CHD Awareness Day 1, Diagnosis

(Originally posted on Facebook)

2/7/2015 is the first day of CHD Awareness week. I never thought I'd be on such a journey with my child, it is a journey I wish my son didn't have to walk. He's currently very stable and I hope he says that way for a very long time. We check his heart rate yearly. His surgeries damaged his sinus node, so it doesn't fire as it should, some day, he may need a pacemaker. Some day, he may need a valve replaced. We are part of the 1 in 100 children affected by Congenital Heart Defects.

C4 was born with a Complete AV Canal Defect with Overriding Aorta. Essentially, he didn't have the septum down the middle of his heart. His body compensated for the lack of a septum by creating one large valve that spanned the entire heart instead of the two valves that should be present. His aorta was further over than it should be, which edged him toward a second defect called Tetrolagy of Fallot. We were able to avoid that diagnosis by a matter of millimeters. Here's the blog post from the day we found out about C4's defect, it is also the impetus for this blog and my very first post. ‪#‎chdweek‬ ‪#‎1in100‬

http://slowslidetosanity.blogspot.com/2010/04/were-off-to-rocky-start.html

Preemies are exhausting... Cardiac babies are super exhausting

Baby Girl hit 10 lbs!! 

Baby Girl has nothing on C4 when it comes to exhaustion.  Trying to get a cardiac kid up to 10 lbs for surgery is far more difficult in my experience than keeping this preemie gaining weight.  Baby Girl hit 10 lbs today at 19 weeks, 4 days.   C4 was 11 or 12 lbs when we had surgery at 15 weeks old. The thing is, C4 was 6lbs 4oz at birth and Baby Girl was 1 lb 10 oz.  She's gaining weight by leaps and bounds compared to him.  She LOVES eating, is almost entirely breastfed (we do 2 fortified bottles a day to boost some nutrients preemies need) and will eat practically anytime food is on offer.

 C4 is on an appetite stimulant to this day.  He's never had fat rolls like Baby Girl. We used to spend 30 minutes coaxing 2.5 oz down C4, Baby Girl takes 3 oz in under 10 minutes and then cries to go back to breast and top off.  So very different!

C4 has yet another sinus infection, poor kid is always sick... I still hate winter.

C4 has been doing very well in his preschool.  He's made leaps and bounds in imaginative play and social skills.  Yesterday when I was feeding Baby Girl, he brought down his baby and fed her in the seat next to me.  Academically, he continues to startle and confound us.  We caught him multiplying 2 digit numbers last night.  It took us a minute to figure out what he was doing, the first "number sentence" we realized he was creating was 18x22, he did the math in his head, school is going to be an interesting mix of problems for us.  We will be learning about our Kindergarten options next week.

 

Cold and Flu Season is terrible

I hate cold and flu season... C4 is sick again. He gets sick or has symptoms 3 out of 4 weeks. I basically have to avoid interacting with him 90% of the time. Baby Girl and I are confined to the living room and I'm sleeping on the couch instead of in my bed. I feel like we're damaging C4's relationship with his sister and with me. It is absolutely breaking my heart :(

Baby Girl remains on a monitor for apnea and bradycardia. She's had 2 alarms, the latest was yesterday.  I think I'd like to keep the monitor for at least another month.  Last time baby girl had shots she started alarming and had to go back on oxygen support.  I'm worried that will occur again with our next round of vaccinations.

Our weeks are filled with appointments right now.

• Baby Girl had an eye appointment 2 weeks ago and her eyes continue to develop normally.  Our next eye appointment is in 2 more weeks, hopefully it will be our last.  
• C4 had a cardiology appointment where we had an EKG and an echo followed by a 24 hour holter monitor.  His overnight heart rate was a little lower than last time, but things mostly stayed the same.  He had some extra atrial beats, but they appear to be an isolated finding.  Overall, he's managing his lower heart rate very well and the rhythm is a standard sinus rhythm.  
• Baby Girl has weight checks at least once a week and she's continuing to gain about 30 grams a day.  The last 3 days had a slight dip to 26.6 grams a day, but hopefully that was a fluke.  Our home health nurse also gave her the synagis shot so we didn't have to risk the doctor's office while the flu and RSV appear to be peaking in our area. Baby Girl weighs in at 8 lbs, 5oz.
• C4 had his GI follow up, he's gained 3 lbs in the last 3 months, which is amazing!  He did not grow any taller over that time period.  If he continues to follow his usual pattern, this means he's about to shoot up in height and become super skinny again.  I asked our GI doc about the Autism team's recommendation that we offer only one family meal and make C4 wait if it isn't food he wants to eat.  We have tried this before, both with food and water.  When we tried with food, C4 didn't gain weight, height or head circumference, which is a very concerning issue.  When we tried with water (trying to get him to drink from a cup without a straw) he became dehydrated to the point he stopped urinating.  
• Baby Girl had her initial meeting with Infant and Toddler Services, she automatically qualifies for services based on her gestational age.  It was good to see the people we'd worked with previously for C4.  He's certainly prepared us well for the services we'll need again for Baby Girl