Cardiology Appointment Tomorrow

I just realized how very long it has been since I've posted an update on here.  I guess posting so many quickie updates on Facebook really makes this almost seem redundant.  That said, I'll try to recap the past few months before asking for prayers for Connie's upcoming cardiology visit.

Waiting for a turn to use the carving knife

School is going well for all the kids.  After Christmas, Connie seemed to have some issues with getting back into routines and maintaining focus, but that seems to have improved slightly.  It is hard when every week has either or snow day, early release due to snow, holiday or faculty meeting scheduled. MK earned straight A's and won the 3rd grade spelling bee.  She finished in 2nd place in the school-wide bee.  I was told by several colleagues and administrators that her presence was really quite impressive, especially for her age.  Confidence is something she has really had to work on, so this was an amazing feat for her.  At the end of February, we will once again have the opportunity for parent teacher conferences, but in these conferences, the meeting not only includes the student, but is led by the student.  This will be the first time Conway will participate in such a way.  It will be interesting to see and hear his take on his learning and how he is doing at school. Speaking of snow, here they are enjoying the first snow day of the season.  Snow has got to be such a frequent occurrence this year, they don't even ask to go play in it anymore :)

thrill seekers!

Karsten happily playing in snow

Connie recently started swimming lessons with D.A.S.A. He gets 1:1 lessons from OT students at Wash U. with a physical therapist supervising.  We're hoping it will be good to strengthen his core muscles, in a fun way.

Conway joined the cub scouts this past fall and is a Tiger Cub.  He will soon move up to the rank of Wolf.  He enjoys doing things with his den and has participated in a lot of events already, such as Pinewood Derby, family camping,  seeing a professional hockey game, raking and composting for the city, and much more.  One thing I love about his scouting experience is the religious aspect of it.  His den and pack take every opportunity to enhance the program for the boys by giving them the chance to earn religious awards and learn as much as they can about saints and their faith. 

Connie and Daddy at the Science Center with scouts

Working together on Pinewood Derby car

A new heart parent support group has merged with our existing one here in StL.  It is called Mended Little Hearts.  I have been attending the meetings and Connie and some of his camp buddies have come along to a few.  We're told that the parents of young babies, the ones in the throws of heart disease, really gain hope from seeing the older kids doing so well.  During Congenital Heart Defect Awareness Week, his school had a "wear red for awareness" day.  Connie was asked to read facts and figures about congenital heart disease over the school's PA system, and money raised during upcoming Mission Day will go to support research grants given by the Children's Heart Foundation. 

Sporting his red for Heart Disease Awareness Day at school

MK is playing volleyball and tennis right now.  Karsten started gymnastics through the parks and rec department.  They are all having a good time and learning a lot.  Piano fell by the wayside, unfortunately.  It was just too hard to make the drive back out to O'Fallon every week in traffic, especially considering the kids weren't practicing. Celeste is playing club volleyball and busy with scouts and band.


Baby Frances is growing like a weed.  She is 10 months of pure joy.  Literally the happiest, most content baby ever known (to us, anyway).  She is pulling up now and it won't be long before she is out climbing on the swingset with the rest of the kids (if this winter ever ends!)!

Crazy driver!

10 months :)

Now that you are somewhat up to speed, we are asking for prayers for Conway as tomorrow is his check up with the cardiologist.  The plan is to do an echo, pacemaker check, etc.-a full work up.  He was not due to go back in until late March, but in November the cost of his heart medicine went from $20/month to $687/month so his doctor wanted to see if he could do without it.  He said he would do a 2 month trial off of the drug and then look him over to see if he could stay off of it or need to be put back on it.  We are actually feeling like a check up will help to reassure us because the last three days he has put himself to bed at least 1/2 hour early and one day even took a three hour nap.  Unusually tired is never a good sign for a heart kid!

1st Grade!

 Look who photobombed this pic. Silly Karsten!

 No more peter pan collar for my big girl this year. She's growing up so fast! PE shoes are a size 5.5 Women's!

Today is the first day of 1st Grade for our boy!  Mookie is starting 3rd this year and is so thrilled to have the teacher she wanted and be in class with three of her best friends.  Conway is happy that his best friend is in his class, but not very excited about the start of school because, "There's no rest time in first grade!" I told him I'd have him come down and explain to my 4 yr old class the benefits of it since none of them seem to want to rest :)  I have met with his new teachers and nurse and they are all up to speed with his current health status. 

We still have not gotten the results of the holter monitor and I have been so busy with the move and getting settled here that I have not even gotten his disposable cameras from Camp Rhythm developed yet! I am behind and the school year is just beginning. This is not a good sign!  He loved camp again and even briefly made an appearance in a news story about it.

