Post-op Day 9

It is looking like we will get to go home either tomorrow or Saturday!  Ripley had an echocardiogram this morning and other than that, his potassium level needs to be checked, and he's still on fortified milk with some nursing.  I was told that he will still need fortified milk when we go home so that will make things a bit busy on my own to mix the breastmilk with powder, bottle feed, pump, and nurse intermittently.  I'm a bit sad about that, but I do want to make sure he is gaining weight.

If we leave tomorrow, Ripley will have spent 19 days of his life at the hospital.  That is almost half of his life.  I am grateful that he has had his repair, though I like to stress that he is not necessarily "fixed."  He will need lifelong cardiac maintenance, though the intervals between appointments may lengthen over time.  It's possible he may also need additional open heart surgery or catheterizations, depending on how his heart grows and develops.  We sincerely hope that he doesn't need to go through open heart surgery again, but it definitely is a possibility.  During my pregnancy and after his birth, we were asked many times if the problem would fix itself such that he wouldn't need surgery.  It kind of showed me that there isn't much awareness or understanding (not to the fault of the inquirers) about what CHDs are and what intervention is necessary. I hope my story and the work of many non-profits will both dispel these myths and also propel the advances in this important field.  Roughly 1 in 100 (or 110 depending on who you ask) babies is born with a CHD.  About 1 in 2518 babies is born with Tetralogy of Fallot.  Oftentimes, CHDs are not genetic.  

I have so many reflections and have seen so many changes in myself over the past six months since Ripley's diagnosis.  I hope to continue to be thoughtful and share after he returns home and hopefully things settle down with our two children.