Celine

Our family was completely shell-shocked when our unborn baby was diagnosed with several complex heart defects. I can remember sitting in a booth at restaurant, with my husband, his mother, and my own, trying to explain the situation while referring to several little sketches that Dr. Cuneo (our fetal cardiologist) had drawn, earlier in the afternoon. Our baby would be born with; hypoplastic right ventricle, Ebstein's anomaly, L-TGA, hypoplastic aortic arch, and several holes. I only vaguely understood at that time how the proposed surgeries would address these problems. It seemed so counter-intuitive to me, the idea that the baby could live with only one half of a heart! Yet, I was so grateful that there were surgeries available and that there was a surgeon out there who cared enough to try to save my child.

Celine was born several months later and we followed the anticipated path pretty closely. At eight days old, Celine had the Norwood, at nine months, the Glenn, and then at 18 months the Fontan. All three surgeries were performed by Dr Michel Ilbawi, who is a real hero to us and I'm sure, countless other families. For the most part, the surgeries were unremarkable, which is just really what you want?if your kid can't have a boring, unremarkable heart, then the next best thing to hope for are completely, wonderfully boring and uneventful surgeries.

It has been over a year since the Fontan. We are still processing what it means to steer toward a future not knowing what the next milestone is. On the one hand, it was such a relief to finally get past the Fontan because it had defined our future since the beginning. On the other hand... what now? What next? I am going to be bold and dare to imagine that "next" is... preschool, and the next "next" will be ballet lessons, or piano, then sleepovers at friends, ...and one day... "Can I borrow the car, Mom?". In other words, we are going to cling to wonderfully, boringly normal hopes and dreams for our daughter, and truly, for all the other kids with heart defects out there!