Saving Celise

Celise is now 17 weeks old, which also means it has been 17 weeks since we left our home in Portland. We left during winter for what was supposed to be a 2-3 week trip to meet our daughter, and has turned into a four month long ordeal. We completely bypassed Spring. Homesickness has hit us hard on and off, and being without our furry family members has been excruciating. But tomorrow, after 122 days away, we are finally going home to Portland. We hoped that by starting the transfer approval process early we might be able to make it home before Dillon has to return to work at the end of August, Never in my wildest dreams did I think we’d be home before the middle of July. Celise’s heart issues are still complex and serious and she has many steps ahead of her before we can bring her home, but her doctors at MUSC are comfortable transferring her to our local Children’s Hospital so we can start going back to our normal lives—or at least our new normal. Once she is settled we’ll hopefully be able to do a few procedures that will go a long way towards improving her quality of life and speeding up her ability to come home. Eventually we hope to wean her to a home ventilation system, so that she can be home with us while she grows and gets stronger.

We’ll never be able to thank the team at MUSC enough. They made us feel safe and secure in a moment in which we were completely untethered. They helped us get through those first few weeks when we thought we’d lose her, and most importantly, they helped stabilize our little girl and determine the best course of treatment for her to thrive. There is no simple fix for her heart, but despite the odds she’s gaining weight, her bones are growing, and she’s become more and more aware and interactive every day. 

Thank you to her nurses and care team, who treat her like their own and are always so thoughtful. If we could transfer you all to Portland with us, we would. And an extra special thank you to one of our nurses, Katie, for giving us the most special 4th of July. Babies are really difficult to hold when they’re on a ventilator, but when Katie found out Dillon had yet to hold Celise, she was determined to make it happen. It took four nurses about 10 minutes to rearrange her ventilator tubes and IV lines, but eventually they were able to place Celise into his arms for his very first baby cuddle. She immediately snuggled into him and slept for over an hour. I don’t think I’ve ever seen her sleep more peacefully, or him more happy.

We’ll see you soon, Portland!