Heart defects.... They are hard. Hard on every member of the family. Here's the list of Maddox's defects.
HLHS--his left ventricle is almost nonexistent and does not function at all.
mitral valve stenosis--stenosis means small
aortic valve stenosis
Mild to moderate hyposplasia of the ascending aorta and aortic arch--hypoplasia means small
Coarctation of the aorta--narrowing in the aorta. This is also what Luke was born with.
Atrial septal defect--no septum, or wall, between his atriums. Healthy hearts have 4 chambers, Maddox's has 2. One ventricle and one atrium.
Patent ductus arteriosus--a hole in the heart that typically closes within a few hours of birth.
Surgeries....do not get easier with time. As hard as it was to say goodbye to my week old baby as he was wheeled to the OR, walking my 3 year old to those same doors was excruciating. Just the sight of those doors gives me anxiety.
Daily life...Maddox looks so much like a typical 5 year old. There are moments when he acts like a typical 5 year old, and moments I'm reminded he's not. Some of that is heart related. Some of that is not. Right now Maddox's half a heart is working well enough to keep up with him. It's a pretty happy little heart. We are grateful.
Family life... I think we're pretty typical. Luke and I do a pretty good job of keeping it real and not letting Maddox's unique heart define him. Everyone worries from time to time, but mostly we just live the life we've been given. There are a lot of unknowns in our future, but I try and remember that's really true for everyone. We just have a different perspective, and know to watch for those curve balls.
Our CHD family...is amazing and inspiring. I think having such a large CHD family is bitter sweet. It's a joy to see these kids grow up and be happy and healthy. It's hard to watch parents struggle through those really hard days. It's absolutely heartbreaking to watch parents and siblings say goodbye to their hero and adjust to life without them.
My Faith... Has changed a lot over the last 5 years. I rely on it daily. I have to trust that God has a plan and that even on--or especially on--the really hard days he's watching out for each of His children and that someday I'll understand.
Last night Maddox asked me when he will die. He asks that more often than I'd like. I told him that he will go when Heavenly Father says it's time. When he's done all that he needs to do in this life. I believe that. I only hope he outlives me and we both live to be 90.
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