Afternoon Update

Woke up at 3:15 screaming until 4pm. No tricks worked. The plan is to tolerate a feeding and get Connie back home. Mom is currently holding him and he's getting heavy but it's the only way to comfort him. Every time she sits down he goes ballistic.

We're hoping to get out of here at 5:30pm, but that depends on how well he does with the feeding he's getting right now.

So far so good and no throwing up.

He's Out

We just met with Dr. Balzer and got the report and viewed the cath. He has considerable narrowing in the pulmonary artery going to the right lung. That is where they ballooned and the balloon made no difference in pressures. It went right back to the way it was. During the cath, his pressures in the RV were about 2/3 of the LV. This is too high, but also a bit misleading. During sedation, pressure drops from around 100 to 70, so a reading in the RV of 55-58 seems really high compared with 70, but not so high compared to 100. He talked to Dr. Bromberg during the cath and decided not to go ahead with a stent at this time! Yay! He said he can probably even go home tonight! We are thrilled. We follow up with Dr. Bromberg in a month. He thought we'd most likely do another cath in a year to two years, but Dr. Bromberg will decide that based on other tests over time. I asked how the RV-PA conduit looked and he said it looks good and if it stays as good as it is now that he can go 5-7 years before having it replaced! Initially, after surgery, we were told 3 mos-3 years, so this is outstanding news. No more open heart surgery for at least five years (for now, anyway). He also has two leaky valves but the leaks appear to be mild at this point. I told him that they had been calling it Severe Neo-Aortic Insufficiency and he said that over time with improved heart function, that the leaks can improve and that appears to be the case. Yay again! Also, we could see the two residual VSD's but they are very small and pose no problems to him.

Thanks for the prayers. Now we just need prayers that he'll wake up and then that he'll be sleepy again for the length of time that he has to lay flat (six hours, I think). They said they can give him something to help, but we're dreading keeping him happy and flat for that long.

Erin and Greg

First Update

Heather just came in to tell us that they have started ballooning. Ugh. This means that he required an intervention and we are definitely going to be admitted for an overnight stay. When Dr. Balzer came in to talk this morning, he said he didn't think ballooning would work so now we are kind of expecting that they'll have to stent it:(

Pray that if this is the case that he does not develop a big leaky pulmonary valve.

I feel like the wind just came out of my sails.

Cath Update

They took Connie back about an hour ago. He got a little versed in his tube before hand and it kicked in quickly. He was carefree and zombified in no time at all!
They told us they will come with an update around 10-10:30. The procedure is supposed to last around three hours. We are waiting in a private room where he will "recover". This is our first experience with Children's Hospital and we are very impressed. From the atmosphere to the staff, it has been top-notch. I feel like writing them a letter to tell them so!

Dr. Balzer came in before they took him and reviewed the procedure and the possibilities. He "doesn't think" he'll have to do anything, based on what he saw on yesterday's echo. He said that the branch pulmonary arteries weren't visible in that study so he's not certain. He said if intervention was needed he doesn't think ballooning would work and he'd probably have to use a stent. The problem with stenting is they have to use an adult sized stent which would cause a pulmonary valve leak. I moaned about that because he's already got such a bad leak on the aortic valve. He said that he's actually got some leakage on both valves at the present time but that they are both MILD. He said that from what he saw yesterday they are MILD leaks. I wasn't going to argue with him. He's the doctor. If what he says is true, though, that means that Connie's Aortic insufficiency is not mild, not severe! Praise God. I guess He kept His promise when he told us on Easter that it was time for Connie to be healed. Slowly but surely, his heart is getting better!

We'll update more when we hear. We've also got some cute pics from this morning but I forgot to bring the cord to upload them.

Thanks for checking in.
Erin and Greg

Prayers for a Good Cath Needed

Please pray for a safe trip to Children's this morning (we are leaving in a few minutes) and that all goes well with Connie's cath today. He is first case, so around 8 or 8:30 cst is when they will get started.

Connie is on the Move

Today Connie got himself to a three point stance and up on all fours a few times without any help. He is right on the verge of taking off. He even moved one leg and one arm forward in an attempt to crawl toward something. Not to fetch a toy, rather the box of toddler wipes! He "hops" on his bottom and is especially mobile on the tile floor in the kitchen. Slippery surface = Easier to move.

