#15weeksold

Yesterday was moving day. I barely slept the night before. My body was, and still is, full of anxiety, fear and excitement. 

I brought Asher to school knowing that I wouldn’t see him until the weekend. My anxiety level was high with leaving Finn so close to his transport but I needed to see Asher. His energy and light give me so much hope. My idea was to go get donuts, a rare treat, however he was adamant that he wanted a muffin. We sat and ate our muffins and talked about the week. How Papa and Grandma were going to stay with him for a few days and then when the weekend came he gets to join us in Rochester. He was ecstatic that we will have NEW playgrounds to check out.

Back at Children’s they had done everything to prep Finnegan for his road trip to Rochester. It was so calm when I got back. Lots of hugs and tears. They have become our family. The team, beyond even the doctors and nurses, have seen us through the darkest days of our lives. I’ve squeezed their hands and cried on their scrubs. It was hard to say goodbye.

When the transport team showed up it got real. I broke down sobbing. I’m not entirely sure if it was fear or happiness, maybe both. I was scared because I knew what they were going to do in order to get them on the Mayo’s ECMO but I was happy because I knew that this was the next step in our adventure. Rochester, heart, heal. Things happened quickly. I was so happy to see Dr. Rood. She wasn’t supposed to be on but she came by to say goodbye. She stood next to me when they took him off ECMO and held her breath with me during the minute long transfer. Once they had him up and running on their machine it was a matter of untangling lines, switching him to the stretcher and before you knew it they were on their way via ambulance. Jeff and I not far behind. Driving the longest road of our lives.

I’ve never been one to worry about the weather, but with the precious cargo that ambulance had on board I was terrified. It was gray, misty and foggy a metaphor of what I was feeling internally. “Please don’t rain or snow” I kept  saying to myself on the way down. We drove separately and actually beat the ambulance. Jeff and I waited impatiently until greeted by our transplant NP and coordinator. A whole new family to get to know. Nurses, doctors, coordinators, everyone. The team is much larger here because it’s a teaching hospital so there are added bodies and names to remember. It was a relief when we saw Dr. Johnson, our first familiar face. 

The transport team found me as soon as they could to tell me that he had a successful trip. A little bit of balancing with the heart rate and blood pressure, but nothing to worry about. They settled Finn in and did a lot of baseline work. Echo, x-ray, ultrasounds and lots of labs. The team here at Mayo is so complimentary of our friends up at Children’s. They keep reiterating what we already know, that they took tremendous care of Finnegan. He was so stable by the time they had to transfer him that it made Mayo’s job easy. Another reason to love our Children’s friends.

This morning it was wonderful to see Finn’s face. He looked as content as one can in this situation. The atmosphere in his room was calm. During rounds there was a lot of information to discuss but ultimately not a lot of changes to his care. He is listed, he needs a heart. We have to keep his other organs intact and ideally get him of ECMO. We know the longer he is on it, the higher the risks are. As of today the rest of his body is holding up. As of today he needs ECMO. If he starts to tell us he doesn’t we can wean support but today he needs it.

We will figure out our new normal. Hopefully just in time for it to change again and that change will mean he gets his gift. Until then we follow Finn’s lead, support and love him. I am so impressed with the Mayo team already, even though I woke up today missing my Children’s family. 

For now my son is stable and on the list. He has a whole new group of people helping and rooting for him and that isn’t a bad thing. I love that little meatball so much. He has been opening his eyes and squeezing my finger. It’s obvious he knows that his daddy and I are there. His heart rate and blood pressures have been stellar and we hope to maintain that. Our intensivist, Dr. Van Doran is just amazing. She is already talking about starting nutrition! The idea that he will be getting breast milk, albeit extremely small amounts, is exciting. That is my job as the mommy, feed the baby. Our nurse Mandy already has seen that I want to be active in his care and is encouraging me when possible. Everyone has been so kind and generously put up with my question asking. Jeff is even asking them now, there is so much more to learn.

Children’s was our training. Transport and listing was the starting line. Now we begin the race. The problem is, we don’t know how long the race is. 5k, 10k, half marathon, marathon, Iron Man? We don’t know so we have to pace ourselves and our expectations. I’ve been told this is the hardest part, the waiting. The staying “healthy” so-to-speak. 

Along the road we are going to need encouragement, water, nourishment, support and occasionally to be carried toward that finish line. We know that we have the right family, friends, work and medical to help and support us and for that I am grateful. 

You are one loved kiddo, Finn! On your mark, get set, GO...

- 

Speaking of moving, I had started this tumblr page for myself and my son. A sort of online baby book of our adventures. I had done the same for Asher previously. With the turn of events I have decided to change the platform to be something a little more organized and easier to sort, tag and revisit the incredible journey. Therefore I will be updating the following page going forward: 

http://finnsheart.blogspot.com/

It will still be my raw and unedited account of what we are going through and I welcome friends to follow along if they so desire, just a different URL. 

My darling boy. I hope you can feel how much I love you. Right now your doctors and nurses don’t think it’s safe for me to touch or talk to you. You get so excited when you hear my voice that you expend valuable oxygen that your body needs to stay alive. It hurts me because I want you to know that I won’t leave your side. You need to know how much you mean to me.

Tomorrow we start the next chapter of our story. I am so sad, scared, anxious and excited all at once. We need someone to offer us their gift of life. It’s hard because I know what it’s like to see you sick and I don’t want any other mommy to ever feel this way. Someone, somewhere is going to have to make a very difficult decision to donate their baby’s heart so that you may live. There are very few people in this world who can understand how I feel about that. It’s so conflicting.

Your team here at Children’s has become our family. The other heart mamas, nurses, doctors and the rest of the team here is the only way we have made it through this. They have held my hand, hugged me, cried with me and loved us in the darkest times we’ve ever experienced. I can’t imagine going on the rest of this journey without them. You will never know how much they’ve done for you, but I can see it when they look at you, they love you.

I’m sorry that I couldn’t give you a heart that works. I hate that I can’t fix you with my love. You are so important to me and I would do anything to make you well. There are so many things I want to show you and teach you but we have to get past this chapter first. 

I want you to know all the feelings that I have throughout this journey. Your daddy and I have experienced more pain and hurt than I thought was humanly possible. I have cried harder and longer than I knew I could. I have also loved harder than I’ve ever been capable of. I know our ups and downs are far from over and that we will forever be battling your broken heart but, I am in it with you. I will hold your hand and kiss your cheeks everyday. I will sit and cry with you and jump up and celebrate with you. I will be grateful when you have a toddler tantrum and cherish the mundane. I promise to be present, positive and your biggest cheerleader. There is nothing that I wouldn’t do for you.

Tomorrow we will meet our new family and start settling into our new home. It’s going to be scary and I think we are going to miss Children’s but it’s the best place for you and your heart. They say they will get you on the transplant list by the time the day is done. Then we start the longest wait of our lives. 

We can do this darling Finners. I will be strong and you will be stronger. There is so much left for you to do. 

Love, 

Mommy 

April 30, 2017

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.