We are going to a meeting tonight to learn more about Cub Scouts and see if that is an activity that would interest Connie.  I think it would be good for him since it is not necessarily athletic and will give him something to do besides watch TV/play Xbox.  He is so hard to get up and get moving and it is hard to tell if it is just the way he is or if there is a reason for it.  Unless you take him to a bowling alley or putt putt course/driving range, he doesn't want to get off the couch (except to jump on/off it and wrestle on it with Karsten).  He is still taking piano lessons and seems to enjoy them.  He says he wants to play tennis like Mookie, but I don't think he is physically ready yet.  His coordination and strength are still pretty immature.

He continued with his occupational therapy this summer.  His therapist doesn't travel this far east so they were going to assign a new therapist.  We thought it might be time with the start of school to give him a little break and see how he adjusts to a new classroom and schedule before adding more to his plate.  He has been napping most afternoons if we go anywhere in the car and is probably going to be tired after a full day of school.

And not to leave out Karsten, he started preschool last Thursday and likes it. he cried briefly the second day, but seems to adjust pretty easily to new situations.  

Baby Frances is the happiest baby ever and is our joy.  She is beginning to roll over and screech like a pterodactyl. We just can't get enough of her!

We just had some photos taken and this was the best we could get of everyone!

General Update

No earth shattering news in this update. It is more of a post for our own records but you are welcome to read and stay in the loop.

Connie has been generally well this summer but I have had a nagging feeling he's a bit off for about the past month. He is sleeping more, eating less, whining more, playing less... just not himself. We have seen this in the past when his heart is out of rhythm so we called the cardiologist to see if he'd take a look. I know when Greg notices a difference it isn't just my imagination. We went in last Thursday for a pacer interrogation, chest x-ray and exam. His heart checked out perfectly. Dr. Bromberg understood our concerns and patiently explained that Connie is very stable right now, as hard as it is to believe, and we should expect him to remain that way. Seems tough when you are so connected to the rest of the "heart world" via social media and there are a lot of kiddos struggling right now. He urged us to see the pediatrician for some lab work and another exam to test for a possible viral infection of some sort. He ended up getting a very bad reaction (again) to a mosquito bite Thursday afternoon so the doctor wanted to take a look at him anyway. His left foot and leg swelled so big he couldn't put a shoe on or walk at all on Friday. That little bite earned him 10 days of antibiotics and 5 days of steroids. We got the lab results yesterday and they were all normal. They even checked a BNP at Dr. Bromberg's request and it was the lowest it has ever been recorded in him (18.6)! BNP is the test that measures heart failure. When he needed his mitral valve repaired it was over 7000 and after his last surgery, I believe the lowest it got was around 200-400. So this definitely seems to be a big improvement. His heart size on x-ray was also improved compared to the April 2012 film. It is now considered normal size.  I will be posting about Camp Rhythm very soon as it begins this Wednesday. He is looking forward to it. We are moving on Thursday so there hasn't been much time this summer to post pics lately. We have a few cute ones from recent boat rides on the Mississippi and Illinois Rivers. He loves swimming and tubing, but I think his favorite activity out there is napping in the cabin as the boat sways. 

**Updated 7/30/13: Dr. Bromberg emailed after getting the lab results from Dr. Davis and says he wants Connie to wear a holter monitor and get out a play quite a bit with the monitor on.  When he was interrogating the device in his office last week, he noticed that the unit was picking up "artifact" any time Connie would stretch or move his arms.  It could be that when he is running or very active that the pacemaker is sensing extra beats and getting out of synchrony.  Generally they would test this in the office using a treadmill but Connie is too small for theirs so we will wear a holter and take him to the driving range, outside to ride scooters, to the park and anything else we can find for him to enjoy that is active.  So, we will do this test next week sometime and share the results when we get them.  This should not be a big deal, just some tweaking might be necessary.  He will still be able to have both ventricles paced, but may go back to the old mode he was in prior to the generator replacement last August.

Blessing in Disguise

This post refers to the pacemaker lead issue. I'll try to keep it very simple. While I have a rather firm grasp on most things heart related, this is one area where I still feel very inadequate and out of my league. Electrophysiologists must be about the smartest people on earth.

We suspected Connie had a damaged atrial lead following his July 1st pacemaker
transmission.  This past weekend we were at a birthday party and before anyone saw the warning sign, Connie had touched a plasma tube. They can cause electrical interference and make it so implanted devices get reset to factory settings or fail to work properly. Conway instantly received a shock down his arm (likely from his metal medic alert bracelet). He cried and was pretty shaken up for a few minutes. We notified his doctor who told us to check his heart rate and go ahead and send another transmission. He let me know Connie was okay, but the pacer was still acting up and he was going to have a Medtronic field rep take a look. They decided that there was an issue with his settings and so yesterday we went in and had it reprogrammed. Basically Connie has been rebooted and our doctor feels confident that the trouble he was seeing was indeed this sensing issue and not a fractured lead!!! He said to go on our way and we'll recheck it in three months. We are thrilled that it seems the threat of possible O.R. time in the forseeable future is now gone! Our brilliant doctor may not have been able to make this discovery without this unfortunate incident so we feel this has been a silver lining of sorts and a blessing in disguise.