Make an on-line slide show at www.OneTrueMedia.com

Tonight he "rode" on the ride on toy all by himself and actually made it move. This is a first! Granted, he could only navigate it backwards, but a feat nonetheless. I was proud of him for even balancing so well on it. He probably stayed on the thing at least 30 minutes with absolutely no help. Here's a little video. He stopped moving so much once the camera came out--typical! Oh, and please disregard the fact that it is a pink Disney Princess Ride On. It was Mary Kathleen's. My advice to new parents: Buy gender neutral "big" toys, especially if you have a girl first. No one bats an eye when a girl rides a black bike or blue scooter, but give a boy a pink ride on and you are asking for looks!

Heart Walk Reminder

Okay folks! The walk is less than a month away and we need more walkers and more donations to reach our goal! To join the Care4Conway team go here.
Hope to see you there.

Got a call from Children's today confirming next Monday and Tuesday's procedures. So, we're all set now. We'll post updates as soon as we find out anything. We were told that the cardiologists attend a 'cath conference' on Wednesdays and since his cath is Tuesday they should be able to discuss it the next day.

Update on Gerri

Precious Geraldine, the five year old girl who underwent the same surgery, with the same surgeon as Connie died early this morning. Please keep her family and friends both here and back home in the Philippines, in your prayers as they adjust to life without their sweet girl. If you'd like to send a message of condolance, you can do so by signing onto her carepage at www.carepages.com, cp name: ourpreciousgerri, message board.

Cath Scheduled

SLCH called today to set up Connie's cardiac cath. He will have pre-op testing (echo, ekg, chest x-ray and meeting with the anesthesiology team) on Monday, April 14and the cath is the first case on Tuesday, April 15th. Please say some prayers that he will handle the general anesthesia well. God sent his servant at Easter to tell us that it is time for Connie to be healed and we have faith that this diagnostic tool will show that his heart is indeed healthy. Sometimes thoughts come creeping back in. Fears that they will tell us it's time to do some sort of intervention. We pray that our faith will remain strong during this trial. Since he is the first case of the day, there is a chance he will get to come home Tuesday night. They say it all depends on how he's doing or what all they do while they are in there.

Diarrhea

Connie has had loose stools for about 6 days now. He normally has one bowel movement every other day (since we've been home from MI) and now he has been having at least three every day and they are loose. The GI doctor wanted him to come in and so we did and guess what?! His weight is up! He was 22 lbs. 15.5 oz and last week he was 22 lbs. 8 oz. Not sure how that happened, but my guess is, that even though his stooling and vomiting have increased, that the weight gain can be attributed to the increased calories from the Peptamin Jr. (new formula). It is 30 cal/oz as opposed to 20 cal/oz of breastmilk. Of course, he's only getting about 4 oz of this new stuff per day, but I guess it's already making a difference.

Anyway, the doctor said that she feels like the formula is what is causing it. Apria Healthcare is who supplies the formula (you can't find it on store shelves) and they were out of what she prescribed so they sent a substitute. It doesn't have "prebio" or fiber, apparently two things he needs. So, after waiting a week and a half to get ANYTHING, they send the WRONG THING! Luckily we got some samples that will hopefully tide us over until we get the right stuff. If the loose stools continue past Monday, she wants to send a stool sample off for a culture and possibly start adding some sort of fiber powder to his milk. Thanks for checking in. Also, please add 5 year old Gerri to your prayers. She had her double switch today at the same hospital with the same surgeon as Connie, almost 7 months to the day of his surgery. She is recovering and has a long road ahead. Their family is not from this country, so it complicates things further. Please pray for them.

Happy Easter!

We had an Easter miracle today! We met God at Assumption Church during the 10 am Mass. He came right up to us after Mass. First for a little background. . . I have been thinking about Connie coming to church on Easter for some time now. I don't know why, but it was very important to me for him to be there, for us to be there as a family, all together. We haven't been to church all together since a month before Connie's surgery last August. He's been homebound all winter, but the cardiologist said he could start going out in public now that the flu season is just about over. I guess one reason it was so important was because last Easter he was baptized and we had so many question marks about what the future would hold for him and now, one year later, he is getting back on track. He's here and that's all that matters. It feels like we've come full circle or something. Anyway, we all went to church and I was happy (then I remembered how hard it is to entertain a one year old for over an hour!).

