Love, Allison

 “Dear NICU Mama, As another year comes to a close, I hope you celebrate your ability to keep going.

The path set before you and the trauma trailing along behind you may feel overwhelming. Some days you might not be sure where strength for the next step along your journey will come from. The "I can't handle this" thoughts creep in, but I hope that in those moments you remember how far you've already come. You have already handled so much, no matter where you're at in your NICU journey. Every step and breath you take that moves you forward is a sign of incredible strength.

You keep going, and that is an amazing feat worth celebrating.”

Love,
Allison

More of Allison + Amos’ NICU Journey:

 “On August 15th, 2020, my son, Amos, was born via emergency cesarean section at just 25 weeks gestation. The beginning of his NICU stay was acutely difficult, but we eventually got into a smooth patch and did our best to wait patiently for each milestone. Around 35 weeks gestation Amos was transferred to Boston Children's hospital to be checked for a rare liver condition called biliary atresia. At the time things didn't quite line up to point to biliary atresia, so Amos was transferred back to our home NICU to finish out his stay. 

Amos came home in early December 2020 and while we were so happy to finally be together as a family, his lingering liver issues loomed over our heads. He had labs drawn fairly often, and his liver function tests didn't look better but didn't look a whole lot worse. He struggled to eat enough and gain weight despite the added calories to his milk. He was either crying or serious, rarely ever anything in between, and could barely attempt to play with any toys. He was miserable, and so were we. Then one day after a lab draw with drastically terrible results, our lives changed again. Amos' health deteriorated quickly and not long after we officially heard the word "transplant," he had to remain hospitalized until his gift of life came. On May 17th 2021, Amos finally received a second chance at life thanks to a selfless donor.  

Amos has been hospitalized multiple times post-transplant and treated for acute rejection once.  He has had his blood drawn more times than I can count and many, many procedures. We had to give Amos blood thinner injections twice a day at home for 8 weeks, and he has been on more medications than I thought was possible to give to one baby. He also had quite the journey learning how to eat again after being on TPN pre-transplant and then fed via an NG tube post-transplant. Amos might not be as close to a more "normal" life as I hoped he would be at the close of this year; however, I can't feel anything but gratitude watching my precious children play together in our living room as I write this story. Amos is so full of life, so full of joy and hope. He and I have come so far, and if there is anything I know for sure it's that we will just keep going.”