As always, thanks for keeping up with us and keeping little man in your prayers. We have an AWESOME God who is always by our side.

Multiple Updates

Conway is having a fun summer.  He loves swimming and is quite the little fish.  Poor kid is allergic to most sunscreen but we have found some for sensitive skin that he does well with.  He has become addicted to watching Woody Woodpecker on Netflix.  It is funny to see him enjoy some of the same characters I remember from my childhood.  He attended a three day golf camp earlier this summer and liked it a lot.  A fellow heart mama had some youth clubs she wasn't using anymore and she gave them to him so now he's got something to take out to the driving range or pitch and putt course.   This month he is going to a gymnastics camp for a couple of days and then to the highly anticipated heart camp, Camp Rhythm.  He adores Baby Frances and of all the kids, he is the most loving and gives her the most attention.  And she just lights up when he talks to her.  The only problem is he sometimes needs reminders about being gentle and giving her a little space.  He especially loves to tickle her... when she's eating or sleeping!  He's been reading to her some and she just stares at him and laughs intermittently.  He had a check up at the dentist and no cavities this time!  He was very brave about the x-ray, too.  I think it is so scary for him because it causes a flare up of  PTSD from his early months in patient and all the things that were forced into his mouth. 

We spent a night in Kansas City at the Great Wolf Lodge, an indoor waterpark.  We figured it was ideal considering we have the new baby who shouldn't be out in the sun for long periods and for Connie who tires more easily swimming and might need to nap.  He was the first one "done" swimming both days, but he did very well climbing three flights of stairs numerous times to do the water slides. 

We also enjoyed a recent trip to the Magic House courtesy of the Missouri chapter of the Congenital Heart Foundation.  The heart families had the whole place to ourselves!  Connie loved the vacuum tubes the most.

Yesterday marked three months since his last cardiology check up and pacer interrogation.  We typically have the pacemaker evaluated quarterly via phone transmission so I sent in a carelink report.  The nurse practitioner called to tell me "everything looked good, but..." My heart climbed into my throat and all I could think of was, "Oh, no! We just went through surgery last summer and now this.  I don't want to see him miss out on anything or have anything stand in the way of a smooth start to the school year." She said that this time there is some "noise" or impedance on his atrial lead meaning it is damaged in some way.  It could be from an injury such as a fall, rough housing or repetitive movement, but it is more likely that it is just that the insulation surrounding the wire is wearing down and therefore the lead is less effective and starting to fail.  In Connie's case we are lucky because he does have an underlying rhythm of his own and if this were to happen, he shouldn't just collapse.  Theoretically, his pacer should switch modes and go into atrial sensing, ventricle pacing instead of pacing the atrium and both ventricles, which is what he has currently.  We might notice him having a fixed heart rate around 70, causing him to be rather sluggish and tired.  Dr. Bromberg said that even if the lead did completely fail, we might be able to put off replacing it surgically until he is older, as he has quite a bit of scar tissue on his heart and finding a good place on the atrium to attach a new lead would be a tough job. Conversely, placing a lead venously would compromise his vein, which, as the doctor put it, he will need for another 70-80 years. 

So, we will up our vigilance just a bit while trying to carry on as normally as possible.  I asked about sending reports more frequently or checking his heart rate nightly and was told to not go crazy and just keep doing what we've been doing, which is letting him live like a pretty regular kid.  It is a reminder, though, that he'll never be cured and just when we get out of the routine of being overprotective it seems something comes along that thrusts us back into the reality that he has a pretty messed up heart.  If you would pray that this newest discovery maintains its "let's just keep an eye on this" status, or better yet, clears up by the next transmission, we would really be grateful. 

Last day

Today was the last day of school for Conway and Mary Kathleen.
It was a half day. On this day there is a closing ceremony and the children are called by name to receive awards related to their demonstration throughout the year of their understanding of the goals and criteria of a sacred heart education. Connie's award was for consistently demonstrating enthusiasm for learning. We can hardly believe that 10 months ago our boy had just had open heart surgery and we questioned whether or not he was really ready academically, physically and emotionally for the primary (kindergarten)year.
Here he is today 10 pounds heavier, 4 inches taller and READING! He just brought home a reading end of unit test with an 89%. But get this... it was a FIRST grade, unit two test! We are so thankful for the education he is receiving and are so proud of all that he has accomplished. He really is a walking miracle and a testament to the power of prayer and perseverance.