They added extra folding chairs to the end of each pew and we were in the front row in a regular pew. Across from us, right as Mass was beginning, an older gentleman with a listening assist device came to sit alone in that one extra seat at the end of the pew. During the "peace" he reached across and shook my hand. I've never seen him before or met him and we've been attending this church for five years. After Mass was over and people began to leave, he came up to me as I was holding Connie and asked what was wrong (meaning what was wrong with Connie. I guess he could tell something wasn't *normal* because of Connie's NG tube). I answered, "His heart." I pulled his shirt down a bit so the top of his scar showed and the man very matter-of-factly said, "God spoke to me and told me that it is time for this child to be healed. He told me to lay hands on him so that he might be healed." and then the man put his hand on Connie's back and said, "In the name of Jesus Christ be healed." and then he walked away. It's an Easter Miracle!

Lord, thank you for sending your servant to us today in order that you might heal our precious boy. We believe that you have the power to heal anything, no matter how big or how serious. We thank you for getting Connie to this point. We know that it is because of you that he is alive and getting better everyday and we look forward to watching him continue to grow and lead a happy, healthy life. In Jesus' name we pray, Amen.

Cardiology Update

Happy St. Patrick's Day to ya! Our little Irish prince went to see his cardiologist this morning. His last check up was exactly three months ago. At today's appointment they did his vitals and we recapped what meds he's on, what he's doing activity-wise and what kind of symptoms we are seeing at home. He's doing great. Blood pressure was a little elevated but the nurse said it was fine. His weight is 22 pounds, 8.8 ounces. Then they did his echo. It took three of us to keep him entertained. It seems as though our little TV loving boy wasn't the least bit interested in watching the Mr. Rogers episode playing on the wall. He wanted to grab and explore the equipment. His hands were full of ultrasound gel--yuck! One tech kept running out to get new toys (the noisier the better) for him to play with. The thing that worked best was my cell phone. He also enjoyed the bubbles and the light wand. The news from the echo was that the pressure in the right ventricle is about the same as it was after the surgery, about 50%. Normal pressure is 25%. When the pressure gets to be 2/3 (66%) of what it is in the left ventricle, then it is time to intervene (surgically or otherwise). Thankfully, we are not at that point and don't seem like we're heading to that point. Also, his left ventricle function is still great. This means that his ventricle is handling the severe leak in his aortic valve very well for now. Dr. Bromberg was very encouraged by this and said he was "a lot more hopeful about the prognosis" than he was after our last visit in December. The leak is not any better (we didn't expect it would be) but it's not any worse and he's asymptomatic for now so that is the best news. He said he can see him possibly making it five years before needing a new valve and he's really hoping that Dr. Bove could just repair that valve rather than replacing it. What wasn't very clear on the echo were the branch pulmonary arteries. They know there is some stenosis (which is why he has high pressures in the right ventricle), based on the cath he had in Michigan last September. The question is, how much stenosis (i.e. blockage/narrowing)? To find this out, they will do another cardiac catheterization next month. It will be done at Children's in St. Louis by Dr. Balzer. Dr. Bromberg will call him and tell him about Connie and specifically what we are looking for and some background on what's happened so far. This cath should let them see what the echo can't and get some more measurements on the pressures in the ventricles. If necessary, they will balloon open some of the narrowing, but Dr. Bromberg doesn't even think that would be necessary. He says that if we are the first case of the day, we may get to be outpatient. If he's not the first case, or if they have to do anything while they are in there, he will stay admitted overnight. Even though I had a good idea this was coming I am already dreading it. All those feelings seem to be rushing back and the thoughts of, "Will they find something and want to do surgery?" Praise God that as far as we know at this time, his heart is doing well and is handling the switch okay. His medications were changed a bit. We are going to try him completely off lasix. That means he is on NO MORE DIURETICS!! He's been on them since he was one month old. This is great news!! I'm glad because hopefully he can stay off them--at least until we're done potty training down the road. I can't imagine a kid learning to potty train while on diuretics! His Enalapril (blood pressure med) has been raised from 1.5 mL 2X/day to 2 mL 2X/day. We are bumping him up slowly until he gets to the max dose for his age/size. Dr. says that the more the better. We want to help that left ventricle as much as possible to maintain good function from the leak.

