#14weeksold

When I was pregnant with Finnegan we nicknamed him Danger. It popped up when I was searching for baby names one day and we thought it was hilarious. Would anyone really contemplate naming their child Danger? Every week when I would get my pregnancy updates it would say “Danger Olson is the size of a cantaloupe” or whichever fruit was comparable to my sweet boy's growth. It always gave me a laugh.

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Finn had a tough weekend. He lost his NJ tube, twice, and had a hard time recovering from the stress he went through to get it replaced. Then early Sunday morning he was quite sweaty and his PICC line slipped out. All relatively small things, however his heart condition doesn’t give him much reserve energy to be stressed out. He was clearly agitated, crabby, sweaty and tired. Not the sweet child we saw smiling and playing the week prior. Since he was born I have always been able to console him. By Monday and Tuesday even my touch wasn’t doing the trick.

Between losing his PICC line, NJ tube and our inevitable trip to Mayo for eventual listing, our team decided that Finn was going to require more permanent accessories. The planned to place a Broviac line and GJ tube on Wednesday. Of course, as always, I was upset but knew it was what is best for him. I was terrified because he has not been sedated yet and to do the procedures they need to intubate him. Sedation comes with risks for anyone, let alone my brand new baby with a severe heart condition. My fear was valid. At least I had time to plan and process things. Right?

Finn is impatient. I should’ve known by his speedy entry into the world. This kid wants to be early. Not too early, but definitely before we are ready for him. On Tuesday Dr. Rood called me at work and shared that he was having some significant work of breathing and she wanted to give him additional help. They had already added the BiPAP back earlier in the day and it wasn’t cutting it. Time to try NAVA (Neurally Adjusted Ventilatory Assist). Basically a more synchronized breath on the ventilator. I was already on my way back to the hospital and told her I would see her soon.

When I arrived I saw people crowded outside and inside his room. The big glass doors were open and the first person I laid eyes on was Cheri, the chaplain. My heart sunk and my eyes started welling up with tears. Dr. Rood, several nurses, respiratory and more were there. They had Finn laid flat and were helping him breathe. It looked bad, the worst I have ever seen him. I could see him wriggling and watched his chest retract. He was grunting with every breath. Dr. Rood informed me that I needed to call Jeff and that he needed to be here because they are taking him into emergency surgery. He was getting his Broviac placed immediately. She felt that he needed intubation to breathe and was not comfortable leaving him overnight without immediate access. An IV wasn’t going to cut it. An anesthesiologist and surgeon were there before I could process what was happening. We started talking risks, bleeding out and ECMO. I told Finn over and over again that I wasn’t done with him yet. That we have too many songs to sing, books to read, zoo trips and playgrounds to visit. That we haven’t even made it to the fun stuff yet so he had to hang on. It’ll be worth it, I promised him. Jeff showed up, we kissed him, loved on him and off to the OR he went.

It’s hard to laugh anymore. Especially here in the hospital. One of the respiratory therapists, Sheri, kept talking about how Finn was being such a buggar. That he was messing with all of our plans and making everyone’s lives a pain in the butt. That he was scaring everyone on the floor. They all adore him so much now and none of them want to see this sort of situation happen. I told her it’s our fault. We called him Danger when he was in the womb and he took me too seriously. They all got a kick out of that. He definitely has lived up to that nickname. They laughed and laughed. Encouraging us to rename him when we come out on the other side of this. Finnegan Danger Olson, or if he keeps pushing it, Finnegan Moore Danger Olson. This made waiting a lot easier. Having a smile with the sweet people who care about him here.

The OR nurse called. They had successfully sedated and intubated him. The scariest part was over. Placing the Broviac is rather routine, but still comes with risks. I was mostly concerned with the initial sedation so my fears had been calmed. The surgery was over before we knew it and they were wheeling our baby back to his new room. Room 8. We are back in the center of the action. Our room is big and right next to the nurses station and doctors’ office again. We were back to full time nursing coverage. This kid likes the attention.

There was a lot of work to get him situated after x-rays and assessments. The hooked up a lot of new IVs to his Broviac line, inserted an arterial line to monitor blood pressures and retaped his breathing tube. It was pretty intense to watch. People kept coming and going, reviewing labs, pulses and looking at the screens. As far as I could tell, he seemed drugged up but comfortable. What do I know? Our evening intensivist called for a transfusion. His hemoglobin was low and he was looking rather pale. He needed the extra blood. I was concerned because we had previously been told that a transfusion could affect his transplant status. Dr. Huntley talked me through it, called Dr. Vezmar and we decided to move forward. He quickly improved and his numbers got better.

After an uneventful night and morning Finn went in for his scheduled procedure to add a surgical feeding tube. He did well and now he has two after market accessories that we can go home with if needed. These are more permanent solutions to what we had previously been doing. He is going to need access and nutrition throughout the next part of our journey and hopefully this will make it all easier long term.