Mary Kathleen's First Communion

Mookie received her First Holy Communion on April 13th. This was a day she had been looking forward to for years. I remember when she was just a toddler and she'd smell my breath after communion and ask when she was going to be old enough to get it herself. I am confident that she was prepared and fully understood what she was partaking in. Her school does such a wonderful job with sacramental preparation. One thing that made it special was that it was in the Shrine of St. Philippine Duchesne. She also had a special part in the mass. She and some classmates led the congregation in singing the responsorial psalm, "Taste and See", and you could really hear her singing out. The children each processed in with either materials to dress the altar themselves or with wheat, etc. Another really fun thing was that most of the songs chosen for the mass were songs by artists like Chris Tomlin and are played on our local Christian radio station so our family was very familiar with them and MK had a lot of fun singing them. Here are some pics from the special day. Frances' first mass MK with her 2nd class teachers MK with her best friend, Naomi MK with Fr. Sean Martin and Sr. Maureen Glavin (celebrant and Head of School)

Frances Erin Beckemeier is here!

This post is about a week late, but we've had a busy week, as is to be expected when you have a big family! Not only did we have Karsten's birthday, we also had Frances' arrival and then this weekend was Mary Kathleen's first communion. Frances arrived at 5:19 pm on Sunday, April 7th. She weighed 9 lbs 2 oz and was 20.5 inches long. She came out crying and immediately sucking her fingers. She has been a very good baby. I just can't get over how petite and dainty she looks. All the 3-6 mos clothes we bought thinking she'd be almost 11 lbs aren't going to fit her for awhile! We got the call to head into the hospital at about 7am. Labor was started with Cytotec at 9:30 am and contractions began about an hour later. I got to spend some time in the new L & D bathtub and shower. It was amazing how I felt NO contractions while I was in the tub. I got out because I actually thought they had stopped. Then I realized they had not :( Later in the afternoon I was offered an epidural and accepted. However, the epi did nothing other than make my toes a little tingly. I still felt everything. Finally around 4:30 the anesthesia supervisor came in and had to take out the first one and start a second epi. Just about the time it started to kick in, it was time to push. She even made the comment that it wasn't the first epi she'd had to redo that day. The nurse called the doctor and she arrived a short time later. Frances practically slipped out as I was moving down on the bed to get ready to push. On the next contraction she was delivered! One nurse said something about what a good looking boy we had and I got a little freaked out! Then she and the doctor confirmed she was indeed a girl. Phew! Frances was placed on my tummy and had apgar's of 8 and 9. The kids came up for a visit before heading home to get ready for bed. I couldn't get over how excited Conway was to have a new baby sister and to hold her. Grandma and Grandpa George and Grandma Marybelle were the first visitors to see her. The next day she had her hospital photo shoot and her echocardiogram. Conway's cardiologist read her echo and confirmed that her heart is normal. The pediatrician had heard a murmur on the first day of life, but not on the second day, so that was another reassurance for us. Frances wore the same yellow dress home from the hospital that I wore home in 1978. It was a gift from my Grandma O'Leary's friend, Fran Overman. Fran also happened to be a graduate of the school where Connie and Mookie attend and where I work! We've been home six days now and things are going well. She is a very good girl and the noisy house she inhabits doesn't seem to bother her a bit! Thank you for your prayers! I'll post about MK's First Communion soon.

No Joke!

