and he's getting that now. Because of the Adavan and Dylantin his is very sedated right now. The docs have not done rounds yet, but she suspects that they'll order a head cat scan because of the seizure. After that, we'll also have a better idea of the plan/goals for the day. Right now he's on 65% O2 on the vent. She said that his sats are 100 so they could come down some more on the vent and they plan to. Gonna get Mookie up and around and get her some breakfast then go see the babe. He's very out of in now anyway and hopefully by then the docs will have made rounds and we'll get some more info.
Give me patience to allow Connie to recover in Your perfect time. I want him off the vent today. I want him to get feeds today. I don't want to rush him into anything he's not ready for, but that competitive bone in me just wants my boy to keep clipping along. It is hard for me to accept this bump in the road. All the signs we are getting from him indicate that he's going to be okay from this. We thank you for that. We thank you that his seizure was stopped and that his pressures came back up. I pray that you continue to head him in the right direction and give me peace about the new approach/meds/interventions that have been necessary. I ask these things in Jesus' name, Amen.

THURSDAY, AUGUST 30, 2007 07:11 AM, CDT
Just got off the phone with his nurse. He is doing okay. They had to order more blood for him and he's getting that now. Because of the Adavan and Dylantin his is very sedated right now. The docs have not done rounds yet, but she suspects that they'll order a head cat scan because of the seizure. After that, we'll also have a better idea of the plan/goals for the day. Right now he's on 65% O2 on the vent. She said that his sats are 100 so they could come down some more on the vent and they plan to. Gonna get Mookie up and around and get her some breakfast then go see the babe. He's very out of in now anyway and hopefully by then the docs will have made rounds and we'll get some more info.
Give me patience to allow Connie to recover in Your perfect time. I want him off the vent today. I want him to get feeds today. I don't want to rush him into anything he's not ready for, but that competitive bone in me just wants my boy to keep clipping along. It is hard for me to accept this bump in the road. All the signs we are getting from him indicate that he's going to be okay from this. We thank you for that. We thank you that his seizure was stopped and that his pressures came back up. I pray that you continue to head him in the right direction and give me peace about the new approach/meds/interventions that have been necessary. I ask these things in Jesus' name, Amen.

THURSDAY, AUGUST 30, 2007 06:53 AM, CDT
Shift change almost over. Will get a better update shortly. Here's what happened overnight:
Conway had a seizure. It lasted about an hour. They think it was caused by extreme fever (a febrile seizure). They gave him a drug to bring him out of the seizure and that made his pressures drop significantly. Then he needed fluids pushed to try to bring up pressures. Didn't work. They gave him a couple of "epi spritzers" (epinepherin). A blood gas showed that calcium was low, and acid was increasing. They gave him 2-3 doses of calcium and this elevated the pressure, but not to where it had been prior to the seizure. The main concern was the large discrepancy between the two numbers on blood pressure. This is usually indicative of an infection, or could possibly mean a leaky aorta. They were giving him a new drug, Vasopressin, to help the vessels dilate and do their job better which might help bring up that bottom number to where it needs to be. His fever was down to 98.3 when we left his side around 5 am. His kidneys have started putting out a bit more since the lasix drip began. I wonder if the strong antibiotics are having an effect on the kidneys (keeping them quiet) or if the new lasix drip has any relation to the seizure.
Connie was put on 100% O2 (up from 30%) during the seizure and was just being dropped down some when we left. This is standard. Hopefully he can handle being lowered back down. It hasn't been ruled out that he'll come off the vent today, but it is definitely looking less likely. From the way they talked, it sounded like today might be mostly a "wait and watch if he stays stable" kind of day. We'll see what the new crew that is coming on now thinks of this approach.

THURSDAY, AUGUST 30, 2007 03:39 AM, CDT
Seizure stopped. Fever down. Pressures too low. Trying to raise them to a more stable level, but blood gases confirm that adequate O2 has been circulating to his organs. No reason to suspect neurological damage, organ or tissue damage. Probably an infection causing all this. Will write more after daylight. . .Keep praying!

THURSDAY, AUGUST 30, 2007 02:09 AM, CDT
I got up at 2:50 to pump. While I was sitting here, I got a call from the PCTU that Connie has been having a seizure for the last 40 minutes. Greg is on his way down now and I'm headed that way after the pump is done. They tell me that they think that this is a febrile seizure brought on by very high fevers and is relatively harmless (longterm neurologically-wise) but that they are having trouble stopping it. They are administering a drug now to try to do just that. I'll update more when I know more.
Please relieve Connie of his fever. Please allow his brain and heart to maintain normal function. Thank you for keeping his pressure stable up to this point. Give the doctors guidance as far as how to handle this ongoing seizure. We ask this through Christ, our Lord, Amen.

WEDNESDAY, AUGUST 29, 2007 08:53 PM, CDT
Doing pretty well. It's almost 10pm here and I just left Connie for the night. There will be a shift change in one hour. We are going to take advantage of the world's best paid babysitters and get some rest, as we've been told that once he's on the regular floor, we will be doing the normal care (diapers, feeding, etc.) on top of administering meds, etc. around the clock. So, we are taking the advice of the professionals and trying to get some rest. They reminded me that with pumping, I need to take care of myself and at this point in his recovery, while he may sense my presence, he certainly won't remember it--or the lack of it. He's getting a little bit more aware of the vent--thank goodness it's supposed to come out tomorrow--and grasping for it occasionally. This is not good. If he were to yank it out it could set him back and prolong his stay. They don't think he needs more sedation, it just may be that the morphine has made him a bit itchy so he's swiping at his face some. So, they gently restrained his arms to prevent any damage to the intubation.
Kidney update: His kidneys are still being lazy (likely purely a result of the shock from being on bypass). The cardiologist has ordered a continual lasix drip (diuretic) as opposed to the two meds he was getting every six hours. Please pray for him to start releasing some of that fluid.
His fever keeps fluctuating. It was gone right after shift change but back again an hour later. He's on two antibiotics to protect him from infection.
Thank you for today. We trust that Your plan is the best plan for our son, one of Your precious children. We are elated with the news we've received today regarding Connie's progress and thank you for these gifts. If it is your will, please allow Connie's kidneys to begin to function again effectively and free his body of his fever. Send your angels to watch over him and his nurses and doctors tonight. We ask these things in Jesus' precious name, Amen.

WEDNESDAY, AUGUST 29, 2007 05:37 PM, CDT
Just got back from PCTU. Time to pump!! By the time I'm done it'll be shift change and we're not allowed in for at least an hour and so it'll be 8:00 eastern time before we see him again.
Connie continues to progress well. His blood gases are exceptional they say. So good, in fact, that they turned down the support even further on the vent. He now is on 30% and 16 breaths per minute. He is taking 30 breaths per minute (normal) and initiating them all on his own. The vent will sense this and give him a bit of added support. It is NOT doing his breathing. He is breathing over it. This is a GREAT thing. Still on for taking him off tomorrow.
Kidneys need to function. He is not urinating so say some prayers that "Mommy's little Pee-Pot" will return to his old ways!
He has a fever. It is fluctuating from 39.5 to 38.8 ish. This is somewhere in the neighborhood of 102 (or so I'm told--my brain is way to overwhelmed to do the math myself). They started him on another antibiotic just as a precaution. We should get a preliminary report tomorrow mid-day as to whether the cultures are growing anything. It could be other things.
One of the cardiologists told us tonight that he expects Connie's heart block (the rhythm issues) to dissipate and for him to pick it up on his own again. We expect to see continued improvement over the next few days.
Our nurse, Tammy was wonderful. She doesn't work again until Sunday, but she said if he was out of the PCTU by then, she'd come find us to say hello and see the boy.
Going to eat Olive Garden. They deliver--yum!

WEDNESDAY, AUGUST 29, 2007 02:13 PM, CDT
Update while they change shifts: His kidneys need to start coming back some. Please focus your continued prayers on getting his kidneys going and on his heart rhythms getting in sync. He seems to be a little puffier than he was earlier (in my opinion). On a good note, they lowered the amount of breaths per minute that he's getting from the ventilator. This is another sign that he is on track to get off the vent tomorrow. Yay!! His sedation is ideal right now. He is pretty responsive, yet settled. Nurse Tammy said that's just where they like them. Earlier today he opened his eyes briefly and made some sounds. They quickly gave him more meds to stop that!
Uncle Terry, Aunt Barb and Uncle David have left to return home. Uncle Tim is leaving later this afternoon. Please pray that they all have safe journeys.

WEDNESDAY, AUGUST 29, 2007 10:14 AM, CDT
Connie is still being paced by the pacemaker. They tried to let him take over this morning but it still was out of sync. He is only on 35% O2 on the vent and room air is 21% so he is basically receiving very little respiratory support. That is great news. They said he is even breathing over the vent. I slipped out to pump but Grandma is with him now. He is fighting the sedation a bit, and since they are trying to wean him from the morphine, they have had to add a sedative to calm him. He just wants to wake up and move around and be with us. They don't want us giving him lots of stimulation for this reason. I said that since he mastered rolling over on Sunday night, he is trying to show off his new skills. Tomorrow he might even get to try a bottle (if the vent is out of course). He will be fed breastmilk through a tube in the nose to ensure he gets enough calories if he is not taking enough from the bottle. Right now they are emptying his tummy to make him more comfortable. With all the fluids in him and no urine to speak of coming out yet, it can make him uncomfortable so right now they have a tube through his nose to his tummy that is suctioning out the contents. It is common for infants who have been on bypass to "leak" some of the fluid and the blood into the tissues, which accounts for the swelling.

WEDNESDAY, AUGUST 29, 2007 08:43 AM, CDT
Conway spent the night still sedated from the anesthesia. He just started "waking up" this morning. By waking up, I mean that he is kicking around in discomfort and responds to voices. He still has the vent and many tubes so they will not allow him to really wake up. They told us it was the best time for us to get some rest, so from about 11pm until 7am we did just that. Extreme exhaustion was setting in for me anyway, so it worked out perfectly.
Last night he had some issues with his pressure being way too low. They called Dr. Bove twice because of this. They treat this with more fluids, which brings on the swelling because his kidneys are not really back yet. This is expected and par for the course. Not abnormal at all. Is being taken care of.
He was put back on the pacemaker last night. Before they finished the surgery, they attached pacer wires to his heart so that an external pacer could be used if needed. His heartbeat is firing in both the upper and lower chambers and is only supposed to do that in the upper. They aren't quite in sync. He tolerated it well last night, but this am, he is not in sync with the pacer. He's trying to do it on his own without any help (kinda like his Mama). Don't know what this means, but it is not a big deal at this point, I don't think.
Great news from this morning: He may be off the vent as early as tomorrow!!!! We were told that if we were lucky he may be off Friday or Saturday. So to be possibly coming off Thursday is HUGE, I think. We were also told that you can kind of gauge his recovery by how soon he is able to come off the ventilator. If this is the case, then we've got a fighter on our hands! Sounds to me like he could be "wonder boy"! Honestly, I would expect nothing less from him, but am trying to just take things as they come and not get hopes up too high.
His uncles and aunts and grandmas have taken turns with him this morning while I spent some time with Mary Kathleen. Greg and I will go down in a bit to see our boy.
If you'd like some pictures emailed to you, email me with your address and I'll forward them to you. It is very time consuming to post pics to this site (resizing)and you can only post 12 pics max. I've been emailing a link to snapfish, but I don't have everyone's address. So, you can email ekbeckemeier@yahoo.com if you'd like to start getting them. We'll take some more today when we go down. I'll post again after visiting (probably around lunch time or later).
Thank you for all your prayers and messages. It has been really good/sustaining for me to read the messages. Keep them coming!
I just want to reiterate that a even though Connie will now always be a "heart kid" and we've had an unexpected bump (future surgeries), we are so grateful to God for leading us to U of M and to Dr. Bove. We shudder to think what the outcome could have been had we been somewhere else and they had seen what the experienced hands and eyes of Dr. Bove had seen when he actually got in there. It is a miracle that God was able to work through this surgeon to get Connie's heart to the point where it is today.

TUESDAY, AUGUST 28, 2007 05:48 PM, CDT
We saw Conway in the PTCU (pediatric cardio thoracic unit) around 4:15. The cardiology fellow reported that Conway is having a little trouble with rhythm issues now, but is not currently being paced. He seems to be tolerating the problem without it. He is being given lots of fluids to elevate his blood pressure. He looks great. As soon as we can, we'll email some more pictures. There are three babies in his area. Would you believe that there is a big Curious George on his window? Mommy's maiden name is George and when she taught that was the "theme" in her classroom. God keeps giving us things that make us smile!
Whenever they do a procedure on one of those three babies (both of the others are smaller than Connie) they make all the parents leave the room. In this case for about an hour or so. Then we call to see if we can come back in. From now on, the updates will come when we are "kicked out" as there is no wireless on the 5th floor.

