Monday is April 8th, also know as “Lucie Day”. It’s the fourth anniversary of when we got to bring Lucie home from the hospital after 111 days in the NICU. Monday is going to be a big day for Felicity, too, with meetings and decisions to be made by her medical team about when she might be able to come HOME! It’s been such a challenging yet AMAZING journey for both our girls.
Over the last two weeks Felicity has been making great strides. She no longer needs any respiratory or feeding support, she takes all her bottles by mouth, and has passed the 5lb marker! The biggest focus now is to confirm that she is able to remain stable and thriving on the oral medications she receives for both her heart failure and hormone deficiency. Well, that’s a lot of information in one sentence.
Ok, let’s start with heart failure. Her heart valves were impacted pretty badly due to complications from her infection and are still a factor of concern. Since they don’t function quite properly, what she is now experiencing is medically diagnosed as heart failure. However, the cardiologists are very encouraged by how well she has been doing and if she remains consistent, then that means she could be coming home a lot sooner than we expected. Maybe even next week. On Monday, her team of doctors will meet to discuss in greater detail. They may decide that it is okay for her go home, be loved on, and continue to grow while she waits to get surgery to repair the valves when she’s one or two years old.
On top of that, we also have her genetic hormone deficiency in her adrenal gland to be mindful of. We know she will need to receive daily steroid treatment for the rest of her life because there is a pathway blocked in her adrenal gland that does not allow her to produce enough cortisol. Cortisol plays an important role in regulating blood pressure, maintaining blood sugar and energy levels, and protecting the body against illness. When Felicity gets sick throughout her life she will need extra doses of steroids (in addition to the doses she will already be getting) to help her body meet the demands of fighting a cold, or the flu, or a tummy ache, or even a fever from teething. Without the extra doses, it could start a chain reaction that could lead to an Adrenal Crisis. We’ve seen her experience that once already about two and a half weeks ago, and it lead to her needing a blood transfusion... unfortunate all of her veins were so overly used that they had to but the iv for the transfusion in her forehead. She looked like a little unicorn for a few days. The good news is that her condition is entirely manageable with the daily steroid treatment but it’s going to take all of us some time to get used to everything and to recognize the signs when she needs a little extra help so things don’t spiral into a crisis.
As you can see there will be a lot of factors to consider before her team can make the decision as to when Felicity can come home, so we’re praying that they will have wisdom about what will be best for her and her ongoing conditions. We’ve been wanting Felicity to be home with us and now that the possibility is on the horizon, we want to make sure the whole team has clarity on the plan of care for her.
We also just wanted to stop and say thank you so much, again, for all of your love and support. Rob’s sister, Crystal, launched a fundraiser for Felicity and the outpouring of gifts has been such a blessing to us. So many of you have been so thoughtful and generous towards us during this incredibly difficult time and we are truly grateful. All of the texts, calls, and messages of encouragement have meant so much to us. It’s a blessing to be surrounded by so many people near and far lifting up our little family with so much love and prayer.