A Year Later

On the eve your first birthday I am overcome with emotion. I've practiced in my head what I wanted to say to you tonight, but now that I sat down to write it the words escape me. Honestly, words truly aren't enough. They will never be able to tell you how I felt then or now.

My heart sinks into my stomach as I relive the first days of your life. The hours after your birth were phenomenal. In the comfort of home you showed up unexpectedly.  I felt like a mama warrior welcoming you into this world without any medical assistance. Nowhere in our birth plan was there a hospital, medication or any intervention. Ironic, isn't it? The intense excitement and pride that surrounded your grand entrance was quickly overtaken by fear and instability. Packing you up in the middle of the night to fight the cold was torturous. I was convinced you were fine and that everyone was overreacting. How could there be anything wrong? You were perfect. You are perfect.

A year ago. Sometimes it feels like a lifetime, others it feels like last week. Your story is filled with so many unique milestones. Most children have baby books telling them of the first time they rolled over, waved bub-bye or sat up. Most children are learning to walk and talk and starting down the road to becoming a toddler. Your baby book looks a little different. I want you to know that different doesn't mean less. Your story is more powerful and meaningful than that of a typical child. You've changed lives, perspectives and the world just by being in it. It was never a guarantee for you. You fought to be here. Every day of your sweet life was a battle and you conquered them all on your own time.

Tomorrow not only marks a year earth-side, but it also marks 6 months with your angel donor heart. That means on January 14th you will officially have your new heart longer than the heart you were born with. It's both miraculous and upsetting. I still feel awful that the heart we gave you wasn't good enough. Saying that you just got "unlucky" doesn't seem like a fair explanation. I will forever be sorry that you were chosen for this life. But I will forever be grateful that you chose me to fight beside you.

Thinking back over the past year there are days that won't ever leave my memories. March 29th, when I brought you in for what I thought would be a long weekend to work on feeding and growing, only for you to catch a cold and take a turn for the worst. April 27th, the day when you were put on ECMO. I will never forget screaming and begging you to stay here. Telling you that I wasn't done with you yet and that I needed you. May 1st, the moment you were listed at Mayo for a heart transplant. I cried so hard. I was both elated and afraid but I knew it was your only chance. May 20th, the last time you nursed. It wasn't much, but you tried. Even on ECMO and after all the trauma you still tried and it was so special to me. July 9th, when we tried to extubate you and failed but Dr. Crow had Kelsey call me to make sure I came and held you before they put that breathing tube back in for what I had no idea would be three months. July 13th, your heart day. The day we had been waiting for, the day that was supposed to make you better. July 14th, the day you died in front of me. When I had to watch the doctors revive you. The day I thought both you and your donor were gone forever. July 20th, the day I was told that there wasn't much more they could do for you. That you had to decide on your own if you wanted to get better. The day that I heard "some times kids just don't respond well to transplant." I didn't get out of bed all day. I just cried. I thought it was the end of your story. August 4th, the first time you were extubated after receiving your heart, just to go through another intubation 20 hours later. August 9th, the first time I held you in a month and the first time you rested in my arms with another child's heart beating in your chest. I remember sobbing uncontrollably. My arm was numb, I had to use the bathroom and I still refused to move. I didn't want to ever put you down. August 12th when you were extubated yet again. This time I was sure it was for good. You lasted just under a week before rejection hit you for the second time. August 17th, another rejection episode. This one came with pulmonary hemorrhage. We just had to wait and see if it got better. The wait seemed so long. September 4th, your care conference. The one where we decided that a tracheostomy would be the only way to get you home. The trach moms that rallied around me to reassure me that it would be okay, that we could do this. September 5th, when I called CHOP and demanded a second opinion before we went down the road of yet another intervention. September 14th, the day you were finally extubated. FOR GOOD! Also the first time you left your ICU room for something other than a procedure. We took a wagon ride around the unit. I never thought I could be so happy. September 25th, the day you went off all pump medications and Daddy got to turn off that terrible Precedex. I hated that medication so much. September 28th, big brother Asher's 3rd birthday and your first time outside since March. We took a walk in the courtyard and you weren't so sure about the breeze or natural light. October 1st, your first day without any oxygen. We had gone from planning surgery for a trach to no O2 at all in just under a month. You continued to surprise everyone. October 13th, the day we finally left that damn hospital. It felt so surreal not having a nurse trail behind. For 10 days it was just you and me kid. We stayed at the Ronald McDonald House and just played and snuggled while I tried to figure out all your medications and accessories. It was terribly overwhelming but worth every moment of stress. October 23rd, we finally came HOME to St. Louis Park. Only to turn back around due to your g/j tube coming out. October 24th, HOME again - this time for good! November 13th, home nursing started and I was finally able to go back to work full time. Normal. You celebrated one month free of the hospital in the comfort of your own home. December 5th, we started to transition you back to breast milk from that terrible Monogen formula that they had you on for your lungs. December 24th, your first full day of breast milk. You tolerated it so well that I was almost angry we had to wait so long. December 26th, we went to the ER because you couldn't keep anything down and were inconsolable. The doctors told me they were admitting us and my PTSD came back with a force. I bawled and I was terrified. Was this the beginning of another long stay? NO! We actually left that same day.

Now, here we are - today. The dates I rattle through from memory are the big ones, but to me every day with you is important. You've earned every one of the good days my love and I plan to fill your life with the best ones. I don't know how to thank you for fighting so hard. You're so important to me and I don't know if I could have made it if you didn't survive. You light up a room with your gummy grin and infectious laugh. You look at your brother like he holds the world on his shoulders, and he would for you. You love your daddy and look for him in a room if you hear his voice because you know he is about to do something goofy. You whine, just so I will pick you up because you never want me to put you down again.

Sweet Finn, I love you and you I love who you have made me become. I wish I could take away all your pain and suffering but I can't. Instead I promise to give you a life worth living. A life that you will be grateful for and one that your donor family will be proud of. I promise to love you every day, especially on the hard ones. Thank you for staying here with me.

Happy birthday my hero, my heart, my love.

Photo credit: Chubby Cheeks Photography

January 12th, 2018


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