TUESDAY, AUGUST 28, 2007 01:52 PM, CDT
Okay--big report. Take a deep breath. At 2:00 we were told that Connie was off the bypass and completely finished. He did great and we were to wait for Dr. Bove to talk with us. We just finished talking to him and got some news we're not crazy about, but we are incredibly relieved and feel so blessed that we were in the right place for this surgery.
I may have some of the details confused and may be incorrect on a few things because after hearing that my sweet angel will have to endure future open heart surgery/ies, my mind kind of went blank. Here's the nutshell (I think):
Conway is very stable. They are a little disappointed in the pressures on the right side. The right side used to be the side pumping to the body (think strong side) and now is only pumping to the lungs and it is currently still pumping too hard for the job it has now. Conway was an incredibly complicated case. And that is a quote from the world's best pediatric heart surgeon. The man looked incredibly exhausted mentally after what he performed. He spent most of the time working on the left side as this is the most important side and his rhythms are great (no need for a pacemaker, which was a possiblilty). His valves were incredibly complex, even intertwined. To separate them was diffult, but he was able to. He didn't have enough tissue to reconnect everything after removing the blockage (there is NO blockage on either artery!!) and that's where the gortex graft came in. The graft will have to be replaced at some point--when is unknown. It could be in six months, it could be in three years. We may be able to do a catheritization and balloon that graft in order to buy some time. He will not show any outward signs or have issues. He will not turn blue or faint while crawling across the floor. The echos and x-rays that are done at follow up cardiology appointments will dictate when this repair/replacement is necessary. The mitral valve was very leaky before the surgery and is completely repaired. He is having some leaking from the tricuspid valve, but it looks okay for now. He may need a human valve replacement in the future. His coronary arteries (the ones they never could see well on the echos) were very problematic to deal with. He said one of the coronaries was a good inch to two inches away from where it should be located. If he had tried to stretch it all to fit without using the gortex, it would have compressed the coronaries too much (bad thing). He said that he had to make the call and weigh the risks of continuing with trying to repair the right side. He would have had to undo much of what was already fixed and the big issue would be that Connie would have had to stay on the heart lung machine another 4.5-5 hours (he was already on it 4.5-5 hours he said). This is risky because you start having other complications. He mentioned the increased risk to the kidneys if he had opted to keep going. He said that he felt that the wisest thing to do was to get the left side perfect and do the best he could with the right side in a safe amount of time and then go back in at a later time to repair the right side. Repairing the right side is a far less difficult procedure. It is open heart surgery and he would be on the bypass, but it is not nearly as complicated as the double switch.
We're are now trying to digest all of this as we wait to go in to see our baby. We expect him to be sedated for a few days (at least until he is off the venilator--maybe until Friday or Saturday).

TUESDAY, AUGUST 28, 2007 01:20 PM, CDT
Our 1:00ish update: Surgery is over!! We are not out of the woods yet, though. Conway is still on the heart-lung bypass machine. They said it is a slow process to wean him off. We will have another update in an hour.

TUESDAY, AUGUST 28, 2007 11:25 AM, CDT
Third update. Hi this is daddy and my writing skills are not as good as Erin's so pleeza forgiva. Dr. Bove is done with the left side of the heart and is now working on the right side. They will be using some Gortex (yes like the raincoat material) to shape the right side. We asked 'Does the usage of Gortex mean Conway will need future surgeries to replace the material?' Our liaison said 'no.'So, everything is still going very well. The only new news is that Conway's heart will be wearing a raincoat from here on out!

TUESDAY, AUGUST 28, 2007 10:49 AM, CDT
Second update: Dr. Bove has disconnected the arteries in order to switch them. He's working on the coronary arteries now. Connie's still on bypass. This is kind of the tedious, slow, IMPORTANT part of the surgery.
We should find out more after 12:00 or so. Mary Kathleen is having a little lunch and Grandma and Aunt Barb are taking her back to the room for a nap. We keep going from the 5th floor waiting to the 8th floor. There's more room for the whole crew on the 8th. The 5th is where they come to look for us for the updates. This place is massive. Even Big Barnes in St. Louis is far less confusing than here!

TUESDAY, AUGUST 28, 2007 10:17 AM, CDT
First update: All is going well. Connie was put on bypass around 9:30 am or so. The hole is now closed and it has been decided that they are going ahead with the double switch procedure. There was still a question as to whether or not he was a candidate because of his subpulmonic stenosis (blockage under the pulmonary artery that if switched, would be blocking the aorta). They could never get a good look at this area via echo so they wouldn't know until they got in there. This tissue was purely excessive tissue and has been removed. We met Dr. Bove about 8:30 or so and he gave us a few options and we just kept praying for the double switch option. Anything short of the double switch would have required additional future surgeries. Praise God!! Praise God! Our prayers are being answered. We will get another update by 11:15 eastern time. Keep praying. It is expected that he'll be on the heart-lung bypass machine for about three hours. Pray that he is able to come off the machine well and that his body and his heart are able to handle the repair.

TUESDAY, AUGUST 28, 2007 02:48 AM, CDT
Connie just finished his last feed before surgery a few minutes ago. He probably will be fed through a tube in the nose for about a week or so before he's able to get a bottle of milk or nurse again:( It was a "dream feed"--he never even woke up.
I held him an extra long time afterward, but those who know him, know that he's generally a baby that prefers to lay flat and have room to stretch out, so I unselfishly put him back in his port-a-crib. My alarm is set for a little less than an hour from now, but I don't think I'll be sleeping any between now and then.
This is my prayer. Please pray today. God is listening. Please talk to him.
Dear God,
Please take this from me. This is so much bigger than anything I've known before. I put my faith in you. I trust that your will will be done. Your plan is the perfect plan. Although I may not understand or agree, it is PERFECT. I ask for the knowledge of your will and for you to give me strength to accept that will. Please guide all who will care for my smiling boy. Give them the knowledge and skill to carry out your will. I trust that through this suffering you'll bring about a new good. Please comfort Connie during and after his surgery. Surround him with your angels and wrap him in Jesus' loving, healing arms. Please limit his pain. Help the nurses and doctors to recognize and manage his pain effectively. Please calm our hearts and minds while Connie is in the care of this team. Lord, when we see Connie for the first time after surgery, help us to look past the wires and tubes and just see our perfect, happy baby. During Connie's sedation in the coming days, help him to find peace and comfort in our touch and in our voices. He has brought so much joy my life. He has changed me forever. He has amazed everyone he has come in contact with. I think that he has the ability to someday bring others to you, if that is your will. Take this from me, Lord. It is too much for me. Please let me feel you by my side today. Please. Thank you for all the loving support and for your angels on earth that have accompanied us to Michigan and those whose kind words and prayers have come from miles away. I trust that you hear their call to you. I love you and thank you for all the blessings in my life. Forgive me for failing to see them so many times. Forgive me for failing to trust in you and for trying to do it myself. In Jesus' precious name I pray, Amen.

MONDAY, AUGUST 27, 2007 06:37 PM, CDT
Today was pre-op testing day! It was a long day. We started at 9am and finished up about 5pm. First a cardiology fellow looked at Connie and did all his vitals, etc. Then we went up for a chest x-ray. What an experience. Here at U of M they have a contraption where they put the baby on a bicycle seat and velcro his arms, legs and head to the wall. After that we went back down and waited. Then he got sedated for the echo. He didn't care for the taste so he spit out two doses. Apparently enough got in him that he got tired and slept. They started his echo and then reviewed it. They needed a better look at his coronary arteries so they brought in another machine to do that. A pediatric cardiologist came in to take the look but still had trouble. She said that tomorrow before they start they can look through the scope to get a better view. He woke up before his ekg and screamed because it was now 1pm and he hadn't eaten since 7 am (he usually eats every three hours)! After that, we waited for the anesthesia consult. They must not have gotten the page because no one came. We left there and went for the worst part of the day--the blood draw. They tried and tried and couldn't get the THREE vials out of the first arm. The tube clotted before one vial was even full! So, that meant his other arm had to get poked. Poor baby! He doesn't cry for vaccines but this was a different story. It took three of us to do it. Then we went back and waited for anesthesia again. No offense to our loved ones in that field, but they operate on a different time schedule than the rest of the world. The nurse anesthetist came and told us what time he could have his last feed, meds, etc. Then we were free to go!! We went out to the courtyard--the weather is phenomenal--and laid in the soft grass before getting some dinner. He was such a good boy all day. He slept in his carseat when he could and didn't fuss, except for the needle part and the "I'm hungry" part.
Surgery starts at 7:15 Eastern time (6:15 St. Louis time) and should last until mid afternoon--yes, it's a long one. We'll try to update throughout the day as the nurses update us. Thank you for your continued prayers.

MONDAY, AUGUST 27, 2007 06:37 PM, CDT
Today was pre-op testing day! It was a long day. We started at 9am and finished up about 5pm. First a cardiology fellow looked at Connie and did all his vitals, etc. Then we went up for a chest x-ray. What an experience. Here at U of M they have a contraption where they put the baby on a bicycle seat and velcro his arms, legs and head to the wall. After that we went back down and waited. Then he got sedated for the echo. He didn't care for the taste so he spit out two doses. Apparently enough got in him that he got tired and slept. They started his echo and then reviewed it. They needed a better look at his coronary arteries so they brought in another machine to do that. A pediatric cardiologist came in to take the look but still had trouble. She said that tomorrow before they start they can look through the scope to get a better view. He woke up before his ekg and screamed because it was now 1pm and he hadn't eaten since 7 am (he usually eats every three hours)! After that, we waited for the anesthesia consult. They must not have gotten the page because no one came. We left there and went for the worst part of the day--the blood draw. They tried and tried and couldn't get the THREE vials out of the first arm. The tube clotted before one vial was even full! So, that meant his other arm had to get poked. Poor baby! He doesn't cry for vaccines but this was a different story. It took three of us to do it. Then we went back and waited for anesthesia again. No offense to our loved ones in that field, but they operate on a different time schedule than the rest of the world. The nurse anesthetist came and told us what time he could have his last feed, meds, etc. Then we were free to go!! We went out to the courtyard--the weather is phenomenal--and laid in the soft grass before getting some dinner. He was such a good boy all day. He slept in his carseat when he could and didn't fuss, except for the needle part and the "I'm hungry" part.
Surgery starts at 7:15 Eastern time (6:15 St. Louis time) and should last until mid afternoon--yes, it's a long one. We'll try to update throughout the day as the nurses update us. Thank you for your continued prayers.

SUNDAY, AUGUST 26, 2007 04:52 PM, CDT
Today we did a little looking around. Lucky for Mary Kathleen, there is a playground on the roof of the hospital! She spent a lot of time going down the slides and steering the "boat". We'll email a link to the pics on snapfish soon.
How do you like the new "Fish" theme? I thought a change would be nice.
Uncle Terry and Grandma ran into a woman in the lounge whose granddaughter has been here two months recovering from a car accident. When they were telling her why we were here, she asked the name of the surgeon and they couldn't think of it. They just said he's supposed to be the best. She said, "Oh, you must be talking about Dr. Bove. He is the best." That made me feel good, especially coming from someone who isn't even here for cardiac care.
Fr. Joe--If you are reading this, thanks for calling and praying with us. I save your messages and listen to them over and over again when I'm overwhelmed. It reminds me that I'm NEVER alone.
To Carol and Kathy--thanks for the calls. It's nice to hear from you. Please know that even if we can't talk right then, it is a comfort to have calls and messages to listen to.

SUNDAY, AUGUST 26, 2007 01:08 PM, CDT
WE'RE HERE!! Daddy got to Detroit Airport about 20 minutes before our plane touched down. Talk about perfect timing. Since our flight was only 1/2 full, we were able to bring Connie's car seat carrier on board and he took a nice long nap for most of the flight. Mary Kathleen left "Pink Bunny" (one of her four security blankets!) either in the van or at home. We called Grandpa to let him know to be on the lookout for it. Just before the plane took off, an airport worker came onto the plane and announced that they had something for Erin. I stood up to see her holding "Pink Bunny". Grandpa saved the day! He went all the way to our house, found "Pink Bunny" and raced back to the airport so his sweetheart would have her lovey. He had to get through security with no ID, etc., etc. He almost ran out of gas on the way home. She had been rather quiet and even lamented a few times out loud about not having "Pink Bunny". After she got him, she was back to her cheerful self. The ride was smooth and we were greeted with beautiful, 70 degree weather in Detroit. The drive to Ann Arbor was short and we checked in to the Med Inn, Room 509 (home base for the next two weeks). Daddy went to find us some lunch (Einstein Bros.--they closed the Wendy's) and the rest of the gang went to check into their hotel (I think it is two miles away). We're staying put today and trying to keep Connie out of public places as much as possible. I think Mookie is going to take a nap and maybe he will too. It's going to be hard for him to fall asleep with us in the same room. Oh well. It's not permanent! Maybe after naptime we'll take a nice stroll around the campus. The weather is beautiful! Thank you for your continued prayers. We'll keep you posted. Our next scheduled event is tomorrow. Connie has to report at 9am for outpatient testing (probably won't be back to the hotel room until about 4).

SATURDAY, AUGUST 25, 2007 02:59 PM, CDT
Well, the trip has officially begun. All the packing is complete-minus the diaper bags and blow dryer-and the van loaded. Daddy took off for Chicago at lunch time today where he will spend the night with his brother, Dave, and his family. He will leave early tomorrow morning to make the other half of the trip to Detroit. Grandpa George is driving Grandma, Uncle Terry, Mommy and the kids to the airport tomorrow morning where we will meet up with Great Aunt Barb and fly together to MI. Daddy will pick us all up from the airport and we're scheduled to arrive in Ann Arbor sometime in the early afternoon. Please pray that we all get there safely (and that no one on board the plane has a communicable disease!).

FRIDAY, AUGUST 24, 2007 06:06 PM, CDT
Looks like Aunt Jacki came to the rescue:) She had everyone she knows looking for a surgical mask for Connie and they found an adjustable, child sized mask. Yay! Now he'll be protected in the airport and on the plane. Thank you, Aunt Jacki.

THURSDAY, AUGUST 23, 2007 03:12 PM, CDT
Back from the cardiologist. Connie is cleared for surgery on Tuesday. He now weighs 17 lbs. 0.4 oz. Dr. thinks we will see him really put on weight after he is switched. God knew we were trying to keep him away from germs so he made sure no one else needed to ride the elevator when we did. There were no other kids in the waiting room at the office and we were rushed right into registration/x-ray without having to wait. Connie rode in his stroller/carseat with both canopies completely covering him. I'm sure most people thought I was an overprotective mom, but I don't even care! A few curious people asked, "Is there a baby in there?" I felt like answering, "No, it's a snake." I didn't. Instead, I politely explained that he's having heart surgery next week and we're trying to keep him from getting sick.
His heart is enlarged and there is an increase in bloodflow to the lungs, but this was expected. Good thing we're getting this over with now. His pulse ox was 97:( Last time it was 100. This could be why he's back to eating every three hours, even at night (yes, I'm pretty tired). Now we are on the hunt to find a child or infant sized sugical mask for him to wear on the plane and throughout the airport. The doctor's office is looking too. If you know where we can find one before Saturday, give us a shout. Oh, and I got to learn a little bit more about murmurs. His is a Level 4, in case you are in the medical community and know what that means.

