At times I wonder why I disclose so much of Annika's health journey in a public (albeit lightly trafficked) space. Writing certainly helps me process. The stories help us remember and weave these experiences into our family history. The blog connects us with friends and family. But I think it's even more than that. In many ways, this journey has been a lonely one. It's rare to meet someone who personally understand what it's like to have a seriously sick child. A piece of me hopes that someday someone will find this blog, read Annika's story, and gather comfort from the shared experience.
Here in the hospital it's easier to find community. Yesterday Jason and I dropped by a lunch gathering for parents with children in the CICU. While I'm all about the free lunch, I think the real reason I wanted to go was to connect. We were a small group, but as we went around the room introducing ourselves, three of the other families had undergone heart transplant, including a family whose daughter was transplanted at age 11.
While still a hard moment, it was comforting to feel like we are not walking this journey alone.
Late this summer, we noticed that Annika's chest pain was becoming more frequent and increasing in intensity, Her cardiac health was starting to frustrate her. She couldn't play tag with her friends, she stopped bouncing on the tramp, and walking home from school made her super cranky because it would hurt. She broke down after play practice one day because the choreography was too much. After getting a scare from some lab work that was uncomfortably elevated, we decided that it was time to renew the conversations about heart transplant. A year ago we created this list of indications for when it was time to list. While we haven't met every parameter, we are definitely toeing the line.
This time Annika participated in the heart transplant evaluation with us. These were some challenging conversations, but I felt peace that we were proceeding down the right path. Then a couple of days ago I started to have major doubts. Transplant is just so complicated and final. I told Jason that if this was the right course of action, I really needed God to let met me know. Then I backtracked and said that maybe I didn't want that because I knew what an answer might look like.
Less than 24 hours later Annika's heart stopped.
While this was not the answer I wanted, I believe God heard. Even with the wrenching ups and downs, God is keenly aware. I've had strong impressions that our Heavenly Father knows each of these heart transplant kids and that he has a plan for them. I recently read an article about a twelve year-old girl from Davis County who received a heart after six hours of being listed. I don't believe that's just coincidence.
I don't expect (or even want) Annie to receive a heart immediately after being listed. Heck, I don't want her to be listed at all. As Annika put it, this is the worst "Would You Rather" scenario ever: a transplant or imminent risk of sudden death. However, I am placing my trust in both God and her medical team, all of whom are communicating that she needs a new heart sooner than later. I know our little girl has Heavenly Parents who cherish her and want the best for her. But down here on earth, she has two parents who desperately love her too. Praying for the faith to get through this.
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