Saving Celise

Another week down, and Celise continues to show us signs of improvement. Her swelling has come down so much that she barely looks like the same puffy baby from a few weeks ago. Her BNP continues to decrease (now 272!), which means her heart feels less and less stressed.

She has been continuing her breathing trials all week, and she’s tolerating them more and more. This should be no surprise by now, but if she’s not in the mood to do the extra work, she simply refuses and they have to reschedule her trial. When she’s in the mood, though, she aces her trials like the little warrior she is. In her short life, she’s never had to actually use her lungs, so I can only imagine how difficult and strange it is to finally flex those muscles! She is solidly on the path to extubation, and we can’t wait to see her little face unobscured by tape.

We’ve also started having conversations with her doctors about her near future. She still has the vascular ring and pulmonary stenosis to worry about, though her magic drug might help with the latter. The doctors are currently discussing whether it would be better to go ahead and do some of these surgeries, or let her grow a bit first. They’re also debating whether she fits the criteria for a heart transplant yet or not. The hope is that her magic drug will get her to a point where she no longer needs a new heart, but considering transplant waiting times are roughly 6 months, it might be a good idea to get her on the list in the meantime. Eventually, we will also need to go back home to Washington. Dillon’s paternity leave will end in August, and if Celise isn’t ready to be transferred, she and I will have to stay in Charleston without him. Now that Celise is so much more stable, her doctors finally feel more comfortable discussing what milestones she needs to meet for each of these questions.

Overall it has been an excellent week. Hospital life means always bracing yourself for bad days, but we’ve been lucky to have a really solid streak of good days. After all of that time on the paralytic, her muscles are really starting to get strong. She’s able to easily lift her arms again, and reach her hands to her face. She even managed to lift her head off of her bed this morning, which is quite a feat considering she’s been sedated for most of her life. We’re finally allowed to pet her without gloves, and she wriggles around in the cutest way when she feels a new sensation.After a month of no physical contact, its so wonderful to be able to feel her soft baby skin again.