Saving Celise

Getting a call from the hospital in the middle of the night is one of the most anxiety inducing things any ICU parent can experience. Friday night, right as we were turning off our lights to go to sleep, Celise’s doctor called to tell us she had just had a code event and required chest compressions. She is outgrowing her morphine dose quicker than they can wean her, so she’s suffering through withdrawal symptoms like agitation and muscle pain which causes her to bear down on her breathing tube and hold her breath. Some babies will do this with simple agitation—I have an uncle who would turn blue and pass out when he had his diaper changed. However in a baby with a heart like Celise’s, this can be extremely dangerous—it caused her heart rate to drop as low as 30 beats per minute. Her doctors sprang into action and gave her chest compressions until the paralytic could take effect and help her stabilize, and today she’s doing much better. If anything, this was due to her feistiness rather than an episode with her heart. But it still reminds us that we’re on a never-ending rollercoaster we never asked to ride. 

There are a few things about her heart they still want to evaluate, but overall her heart health is much improved. She still has a lot of difficulty with her lungs, and we’re beginning to discuss the potential benefits of a tracheostomy. Getting a trach could mean going home much sooner, and give her a chance to meet her milestones and grow. It would also mean we’d have a lot to learn about medical equipment and care, and probably make a lot of changes in our house. We might be lucky and she’ll still be able to be extubated before too long, but a trach could be a big benefit for her too. 

We are starting to make some progress on getting us back home to Portland! The doctors here at MUSC have started discussing Celise’s case with the doctors at OHSU Doernbecher Children’s Hospital, and they’ve officially accepted her as a future patient. We still have a few important details to work on, like continuing her trial medication, but it will mainly come down to insurance approval. We will have to convince them that it is a necessity for us to go home, rather than stay on the other side of the country away from our house, pets, careers, and lives. At some point, we won’t be able to afford staying this far from home. Hopefully it won’t come to this, but if we’re denied coverage Dillon will have to go back to Portland at the end of August and I will have to stay here without him. 

Today is also Father’s Day, and Dillon’s first! Being able to look at him and see how much he loves our baby girl truly fills my heart. I’m so proud of how much he’s learned over these last three months, and I know that if I wasn’t here our baby girl would be in good hands. Watching him love our daughter is the final ingredient to our love story, and I feel truly complete.

Dillon, nothing makes me love you more than to finally see you as a dad. Thank you so much for being by my side as we navigate this new reality. I couldn’t imagine doing this with anyone else. Celise is so lucky to have you as her father! Happy Father’s Day!