TUESDAY, AUGUST 21, 2007 02:26 PM, CDT
Dr. Bromberg's office called this morning--he's our cardiologist--to say that he spoke with Dr. Bove and that Dr. Bove said that unless Conway had a fever and was having respiratory difficulty on the morning of surgery, we would be going forward as planned. We are still going in Thursday to get checked out just to be sure, but it looks like if we can keep him well from here on out that we're still set for the big day being next Tuesday, 8/28.
Just wanted to add a public thank you to everyone who has been signing the guestbook or sending notes and prayers to the house. It really means a lot to us and helps us keep our spirits up and reminds us that this is all in God's hands. We have had so many blessings thus far and God's grace will allow for many more to come.

MONDAY, AUGUST 20, 2007 07:52 PM, CDT
God Bless our cardiologist!! I called his office to let them know about our situation and he had his nurse call right back to say that he was emailing Dr. Bove (the surgeon) and telling them not to reschedule anything until AFTER he checks him out himself. He is making space in his schedule to see Conway this Thursday and will also order a chest x-ray to ensure that he is healthy enough for this operation. His nurse said that if he's not ready for it, Dr. Bromberg would be the first to say so, but if he checks out okay, then he'll clear him and that Dr. Bove would accept that. It really pays off to have a cardiologist who has a history with the out-of-town surgeon! We'll update after the appt. on Thursday as to whether or not he can go. Keep praying that God's will be done.
In the meantime, Connie hasn't and won't leave the house. And when we go Thursday to St. John's he'll be wearing some sort of mask (if I can keep one on him). No one else is really going anywhere either, as we don't want to bring any germs home. I've got some sort of sinus infection/possible cold, so I'm even wearing a mask every time I go near him or hold him. I can't imagine another six weeks of this! I know lots of families don't send older children to school or daycare for weeks leading up to a child's heart surgery. The daycare thing isn't an issue with Mary Kathleen, but Celeste goes to camp and is around other kids every day and will be starting first grade at the end of the month. That could be interesting. . .

MONDAY, AUGUST 20, 2007 02:45 PM, CDT
Just heard from the cardiology dept at U of M about what to expect on the day of pre-op testing. They were asking about Conway and how he's eating, etc. and we discussed his recent cold. After giving all the details of his symptoms, trip to the pediatrician, medicine, etc. I was told that it is highly possible that his surgery will be postponed for 6 weeks. They don't want to risk doing such a major operation if his respiratory system is not 100%. Now we wait. We wait for them to call us back. She said it will probably NOT be today. She has to email the surgeon, talk to anesthesia and talk to the cardiology fellow and attending. (Sigh. . .)

SATURDAY, AUGUST 18, 2007 07:20 PM, CDT
Connie's cough has improved a lot.
He went today for his 6 month portraits at JC Penny. It's a couple of weeks early, but since we'll be out of town. . . We went ahead and had family pictures taken as well as pictures of the three kids together. They will be ready for pick up on Aug 30th, so we'll have Grandpa George get them since we'll be in MI. They turned out great. It is sooo hard to wait for them!
The girls are reading stories with Daddy and Connie is already sleeping!
The photos are updated. Enjoy!

WEDNESDAY, AUGUST 15, 2007 04:09 PM, CDT
Conway is starting a round of Zithromax today. It's a five day course of antibiotics. He's still his happy self, but his cough is persisting. Our pediatrician said that with most cases, he'd keep waiting it out, but in this instance, he wants to be on the safe side and go ahead and treat with antibiotics now rather than getting super close to the surgery date and discovering that it was a treatable infection.
He's had a couple of nights of wanting to stay up late and sleep in late. I joke that he thinks he's a college kid about ready to start school again; trying to savor every last bit of summer with this sleep schedule! Hopefully tonight he'll get back on track. He's really noticing other kids lately. He loves to watch Mary Kathleen and he's content as long as he can see her and follow her busy self with his eyes. When he sees Celeste he really lights up. I love that he recognizes family now. When Grandma and Grandpa George were out of town we put the speaker phone on and let him listen to them talk. He smiles and coos and kicks like crazy when he hears familiar voices.

SATURDAY, AUGUST 11, 2007 10:09 PM, CDT
Conway went to the pediatrician today because he has had sneezing, drainage a rattly chest and a hoarse voice since about last Tuesday. It got progressively worse and so I took him in this morning to make sure it isn't turning into pneumonia or something. He's more susceptible to that because of his heart and lungs. Everything checked out and it seems to be a typical upper respiratory infection. If he's not improving by Tuesday, we'll start a round of Zithromax. Otherwise, we'll just let it run it's course. Hopefully he'll be immune to catching anything else before his surgery. We don't want to have to postpone it! It would probably be months before our surgeon would be available again.
At the doctor today, he weighed 16 lbs. 6 oz. That's a loss of 2 oz., but I'm chalking that up to the fact that it was a different office and different scale than the one he was weighed on last Monday.
Mary Kathleen also has a cold. But this time, she got it from him!

MONDAY, AUGUST 06, 2007 02:18 PM, CDT
Conway saw the cardiologist today. He is doing VERY well. Connie is in the 60th percentile for weight at a robust 16 lbs. 8 oz. His length is almost 28 inches, putting him off the charts! His blood pressure was normal along with a perfect score of 100 on his sats (pulse ox monitor). We got well wishes from everyone in the office for a positive surgical outcome and speedy recovery.
I shared some of my concerns and fears about the surgery and asked the doctor a few questions. He made me feel so much better by telling me that Connie will likely have his chest closed immediately after the surgery. We'll follow up with appointments two weeks after we get home and six weeks after the surgery and then be cleared for 6-12 months!! I thought we'd be going back every month for at least a year! He assured me that they will manage Connie's pain adequately and he'll be fussy for a couple of weeks, but by 3-4 weeks after surgery he should be back to himself.
We didn't have to get an echo or x-ray done today as Dr. Bromberg said it wouldn't change anything. He mainly just wanted to "eyeball" him to make sure he's still our healthy boy that if you hadn't been told, you'd never know he had a heart condition. Our follow up appts. will be quite lengthy, probably about two hours or so. Mary Kathleen was such a good girl during the appointment. She played quietly with the toys in the room and followed all of my directions:) She got a purple sucker to match her dress when we left!
After our appointment, we went down to the NICU to visit Connie's very first NICU nurse, Krista. She was so happy to see him. He was sleepy so he didn't put on a show for her, but he did give her a grin or two and was cooperative enough for us to get a good pic of the two of them. All the girls raved over his handsome eyebrows and how big and strong he looks. They told us to be sure and update them while we're out of town.
We're going to work a little more on giving bottles to get him more used to them because the doctor said that the nurses would allow him to drink from a bottle sooner than nursing.
The doctor also said that now is the time to kind of quarantine Connie because we don't want an illness to postpone the surgery! We probably will avoid most places where there are many people until we get home and get the okay:(
Have a great week!

SATURDAY, AUGUST 04, 2007 12:58 AM, CDT
Connie turned 5 months old today! Can you believe it? Sometimes it seems like it was just yesterday that he was born and yet at the same time it feels as though there has never been a time when he wasn't in our life. While he turned 5 months today, his big cousin Anna turned 5 years.
Connie has some cousins from Texas in town this week and his Aunt Michelle has finally gotten to hold him bunches and bunches. Tomorrow we are celebrating Anna's birthday and spending time visiting with all the Brays.
I just wanted to post a quick update to let everyone know that the boy I posted about awhile back with the brain injury that needed prayers is making progress. He is moving his arms and fingers and his head on command. His pupils are also starting to react somewhat. To read his carepage makes me so joyful to see God's miracles happening. You can almost "hear" the joy and hope in his parents' posts.
Have a good weekend and stay cool!

WEDNESDAY, AUGUST 01, 2007 02:50 PM, CDT
Just thought I'd post some new information that I've been given regarding "how it works" once we're at U of M. A family that we "met" online on our L-TGA site has been gracious enough to answer any and all questions we have about the surgery. Their daughter went through the double switch with Dr. Bove last October when she was 4 mos. old. This may be too many details for some of you. I hope you understand that writing about it helps us to deal (especially Erin). This thing just seems to get bigger every day.
Turns out we won't be able to "spend the night" in Conway's room while he's in the cardio thoracic intensive care unit. Rooms are not private and while you can visit anytime, the staff kicks you out frequently during shift changes, new patient arrivals and when ever another patient is coding (going into arrest). What these parents did was take shifts themselves. One parent would stay in the room for 8 hours, then the other parent for 8 hours, then 8 hours together. They did this for the 10 days their daughter was in intensive care. They said the average is about 7 days in the intensive care. Some get out after only three, some longer. Their daughter's chest remained open for 5 days following surgery to allow for swelling. They were not able to hold her for one week. Conway will be on IV feeds and then TPN feeds for the first week or so. This concerns me because of breastfeeding. I guess I'll be VERY familiar with my good ol' pump by the time this is over! He will have 10-12 lines in him including ventilator, chest drain tubes, IV's, and every kind of blood pressure and ventricle pressure monitor imaginable. He will be sedated for probably 3-4 days or at least until the chest tube and ventilator come off. He will be very swollen and may not be able to open his eyes when awake.
They also told us practical things that are nice to know, like the "secret" passage between the hotel and the intensive care unit that makes the walk much shorter, where to get food, whether or not to rent the fridge in the hotel, etc. It's nice to have a "mentor" family to help us prepare a little better for this miserable experience.
They said you'd never guess after meeting Dr. Bove that he'd be the world's premier pediatric heart surgeon. He's about 6'6" and has gigantic hands!
They said that the pre-op testing day is pretty tiring; to plan to be there a full 8 hours or so. It's just so much information. They shared pictures of their daughter in the hours and days following surgery in order to prepare us for what we'll be seeing. In one photo, I counted 18 machines keeping their daughter alive and monitoring her heart. I would expect with Conway having the same procedure, we'll be seeing that many as well. Her dad told me that by the time you leave there you know what all the numbers mean and what type of operation a roomate had just based on what machines they are hooked up to. He did say that the nurses are the best. Literally. They have to be. They are responsible for the patient's care and report directly to the surgeon. Dr. Bove will call every night before he goes to sleep and talk to us and the nurses. If there is something he's not happy with they hear about it:)
Connie and Mary Kathleen went to lunch with me today to see my teacher friends one last time before the school year starts and they all get so busy. They were both so good (as usual!). Mary Kathleen made everyone laugh and Conway laughed at everyone and everything! I am so blessed to have such happy kids.

THURSDAY, JULY 26, 2007 11:00 PM, CDT
This time next month we will be settling into life in Ann Arbor, MI, awaiting Conway's testing, surgery and recovery. A friend recently lent us some of her son's outgrown clothes and in the bag was a "Michigan" sweatshirt. Of course that set my wheels in motion and brought the reality of the situation back to the present.
This week has really been great. Greg and I have been able to take some time for ourselves, taking turns doing things we enjoy, while the other of us watches the kids in the evenings. A special treat was Wednesday night, when we were invited to a Cubs/Cards game. Grandma and Grandpa George stayed with the kiddos so we could get out together before our big trip when we'll probably have very little time, nor want to be "off duty".
Conway is doing well. He is so happy and cheerful. One can't help but smile just looking at him. When you look at him, he acts as if he's a little kid who's just been told that he's been awarded an extra recess. He goes completely wild with his arms and legs and squirms all over and grins from ear to ear. His eyes truly light up! He's moved out of that newborn stage totally, as evidenced by the fact that he won't sleep just anywhere anymore. He is so alert and curious about his surroundings and he doesn't want to miss a thing. Mary Kathleen played in the play area at the mall today and he watched all the children intently. He is so content to just be there. He doesn't have to be the center of attention. When we are eating or cooking or doing something at home, he is happy as long as he can see us and watch what we do. He doesn't like to be where he can't watch. He's my little observer. He's become quite attached to "Blue Bunny Elephant" as Mary Kathleen calls it. It is the blue elephant lovie blanket square similar to her Blue Bunny and Pink Bunny. She also has a white lamb and a pink bunny with a different tag. When Connie's elephant was in the wash a few days ago she agreed to let him borrow one of hers until his was clean. What a nice big sister! He likes to cuddle it when he is trying to fall asleep and it is a nice distraction for his busy hands. It helps to keep them from knocking the pacifier out of his mouth!
Our next cardiology appt is Monday, August 6th. I'll be sure to update the site after we get back home from the appt.
Thanks again for your continued prayers and well wishes for Conway and for us. They are greatly appreciated.
Erin and Greg

SUNDAY, JULY 22, 2007 01:46 PM, CDT
Conway and family are doing well. We've really been enjoying the cooler than normal temps outside. I realized that Conway really hasn't been out much since the weather got hot and the last time he spent much time outdoors he was too young to notice anything. He went out with us yesterday to eat hamburgers on the deck with Grandma and Grandpa George. He sat in his Bumbo Seat (blue chair that helps him to sit up) and his eyes were so busy looking at his surroundings. He likes the backyard and likes to watch our dog, Belle, run up and down the fence barking at the other dogs and bunnies and birds. He loves looking around and holding on to things. He's very close to transferring objects from one hand to the other. He's been enjoying his exersaucer (like a walker that doesn't move) a lot more lately as well. Even though kids don't watch TV in our house, it is usually on. I like the background noise and like to watch the local news and Cardinal ball games. He is absolutely mesmerized by the TV when the Cardinals are on. He knows the difference between the ballgames and other tv shows and will actually focus on the game. He's Mommy's little fan already. I can't wait to take him to the games and talk to him about pitch selection and strategy. His new baby cousin, Liam, is going to be a baseball fan too, if his daddy has anything to say about it! They'll be trading cards with one another before we know it. I'm going to try to update the photos page again, but I had trouble last time. Hopefully it works this time.