So, now we wait to hear our date from Children's on when the cath will be. We'll let you know when we find out.

Fundraiser

Carol has organized another fundraiser to help offset the expenses for Connie's medicine and office visit copays, etc. Here's the info:

Care4Conway Candle Fundraiser
Now – thru March 30th ALL Jar Candles $18

Trumpet Jar Candle
burns 35-40 hours For scent & color choices go to:
www.partylite.biz/daretobelieve
Available Scents:
Agave Nectar
Spiced Vanilla
Raspberry & Thyme
Ginger Lemon Meringue Pie
Coconut Milk Chocolate

Barrel Jar Candle
burns 55-60 hours burns 55-60 hours
Available Scents:
Crème Caramel
Tonka Bean
Ginger Pumpkin
Strawberry Rhubarb
Herbal Mint


Hurricane Jar Candle
burns 70-80 hours

Available Scents:
French Vanilla
Cherry Orchard
Cinnamon Sticks
Mulberry
Wild Fern
Seaside Mist


Box of 6 Votive candles
$7.50

Available Scents:
White (unscented)
Coconut Cove
White Gardenia Truffle
French Vanilla
Spiced Vanilla
Tonka Bean
Ginger Lemon Meringue Pie
Crème Caramel
Yuzu & Lime
Mango Tangerine
Cherry & Papaya
Pineapple & Pomegranate
Ginger Pumpkin
Nectartini
Bird of Paradise
Strawbery/Rhubarb
Orchid & Pink Peppercorn
Raspberry Thyme
Blackberry Honey
Fig & Olive Grove
Cherry Orchard
Exotic Spice
Cinnamon Sticks
Mulberry
Coconut Milk Chocolate
Honeydew
Herbal Mint
Bayberry
Wild Fern
Agave Nectar
Seaside Mist
Bella Luna
Teakwood & Cardamom
Sun-Kissed Cotton
Mandarin Basil
New Leaf & Aloe
Unwind
Relax
Revitalize
Goji Berry Chocolate
Acai Berry Mist
Elderflower Springs
Hinoki Steam
For scent & color choices go to:
www.partylite.biz/daretobelieve

Orders must be received via email, phone, or mail by March 30th

To order candles:

1)Email order information to Care4Conway@gmail.com

2) Call Theresa Charles at (636) 795 2864
(636) 724 1997

Payment for candles:

Total = # of jar candles x 18.00 + # of boxes of votives x 7.50
(Shipping, if needed, will be provided at no cost to you)

1)Make check payable to Theresa Charles
Mail to Carol Stadler, 1535 Country Bend Drive, St. Charles, MO 63303

2)Pay via Visa/MasterCard/American Express/Discover via Care4Conway.com website,
click on donate button , enter in the total of your order.


Sell to your friends and family, receive a bonus for your help:

1)Sell 10 dozen (20 boxes) of votives – receive one dozen votives FREE!

2)Sell 10 jar candles – receive on jar candle FREE!

GI Follow Up

Conway had a follow-up appt. with Dr. Brady yesterday and his weight is right on the curve where it should be. She's happy about that! I shared with her the screening results and she was also thrilled. I asked about "The Feeding Team" at Cardinal Glennon which is composed of a psychologist, dietician and OT and she said that for his age, she recommends we see a speech path at Children's that she's worked with in the past. So, we're waiting to hear back on what that might entail. The best news (for me anyway) was that we are going to start slowly introducing him to Peptamin Jr. formula and weaning off the breastmilk. That means there is an end in sight to the pumping! We'll start with his overnight feeding making it 1/4 Peptamin and 3/4 breastmilk and if he tolerates it, go with 1/2 and 1/2 for a while and keep bumping up the peptamin and decreasing the breastmilk. Our OT said that we also might see him "hungrier" or more willing to eat foods once he is all the way on Peptamin because Dr. Brady has orders for him to get 32 oz. per day (it is higher calories than breastmilk so he'll get less volume) whereas now he's getting around 37 oz/day. I also asked about weaning off the prevacid and reglan and she said that once he is eating food and we can pull the tube we will wean him off the meds. So, no time soon! He had OT today and since he did better than expected, we've upped his "homework" assignments. He now has to take 6 ML of babyfood 3X/day and continue offering the milk in a cup or peptamin JR in a cup. Sorry for all the details, just wanted to give you an idea of what he's doing these days! We go back to see her in mid-June.

