It has taken me a few days to write this update, as if not putting it to words would somehow make it not true.  Early Monday morning, Celise went into distress. We spoke with the PICU doctor at about 1am who told us they were having trouble with her heart rate and blood pressure, and Continue reading

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 Continue reading

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 Continue reading

The ICU rollercoaster ride continues for Celise, as she experiences both progress and setbacks at the same time. It’s strange to be both excited and concerned for her. Her heart continues to improve, and it is significant enough for her doctors to be cautiously excited—and to be honest, surprised at how quickly they’re seeing results! Continue reading

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 Continue reading

We had an amazing day with Celise today! She was in such a good mood, and clearly feeling a lot better. The doctors placed an abdominal drain in her side this weekend and they’ve been able to get a lot of fluid off of her belly. As a result, they’ve also been able to wean Continue reading

It’s been a while since our last update, and I finally have solid information to share. There have been lots of ups and downs, bad news and good news, hope lost and found again over these last few weeks.  Celise is doing pretty well right now, all things considered. She has been off the paralytic Continue reading

Our baby girl is a FIGHTER! Celise had some really rough days at the start of the week, and it was truly terrifying. Such a long journey can be grueling for an adult, let alone a tiny newborn who is already dealing with so much. She had quite a number of setbacks: her blood pressure Continue reading

We are finally, officially, HOME!! Celise and I landed in Charleston Saturday night and were greeted at MUSC by a whole army ready to receive her. They’ll be doing lots of tests and imaging over the next few days, and this afternoon all of the doctors will meet to discuss her case and decide the Continue reading