CHD Awareness Day #4, Realization

It took me a long time to realize that C4 was never going to be cured.  No matter how skilled the surgeon, there was never going to be a point wher ethe doctor would say "Ok, your heart is good now, you no longer need a cardiologist".  C4's heart will always be broken.  With skilled repairs and careful manipulation of what the surgeon had to work with, we've achieved "good enough for now".

When you tell people you're going to have a baby with a congenital heart defect, almost universally, they tell a story about their friend who had a heart baby who had open heart surgery as an infant and "they are totally fine now".  For some defects, that may be true, but regardless, that heart now has scar tissue and modifications that will forever change how it operates.  That heart can never be normal, it must be managed.

People think that congenital heart disease is something that can be fixed and then you move on, but it isn't.  It is a life long affliction with lasting conseuences.

Some days, I barely think about Charlie's heart.  Some days, I don't imagine when the next surgery will come.  Most nights, I check on him, to make sure he's still breathing.  Most nights, I realize, this is a journey that will never end.

CHD Awareness Day 3, Siblings

The decision to have another baby after C4 was really hard.  We were very scared of another CHD.  The odds increased to 2-3%.  We ran some genetics tests on C4 and determined that he didn't have any obvious syndromes that would effect the heart, this is part of what gave us the courage to try again.  We are so lucky to have Baby Girl in our lives, she's a different adventure, as all kids are.

Even though Baby Girl was born heart healthy, her prematurity led to the possibility of a couple of defects that occur when the fetal circulatory system doesn't correctly shift over after birth.  She could have had a PDA or a PFO which would have needed to be surgically corrected.

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