THURSDAY, JULY 19, 2007 10:35 AM, CDT
Update on Mary Kathleen's Dermatology Conference:
She was seen by a slew of doctors who came to the consensus that we should leave it alone at this time. I am to take a look every month to see if it changes in any way. If so, I will take her in. Otherwise, we'll follow up in a year with the dermatologist. They said that there is a 1-5% risk that it will turn into a melanoma and that usually the melanoma develops in childhood. They felt like the risk of putting her through general anesthesia and surgery to remove it would be greater than the risk of melanoma developing.
Whew! What a relief. Thanks to everyone who was praying for her. God heard each and every one!

TUESDAY, JULY 17, 2007 12:56 PM, CDT
Knock on wood--Connie has gone three nights in a row without waking until 6:30 am! He eats and then goes back to bed for about two to three more hours! Unfortunately, his sister also gets up at 6:30, but doesn't go back to sleep:( Of course, now that he's sleeping, she's getting up. She woke several (at least four--it's pretty much all a blur) times times last night including twice with diarrhea--yuk! Poor baby has a such a sore bottom.

MONDAY, JULY 16, 2007 12:33 AM, CDT
Forgot to update that last Thursday, Connie was weighed and measured and is still doing GREAT! He was 15 lbs. 11 oz and 27 inches long. I looked back through the records and Mary Kathleen was only 26 inches when she was 6 months old!
On a side note, please say a little prayer for Mary Kathleen this upcoming Thursday, July 19th as I am taking her down to Barnes (STL) Hospital because her dermatologist wants to have other specialists take a look at her birthmark to gather their opinions in order to determine the next step. They call it a conference and she'll be in an exam room and several specialists will take a look, take pictures, perhaps cut some hair to see it better (it's on the back of her head about an inch above her hairline on her neck). It is called a congenital nevus and the concern is that 1) it could be connected to the tissues, bone or organs on the inside and 2) it could develop into a melanoma. So, we are having her looked at closely. Hopefully they won't have to biopsy anything just yet. She talked like the next step may be an MRI or scan and follow ups with a pediatric dermatologist. We shall see, but in the mean time, please pray that all is well and it's "just a birthmark".
Thank you to everyone who reads this and keeps up with our journey! It's heartwarming to know so many people care and that we are not alone in this thing we call life!
Erin and Greg

SUNDAY, JULY 08, 2007 01:57 PM, CDT
Okay, sorry about not updating the pics. For some reason, I'm having trouble, so I'll just post the link to them online at Snapfish. It is: http://www1.snapfish.com/thumbnailshare/AlbumID=161614933/a=97017826_97017826/t_=97017826
Hopefully that works.
In other news, Conway has taken two bottles this week! He drank 2.5 oz on July 3rd with Grandma while we were at the carnival and on July 6th, he drank almost 5 oz. in less than 10 minutes with Grandma. Perhaps he's over the whole, "I don't want my milk from a bottle" thing. Makes Mommy happy because now it means I can actually go places without him! When Mary Kathleen was his age, I went to Sedona, AZ for 6 days without her. Don't have any trips like that planned, but it'll be nice to not have to plan little trips out to the store around his feeding time when Greg's home.
Conway went Thursday evening to visit his brand new baby cousin, Liam. We are so excited for the Russo's as they welcome their new little bundle. At 15 lbs, Connie is now more than twice as big as the little guy, but in no time at all they'll be toddling around together and be the best of friends!
We want to wish Happy Birthday to some more cousins. Ainsley Bray is 3 today and Keegan Bray will be 9 tomorrow! We also want to wish Grandma and Grandpa George a Happy 30th Wedding Anniversary tomorrow! Next week we'll have more birthdays with the Beckemeier Twins, Bobby and Mimi who will be four, and Big Sister Celeste, who will be six.

WEDNESDAY, JULY 04, 2007 01:44 PM, CDT
We made it to the parade for awhile today. Connie and mom hung back at the house until just before it started while Daddy and the girls went up to save us a seat in the FRONT ROW!! Celeste was excited to get candy and all Mary Kathleen was interested in was climbing into the front of the double stroller and buckling herself in. She was occupied most of the parade by a blue tootsie pop. We were able to do the carnival rides and see the bear show, do face painting and hairspray, eat funnel cakes and see the fireworks with the girls yesterday thanks to Grandma and Grandpa George staying home with Connie. The photos page is updated with some recent pics.
Happy 4th of July! God Bless America!

MONDAY, JULY 02, 2007 11:16 AM, CDT
Conway visited the pediatrician today for his 4 month well baby appointment and immunizations. He received 5 vaccines (4 shots and one oral). Hopefully he doesn't have the same tummy troubles he got last time from the oral vax. Conway weighed 15 lbs. even (last Monday he had his clothes on) which puts him in the 50th percentile for weight. He's in the 100th percentile for height (thanks to those Beckemeier genes). He's going down on the chart for weight (he had been up in the 90th, 75th, etc.) but he is still average and when I told him that the cardiologist is very impressed with his gaining he seemed okay with it. We'll watch him after he's recovered from the surgery before we get too worried about the decline. He's still doing better than expected for a "heart kid"! Lots of kids are on feeding tubes by this point or special formulas with extra calories, but not Connie. We haven't started solids yet. We tried them right at 4 mos. with Mary Kathleen and she still had the tongue thrust reflex. She was ready around 6 months so we'll try in a month or two for him unless he seems hungrier earlier. Greg put a spoon up to his mouth over the weekend and he didn't open or show any interest. He's not even googlie-eyed when we eat, so we're pretty sure he's not ready yet. No hurry! Dr. Davis asked if Connie smiles and as you all know, he most definitely does! He wouldn't show off much while we were there, but he received his shots again with NO TEARS! Have you ever heard of such a thing? Finally, on the last shot, he started to fuss until I picked him up. The nurse said that one burns on it's way in.
Have a good week!

MONDAY, JUNE 25, 2007 02:56 PM, CDT
Went today to have Conway's blood drawn so that we will know what type he has in order to allow him to be given blood during his surgery from friends or family members rather than "stranger blood". After signing all the releases of information and waiting weeks for word, making multiple phone calls to every doctor's office or hospital where he has been treated, it seems as though ALL newborns have their blood typed when they are born, EXCEPT babies whose mothers are A+. Apparently those babies, including Connie, are not at risk for any of the blood disorders that newborns can have so they don't even test their blood. That meant that we had to go have him stuck today. It was a rotten experience. First they couldn't find a vein on one arm so they then tried the other and finally found it after lots of digging. Then the blood was coming out very slowly so the whole experience was prolonged. Poor fellow!
Once we find out his blood type we may put the word out on here with directions as to what Red Cross to go to and what to tell them for any loved ones who might be interested in donating blood to be used for Connie while in surgery, if needed. We're also waiting on the packet of info from Michigan with all the directions about that.
While at the office to pick up the bloodwork orders, we put Connie on the scale just to make me feel better. His next card. appt. isn't until August and that's a long time to wait! With clothes, Connie weighs 15 lbs 2 oz. Just 21 days ago, he weighed 13 lbs 11 oz so he's growing great! I bet he'll be closer to 18 lbs by the time the surgery rolls around.
All the children are napping now so I better take advantage of the break! Will update again next week after our pediatrician appt (4 month well baby visit) or sooner if he does something particularly cute!

MONDAY, JUNE 18, 2007 10:50 PM, CDT
Hope everyone's Father's Day was nice!
We have been going to the pool recently and it seems as though Conway is "out of breath" when we're there. I thought perhaps he might be in that category of people who should not be outdoors on bad air quality days so I called his cardiologist to ask if there were any restrictions I should know about with his condition related to weather. They told me that children like him don't do well in hot and humid conditions and that pretty much whenever it is above 90 degrees he would do better to stay indoors. She said we should try to get outside early or late in the day. Too bad the pool is only open from 12-6 during the week when we like to go! Oh well. Next summer he'll be toddling through the water and this will all be just a memory! Poor Mary Kathleen isn't going to be swimming as much as we had hoped this summer. Good thing she isn't old enough to resent him for this!

THURSDAY, JUNE 14, 2007 01:47 PM, CDT
Nothing new to report. The photos page has been updated with some recent shots. He's getting so big. Conway is now very ticklish, especially under his arms and on his belly. He's fighting sleep frequently now. Just too interested in his world to want to rest! He holds on to rattles and plays with soft toys that make noise. His face gets so bright and he becomes overjoyed anytime someone looks at him and talks "baby talk" to him. He's drooling like crazy and really chomping on his fists a lot. It can't be teeth already! He's able to spend some time in his Bumbo Seat and Exersaucer now without it being such hard work. We've pretty much put the swing away since he barely ever used it. It wasn't that he didn't like it, he just didn't need it. I know, I know. We are pretty spoiled with how good he is.
Probably won't update again before the weekend. Happy Father's Day to all the dads out there reading this--especially Grandpa George, Grandpa Beckemeier, Great-Grandpa Buford, Uncle Terry, Uncle Tim, Uncle Geoff, Uncle Dave, Uncle Gil, Uncle Mike, Uncle Kent and Daddy!

SUNDAY, JUNE 10, 2007 05:37 PM, CDT
I was surfing the net about Connie's heart condition (what else would I be doing in my free time?) and stumbled across these Celtic Heart Pins for Congenital Heart Defect Awareness. I went to order one (I'm a sucker for anything Irish!) and it occured to me that we could order several for the same shipping fee. I wondered if anyone else would be interested in ordering one. I plan on placing an order by Friday, June 15. Email me at ekbeckemeier@yahoo.com if you'd like to be included in the order. The pins are $5.00 each and can be viewed at http://www.babyheartspress.com/books.html. Scroll down to the pin that is gold with red, blue and purple.
We're heading out to the River City Rascals game. Cross your fingers that we don't get rained on.

WEDNESDAY, JUNE 06, 2007 03:40 PM, CDT
We recently heard the tragic reports about the members of the U of M organ transplant team who were killed in the crash in Lake Michigan. These surgeons were part of the cardiovascular surgery department at the U of M and were colleagues of Dr. Bove, Conway's surgeon. There was an article in today's paper about the crash along with a picture of a stunned and mourning Dr. Bove. I am sure that the entire staff of the hospital is just in shock. I know when we heard the news we were stunned and saddened. We can't help but feel blessed that Dr. Bove was not involved in the crash. We see miracles every day and it was definitely a miracle that the surgeon God chose for Conway was not killed. Our prayers are with the entire U of M family, especially the families of the team of doctors who perished.

TUESDAY, JUNE 05, 2007 10:08 PM, CDT
I took Connie and the girls to the pool today(he didn't get in, of course)! We saw Tory and Savannah there and had a great time. We plan to go a lot this summer. That way the kids will grow up comfortable around water.
We went ahead and resumed the drug Lasix today. It seems like he's "pulling" a lot (that's the term for his sides going way in on every breath) and he was breathing faster and not eating as well today. The doctor told me yesterday that if I wanted to keep giving it to him to go ahead, just call the office and let them know. So, that's what we're going to do.
Tomorrow we're going to get my niece Anna from school and she and Celeste having a "slumber party". Should be a blast!
We pick up Conway's 3 month portraits from JC Penney's on 6/7, so pretty soon you will be seeing the most adorable shots ever!

MONDAY, JUNE 04, 2007 05:27 PM, CDT
We had our appointment with the cardiologist today. Conway now weighs 13 lbs 11.4 oz and is 26.75 inches long. He has gained 9 oz and grown 1.5 inches in less than a month!
Connie's blood pressure was 96 (good), pulse ox 97 (great) and other vitals great. He is not really in heart failure anymore. His breathing is not labored, he's not out of breath or sweating when eating and his color and behaviors are all indicative of a healthy boy. We were told we can stop the drug Lasix. We are going to continue with the Digoxin just for "good measure". Since he's doing so well they ordered another echocardiogram. It's been two months since his last one so they wanted to see if there was any change. Dr. noted that the cause for his lack of heart failure is the large amount of obstruction beneath the pulmonary valve. He said that Dr. Bove (the surgeon we're going to in Ann Arbor) didn't seem concerned about it as far as what type of procedure he'd perform. We are still on for the Double Switch (yay!--that's the one we want) so that was good news.
I asked Dr. about complications and he said that things (punctured lung, paralyzed diaphram, heart block, just to name a few) can happen and if they do we deal with them, but not taking care of it is a much bigger problem. He said that in less than five years we'd have a very sick little boy, even though to look at him now he seems fine. Basically we don't need to be reading up on the complications or think that because other children with his defect have certain complications that he automatically will have those same experiences. He expects him to do so well after the surgery and down the road. I asked about medicines long term and he doesn't think he'll need any. I asked if he'd be allowed to play baseball and he said, "Definitely!" He said that once he's corrected surgically one would never know he had heart problems unless they were using quite sophisticated equipment to evaluate him.
He reminded and reassured us that we are doing the right thing. Both time-wise and where we're going. The funny thing is, he didn't push us to go with this option, but he's glad we are. He said Dr. Bove is one of the top two pediatric heart surgeons in the world and Connie is in great hands.
I asked him if he'd received the letter with Dr. del Nido's opinion (from Boston Children's). He said he hadn't . I told him the jist of it and that I'd email it over to him. He asked when I'd received it and when I told him he said, "You snooze, you lose!"--meaning that since it took him so long to get back with us, he's missing out on the opportunity to operate on a rather unique case.
So, we don't have to visit again until the beginning of August. Our next appt. is Aug. 6th. He just wants to "look him over" before we go up for the big day.
Lord, thank you for Conway's stable condition. We pray that the obstruction below the pulmonary valve does not cause complications with the double switch procedure. Continue to bless him with good health so that his surgery does not get pushed back due to illness and so that his breathing and eating continue to be easy for him. Please give us patience and peaceful hearts during this time that we will wait. We know that your will will be done in your time. We do not always understand this timing, but ask that you give us the patience to wait.

