CHD Awareness Day 2, medications and surgeries

Today is day #2 of CHD Awareness week.  Today's topic is medications and surgeries.

C4 has been on multiple medications since birth.  Prior to his first open heart surgery, we danced the delicate edge of heart failure.  We gave Lasix (which tastes terrible) to reduce swelling in his belly and fluid in his lungs, this threw off his electrolytes so we gave him sodium and potassium (which taste worse than the lasix) to try and bring his electrolytes back into alignment.

We gave medications to speed his digestion and medications to decrease the acid in his stomach because when your heart doesn't work right, your body prioritizes where your oxygenated blood goes and your guts are not the winner.

After Open Heart Surgery (OHS) #1, we started on an ace inhibitor (blood pressure med) to decrease pressure on the repaired valves in his heart.  No one is sure it will help prolong the life of the valve, but it might, so we try.  For weeks to months after surgery, you stay on Lasix as your body gets used to a newly efficient circulatory system and starts appropriately sending fluid out of the body.

Between surgeries, we only have to give a few syringes 2-3 times a day, to stimulate appetite, because he never learned what "hungry" means, to continue to protect his valves from the wear and tear of life.  Steroids for his lungs which are struggling under the backflow from a leaky valve until finally, the tipping point comes and we must have surgery again.  The goal for open heart surgery is to have the surgery just barely before the person gets sick.  On the cusp of something awful happening, so you eek out as much good time before surgery as you can and the patient still has the reserves to withstand the trauma of the surgery.

The first surgery was hard on C4's sinus node, the second one damaged it somewhat significantly, which may lead to a third surgery. In the mean time, we enjoy each day, we eek out as much good time as we can get, waiting until we are on the cusp again.

19 days post op, OHS #1

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.