Although today is April Fool's Day, this post is not a joke. It is all true, even though it seems almost unthinkable! Connie had his check up with his cardiologist today. It was a routine visit and six months from the last. He had the works including an echo, pacemaker check and all the regular things they do during an office visit. First bit of news is that Conway is in the 75th percentile for height and weight for his age. Our small fry is growing by leaps and bounds-almost four inches since his surgery last August. Dr. Bromberg was very impressed by his growth (49 lbs and 46.5 inches) and called him a lean, mean machine. He said he looked like a power forward! We then chatted for a moment about Michigan's win yesterday and berth into the Final Four. Go Blue! Connie gave Dr. Bromberg a gift since Saturday was National Doctor's Day. He got a t-shirt that has a heart with a beat in the middle of it and underneath the heart it reads, "Got Rhythm?" (similar to the got milk? ad campaign). He loved it and said he thinks it will be perfect to wear under his scrubs when he does ablations :) Pacemaker checked out fine, showing 3-4 years of battery life left on it and an underlying rhythm in the 30 bpm range. During his echo he requested to watch Calliou on the TV so he did. He is always so cooperative and pleasant while the techs painstakingly search around for requested pictures trying to figure out his complex anatomy. Dr. Bromberg couldn't get the file to transfer from the ultrasound machine to his computer so he came in the room to review it and commented that he'll study it further later when he isn't distracted, but at first glance he looks great. Dr. Bromberg spent some more time with sharing how pleased he was at how everything is going. He mentioned to the echo tech that the mitral valve surgery in 2009 helped him a great deal and that this most recent surgery seems to have gotten him exactly where he needs to be. He is even considering stopping the Enalapril, which would mean that for the first time since Conway was 4 weeks old, he would not have to take a daily heart medication! He also says he can't justify bringing us back in for more testing for a year... A YEAR! The longest Conway has ever gone between cardiology visits is six months (just this past six months, never could make it that long before!). We will still dial in the pacemaker checks every 3 months, but unless we have concerns, there is no need to echo him or listen to him before next spring. I think Connie is a little disappointed, given how close he is to everyone in that office. He's been there so often he actually looks forward to going. He's kind of a little star in their book considering how sick he was and how far he has come. To be honest, I don't mind going frequently as it gives us a great deal of reassurance. However, I realize that a part of healing is moving on from the constant monitoring and living more like a normal kid... one that doesn't have to spend hours and hours in doctors' offices. So, we will try to embrace and enjoy this new path we are on for as long as we are on it. On another positive note, Connie just received his third quarter report card, reflecting a boy that is on target in all areas except PE and handwriting. He just started working with an OT, Mrs. Debbie, who is quite impressed with him already. He lacks some endurance in his upper body and tires when doing small motor tasks so he's been given some chores to do around the house to help him build some muscle. I expect now that the weather is improving he'll be building a lot more strength with all the playing outside. Just the few nice days we've had lately, I have already observed a significant improvement in his stamina and interest in playing outside. He's gaining coordination and balance too, by riding his razor scooter for long periods of time. Who knows? We may even end up attempting to learn to ride a two wheeler by the end of summer! We hope to write another post very soon to announce the birth of Conway's new baby sister. I'm scheduled to be induced on 4/7 if she hasn't come on her own by then.

Six Years

Can you believe it? Our dear boy has reached yet another milestone! He turned six years old today. I thought it was funny that when I posted about it on facebook, his very first nurse who cared for him in the NICU at Mercy (St. John's at the time) commented on how she couldn't believe it had been six years already. Honestly, most days I feel like it has been at least twenty. No matter how hard I try I can't imagine what life was like before he was in it. Here he was just moments after birth, two days before our world as we knew it came crashing down and we were forced to grown in faith in a way we didn't even know we needed. We spent this birthday weekend doing what he loves... bowling and Angry Birds! Friday night we got a hotel room and invited his cousin Liam to spend the night and swim all evening. The boys had a blast being boys. Then on Saturday, we went bowling with cousins and invited family back to the house for cake and ice cream. Our silly boy didn't even touch his cake. He probably would have rather had fire hot cheetos or something along those lines. Greg made him this awesome Angry Birds Star Wars birthday shirt Playing with his new Angry Bird rocket launcher Playing pin the tail on the Angry Bird He said it was his best birthday ever... I think I believe him! 1 John 5:4 For everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith.

Cavities and Conferences

We finally got Connie in to have his crown put on the cavity. Turns out, it affected two teeth and the dentist went ahead and filled another tooth on the other side that she had been keeping an eye on which did develop into a cavity. He's now the proud owner of a silver tooth! Just goes to show you what is important to kids! He is beaming with pride over that silver thing and can't wait to show the big sixth grade girls at early arrival tomorrow morning when he returns to school. On the other hand, I am a bit sad that our record of perfect teeth is gone. We were told when he was an infant that he would likely have bad teeth due to all the vomiting he did for 8 solid months and considering the medications he'd been exposed to during hospitalizations. To top it off, his teeth are so squished together in his mouth there are lots of hard to clean places in there. We can't help but be proud, though, of how well he handled it all. He was a little nervous yesterday when he found out he was going today, but only because he thought he was getting x-rays. When I told him no x-rays he was fine. We got there and they said that they don't allow parents back in the room while they are doing a procedure (for cleanings and exams they always have). I was not really even sure what all they were doing to him since Grandma had taken him to the appt. when we learned about the cavity so I wasn't terribly comfortable with the idea. On one hand I was relieved that I wasn't going to have to be the one to try to calm him if he became upset. He had absolutely no issues separating and was back there just under an hour. When they brought me back to see him he was on O2 for five minutes to get all the nitrous out of his system and they said he was a star patient and followed all their directions very well. He even got to pick out two prizes for being so cooperative! Although I was uncomfortable at first about not being in the room I quickly looked at it as I would any other medical procedure. I would never consider asking to be present while Dr. Bove tries to do his job and correct his heart. So why then would a dentist want a parent, who probably would be too emotionally invested (especially being pregnant) anyway, to be in the room while she works?! It all worked out and he got rainbow sherbet for lunch afterward so he was pretty thrilled. Today was also his parent teacher conference. His teacher reported that he is doing very well academically. He seems to learn quickly and retain information, especially his sight words and math. We are working on getting him to use his sight words more in his writing. I notice that he sounds out everything when he writes, even if it is a sight word he already knows. So, applying his knowledge is our new goal. He's constantly reading environmental print. Yesterday we took a trip to Babies 'R Us and when we pulled up in the parking lot he said, "What is baby russ? Oh, I mean, what is babies russ?" It was pretty cute. We've had snow here and the kids had two snow days off of school last week. He really has enjoyed being out in the cold and the snow, which is a relatively new thing for him. He can be out there for hours now, when in the past just a few minutes seemed too much for him. He's especially fond of shoveling. Unfortunately, he uses his kid-sized shovel to move the snow from the pile on the edge of the driveway BACK onto the driveway, by hurling it over his head. Silly boy! He also enjoyed sledding at Westhoff Park until he flew off his sled and burned his face on the frozen snow. He even had scrape marks on his forehead. He couldn't wait to tell Grandma George all about his sledding adventure. It amazes me how he and Mookie went up and down that hill dozens of times and the last time I took them to that park to sled he was so worn out and exhausted I had to carry him up the hill every time. We give God all the glory for how well our Miracle Boy is doing. Can't wait to see what God has planned for his life :)