SUNDAY, JUNE 03, 2007 10:33 PM, CDT
Just dropping a line to say that the photos page has several recent pics added. Will update after tomorrow's appointment. . .Goodnight!

SATURDAY, JUNE 02, 2007 12:18 PM, CDT
2nd update of the day just to let everyone know that Conway performed his first "flip" today! He rolled over from his tummy to his back for the first time ever. At 13 weeks of age he's already working on his gymnastics routine (we'll let him try whatever he's interested in, but just between us, I think he's gonna be a bit too tall to have much of a career in that sport!)

SATURDAY, JUNE 02, 2007 11:03 AM, CDT
Okay, we've gotten busy on making arrangements for the trip for surgery (rather than sit here in denial!) and found that the hospital has a hotel inside! Isn't that great? What's even better is that it's actually connected to the Pediatric Cardiothoracic Intensive Care Unit so when I'm not sleeping next to Connie's bed, I will just be a few steps away. That is really reassuring. We're on the waiting list for the RMH, but they can't guarantee you a spot and so you are required to make reservations elsewhere. If we get to stay at the RMH it would save us about $900 which would sure be nice!
Connie has been sleeping a good 6 hours at night before waking up to eat. He then goes right back to sleep for another 4 hours or so and then up about an hour and one half and then down for his first nap of the day. He is such a good baby. He lets us know when he is ready for a nap by fussing a bit and putting is hands up to his face (as if he's trying to cover his eyes or something--it's pretty cute). We take him to his crib, lay him on his side and cover him up. He doesn't require patting, rocking, music or anything. He just simply falls asleep on his own. I told you he was good! He does have some bright pictures in his crib to look at while he falls asleep. Every once in awhile, he wants to suck on his paci so vigorously that he pops it out quickly. He occasionally tries to fight sleep but if left alone seems to give in easily. The more we try to accommodate, the longer he's awake and restless!
We've been going on lots of playdates lately. Mostly with my MOPS group from church and a couple with some ladies I met who have infants around Connie's age. He, of course, just naps or watches Sissy play. Mary Kathleen has a good time climbing, swinging and sliding. She's so busy. I'm surprised at how well all the kids get along. It seems as though the moms get a nice break and the kids enjoy themselves and we moms don't have to put out fires constantly (I guess I'm comparing it to recess duty when I taught and it seemed like we were always having to "help" the children get along).
This weekend we are taking Great-Grandma O'Leary out to breakfast for her 93rd birthday! Mary Kathleen loves birthdays! It doesn't matter whose it is. Cece has a birthday party to attend on Sunday for a cousin and then she is here all week! Next weekend we are going to the River City Rascals game together.
We have a cardiology appointment coming up soon. We go Monday morning and should be able to update later in the day (probably not until the kids go down for naps).
Have a good weekend!

THURSDAY, MAY 31, 2007 11:19 PM, CDT
A packet of information arrived today from the University of Michigan Health System (where Connie's surgery will be performed). Included were details about what to expect before, during and after surgery (general, not specific to his procedure), where to report for testing, parking, lodging, etc. It is completely overwhelming and very upsetting to read. It means that this is becoming real. It means that this really is going to happen and I don't like that. I am crying as I type, but I can't sleep and I figured this would be a good release. So, if you don't feel like getting down, maybe you should skip this entry.
Connie is such a good baby. I don't think anyone (but maybe Greg and my mom and dad) really realize just how good he really is. He is so happy and joyful and brings joy to everyone who meets him. The thought of having to with hold food (milk) from him from midnight the night before until he goes in for surgery and him not understanding why is killing me. The thought of having to hand him over that morning is killing me. The thought of visiting him in intensive care and seeing all the machines keeping him alive is scaring me. All of it is just too much sometimes. I guess I forget sometimes about it all and carry on like he's a normal baby, because right now he is. I know this is best for him, it's just hard to believe it sometimes. He has been described by some as "an old soul" because of how connected he is at such a young age. Even just after birth, he was more alert than most babies and had a way about him that said, "I get it." It is as if he's been here all his life (I know that doesn't make sense and even sounds silly, but it's true-you know what I mean). There are so many out there who have it so much worse. I know that we have so much to be thankful for. I know that this is out of my control and in the hands of someone who is a heck of a lot better at controlling things than me. I'm just struggling with the reality of it all. I'm pretty sure that tomorrow and the next day will be just like the last several weeks have been and I take comfort in that. Things have been uneventful and smooth, just like I like them! It's days when we get a phone call from a doctor, have an appt, read about another case or get something in the mail that reminds us that this is pretty huge. It's not too huge for God, though, so that is who we have to keep giving it to.
Both Bailey and Andrew are experiencing complications. If you haven't read their updates, they are having trouble keeping Bailey sedated post op and she is turning blue. They discovered a hematoma in Andrew's chest right next to his heart and had to go back in to remove it. He has also been having what they think may be seizures. Please keep praying for these kids. I can't imagine the roller coaster that their families are on. Again, we are so blessed.
Sorry for the rant. Sometimes it just helps to be able to let it all out. Now I feel guilty for feeling that way when I see what some have had to face.

WEDNESDAY, MAY 30, 2007 01:59 PM, CDT
We received an email yesterday from Dr. del Nido's office in Boston. They were just following up from his letter and wondered if we had any questions or would like to talk to the Dr. on the phone. That was nice, I thought. I replied that we planned to discuss the letter with our cardiologist at our next appt on June 4 and if we had any questions after that we would contact him then.
I just want to spread the word to all of you who keep up with our sweet boy to add a few other kids to your list of prayers.
One is a little girl named Bailey. We "met" her family through the online support group for parents of kids with L-TGA (Connie's heart problem). She is undergoing her 4th surgery in less than 15 months. It is expected to take 12 hours. Her website is www.caringbridge.org/visit/sweetbabyjames.
Another is a boy named Andrew. He is another heart kid-teen actually and was on a school trip a month or so back and got very ill. He got endocarditis (sp?) which is an infection around and in his heart. He is from Chicago but was hospitalized in North Dakota for some time before he got stable enough to be transported. He has had his heart surgery and has a long recovery ahead. His kidneys are really suffering from all of this and they have not been responding well since the infection. His website is http://www.carepages.com/ServeCarePage?cpn=AndrewJosephspage&uniq=654816&extrefid=tlcupdate.
We've also been alerted about a local youngster who was on his way to school at Chaminade in a carpool and suffered severe head trauma in a one car accident. The family needs any and all prayers they can get and so I am passing his website along as well. It is http://www.carepages.com/ServeCarePage?cpn=SeanGlanvill&uniq=537068&extrefid=tlcupdate.
For both of the carepages you will have to register (it's free) but I know that once you do and read these kids' stories and see their faces your prayers will be heard even that much louder! Don't forget to sign the Message Board for the families as well. We know first hand how much any message left means to everyone involved.
We are reminded each and every new day how much tragedy is in our world, both near and far. We have been given so much by our Lord and are grateful for each day we have here on earth with our living blessings. We know that God is good and draws us near to him, especially in times of sorrow and grief. He can restore these children and by doing so, create living examples of His miraculous powers in order to bring new members into the Body of Christ.

SATURDAY, MAY 26, 2007 11:39 PM, CDT
Connie went to his first Cardinal ball game tonight! His godfather, Uncle Terry got tickets for Grandma George, Aunt Barb and me (for Mother's Day). It was great. The Cards actually hit well tonight and the rains stayed away for the most part. Connie was soooo good. He wasn't crazy about the noise level after we'd turn a double play or score a run, but he was a trooper. The weather was perfect and we left at the bottom of the eighth inning before the downpour. What a great time had by all! Thanks, Uncle Terry!

THURSDAY, MAY 24, 2007 11:12 AM, CDT
It happened again! I wrote a new post and the internet went down as I was posting it!
Conway has been scheduled for surgery on August 28th with pre-op testing on Aug 27th. We're flying up on Aug 26th with a return flight on September 9th. If our stay is extended due to complications, we'll just apply that fare toward a new ticket.
Now we're waiting on the social worker from the hospital to contact us regarding lodging. We're hoping for the Ronald McDonald House, but we know we aren't guaranteed a spot. We're also hoping that whatever hotel we book has a shuttle from the airport to the hotel.
Mark your calendars NOW and keep praying!

THURSDAY, MAY 17, 2007 04:01 PM, CDT
I know you people have more to do with your day than read TWO updates from us, but I just had to pop on and post about our Parents As Teachers visit today.
Our parent educator is very pleased with both Conway and Mary Kathleen. She was surprised to hear Mary Kathleen doing some rhyming already and completing a shape matching game for three year olds! Conway was awake and alert for her visit and was kicking and batting like crazy. We're going to work on play-doh and similar activities that will help strengthen her fingers. She said it is normal for kids who really excel in one area of development (for MK, it is her coginitive and language) to sometimes be not as strong in other areas (fine motor). With Connie we're going to let him spend more short periods of time on his tummy. His neck strength and head control is great for a baby his age.
She'll visit again in September. By then, Conway should be as good as new and MK should be ready for Harvard, I figure! Just kiddin'!

THURSDAY, MAY 17, 2007 09:02 AM, CDT
Well, more good news! It seems that Conway's Aunt Jessie has some connections with the Ronald McDonald House!! Her friend is going to try to help us out and see if we can't get moved up on the waiting list. Now we just need a date!
Connie has had a good week so far. He's doing this funny new thing where he seems to be really sleepy one day and then VERY alert the next. Those days that he sleeps most of the time make for more wakings at night, but that's okay. Usually when he wakes up to eat at night he's very groggy and only eats for five minutes or so. But on those nights he is smiling and laughing and so joyful. Who can be upset about waking up to that?

TUESDAY, MAY 15, 2007 02:21 PM, CDT
We got a letter today via email from the surgeon in Boston. It was written to our cardiologist and we were copied on it so it is pretty medical sounding. From what I can decipher (and I'll discuss it with our cardiologist at the next appointment) he also agrees with the original diagnosis and recommends that Conway be considered for a double switch between 4-6 months of age.
He added that children with this anatomy do quite well in their experience, as the left ventricle and the neoaortic valve maintain good function. He also said something that helped to calm one of our biggest fears. Lots of children develop something called heart block after having open heart surgery. Basically, the surgery itself can cause damage to the part that controls the rhythm of the heart and some children suddenly arrest with no warning after recovering well from surgery--even years later. Needless to say, we were scared about that fact. This sugeon feels as though Conway runs a low risk of AV block as he feels the hole can be closed through the right side of the heart, avoiding the conduction tissue altogether.
We haven't heard back from the other three surgeons yet and they've had the information over a month! Frustrating to say the least. We weren't really considering them anymore to do the surgery, but we certainly would like to hear their opinions.
We called Dr. Bromberg's office today to give him the go ahead to schedule the surgery with Dr. Bove in Ann Arbor, Michigan at Mott's Children's Hospital. It'll likely be set for sometime in July or August. We'll pass on details as they become available.

SATURDAY, MAY 12, 2007 02:22 PM, CDT
I updated this once today, but the internet went down right when I went to post and lost it all! I'll try once more now. . .
Conway got four shots yesterday and one oral vaccination. He was so brave! He didn't even cry until midway through the second injection and as soon as I picked him up he stopped. With Mary Kathleen, I remember her calming down and then 15 or 20 minutes later recalling the traumatic events and starting all over again. Not this little guy. He fell asleep on the way home and took a great afternoon nap.
After the kids got up, we went to a retirement BBQ at the park and saw all of my former colleagues. It was at this time that Connie started developing signs of a bit of a reaction to his shots. He had some redness at the injection sites and was crying as if he was in pain. He NEVER acts this way so I knew it was probably his vaccinations. I actually think the oral vax for Rotavirus was upsetting his tummy more than anything else. He remained unsettled until about 10:30 pm. He ate one last time and then was wide awake. He stayed up and played with Daddy and his activity gym until about 12:30 and then fell asleep.
He woke up this morning around 5:00 as chipper as can be. He's been such a good boy for us.
Happy Mother's Day to all the mommy's reading this. We sure are blessed, aren't we? I was just thinking this morning that Conway is growing so fast! I can't really recall the early days with him (I guess it was a bit of a blur) and yet it seems like he's always been in our family. Weird, huh?

THURSDAY, MAY 10, 2007 05:15 PM, CDT
Conway visited the pediatrician today for his two month check-up. Dr. Davis said, "He looks good to me!" He was pleased to hear the latest report from Dr. Bromberg and especially happy with Connie's growth.
The last couple of days Conway has been sleeping a lot and seemed to be eating less, when he had been eating frequently over the weekend. I guess it was a growth spurt because he's up to 13 lbs, 2 oz and 25.25 inches long. He's gained 2.5 oz and three quarters of an inch since Monday! What a little champ! He was spared the four shots he was due for today while we figure out the details of this new insurance policy, but he'll be getting them soon.
His next regular check-up is scheduled for July 2, when he's four months old.

TUESDAY, MAY 08, 2007 08:33 AM, CDT
Connie slept through the night again last night. Went down at 10:30 and up at quarter to six! We're feeling pretty good today.
Just wanted to let you all know that the photos page has been updated. Go check it out and have a good day!

