“Not if, but when...”

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.

April 21, 2017