Erin Heart Update

I saw an electrophysiologist recommended to me by Connie's cardiologist and he diagnosed me with a rhythm disorder called AV Node re-entrant tachycardia. Basically it is a problem caused by being born with two electrical pathways rather than one. It can be contolled with medications, but they are very not conducive to pregnancy or nursing, and have side effects. NOT something I'd like to deal with for the hopefully 50 years of life I have left. There is a procedure called an ablation (you may remember Connie having this back in 2009 in Michigan) that has a 95% cure rate for this type of problem so after the baby is a few months old I will likely have it done as an outpatient. The doctor assures me that my issue is much more straightforward and technically easier to deal with than Conway's. In the mean time, if I go into SVT again there are a few "home remedies" I can try or I can be treated in the ER like last time. He says it shouldn't effect labor or delivery, so that is reassuring. I also had an echo to rule out any structural abnormalities and got the results today. My heart is normal! God is great! Since this SVT scare I was really starting to worry there that all the issues I'd been chalking up to pregnancy (swelling, shortness of breath, etc.) were actually signs of heart failure! Thank you all for praying for me and the baby, and of course Conway. Connieland Update: His headaches have been increasing in frequency the past couple of weeks. Please pray that he be relieved of migraine pain in the future.

Connie's Video Debut

Click here to view. Conway appears 39 seconds in holding his Angry Birds heart valentine... raising awareness and funds for needed heart research at U of M.

SVT

This post is heart related, but not "Conway's heart" related. It seems as though I had an episode of a very fast heart rate, or Supraventricular Tachycardia, yesterday. It started when I was playing catch with my students during afternoon recess. I mentioned to a coworker that I must have overdone it and so I spent the next hour sitting mostly. The heart pounding didn't get any better, and when I stood up or tried to walk across the classroom I felt horrible. After school I went home and called my OB doctor. Her nurse told me to drink some water and lay down for an hour and see if it improved. If it didn't, I was instructed to visit the Women's Evaluation Unit at the hospital where they see pregnant women rather than in the ER. I went in and sure enough, my heart rate was 168. They immediately transferred me to the ER where I was seen right away for an EKG and before I knew it I had a room full of doctors, nurses and techs. I've never had such prompt attention in the ER! We took Conway in once and he ended up being admitted for severe heart failure and they didn't move that quickly! Well, they administered a drug through an IV called Adenocard to try to get my heart back down to a normal sinus rhythm. It didn't work. They doubled the dose to the maximum dose and that did work. The doctor warned me it would feel uncomfortable but oh my! The way the drug made my chest feel almost induced a panic attack. Thankfully it only lasted a short time and it worked on the second dose. I asked what would have happened if that dose hadn't done the trick and they said they would have had to cardiovert me with the shock paddles like you see on TV. So, I feel rather blessed that it didn't have to come to that! They kept me on the monitors for a few hours and ran blood work. All came back normal. My OB ordered a non-stress test to monitor the baby and she looked great. I finally got discharged around 11:30 and made it home shortly after midnight. By then I was so exhausted. Partly due to the fact that it had been a long day, but mostly because my body had experienced the physical strain equivalent to running for six hours. Even my legs and arms were worn out! I joked with friends that maybe now I could put one of those 26.2 stickers on the back of my car that you see marathon runners have! I followed up with my OB today for my regular check up and she would like me to see a cardiologist and ordered an echo to look at my heart. We're hoping to get that done sometime in the next two weeks so she can get the cardiologist's opinion on all of this before my next OB appointment. I've already gotten recommendations from Connie's doctor on who I should try to see. Quick Conway update since it's been awhile: He's doing great heart-wise. We've already had his new pacemaker checked more times since August than he probably had in the previous two years, but all is well with it. He fell one day in gym class and his teacher was concerned that it was on his pacemaker and he was hit in the stomach a time or two during the school day with balls so we sent transmissions each time. He is just getting over a stomach bug (just like most of the country apparently) but other than that, has been very healthy this year. He is going for an OT eval in a couple of weeks to check on fine motor development so we'll keep you posted on what we find out. Please keep in your prayers two other LTGA families. One is a very young mom who could use some mentoring to help her navigate her way through this world of congenital heart disease, but seems to be in denial. The other is a family whose LTGA first grader has been on ECMO (bypass) for 100 days waiting for an angel heart as his is failing. His parents could use some strength for sure during this long journey. God knew the plans for these families before their special children were even born, but it can sure be hard to trust when you are faced with such unknowns.

