Late night/Early Morning Update - Day 2ish

When TheMan and I went by to drop off milk at 11 before we went to bed, there were a few people in C's room.  He's been having episodes of a concerning heart rhythm called Junctional Ectopic Tachycardia (JET).  They were working to use the pacemaker to get his heart beating faster than would allow for the JET.  I just got back from my 4am pump and he's doing much better according to his nurse.  We'll be better able to understand what is going on after a bit more sleep.  C looks good otherwise.

Surgery Day 1

C's resting in the PICU. We had a bit of a concern earlier when they started to take him off bypass. He had a pulmonary hypertensive crisis and had to go back on bypass briefly to knock him back out of it. They put him back on bypass, gave him nitric oxide and he snapped out of it within 20 minutes. They were then able to take him off bypass. Shortly after they got him to the PICU he started having some irregular rhythms in his atrium and they are using an external pacemaker to control his heartbeats for now. We'll know more tomorrow, they are basically going to let him rest overnight. He's currently heavily sedated and letting the vent do all the work.

Our first nurse was AWESOME! Her name is Erin and she explained every single thing in the room. They were redoing the tape for his vent tube and NG tube and she cut a heart out of adhesive to use for the NG tube tape.. it was really cool. Its a little thing, but it made a difference. Then we ended up discussing reflux for a while and she made me feel like she actually valued what I had to say. She also welcomed all questions and, in fact, encouraged them. I liked her a lot. Tonight's nurse is pretty cool too, but not as interactive or engaging.

We had 2 hours of sleep last night and I am absolutely exhausted. I'm hoping to get some sleep tonight after I next pump.

I am mostly OK right now, occasionally I just want to run and go get my baby!  I miss him and I hate not knowing what I need to do next.  I believe sleep will provide some perspective.
 
I have pictures to post and will upload them "soon".

Awareness

Someday soon the acute phase of my son’s heart defect will end, and I will have a typical little boy with a really cool scar.  We’ll have a couple extra doctor visits per year and otherwise life will continue.  Maybe someday he’ll have to revisit this again, but it won’t be our world again for a while at least.  This is an incredible miracle, but it comes with a price.  Congenital Heart Defects are the #1 birth defect worldwide.  They span all races and genders, affecting between 1 in 85 and 1 in 125 births.  Yet, most people don’t even know they are a concern.  Hospitals could easily perform a simple non-invasive test to check blood oxygen levels right before they send babies home and catch about 50% of the undiagnosed heart defects, and the test takes only seconds.  With a specially trained operator and a special ultrasound, they could actually do an echo on every baby to make sure everything looks OK. The tests are neither painful, invasive nor incredibly time consuming, and they would save lives. 

The odds suggest that I, like so many mothers before me, will get caught up in the struggles of everyday life and forget how hard this time was and how important researching these defects and supporting the parents who have to live with them are.  Maybe I’ll do a heart walk once a year; maybe my son will have an extra birthday celebration on his surgery date.  But life will sweep us up and carry us far away from the immersive world of complex congenital heart defects.  Given that heart defects are the most common defect and the fact that almost everyone you talk to knows someone who has a friend, child or parent who has one, you’d think that these heart conditions would receive intensive funding and public notice.  But they don’t. 

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

I was born with one of the most common heart defects, a ventricular septal defect (VSD), 14-16% of all CHDs are VSDs.  My son was born with an Atrioventricular Septal Defect (AVSD or AV-Canal), 4-10% of all CHDs are AVSDs.  My son spends an hour to an hour and a half out of every three hours eating.  He breathes so fast that he can’t suck swallow and breathe a “normal” babies do.  Instead he holds his breath, takes a couple of swallows then has to breathe heavily for a while so that he can start all over again.  But really, he manages very well, it gets harder as he gets bigger, but he’s still gaining weight and he is happy.  Without surgery, it won’t be that way much longer.  But really, our kids don’t LOOK sick.  They laugh and play and giggle and coo.  Sometimes their skin takes on a bluish tinge, sometimes they may breathe faster than the average infant.  But most people will never be able to tell they are sick just by looking at them. 

Our kids generally don’t become pale and thin, they don’t get the characteristic bald head of a child undergoing chemotherapy.  Their hearts are sick, but no one can see it, and when they could see it, they don’t want to.  Newspapers have refused to print pictures of babies just after open heart surgery; they say the pictures are too much and would offend readers. 

Really, I’m here to tell you, heart defects are pretty damn offensive, so I’m ok with someone getting a little sick.  It is sickening, and scary and hard… We need to fund research and find better and earlier interventions to save these children.

I understand why we walk away once our children are healed.  I understand why society can’t see the illness our children are suffering from, and because it isn't visible, its easy to ignore.  I also understand that this has to change and we have to work to find a better solution for these terrible defects.  40,000 children will be born with a CHD this year, 10% of them won’t see their first birthday.  There isn’t an easy answer, but we have to somehow stop walking away once our children are healed.  CHDs are a hidden disease and we have to find a way to bring them to light.