Developmental Screening Results

Connie was screened today by the Parents as Teachers parent educator. It was a 2nd Edition "Ages and Stages Questionnaire"--12 month/1 year ASQ Information Summary. He got 10 pts for each YES, 5 for Sometimes, and 0 for NO. There were 6 questions/skills in each section. The sections were Communication, Gross Motor, Fine Motor, Problem Solving and Personal-social.

Communication:
1) Play a nursery game such as so big, clap, etc--YES
2) Follow a simple command without gesture (he did "give it to me")--YES
3)Say a word other than Mama or Dada--NO
4)Look at objects when you say "where is the . . ."--YES
5)Shake head when he means no or yes--YES

Gross Motor:
1)Bend down to pick up a toy and stand back up--NO (he does this with help though)
2)Lower himself while holding on without flopping down or falling--YES
3)Walk along furniture holding on with only one hand--NO
4)If you hold his hands will he take several steps without tripping or falling?--NO
5)Take several steps forward holding on with only one hand?--NO
6)Stand in the middle of floor by self and take several steps forward?--NO

Fine Motor:
1)Pick up a string with first finger and thumb?--YES
2)Pick up a cheerio or crumb with tips of thumb and finger?--YES
3)Put a small toy down without dropping it and then take hand off toy?--YES
4)Use pincer grasp without resting his arm or hand on the table?--YES
5)Throw a ball with overhand motion--NO (he does roll the ball back)
6)Help turn pages of a book?--YES

Problem Solving:
1)Clap two toys together?--YES
2)Poke or try to get something that is inside a clear bottle--YES
3)Find a toy that you've hidden completely)--YES
4)Copy you after you put a toy in a bowl or box?--YES
5)Drop small toys, one after the other, into a container?--YES
6)Scribble on paper--SOMETIMES (he went back and forth but was holding it wrong so it didn't make marks)

Personal-Social:
1)Offer toy to you when you ask?-YES
2)Push arms through sleeves once arm is started in hole?-YES
3)Let go of a toy when giving it to you?-YES
4)Lift foot for shoe, sock or pant leg?--NO (he never wears shoes!)
5)roll a ball back to you?-YES
6)Hug a stuffed animal or doll?--YES

Overall Scores:
Communication: 50/60, norm is 15.8 to 60
Gross Motor: 10/60, norm is 18-60
Fine Motor: 50/60, norm is 28.4-60
Problem Solving: 55/60, norm is 25.2-60
Personal Social: 50/60, norm is 20.1-60

AND this was on the one year old (12 month) level. I'm just ecstatic that he didn't have to be scored on a younger form--like the 8 month old or 10 month old forms, let alone do this well on this form!

After the seizure and all the questions we had about him neurologically after such a long time on bypass, this is VERY reassuring to me!

2 other cute things he did recently include trying to comb his hair with his comb (on command even) and taking turns playing with two objects with Ms. Deb during PT on Friday. He would bang them together and then hand them to her and then she'd do the same and hand them back. This went on several times back and forth and was very cute. His receptive language is definitely right on! Yay Connie!

One Year Check-Up

Conway went to Dr. Davis this morning for his 12 month check up and shots. He got four shots and was very unhappy about that. He made it through and settled down and then as soon as I laid him back down to dress him so we could leave and go to the dentist, he must have thought I was laying him back down and he was getting more shots because he started crying hysterically which makes him cough and gag and of course, vomit the entire feeding he had just finished! The tube came up and all. He was a mess. The nurse helped me clean the exam table so I could clean him up and dress him. It was awful! Dr. Davis is happy with his growth and developmental progress. He is in the 50th %ile for weight and head size and the 75th %ile for height. He'll go back somewhere between 15-18 months unless he gets sick before then.