Fetal Echo

Conway's new baby sister got her heart checked out on 12/27. We are breathing a sigh of relief because we were told she definitely doesn't have anything like what Conway has or any other complex heart issues. She has all 4 chambers, her great arteries are normally aligned, there is no fluid around the heart and her heart rate is normal. However, he couldn't totally rule out a Ventricular Septal Defect, or VSD. Because of the way she was laying, her spine was casting a shadow on her heart and the septum was not totally visible. He's not saying she definitely has one, but he can't say she doesn't either. Best case scenario is it is nothing. Worst case scenario is that she has a 2-3 mm hole in her heart between the bottom two chambers (For comparison's sake, Conway's was 8-10 mm and wasn't his biggest problem!). It could close on its own before birth, after birth or never. We'll just have to wait and see when she's born. That's when we'll have an echo done directly on her rather than trying to view her heart through my abdominal wall, uterine wall and her chest wall. Honestly, we aren't worried in the least. It is in God's hands and we are confident she won't need medical intervention immediately anyway. If she does end up needing surgery or a procedure, we have a fairly decent knowledge base now and know what to do and how to navigate the world of CHD. Christmas has been wonderful and we have had several fun, family celebrations. I promise we'll post some pics soon!

Pulmonology Visit

Greg took Conway to Dr. Spivey this morning. Apparently he'd already gotten his records from his pediatrician and also spoken "at length" to his cardiologist so he had a pretty good picture of his history. Just that fact alone gave me confidence and made me really appreciate the coordination of care that was taking place. After a lung function test which appeared normal, he said that he feels these episodes we are seeing are more like recurrent croup than true asthma. The positive thing about this is that as children grow, so do their airways and they can outgrow this. It is also possible that the numerous intubations have led to some scarring in his airway, leaving him more susceptible to these breathing issues. For now we are treating it pretty much the same as we have been with the addition of a liquid steroid we'll keep on hand for severe episodes in which we are contemplating an ER visit. We'll follow up in 5 months unless things get worse. At this point, giving him a daily medicine seems uneccesary since he only experiences this a handful of times per year. Thank you for praying for wisdom for all involved in his care. It appears to be the best possible scenario and we are truly pleased with how well his physicians worked together to come up with the best plan for him.

Asthma

Conway will be adding a new specialist to his medical profile. On Monday, he has an appointment with a pulmonologist. We've known for some time that he has viral induced asthma, which presented itself as a cough that just wouldn't go away after an illness. Well, within the past four days he has twice spent the wee hours of the morning struggling to breathe. He gets scared and so do we. To hear your five year old tell you he wants to breathe but just can't is possibly one of the most heart-breaking phrases he's ever uttered... right behind telling me he was "actually ready to go home" after he just couldn't bear the chest tube discomfort any longer last August. At the advice of the school nurse and our own gut feeling, I called the cardiologist to get a recommendation for a pulmonary specialist. His cardiac nurse has a son with severe asthma so she knows just how we feel. She even offered to personally call to set up an appt. if "we got any run around" and weren't able to get in for awhile! Luckily we're set up first thing Monday. Since he has to be the one that everything happens to, we also just discovered at a check up that he has a cavity. Since it is on a molar they want to crown it. We've read there are some different schools of thought on treatment so we haven't decided anything yet. He already dislikes the dentist. I can't imagine how he'll be when they inject a needle into his gums! This afternoon I went for my monthly check up on the new baby girl. Everything is right on track. The doctor said today she'll induce me a week early for a couple of reasons. One is that Karsten weighed nearly 11 pounds and he was born a week early. The other is that Mary Kathleen's First Holy Communion is the day before my actual due date. Obviously she's not scheduling it for convenience sake, and there is a very legit reason to get the ball rolling ahead of schedule. I am breathing a sigh of relief to think I won't have to worry about missing out on such a big day for MK. I missed Cece's First Communion because Connie was in the PICU at Mercy in heart failure. So, now there is a very real likelihood that this child will share a birthday with Karsten! Please pray Connie will breathe easy and for God to show us the best treatment path for his asthma and his cavity.