MONDAY, MAY 07, 2007 03:06 PM, CDT
Connie saw the cardiologist today. What a range of emotions! We were told at the last appt that if he didn't gain better between visits, he'd be put on a new medicine which would require a brief, but inconvenient and yucky hospital stay. When he was put on the scale, I saw 15.6 and was elated. I thought he was 15 pounds and 6 ounces but I was wrong. He was 12 pounds, 15.6 ounces. Big difference! Then I got bummed. Who is bummed when their child falls between the 75th and 90th percentile? Most children with this degree of heart failure are lucky if they are in the 5th percentile, according the the cardiologist. I feared the doctor would admit him, but he came in the room and was astounded at how "good" Conway looks and behaves. He said that looking at his chart (growth) and watching him, you'd never know he had anything wrong. He was honestly surprised at how well he's doing and growing. He thinks the two meds he's on now are "doing the trick". They like babies to gain between 20 and 30 grams per day and he's averaging 20 grams/day. His blood pressure was 98 (up from last visit, but still under 100 which is what matters) and pulse ox was 99 (remember 100 is the best--they like it in the mid to upper 90's). Here's the best news of all: He does not expect Connie to get any worse. He said that the level of heart failure he reached at 6 weeks old is as bad as it will get. He too got feedback from Dr.Bove in Michigan (Ann Arbor) and when we give him the go ahead, he'll schedule the surgery (probably next Monday he'll get the ball rolling). He's going to email the surgeon to see if they can schedule the operation for July. If he continues to grow at the rate he is growing he'll be 15 pounds by July and the cardiologist said that age is irrelevent. It's size that counts. He is still puzzled as to why the surgeons here are so hesitant to operate until he's at least one year. He said that Dr. Bove is a true gentleman (in getting back with us so soon--whereas none of the other four we wanted a second opinion from have contacted us with their thoughts) and that if it were his child he'd make the same choice.
The jist of the story is that I'm walking on air! I couldn't be happier with the way the appointment went. Well, if he was 15 lbs 6 oz I'd be a little happier, but I'll take this! Thank you for your continued prayers and thoughts. I know that God is the reason Connie is coping so well with the heart failure. When the doctor said he was shocked at how he was doing I told him that Conway had so many people praying for him and that was why he's doing "better than expected".
He goes back to see Dr. Bromberg on one month, on June 4th at noon. Celeste will be out of school by then so she may like to come along and watch them do all the vitals and such on him. Plus, it's a pediatric practice so there are plenty of toys and such to play with. He has his 2 month well baby visit (he'll be 9.5 weeks old) this Thursday where he's to get four vaccinations! Poor kid.
Well, just found out our lawn mower has died. That's three major breakdowns since Conway's arrival: the van's transmisison, the washing machine and now this! Hopefully it comes in threes and we're done with that sort of thing for awhile. . .

SUNDAY, MAY 06, 2007 01:31 PM, CDT
Connie slept last night from 10:30pm to 6:00am! What a treat! He was such a good boy at church today too, just like his sisters. Celeste's last day of Sunday Preschool EVER was today (boo hoo). Next school year she will attend PSR since she'll be in first grade. She received a little "graduation" certificate today and put on a little show for the parents. Mary Kathleen will be able to attend next year (after her 3rd birthday in January)--if she's potty trained by then!!
Gotta watch those Redbirds now so we'll check back in tomorrow after the doctor's appointment.

FRIDAY, MAY 04, 2007 02:18 PM, CDT
Nothing medical to report, just wanted to say hi! I took the kids to MOPS this morning (it's a mom's group at my church). The kids play--well, Connie stays with me and Mary Kathleen plays--with the other kids while the moms get some time together to chat and commiserate. Wouldn't you know that it rained again today? Sure enough, every time we've had a MOPS meeting since Conway has been here, it has rained. I joked today that the weathermen should just call and get our meeting schedule in order to make forecasting the rain easier. It is so fun to trek across the parking lot with diaper bags and other necessities while balancing an umbrella and two kids. Thankfully the other moms are a great help and make it easier. I don't know how people with twins do it! I at least have one that is somewhat independent.
This weekend we've got a First Communion celebration to attend. Other than that, no big plans. We're excited and a little nervous about Connie's cardiology appt. on Monday morning. Keep praying that he's gaining well enough to be able to just keep the status quo and avoid hospitalization and a new medication. Man, I wish I had a baby scale! The suspense is killing me. . .Will update after our appt. Take care.

WEDNESDAY, MAY 02, 2007 07:32 AM, CDT
Just when I was going to post that I think Conway is routinely "sleeping through the night" (technical definition = stretches of 5-6 hours), he got up every three hours last night. He went to bed earlier than usual, which would probably account for it. He was in bed at 8:00 and then got up at 1:00am, 4:00am and again at 6:00am. He was only up for a few minutes each time, but still! Silly boy, he just wants to keep his Mommy on her toes. We're ready for the rain to stop so we can get back outside.
Stay dry!

SUNDAY, APRIL 29, 2007 01:30 PM, CDT
Just wanted to post a quick update. We've got some more recent photos on the website now. Check them out! Last night Connie fell asleep on the way home from his Aunt Jessie's wedding around 9:30 and slept all the way till 5:45 am! The girls got up shortly after, around 6am. So much for everyone sleeping in after the big day! The girls danced the night away and Connie was such a trooper. He loved the piano music during cocktail hour! Maybe he'll be able to dance too by the next family wedding!

WEDNESDAY, APRIL 25, 2007 02:34 PM, CDT
Today we got a call from Dr. Bove at Mott's Children's Hospital in Ann Arbor, MI. He has reviewed Connie's information with his team there and his opinion is that the best treatment for Conway is the "double switch" operation to be performed when Connie is between 5 and 6 months of age, IF he continues to grow well. If he were to stop growing in the meantime, he would suggest doing it sooner. He has done roughly 60 of them. 30 of those 60 have exactly the same defects Connie has. The other 30 have a some blockage (stenosis) as well so they get a little different procedure (the one requiring the valves that have to be replaced). Of the 30 that are like Connie, ALL have lived and are doing "well" according to the doctor. He didn't downplay the surgery though, saying it is a very complex defect and a difficult, risky procedure. He noted that Conway's troubles are coming from a "substantial leakage in the valve from the right ventricle" and the VSD (hole). He said this problem is corrected with the surgery. In babies who aren't doing well but are smaller (he called Connie a linebacker!) they do a procedure called "banding" that would help to stabilize the child so they could gain weight before the surgery to correct the defect. He does not feel this is appropriate for Conway due to his size and how well he is growing. The very first double switch that Dr. Bove performed was in a 6 week old, 6 pound baby who is now 8 years old and doing fine. So, it can be done in smaller babies, but if Connie is still growing, he recommends letting him get a bit bigger. We are so excited to hear that he is a candidate for the double switch and has the chance to only require one operation to correct his defect, rather than several procedures throughout his life. He said that his surgery schedule fills months in advance. If we go with him, we'll want to get something on the books for August pretty quickly and then depending on how Connie grows, we can move things around a bit. There is a hotel right in the hospital itself and there's a Ronald McDonald House just a block away. He said that if the surgery goes as planned and Connie has no complicatioins, we should expect him to be in the hospital 7 to 10 days after surgery. We would have testing done (repeat echo, chest X-Ray, routine lab work) the day before surgery. We'll let you know when we hear from the other surgeons. So far, we feel good about this news for now.

TUESDAY, APRIL 24, 2007 07:54 PM, CDT
We got an email from Boston. They've received the records and Dr. delNido will call or email after he reviews it and give us his opinion.

MONDAY, APRIL 23, 2007 08:21 AM, CDT
Conway slept through the night for the first time:) He ate at about 8:30, fell asleep about 9:30 and woke up at 5:45. He ate for about 6 minutes, got new pants and fell back asleep until 8 am! After getting his medicine, getting the goop cleaned out of his eye and putting his ointment in, changing pants again and getting dressed, he's ready for the day. We're going to the library this morning for story time for Mary Kathleen. We have lots of errands to run and then we're going to spend the afternoon with Grandma and Grandpa.
I'm gonna try to get some pictures posted up here before he gets hungry again. . .
Have a good day.

SUNDAY, APRIL 22, 2007 12:59 PM, CDT
Hi everyone!
We have a big day today! We have three parties to go to! Conway stayed home with Greg while I took Mary Kathleen to Mass this morning. Mary Kathleen ate lunch when we got home and is napping now. Connie had a great night. He went to bed at 9:30 and woke up at 2 to eat and then slept until 6:30. Yesterday he had some trouble feeding so we're a little confused and frustrated at why this is still happening.
Yesterday we enjoyed the beautiful weather outside for quite a while. Mary Kathleen stacked all her babies and animals into the wagon and Connie sat in the bouncy seat while Greg cut goodieboxes and I cleaned our new deep freeze. We needed more storage for all of Conway's milk!! We had no room in our freezer for our own food! We found the freezer on craigslist for $50. What a deal!
We'll try to post some new pictures early next week.

THURSDAY, APRIL 19, 2007 01:40 PM, CDT
This morning we had a visit with the pediatric cardiologist (PC). Conway now weighs 12 pounds and 8.8 ounces. All of his vitals were good and they said he "looked" better than at his last visit on April 5. Hopefully this means that the two medications he's currently on are doing the job. Under normal circumstances, everyone would be happy with a 12 pound 6.5 week old, but Conway is under a microscope and the rate at which he is gaining now is creating some cause for concern (he only weighs 8 ounces more than he did on April 5). He was above the 90th percentile and now is below the 75th so they want us back in three weeks for a weigh in. If he isn't gaining at a greater pace, they will admit him for 23 hours to St. John's Pediatric Intensive Care Unit to begin to administer a different medication. Since the medicine is a high blood pressure medication and he doesn't have high blood pressure, he will need to be monitored every 15 minutes to make sure his pressure doesn't get dangerously low. He will be given an IV so that if his pressure dips too low they can quickly give him something to offset that. It's just a precautionary admittance, if it is needed at all. Basically, we're blaming the slow gain over the past couple weeks on the fact that the cold made it hard for him to eat well and that now that he is getting over it, he'll begin gaining well again.
We're going to watch the Cards-Giants game now and after Mary Kathleen wakes up from her nap, finally make that follow up trip to the library to see those baby chicks.

MONDAY, APRIL 16, 2007 10:41 PM, CDT
Some Good News! Conway has had one whole day of good feedings! It has been so peaceful on him and me. He went about 4 hours between feedings during the morning, but in the afternoon, I think he was making up for not eating well all weekend so he ate every 2 hours. His cold seems to be going away. It didn't last half as long as Mary Kathleen's cold. Perhaps that's because he's getting the antibodies from nursing to help fight it off better. He only needed to have the bulb syringe used on him one time today and it was after going for a walk. I got scared and thought that he may have bad allergies since he was fine and then after being outdoors, had red, watery eyes, sneezing and increased drainage. The nurse from the pediatrician's office called this evening to follow up on how Connie was doing since he went in this weekend to the office. She was pleased to hear that he is getting better and had a good day and thinks that being outdoors may have just irritated his cold and caused the symptoms to return. I don't recall anyone ever calling to follow up on one of Mary Kathleen's appointments, but then again she didn't have a heart condition. I guess that earns you special treatment or something!
We're enjoying the more seasonable weather. Today Grandma Marybelle came for a visit and we took a walk to the playground. Mary Kathleen is hoping that the baby chicks at the library will hatch tomorrow so we can walk there and see them before they have to move back to the farm.

SATURDAY, APRIL 14, 2007 01:30 PM, CDT
We called the pediatrician's office today to let them know about Conway's cold symptoms. Our biggest concerns were that his heart rate might be increased and the vomiting that has started. Although there's nothing he can take for a cold, they wanted to see him just to be safe. He was swabbed in the nostril (which he did not care for one bit) for a culture to see if he had RSV. The doctor said that heart babies tend to get it easily. He said if it was negative, we'd treat it like a cold and if it was positive, he'd call the cardiologist and probably end up admitting him to the hospital. That was a long 10 minutes to wait for the result to come back! Luckily, it came back negative and so we got to come back home. The doctor said that his heart rate was right at 60 beats per minute, but that if we see it increase around 80 bpm or we see his nostrils flaring that we should call the exchange and take him into the ER. We got home and Grandpa held him for a minute (he had been watching Mary Kathleen while we made the trip to the doctor since Greg also got sick) while I put Mookie down for a nap and then he got a new diaper, got his nose cleaned out and did a pretty good job eating his lunch. He's resting now in the bassinet with the vaporizor on and the head of the bed elevated to help keep the drainage moving. Hopefully this weather will break and with the warm weather we'll see renewed health.

FRIDAY, APRIL 13, 2007 10:59 PM, CDT
We think Conway may have caught whatever Mary Kathleen has (ped thinks it's a common cold). Her symptoms are runny nose and watery eyes and LOTS of drainage that she doesn't like trying to swallow. Hers started Tuesday morning and by this morning he had a stuffy nose and what seems like drainage because he has so much saliva in his mouth that he doesn't seem to want to swallow either. A few times he's been sound asleep and started gagging. What a scare! He's not been eating as well the last two days as he had been earlier in the week. I think eating is harder for him with just the least amount of junk in his nose. We've been using the bulb syringe for that before each feeding. Tonight he had another major spit up, but this time I think it was caused by gagging and all the drainage in his tummy upsetting it and not something heart related. Taking him anywhere is next to impossible with these feeding issues. He had to come with me to my 6 week follow up with the OB today to have his circ checked and of course, was due to eat right when the appt started. Knowing how much trouble he has, I don't like to nurse in public b/c it is very difficult to be modest about it so I had to pump in the parking garage and take a bottle in to the doctor's office with us. He doesn't drink much from the bottle, even though everyone says it is easier for a baby to drink from. It took him 25 minutes to take in one ounce before he got tired out. At home we tried again and it took another 30 minutes for 1.5 ounces. He should be taking at least 4-6 ounces per feeding by this time. I feel like he gets more when he nurses, but it is tricky to know for sure. We're hoping whatever he's got going on passes soon so we can tell if the meds are working or not. We go back to the cardiologist on Thursday to let him know if we see improvement but it will be hard to say if he's been sick for a week.