Then it was on to the dentist. The snow had started by this time and getting both kids to the car, buckled in and stroller put away was a chore. I guess I'm out of practice since we really haven't gone anywhere all together since last summer! We made it to the dentist and were watching the local news in the waiting room and seeing how there were inches of snow in most parts of the city and county, but right around us the roads were great. This lasted until we got home and then it started a lot more. Thank God that the roads were clear and we made it everywhere safely. The dentist agreed that it was good to get him in to have a look since he has all that reflux and we talked about down the road possibly putting a protective layer (crowns) over his teeth to protect them from all the acid. He counted his teeth and took a look. Mookie had a turn too and did great. She let the doctor have a look-see and count her teeth. He said she is delayed in getting her back ones in(duh, she didn't get her first tooth until almost a year old!) but they are in good shape. She goes back in two weeks for a cleaning.

Thanks for looking in!

Conway is ONE!

Connie is officially one on March 3rd, but we celebrated his birthday on the 2nd. It was a beautiful day weather-wise and all around. Friends and family came from near and far to celebrate this miracle child. He was awake from 10:45am until around 5:30 pm. We tried to let him nap but I guess he was too excited for his big day. He was such a trooper. He let everyone hold him and he was a love bug all day. He sat on the floor and played while I opened the presents and didn't throw up one time on his birthday clothes! Finally after everyone was gone, he slept for about an hour and a half and then went to bed for the night at about 8:30.

I'm falling asleep as I post this, but I knew everyone would be anxious to see his birthday pics.

Here's a movie I made outlining his first year of life. What a year it has been!

Make photo slide shows at www.OneTrueMedia.com

Heart Walk 2008--Get Involved!

The 2008 Heart Walk is coming up on May 3rd. Mark your calendars now and plan to join us at Frontier Park in St. Charles as a part of Team Care4Conway. We are so excited to be able to have this opportunity to be a part of something tangible to help raise awareness and funds for heart defects research.

Click here for info on the walk and you can register to walk right there. Be sure to put that you are registering to join the team "Care4Conway" (no spaces). If you can't walk, you can make an online donation. You would go to "General Team Donation" just to donate or "Team Page" to join and walk.
If you have any questions, please email Erin at ekbeckemeier@yahoo.com! Our goal is 20 participants, but I'm sure we can get a lot more than that. Depending on how many we have, we may get special Care4Conway t-shirts printed up to wear that day.

Standing Movie

Photo and video editing at www.OneTrueMedia.com

Steady as a Rock

Conway got weighed this morning and is up another three ounces! Yay! I was starting to stress out a little since he was hovering at that 22 lb mark for so long and debating with myself over whether or not to fortify the daytime feeds to increase his calories or keep his daytime feeds at 180 ml but increase his night time feed back up another 40 or 80 ml. My stress was relieved today when the nurse told me that she calls and leaves a message every week for the GI doctor telling her the weight and if she was wanting us to adjust his feeds/increase his calories, she'd call us or have us come in for an appt. to discuss. I just feel like the pressure is off me now and I can let the doctors decide!

He needs to get to sleep for his afternoon nap (so he's rested for his PT this afternoon) but he is in there just talking away. I think he's experimenting with language a bit and likes to hear himself so I'm not upset in the least. It is actually reassuring that he is doing this. The other day Greg was changing his diaper (yes, he does occasionally do this:) and Connie was rolling all over and hard to wrangle and get the new diaper on. Greg looked at me as if to say, "I wish he would sit still" but I quickly reminded him that we ought to be incredibly thankful that he's finally moving a bit more and wants to get around and explore.

We think he's getting closer to crawling. When positioned, he'll stay on all fours and hold his head up for a few seconds. He's just not the type of kid that is highly motivated to move. He'll reach a time or two for an object that is a ways away from him and if he doesn't get it, he doesn't fret. I guess what I'm trying to say is he gives up easily! Oh well. I guess we just haven't found the right toy to motivate him with yet!

New Toothbrush

Connie got his first "toothbrush" today. It's a little rubber brush that fits onto the end of my finger and it came with some fluoride-free toothpaste. I hesitated to get it because I was pretty skeptical about his willingness to allow me to brush his teeth. Most normal kids aren't too keen about getting their teeth brushed at this age, let alone a kid with the oral aversion issues he's faced. To my surprise, he loved it! The first taste of the toothpaste caught him off guard, you could tell, but he quickly began to enjoy the ticklish feeling he got from me rubbing his teeth and gums. This kid surprises me every day.