New hobby

It has been quite awhile since our last post so here goes... Conway began piano lessons this evening. He takes lessons from the same teacher MK has been going to for two years. He was scared at first and even started crying before it was time to leave. I think partly he was exhausted from walking around the Botanical Gardens all day on his first elementary school field trip, but he was also nervous that tonight he would have to play in a recital type environment. He came home with a big smile showing off a prize he earned. He's eager to go back next week so I'd say that's a good start! Connie is still loving school and his teacher told me this week he's more active and social now than he has been all year. His skills in many areas are strengthening. He even ties his own shoes now! We put up our Christmas decorations over Thanksgiving break and he was a big help with the tree. He loves to hang ornaments and hear the stories behind each one. He noticed that Karsten doesn't have as many as he does and he felt badly about that-such a sweet big brother. Speaking of big brother, we found out that our new baby is a girl. Conway was the only one really disappointed in that revelation. He had his heart set on naming this baby Peter. Conway spends his free time engaging Karsten in very noisy, all-boy games such as tag, jumping on furniture, "fighting" with hand towels and boxing. His new favorite movie is the Nightmare Before Christmas and he loves to play with his stuffed angry birds. He uses Greg's paper boxes to make large structures in which to place his pig. Then he hurls the birds at the structure, taking delight in it falling! MK plays along designing posters and other props for these games. We continue to be grateful for all your prayers, especially those for his health. His strength and stamina seem to be increasing and so far he's been able to avoid the nasty bugs going around. Specifically, we ask for prayers that he grow in his ability to maintain focus. We also ask for God's help and guidance with Greg's business, for Mary Kathleen-that her worried little mind will quiet enough for her to get adequate sleep and for good health for the new baby. We have an ultrasound tomorrow afternoon and are, of course, a bit nervous about the condition of this child's physical heart. Considering Conway's issues were missed on such an exam, we'll have a more in-depth look with a ped. cardiologist at just the heart within the next few weeks. Stay tuned for ultrasound pics... :)

Cardiology Update

It has been a while since the last post, so there are a few things to update everyone on. First, Conway saw Dr. Bromberg today to check up on his ticker. The report was glowing. His LV function is "brisk" and the RV pressures are completely back to normal. Valve leakage on the mitral, aortic and tricuspid is minimal and not a significant or imminent threat at all. In fact, the doctor said this is the first time he can remember that he couldn't feel Connie's liver (a sign of heart failure that has improved)! He wasn't needing as much power as the pacemaker was supplying so that got turned down to preserved battery life as well. He's happy with his energy level and stamina and sent us on our way until next April. Speaking of April, that is a going to be a big month for us. Mookie will receive her First Holy Communion, Karsten celebrates his third birthday and we will welcome a new addition into the family. I'm a little past 12 weeks along. We hope to find out just after Thanksgiving if it is a boy or a girl. After today's cardio appointment, we stopped by Mercy Eye Center to pick up Conway's new glasses. He still looks super cute, even though we said no to the sport goggles that he was hankering for. His Primary year is 1/8 of the way complete already! He loves school and his teachers. He talks about it a lot and I've even found him playing school at home... something I never dreamed I'd see. It was so cute how he set up math centers and a science lab and he and Mary Kathleen were trying to teach Karsten. He's also taken a new interest in drawing and writing. His handwriting is still pretty rough, but is improving by leaps and bounds just in this short time since the start of school. He walks around the house with a small notepad and pencil asking what he should draw next. He looks like a mini-reporter! We're bracing for cold and flu season. We'll all be getting flu shots soon. He's already had a hint of a cough and needed some breathing treatments. Hopefully his new and improved cardiac function will help him fight off bugs even better. Thank you for continuing to keep our family in your prayers. Conway's prayer warriors are such a blessing to us!

Check Up with the Eye Doctor

Greg took Conway to the eye doctor this afternoon (left at two, got home at 5:30--gotta love that office!). He was an old pro with the eye drops and everything. Turns out, his eyes are better! He got a prescription for weaker-strength glasses. We'll post a pic of him in them once the frames are selected and lenses made. School has been going well. He loves it. He says every morning he wants it to be the weekend, but he loves every minute he's there! He was line leader the first week. Last week he was the globe holder. He's had homework every night and is doing it independently after we give him the directions! He's such a boy! If you turn it into a game, he begs to do more work! It's all in the approach with him. For his sight word practice I've been telling him I'm trying to trick him and every time he reads it I sigh all dramatically as if I'm disappointed I didn't stump him and he laughs hysterically and asks to do them again! So proud of him! He went two full days last week and is going three full days this week to ease him into the rigors of their schedule and all the traveling they do back and forth across campus. So far he's handling it well. Thanks for the continued prayers for healing!