TUESDAY, APRIL 10, 2007 12:53 PM, CDT
Conway visited the pediatrician today for his routine well baby check up. He is still 12 pounds and his head size is the 50th percentile. He had to get vax for Hep B today. He was so brave. Dr. Davis thinks his eyes are very pretty and that they'll stay blue. He also commented on how strong he is. When he held him up Connie stood for a long while. His neck is also getting stronger. He was such a show-off! He still has the clogged tear duct. The doctor says that if he still has it at one year an opthamologist will probe it to clear it up. If his heart surgery takes place somewhere near then, he will coordinate it so he could have his eye done at the same time. If his surgery is much sooner, he'd rather wait to mess with the eye until closer to one year.
Our next follow up there is on May 10 and we see the cardiologist next on April 19.
Have a good day!

MONDAY, APRIL 09, 2007 11:15 PM, CDT
I was reading on a website about another March Mommy whose daughter was born with HLHS, another VERY serious heart defect. She has already undergone her first surgery and she mentioned how great the Ronald McDonald house has been in Chapel Hill, NC. That got me thinking and I looked it up and both Ann Arbor, MI and Boston, MA have a Ronald McDonald House. I'm going to try to call them this week and get information on possibly staying if we end up traveling for Connie's surgery. The mom said that the local college students bake goodies for the siblings and families and that the staff is great with her older, preschool aged girls. They had to celebrate Easter there. She shared pictures the kids having an egg hunt there. It broke my heart and really put our situation in perspective. We are so blessed that Connie is stable and will likely have an operation that will only require a week to 10 days of intensive care.

MONDAY, APRIL 09, 2007 02:44 PM, CDT
We got a phone call from Dr. Del Nido's office in Boston today! They wanted to make sure that we received his response to our email last week since he was getting a message saying it bounced back. We did get it, indeed. They said they'd also call us as soon as they receive the package of Connie's medical info. We were pretty impressed by their quick response. We kind of expected that these surgeons were too busy to acknowledge an email coming from a parent rather than another doctor, but Dr. Del Nido proved us wrong. His office seems very friendly and caring.
Have a good day. Connie spent the morning with Grandpa while I took Mary Kathleen to the library to listen to stories about baby chicks and see the eggs. We'll go back this weekend to see the newly hatched chicks! He's been doing better eating. Last night he got fussy when nursing so we offered a bottle. He out and out refused the bottle and wouldn't stop screaming until we tried to nurse again. He immediately calmed down! Seems as though he's taking some lessons from his sister on how to be a terrible two already. When given a choice, Mary Kathleen picks one and as soon as you give it to her, she demands the other choice! Ahhh, the joys of parenthood!

SUNDAY, APRIL 08, 2007 02:36 PM, CDT
Baptism and first real bath pics are now uploaded. . .He has been eating a little better today and only spit out a little medicine!

SATURDAY, APRIL 07, 2007 11:40 PM, CDT
Conway was baptized this evening during the Easter Vigil. What a beautiful ceremony! For a baby who NEVER cries (except when feeding), he had his share of fussy moments tonight. Grandma George was giving him a bottle when they called for him to so that he could receive the oil. That didn't make him happy. Then later on he finally started drinking the bottle again and it was time to go to the front of church with his godparents, Aunt Mary and Uncle Terry. He cried when Mommy handed him off to Father Joe for the baptism, but as soon as he was placed in the holy water, he instantly calmed down and was at peace. Some might say that was because he loved the warm water (like in his bath), but we think it was because the water was holy and he felt God's warmth surrounding him.
Today was also Connie's first big boy bath. His belly button FINALLY fell off Thursday night. He enjoys being in the warm water, just like Mary Kathleen did.
He didn't eat great this afternoon, but when we got home from church he did fabulously. However, just as I was giving him his PM dose of medicine, he projectile vomited and lost it all! Hopefully he does better during the night feeding.
Happy Easter!

THURSDAY, APRIL 05, 2007 01:33 PM, CDT
We just got home from the cardiologist where Conway was diagnosed with heart failure and given two prescriptions to be given daily to manage. One helps get rid of the excess fluid and one helps the heart to pump. The doctor is astounded at how good he looks and how well he is gaining, despite the feeding trouble we've been experiencing. He now is 12 pounds and .6 ounces. He is 24.25 inches long! What a big boy. His pulse ox is 98/99 (great) and his bp is 84 (also great). His rate was back down today so that was also good. He is showing normal signs of a baby with a large VSD (hole in heart). He is taking long time to feed and getting tired while eating. The good news is that because he is experiencing heart failure, it is likely that he has a better chance to be a good candidate for the double switch operation. If the sub pulmonic area was keeping him from failure, then it would also prevent him from getting that operation and the alternative is a procedure that would mean more surgery down the road. It isn't a for sure that he'll get the double switch, but it is looking more likely. The other procedure, a Senning/Rastelli, would require going back in to replace the pulmonary valve with a new cadaver valve every 7-10 years for the rest of his life. The doctor was very pleased with two of our choices for second opinions. He actually worked with one, Dr. Bove, at University of Michigan. The other, Dr. Del Nido in Boston, is also among the top pediatric heart surgeons in the world. They will be getting Connie's info soon and we'll update you more when we hear back from them. We follow up with the PC in two weeks to gauge how well these medicines work. If they aren't working, he'll be hospitalized for a day or so while they start him on a new medication. On our way out we stopped to get another x-ray for comparison. Mary Kathleen did great at little brother's appointment.

WEDNESDAY, APRIL 04, 2007 04:00 PM, CDT
We went for the new echo today and he still has a heart problem, despite all our hopes and prayers for a big miracle. He was such a good boy for the whole 45 minutes. He just lay there and let them test him. Periodically he'd stretch or stick out that barrel chest of his. I asked if he has pulmonary stenosis, since we see that associated a lot with this condition and when to do the surgery seems to hinge somewhat on the presence or lack of this. I was told that it could best be described as a sub-pulmonic stenosis. Basically, a narrowing of the entry to the pulmonary artery, caused by the right ventricle pushing into the left ventricle in a funny way. They said the left ventricle was malrotated as well. The doctor did not see him today, but after the echo I shared my concerns about his fast breathing and his eating with the tech and she was very kind and offered to have a nurse check him out since our next appt isn't until 4/16. He was awake and kicking and excitable during the exam and would breathe fast but then slow down. She said he is working a little hard, but not "laboring". She timed his rate and compared it with the last visit on 3/15 and said that his rate has increased. This means he is breathing faster than he was. She said she would share this info with Dr. Bromberg this afternoon when he got back to the office and see if he wanted to see us sooner than the 16th. She also said he'll read the echo and get back with us tonight or tomorrow, dictate a report with it and send it off to our five second opinions.
She also said that the tech is really super and if she had seen anything alarming during the echo, she would have had us see a doctor before we left. As I type, the cardiologist's office called and wants us in tomorrow at 10:30 for an appt to see the doctor because the nurse told him about the faster breathing rate and my concerns with feeding issues. Also, the nurse noted that according to the doctor there are some changes in his echo this time and he wants to talk to us about them. So, we hold our breath. . .

MONDAY, APRIL 02, 2007 09:16 PM, CDT
Conway had a visit to the pediatrician today due to increasing difficulty with feeding. Since last Thursday he has been very fussy while eating, whether nursing or with a bottle. We had been told that that was a sign of heart failure, along with difficulty breathing so when he struggles to catch a breath while eating, we worry. Even though he seems like he is getting nice and big, we worried that he was gaining water weight instead. He was weighed and examined and the doctor determined that he may have had a little cold or gas or that he wasn't hungry. He said that since he is gaining weight well and due to the fussiness at many feedings, we can now feed on demand, rather than every three hours during the day and five during the night. He doesn't think he is swelling at all. Connie now weighs 11.8 lbs. and is 23 inches long. He's grown another .5 inch and gained over a pound since his last visit. For the last three days, he's worn outfits that are sized 6-9 months! For Cardinal Opening Day yesterday he wore a new Cardinal outfit that we thought would fit him later in the summer. He is getting so long waisted. Of course, this evening, he has been feeding better, knock on wood. The doctor felt confident in waiting it out until Wednesday when we go back to the PC for the new echo.

THURSDAY, MARCH 29, 2007 07:23 PM, CDT
After we signed releases to have Conway's echo and clinical reports sent to the other five surgeons, we were told by the PC's office that they will have to repeat the test because the quality wasn't great and it was too long. This was the only imaging tool used on Connie, when he was just two days old. We have been given an appt to get a new echo next Wednesday, April 4. We're excited to get a new, more clear test, but a little upset that we weren't told his echo was not great in the first place. We wonder how good of a look anyone has really gotten. We were hoping the other surgeons would have his records in their hands by then and now we will have to wait longer to hear back. We hold out hope that by his exam next Wednesday, his heart will be healed and they will see a perfectly beating miracle. Please pray for a miracle!

THURSDAY, MARCH 29, 2007 10:59 AM, CDT
Conway's knees have been turning white and he has had a funny purple line on his thighs. We called the cardiologist and described the problem, fearing that we were beginning to see the decline in his heart function. The nurse reassured us that this is a circulation issue and not related to his heart. They said that problems we'd see would not be hands and feet and arms and legs, but rather, his lips and area around his eyes would turn blue and it we would know immediately something wasn't right. So, we feel better about that.
We signed up to a group online of others with children with LTGA and have been getting messages from them. Yesterday was a rough day as we learned of two deaths of children in the group. We posted an introduction and described what we know so far about Connie's condition and got some wonderful feedback. The parents on there have recommended over and over a handful of surgeons for us to look into. We have requested that our PC send the info to these five surgeons (they are in Stanford, CA, Boston, MA, Chicago, IL and Ann Arbor, MI). The offices said that we should hear within a week or two from them receiving the information what their opinion is. We are very excited to be able to send them the info first, without having to make trips to these places initially.
Here's a message from one dad that really made us feel encouraged: Erin,Welcome to the group. Our daughter is about 9.5 months old. Had her DS around 4 months (11lbs.) Both Dr. Bove (Michigan) and Dr. Del Nido (Boston) have done the double switch in very small and young babies (6lbs and less). Every case is different (it depends on how strong they think the left ventricle is) but right now the preference of these two surgeons (our two opinions) is that 3-4 months is the best time if the kid is ready. Prior to talking to them we heard everything from 1 year to 7 years......As you will find out, there are not many surgeons in the country that have much experience with the DS and experience does count. We have been told that the DS is one of the toughest heart surgeries to do (from the surgeon's standpoint). Your PC should be able to send copies of your echo's to any center that you want for opinions. It should be at no cost to you. Don't be afraid to ask for 2nd opinions and definately ask your doctor about their experience with LTGA. We live in Nashville (similar in size to St. Louis) and the children's hospital here only sees about 2 new cases a year for all of Middle Tennessee.The other thing that you will find out is that no two cases of LTGA are the same. L-TGA almost always has some other defect(s) that comes with it (in your case the VSD). Some of these defects are better than others in regards to DS. Some will help train the ventricle and some will make the surgery not a good option. Our daughter had 2 VSDs and a small ASD (the VSD's usually will help train the left ventricle). The surgeon will also look for other things like the shape and location of the coronaries as they will have to switch them as well.In the end we ended up with Dr. Bove in Michigan and were very happy with our decision. They have "inherited" many of the cases that Dr. Mee would have had so they been doing many DS's the last few months. While we were there there was at least 3 other patients that were there receiving/recoverin g from the DS. Please don't hestitate to post or email us directly if you have questions with our experience at U of M. There are several other parents here that have been to Michigan as well.Good luck to you and your little one.Dave (Evelyn's Dad)
Have a good day! I think we're gonna go have lunch outside today. . .

TUESDAY, MARCH 27, 2007 09:54 PM, CDT
We have been spending lots of time outdoors the last few days enjoying the beautiful weather. Conway sleeps in his bassinet while Mary Kathleen plays on her riding toys or with her kitchen set or swings.
All the wheels are set in motion for Connie's upcoming baptism at the Easter Vigil. We are so excited. Church called today to confirm everything and give us the rundown. I ran into someone else from church today while at the produce stand and was reminded of the wonderful body of Christ we are surrounded by at Assumption and how blessed we are to have so many people holding up our little guy in prayer as well as offering support to us.
We finished the birth announcements so keep an eye out for it in your mail in the next few days. If we miss you, we'll post it in the photos section of this site also. I'm so proud of my "designer" husband for coming up with yet another extra special birth announcement (I thought he'd never be able to make something nearly as wonderful as Mary Kathleen's, but he did!).
That's about it for now.

FRIDAY, MARCH 23, 2007 01:00 PM, CDT
Well, we've gotten our first prescription (boo hoo). Conway has a gooey eye and after he naps it is crusted shut with yellow drainage. We called the pediatrician and were told it is likely a clogged tear duct and that we are to use a warm compress and massage the area several times a day. In addition, we have to apply an Erythromycin ointment in his eye three times per day. Poor baby! This is very common in newborns and they said it is also common for it to reoccur several times in the first year of life.

FRIDAY, MARCH 23, 2007 11:26 AM, CDT
Today Conway is wearing his first 3-6 month outfit! Can you believe it? He's not even 3 weeks old and he's wearing a 3-6 months. It's not big in the least. It's a cute cowboy sleep 'n play from Mrs. Dressel (see photo on welcome page). Be sure to check out the new photos on the photo page! Have a good weekend. We're hoping for the rain to stop so we can get back outside!