He's advancing toward the goal of all feeds being during the day. He now gets 180 mL (six ounces) four times per day and his overnight feeding is 370 mL. We are fortifying the overnight feed to 24 calories/ounce using Pregestimil (a predigested formula added to the breastmilk). His weight has been steadily hovering around the 22 pound mark so we'll see if adding the fortifier to the daytime feeds is on the horizon when the dietician comes this Friday.

Happy, Happy, Happy!

Happy Valentine's Day, Happy Heart Day, Happy CHD Day and Happy Birthday, Grandma George!

Connie got his first haircut yesterday (thanks Cousin Laurie!). Now he looks like a little boy and not a baby anymore :(

Yesterday I delivered the valentine's that Celeste's class made to the Cardiac Intensive Care Unit at Children's Hospital. Originally I was supposed to hand deliver them to each patient but as I was entering the unit, a patient was coding, getting put on ECMO (bypass)and the whole staff was in "emergency mode" and they closed the unit to all visitors. I was disappointed about not getting to see the reactions of the kids as they got their valentines, but even more so, it was very sad to see the reality of this disease. That could be Conway someday. It was someone else's child today. Thank God for the miracles who are beating CHD's. There are many who are not winning or who have lost the battle.

Here are a couple of recent pics. . .

More CHD Awareness

In honor of CHD Awareness Week, I feel it is my duty to try to nudge people to do whatever they can to raise awareness of CHD's. Who better to make something "big" in the media than OPRAH! If you feel so inclined, click this link and then request that she do a show about Congenital Heart Defects. Maybe if we flood her producers with requests, she'll consider it. If a celebrity or two got on board, funding would increase and lives would be saved.

CHD Awareness Kickoff Week!

Today is the start of CHD Awareness Week. I am reading a book to Celeste's first grade class and we are making valentine/get well cards to take to the patients recovering from heart surgery at Cardinal Glennon and Children's. The grade is also collecting toys, books and other items to give to the kiddos.

Please tell someone you meet today Connie's story.

I read a poem last night on John's carepage that was written for him but rings true for most CHD families.
You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"


I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.


What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.
---Stephanie Hustead

Connie had his appointment yesterday with the nurse practitioner at Dr. Brady's office. They upped his overnight calories to 24 cal due to a small percentage of weight gain in the past two weeks. We go back in a month. They are still happy with how he doesn't mind the tube in his nose and with the amount of vomiting we're seeing. Yesterday was kind of weird because he kept throwing up after feedings but he never threw up any milk, just phlegm. The phlegm was bright yellow, too. We couldn't figure out why it would be that color. If he has that again today I'll call the doctor to see what she says.

Update on Big Sis

Connie's big sister, 3 year-old, Mary Kathleen, had a follow-up today with the dermatologist to check her "birthmark" and decide whether or not a biopsy would be done. Since there has been no change in the last two months, Dr. Sanchez feels comfortable waiting and checking it again in a year. Of course, we'll go in sooner if something changes. She feels like it is a very unusual birthmark, kind of like a mole on a mole. She thinks that the sebacious (oil) glands that are normally under the skin are for some reason on top of the mole. If left alone, we'll probably see some changes in it when she enters puberty. She said right now she doesn't feel a biopsy is medically necessary based on what characteristics she sees and that it would be traumatic. At an older age, when the procedure can be explained to her, we may do it then just to find out what it is since it is so unusual. Thank you for your prayers!

Connie was weighed again today and is up another 1.5 oz. He's 22 pounds even now--such a big boy! Tomorrow he goes to Dr. Brady (GI doc) for a follow-up. I'll update again after the appointment.

Please say some prayers for another heart family we know, the James'. Their daughter, Bailey, who I've mentioned before, is getting ready for her big Double Switch surgery like Connie had. It is set for next week. She has had several operations already to get her heart ready for the big one. They are hopeful for her to finally get her big repair and nervous at the same time. Please pray for safe travels and a quick recovery for Bailey and her family.