Saving Celise

Happy Mother’s Day! It’s quite surreal to be writing this message on my first Mother’s Day from my daughter’s hospital room. Seven years ago when we first started our fertility journey, we never expected it to look like this. Having a sick baby is a terrifying experience, but all of our family and friends, and the entire staff at MUSC have made this so much easier to handle.

Celise has been on her special experimental medicine for just over two weeks now, and we’re already seeing incredible improvements. Her swelling is coming down more than ever and we’re able to really see her facial features once again. The lab test that measures heart failure (BNP) has drastically decreased towards normal levels. The day before she started the medication, her BNP was 6,500. A week later it was 852, and today it is 434! That is an extremely significant drop, and we’re getting very close to “normal” (they want this number to be under 100).

I saved the most exciting part for last, of course. Celise is taking her first major steps towards extubation! As I said at the beginning of the week, they have been weaning her ventilator settings every day. They’ve now gotten so low that they’re able to do “practice runs”, which basically means they turn the ventilator off for 30 minutes and let her do all the work on her own. She’s had three practice runs so far, and while she still needs to build up her lung strength quite a bit, she’s acing her tests! Her doctors and nurses are very hopeful that she’ll finally be extubated within the next few weeks.

For the last 7 years, this day has been loaded with pain and fear, and thoughts that we’d never have a child of our own to celebrate with. It’s always been hard not to think about our losses and what could have been. But today as I look at Celise in her hospital bed, instead of fear or sadness I just feel gratitude. Today she is here, she is ours, and our hearts couldn’t be more full.