WEDNESDAY, MARCH 21, 2007 02:30 PM, CDT
Good News! Erin talked to the insurance company today and found out that indeed St. Louis Children's Hospital is a covered provider. So is the Cleveland Clinic as well as Johns Hopkins. Those are the only hospitals she's looked up so far. Now we just have to make sure whatever surgeons we're looking at are too. The best news though, is that even if we go to out of network providers, the yearly maximum that we would have to pay out of pocket would be $3000! Isn't that great news?? We have a $1000 deductible and are responsible for 30% of any charges UP TO a total of $3000! How wonderful and what a relief for us to know that we won't have to make tough choices for Connie's care and treatment based on insurance/financial reasons alone.
Turns out we could have delivered ;him at MO BAP after all! Bummer, but what's done is done. I probably would have liked St. John's a lot more had they not kept my baby in the NICU and all that went along with that situation. . .

TUESDAY, MARCH 20, 2007 08:32 PM, CDT
It's Mommy and Daddy's 3rd Anniversary! We ate leftover lasagna, grilled cheese sandwiches and chicken noodle soup! Dessert was the box of Drumsticks in the freezer!
It's 8:30pm and we're finally sitting down long enough to write an update! Another great day for Conway. We wish it hadn't rained though, 'cause Mommy's dying to try out the double stroller. Oh well. Tomorrow's supposed to be nicer. Conway went to the grocery store for the first time today. With Mary Kathleen in the front of the cart and him in the back, there's not much room for food, so Mom had the brilliant idea to put him in a front carrier. Those things are hard to operate in the middle of the parking lot by yourself! He was no worse for the wear though. What a trooper. Mary Kathleen liked him not being in the back of the cart too, because then she was free to toss back all of our groceries with reckless abandon! The trip was cut a bit short, though, because in the middle of the cereal aisle he had an exploding diaper. That made him pretty unhappy. He usually doesn't get too bothered by a messy diaper, even sleeps through most, but this time he was sitting with all his weight on his bottom, I guess and he got a little irritated. Poor baby!
Mommy is getting better about planning and organizing her day with two little ones. She's also getting better about letting some things go. For instance, today the cold groceries got put away when we got home, but the rest had to wait a couple of hours and that was okay. She gets excited when we have things to do, but stresses out about it way too much. She's already fretting about the fact that the next doctor's appt. is at 10am and she's wondering how we will possibly be able to get to St. John's by that time! The last one was 11:30 and it was hard. Mommy did have a dentist appt. on Monday at 10:15 and we made it there on time, but after waiting in the waiting room for an hour and fifteen minutes, we decided that we couldn't stay any longer. Mary Kathleen was so good but the poor kid was getting hungry for lunch by that time so we thought it best to reschedule.
Mommy and Daddy are taking a small break from researching (obsessing) about my condition. So if you don't hear anything in the next few days about second opinions and such, just know that they need some time away from all of this right now and they are trying to focus for a bit on how great I'm doing and all they have to be grateful for right now.
We'll try to get more pics up soon! He's growing like a weed. Don't know how much he weighs now-man, I wish we had one of those baby scales!-but I'm sure it's more than 10 lbs.

SUNDAY, MARCH 18, 2007 01:17 PM, CDT
Mommy got a little scared last night because Conway seemed to be rather sluggish and not feeding well. He's doing better today. Mommy is probably just a bit paranoid.
Conway went to church for the first time today. Fr. Joe gave him a blessing at Communion. He slept right through the entire Mass-just like Daddy, haha! We're having another quiet day at home again. Looks like we will be doing a lot of that, at least until April arrives and there's less of a chance of catching something. Mommy showed her friends at Assumption Sunday Preschool pics of "Mister Sir" (his new nickname that Daddy gave him) when she dropped Celeste off for class. We saw lots of people at Mass who have been praying and thinking about our little man. We feel so blessed to have so many people supporting and loving us! The Gospel today was about the prodigal son and the homily was about how we're guilty (like the older brother in the story) of having that sense of entitlement, that we deserve certain things in life, rather than realizing that it is all a gift. I gotta tell you, it's hard for me to come to terms with the fact that I feel like Conway deserves to be healthy and we are entitled to a healthy child. What I need to be thinking instead is how every day with him while he is stable is a gift.

SATURDAY, MARCH 17, 2007 05:00 PM, CDT
Last night we were given the name of a Johns Hopkins surgeon and told that he was the one who perfected the double switch procedure. We'll be looking him up next. . .We've also been told that his condition can be referred to as L-TGA as well and we're waiting on approval to a support group for this. Hopefully we'll find out more about it and learn how other cases have been treated. I've read about a few so far that were all treated differently and none with a double switch procedure. So, it looks like the jury is still out on how to repair it.
Today was Conway's first holiday--St. Patrick's Day! He doesn't own a lick of green yet, but his sisters are wearing enough to cover him for this year. We all slept in today and had a lazy day at home. Connie is starting to wake up on his own for feedings a few times a day. That makes Mommy and Daddy feel better. He hasn't had gas once yet, but smiles a lot! It's like he knows when something funny has been said in the room because he smiles and looks like he's laughing, but with no sound. He also smiles when he's kissed on the lips! Won't be long and he'll be marching in a St. Paddy's Day parade himself, I bet. Seems like an eternity until then, but I know from experience that the time really does fly.
Erin Go Braugh!

THURSDAY, MARCH 15, 2007 02:43 PM, CDT
Today was our first visit to the cardiologist's office. First the nurse weighed and measured him and took all his vitals (bp=normal, pulse ox=normal, pulse=normal, hr=normal). Guess how much he weighs? 10 pounds!! He's also grown an inch too. Who says having a heart condition will make you a poor eater?
Next the doctor came in and did more listening to his chest and back and felt for a pulse in his thigh and felt his tummy. Connie was so good during this time and just lay there letting them mess with him. It was even time for him to eat lunch, but he stuck it out. The doctor explained that he is doing "as expected" for this age and asked lots of questions about his eating habits and color and perspiration. Then he told us that he's shown the surgeons at Children's Connie's ultrasound and they have some concern about the flap of tissue that is covering the opening to the pulmonary artery. This tissue may be what is keeping him stable right now and keeping his lungs from flooding with blood, but when they do the surgery and switch the arteries, it would be preventing normal blood flow to the aorta and thus to the rest of the body. They will know more when they get in there if it can be moved or taken care of, but it is possible that they wouldn't end up doing the double switch and use a cadaver valve in that spot that would have to be replaced in the future since it wouldn't grow with him. The surgeons also want to wait until Conway is a year old before doing the operation, unless his condition prohibits waiting. They would defer to the judgement of the cardiologist at that time. If Connie is doing well, they want to wait. If the cardiologist says he can't wait, they'll go with what he says.
We go back to the cardiologist in a month and if he is still stable at that point, we'd stretch out the next appt to June unless something new develops. We were sent downstairs for a quick chest X-Ray and it is now 2:55 and we're home and the kids are both napping. Mary Kathleen was very good at the doctor's visit. She was impressed with how many toys were in the waiting room. Grandma George was a big help during the appt. too.
Greg and I would like to look more into the surgeons and their backgrounds and possibly into getting a second cardiologist's opinion, especially since they are recommending a different surgical procedure, on a different timetable now. We can't stand the thought of Connie being old enough to know what's going on when he undergoes the procedure. But, if it is best to wait, that's what we'll do.

SATURDAY, MARCH 10, 2007 01:05 PM, CST
Yeah! We have our first cardiologist appointment scheduled. Mom called yesterday to make the appointment for two weeks from discharge (3/21) and was told that the earliest Dr. Bromberg could see him was 4/2. Mom asked to speak to the nurse, for she wasn't comfortable waiting that long. After all, the pediatrician and the discharge orders both called for a two week follow up. Since Dr. Bromberg is out the week we should be going in, they were very nice and said we could come in the Thursday before he goes out of town. You can tell a lot about an office by the receptionist and the nurses. I'm so glad they were so accomodating. Our appointment is 3/15 at 11:30. Our next pediatrician appt. is 4/10 at 10:00. Poor baby still has to get his vaccinations on schedule!
Today Conway got his first spongebath at home. I know, I know, we've been home since Wednesday afternoon. However, he was having a bit of trouble keeping his temperature up, so I didn't want to get him chilly by getting him wet. We cranked the heat up and did it this morning. He did great! He really is so easy going. We just can't get over the fact that he doesn't scream through every diaper change and doesn't mind the bath or changing clothes so much either. Connie's big sister Celeste is here this weekend and she was writing in her Barbie diary about how she has a new baby brother and she likes him and he is sweet. She is only five, in kindergarten, and wrote all that unassisted! She taught Mary Kathleen her ABC's at the age of 18 mos., so surely she'll be a help getting Conway super smart as well. The weather is nice today, so after naps we will probably spend some time outdoors. Fresh air is healing to both children and adults, I think.

FRIDAY, MARCH 09, 2007 01:25 PM, CST
I almost forgot to add that Dr. Davis is very hesitant at this point for Connie to see many visitors. He said that getting sick would be harder on him than on other newborns because of his decreased lung capacity. He pretty much just wants him held by Mom or Dad and not touched by any children. We'll try to keep everyone in love with him with lots of pictures and save the baby passing for when he's stronger!

FRIDAY, MARCH 09, 2007 01:16 PM, CST
Today Connie had a visit with the pediatrician, Dr. Davis. He has gained over 1/2 lb since early Wednesday AM! Unbelievable!! The doctor is very pleased with his current weight of 9 lbs. 4 oz. His jaundice is clearing up and doctor is happy with his wet and dirty diaper output. He said we are safe to wake him every three hours to eat during the day and at night we can let him go as long as five hours between feedings. He feels like Connie's "sleepiness" is just due to the fact that we got lucky with a laid back kid, rather than some sign of his heart weakening. Mom is so happy to hear that. The doctor said that if he starts to struggle with eating due to fatigue and shortness of breath, that we would put him on medicines to help before we had to supplement with alternate forms of feeding. That also made Mommy happy. Dr. Davis felt his tummy because sometimes the excess blood that is getting into the lungs can also fill up and swell the liver and spleen, but our little guys tummy feels fine! We're back home and Mary Kathleen is being two and not wanting to go down for a nap. She woke up at 4:30 this morning! Believe me, she NEEDS a nap. Conway is starting to stir. Dr. Davis said he's on track to be a linebacker. He's officially in the 75th percentile for his height and 90th percentile for his weight.
Keep checking back. I'll try to download the camera and get a current pic up here soon!

THURSDAY, MARCH 08, 2007 07:13 PM, CST
Mom and Conway were finally able to come home yesterday afternoon. The NICU nurses were all absolutely wonderful. It turns out that two of them went to school with my sister Jessica at Cor Jesu. They recognized my father and I when we went to visit Conway.
All things considered, Erin had a good day. She is very thankful to be home. Mary Kathleen was a sweetheart and Conway ate like a champ. Grandma & Grampa George came over and cleaned the house. Grandma Marybelle came over for lunch and is out this evening searching for a new washing machine for us. The day Conway came home the washer broke, what luck!
The doctor told us that Conway will start showing signs of his illness in about 2 weeks. We can expect his breathing to become more and more labored over time. Erin and I both wish that the operation could be performed immediately, but the cardiologist says Conway needs to be close to 15 lbs before the procedure.
Erin & Conway have an appointment with Dr. Davis, the pediatrician, tomorrow at 10am. Her mom is going to take her while her dad watches Mary Kathleen.
We want to thank everyone for their help and prayers so far!!!

WEDNESDAY, MARCH 07, 2007 03:30 PM, CST
Conway was born on March 3, 2007 at 2pm at St. Johns in St. Louis, MO. He weighed 9 lbs. 2 oz. and was 21.5 inches long. His parents are Erin & Greg, and he has two older sisters, Celeste (5) and Mary Kathleen (2).
Erin's pregnancy was uneventful. The birth went smoothly and Conway looked as healthy as can be. About 4 hours after the delivery a nurse practitioner let us know that Conway had a heart murmer. Dr. Davis, Conway's pediatrician, said this was not uncommon and most murmers went away after 24 hours. Well, a day later the murmer was still there. Dr. Davis was still confident, saying it was probably a small hole in Conway's heart and would most likely heal itself over time.
About 2 hours before Erin and Conway were to be released from the hospital, Dr. Davis phoned Erin and said Conway had a potentially surgical condition and they could not go home. Dad rushed from work to the hospital just in time to join in on an ultrasound. Mom was already there along with about 4 other staff. No one told us anything except that the cardiologist on call would be here soon to speak with us.
The cardiolost arrived about 10 minutes after the ultrasound ended. He asked us to please wait while he went into another room to review the film. Another 10 minutes later he came back and asked us to sit down and he'd draw us some pictures to illustrate the problem. As mom sat crying and dad listened nervously he explained to us that Conway had a very rare heart condition called ccTGA (Congenitally Corrected Transposition of the Great Arteries). A good explanation can be found at:http://www.mayoclinic.org/corrected-transposition-great-arteries
In addition to the ccTGA, Conway has a large hole between the two lower heart chambers, called a VSD. About 60% of people with ccTGA have a VSD accompanying the defect.
To make a long story short, Conway needs surgery. The procedure is called a "Double Switch" operation and will be performed in about 4-5 months when Conway is around 15 lbs. It involves 3 separate procedures: 1. Close the VSD. 2. Switch the major arteries. 3. Build a bridge between the two top chambers of the heart.
The cardiologist says that in the hands of a skilled surgeon Conway has a 90% chance to survive the operation. While Erin and I are overjoyed at the odds, the cardiologist says that in his profession those odds are not so great.
And so begins our journey... all future updates will be in the 'Journal' section of this web site. May God bless you and hear your prayers for our son.