Six month liverversary!

Six months ago today I walked into the OR at Boston Children's Hospital holding my youngest daughter. I held her hand as they placed the mask on her face waiting until she fell asleep before leaving. Whispering that it was ok, that I loved her and would see her when she woke up. That her new hero liver had arrived and she was in good hands. As I left that OR to begin the 10 hour wait for the surgery to be completed, I said prayers of thanksgiving that the day had arrived. That she had made it. That her miracle was literally unfolding before my eyes.

Entering the family waiting room on the third floor I saw eyes and faces that mirrored my own. Fear, joy, thanksgiving, hope. Over the hours, families began to dissipate, until late afternoon when there were just two of us left. The family sitting next to me was awaiting the completion of their son's brain surgery. A procedure to remove half of his brain in hopes of curing the deadly seizures that were racking his body day in and day out. We both experienced enormous sighs of relief when our children were finished around the same time. And were taken to the same ICU where we would rejoice at our mutual surgery successes. His mom and I checked in on each other until we were both moved to the regular floor on the same day several days later. It was nice to have someone who knew the exact emotions I felt, at times without either of us even saying a word.

Hope's team has characterized her post transplant course as "rough". They have met and decided that due to all of her complications we are not to go to do volunteer orphanage work in China this summer as we had hoped. Just this week, Hope's liver function tests are again worse. We are back to weekly labs under a very careful eye of our team. Thankfully, they were able to rule out PTLD in her tonsils and adenoids this week, a huge mercy. That said, PTLD continues to be a real risk and we are having bimonthly checks of her lymph nodes, which is one of the primary spots of manifestation. There are times when the worry tries to sneak in, and I must purposefully focus on Him and live in our now.

Looking at my baby girl, no one would ever suspect that this battle is being waged in her body. She is so happy. She loves life and energetically explores and interacts without a care in the world. She exudes joy and draws people in. She is a miracle, through and through. A miracle for the world to see. We cherish the gift of life our donor has given to my precious baby, and take not a second for granted. Though our "rough course" continues without any end in sight, I would not change a single minute of it. She is worth it. We are living life. And we are so grateful to be able to live it.