Speaking of our journey, we have officially received the green light to move to Rochester. Our team said it’s time, especially after the last few days. On Monday, May 1st we will be on the road (literally and figuratively) to listing our sweet Finnegan for a heart transplant. The process should take under two weeks. We expect that by his four month birthday (May 13th) he will be waiting patiently for the gift of life. It’s bittersweet. I don’t want to leave the care we’ve received here. The doctors and nurses have become a family to us. They love our son and we love them. I’m scared. It’s the unknown. Will they love Finn the same way? Will the nurses hold my hand and sit with me when I need things explained for the 5th time? With the doctors hug me when I’m crying? Will they ask how Asher is and care about us as a family? I hope so. I’ve been told it’s a culture shock and that they do things differently down there. They aren’t a children’s hospital with family centered care, but a hospital. A big machine. But, the machine that will save my son’s life.

Today my son’s heart was referred to as a “ticking time bomb” on more than one occasion. The heart that grew inside of me and gave my son life will also ultimately be responsible for taking it away from him. 

Week after week I listened to that heart beat on the doppler at the midwife’s office while he wriggled around in my belly. I made assumptions based on old wives tales about whether he would be a boy or girl because of this heart beat. Today I am being told that no matter what we do, the heart we grew together just won’t be good enough for him. 

I guess I shouldn’t be so shocked by this. It’s not news. Our doctors have always put this outcome on the table. Regardless, I was still hopeful that it wouldn’t happen. Today Dr. Vezmar told us that the question is not if, but when. Do we wait until he gets older and stronger or do we do it sooner and let the healing begin? He mentioned that we were “lucky” Finn hasn’t had a major event that has put him on ecmo (heart-lung bypass) or that he has other failures due to his heart. That we were able to take him home for a while and he didn’t have an arrhythmia or worse. We are “lucky” not to be forced into this decision in an emergency capacity.

His quality of life will greatly improve after transplant. Immediately, everyone tells me. He will have a lot of anti-rejection medications at first but they will taper off. There will be a lot of appointments but they will be check ins and biopsies, not too invasive (as long as everything goes to plan). All in all, he will have a “normal” life for the most part. Fix the heart, fix the baby. The months of waiting, the days of surgery and the months of recovery are going to be impossibly hard. But, after it’s all over he will come home. He will run and jump and play with his big brother. Finn will not however come home with the heart that is currently beating in his chest.

I didn’t expect this. I don’t know how I missed it. When I look back I think it was always there but I had this blind hope that it wouldn’t be this way. A heart transplant, in my baby? This won’t happen to him, to me. That is something that happens in the movies or on a soap opera. According to Dr. Vezmar it will happen to us and within the next year.

After a long talk about our upcoming reality, he showed us Finn’s echo and that of a normal heart. He pointed out the size, thickness and the turbulence his blood has to overcome to keep his body profused.  I am amazed by our little warrior, he is so tough. His heart takes up 80% of his chest, barely leaving room for his lungs. The thickness of the walls of his ventricles make it a wonder his heart works at all. I need him to know the feeling of a properly working body. He doesn’t have to be tired all the time. His energy should be spent on playing not breathing.

I’m heartbroken and grieving. I am terrified and anxious.This is not the title I expected us to hold. Heart Mom and Heart Baby. I’ve been reaching out to other Heart Moms and am told that these feelings will never, ever go away. But they start feel a little lighter at times. Tonight I am struggling, not only with my grief and anxiety but with the fact that it will never completely go away. This isn’t a temporary setback but the path our life is taking, forever. I don’t want to feel sad. I don’t want to associate my son’s life this way, but I have to accept that this is the roller coaster we are on and never going to get off. Because of that I have to embrace the highs for everything they are and know that the lows will continue coming our way. 

I am lucky though. Not because he didn’t have an arrhythmia or cardiac arrest yet. I am lucky because Finn chose me. I am fortunate that he thinks I am strong enough to sit next to him and hold his hand on this roller coaster. That he picked me to help lift him up when he is experiencing the lowest lows and celebrate the highest highs right beside him. I get to be there through all the achievements he will have, with someone else’s heart beating inside his chest.

One year ago my life was vastly different. We were a little family with a gregarious 18 month old heading to Florida to stand up for my best friend as she got married. I was waiting for you.

Exactly one year ago my life started to change in ways I would not, and still don’t, completely understand. It was today, the very day you were conceived, that your misspelling took place. The anniversary is bittersweet. I wanted another baby with all of my being. After having Asher I knew I was meant to be a mom, that it was my calling. I had never felt so in my element as I did when I became a mommy to that little boy. I wanted that again for me, and for your brother to have a sibling. I wanted you.

I wish I could go back to that day and run a spell check on your genes. To be able to ensure that you would never have this sort of start to life. You don’t deserve to live in the hospital being poked, prodded and looked at like a specimen. You should’t have to be put back together differently to be a normal little boy and to sleep in the comfort of your own crib.

I am so sorry dear Finn. I’m your mommy and I am supposed to make it all better. I can’t.

One year ago you started growing inside me and I wouldn’t change that for the world. I only wish my heart would fit inside of your chest because it already belongs to you.