One Month Later

Today marks one month in the cardiac ICU at Children’s. Thirty one days since my baby has been home. Thirty one days since my family has been in the same room. I can’t remember the last time I breastfed, bathed or napped with my baby in my arms. It’s been one month that I have been playing part-time parent to each of my sons. It’s far from over.

After last weekend’s difficulties Finn wasn’t recovering. He got worse. His blood pressure was low and his heart rate was high. The doctors and nurses tried to do everything they could to stabilize him but he would only respond momentarily before his numbers would drop off. They were scared he was going to arrest. We couldn’t let that happen.

On Thursday April 27th at 3:00 PM we made the choice to put Finnegan on ECMO. ECMO is a life saving machine that oxygenates his blood for him, removing the need for his heart to pump or lungs to breathe. It was and still is terrifying. I am still processing everything that happened. 

Monday May 1st we will be traveling to Rochester to be put on the heart transplant list at Mayo. Because he deteriorated so quickly he will be put at the top of this list. By Monday evening our team thinks they can officially have him listed. Then, we wait. We hope that a heart finds it’s way to us. The thought of this alone is horrible. To think that someone else has to lose their baby so that mine may live. There is no way to make that feel good. 

I’m mad. I am so mad. How did it come to this? My beautiful baby should not be in this situation. No child deserves this. I’ve found a community here of nurses, heart moms and other sick kid moms that I never knew existed. Lately they are the only people I want to talk to. No one else can understand what this feels like. They have empathy, they don’t pity me or my son. They understand the lingo and we support each other in our small victories. We cry with each other on the bad days. It’s the best club that I never wanted to be a part of. 

Finn is making me stronger, better and smarter than I ever thought I could be. He has made me appreciate and admire Asher more than ever. He has taught me hope and despair like I’ve never known. There is a reason we are going through this and we may not ever fully understand it. I love this child so deeply I ache. I hurt all the time for him. If they would let me, I would be hooked up to ECMO so that I would know what he feels and sees, how it helps and hurts him. What is it like to be on the sedation medication? I want to feel that for my son so I can full understand. 

Jeff said it best - rest, Mayo, heart, go home. Our new to-do list. We don’t know how long we will wait or how he will handle the surgery or anti-rejection medications. But, before we can worry about that, we need to get to Mayo. After that we need someone to offer us their gift. Then, we start to heal. Finn will get a heart, he will get better. I have to believe that. I need him. He is the other half of my whole heart. 

April 29, 2017