Today was one of the hardest days yet. I went back to work, a week earlier than I had originally planned. My boss and the wonderful company I work for is allowing me part time return to accommodate Finn’s immediate medical needs while we wait for more information and ideally a discharge. They have been so supportive throughout this journey and I honestly don’t even want to think about what this would be like without having this second family behind me. It was scary and sad and exciting all at once.
I was able to wait for rounds and listen to the plan for today. I even got a little play time and smiles before I left the hospital. As expected we are continuing to very slowly wean Finn’s BiPAP down and that’s it. He is struggling a bit with each change but tolerating it. We haven’t had to add anything back so we will mark that one in the win column for now.
I stayed at work for a few hours, sat in some meeting and did a little catch up. It wasn’t hard to be at work, it was hard to answer basic questions. Simple pleasantries have such a different meaning now. My triggers are “how are you?” or “how’s Finn doing?” People don’t know how hard it is to answer those questions. They mean well and I do think they genuinely are excited to have me back and to know how I am handling the transition. This whole thing would be hard with a healthy baby. Going back to work with a “normal” baby at three months is gut wrenching. Leaving them with someone else to care for them all day is hard enough. But, now I am leaving him not in the loving arms of teachers but in the care of nurses who are taking care of his needs, not necessarily nurturing him. During my pump session I caught up on emails and called our nurse, Emilie, to check in. She was so sweet and read to Finn while he was awake. She played and made sure he wasn’t just staring at the stark white walls of the hospital room he has been in for nearly two weeks. When I returned in the afternoon she had music playing and was talking with him. A little relief set in. He was once again happy to see me and engaged actively. I need this affirmation today.
Nancy, our OT stopped by with some toys this afternoon. I knew Finn was tired but I think it’s important that he is practicing his therapy when he is up for it. She was moving and shaking him all around. He reached for toys, smiled, held his head up and showed off his sneaky tricks grabbing of his tubes and wires. It’s a fine balance right now because he needs to spend his energy getting better. When you are as sick as he is with as large of a heart you require every ounce of energy to get better and keep your body running as it should. Our night nurse, Chris, would rather that we keep him calm and rested than work on therapy but I have a hard time thinking that he should just lay there when he is awake. I do know that if he expends too much energy and loses weight there will be additional interventions needed.
Tonight I went home and had dinner with my big boys before returning to the hospital to work a little more and turn in. Finn was already sleeping which was disappointing, however to Chris’ point a good thing.
Brina recently shared an article with me that I could relate to all too well. After reading it I decided to order the book “When Things Fall Apart” that the author references. I am not religious but I think at times I am spiritual.
The world is a terrifying place. We manage it by believing we can control it. And when it hasn’t been controlled—when it doesn’t bend to our wills—we either look for something to blame, or we surrender.
I don’t know what the results will tell us this week. Some days I am hopeful and I still believe that I can alter our future by hoping, wishing and picturing ourselves there. Other times I am defeated and terrified of what our future looks like. Either way it isn’t fair to the little boy going through this daily or the slightly bigger boy that plays and sleeps peacefully at home. No matter what, it’s going to be hard and we are never going to be “normal” in any sense of what I am used to. But, I do know that I wouldn’t want anyone else but him. He is my Finn and I wouldn’t trade him for the world. His broken heart completes mine.