COTA for Team Alice

Our Story

As always, we thank you for your encouragement, kind words, donations to COTA and emotional help!  It has been a long journey made easier by family, friends (Team Alice!) and COTA!  Alice’s liver function is so.o.o. good and you can tell she is feeling so much better!  She had a mild rejection incident but has been treated and released back to Ronald McDonald house where she is undergoing physical and occupational therapy.  We think her occupation will be “happy baby” for a bit longer. She is getting good reports from the liver team, and I don’t want to jinx it, but the doctors seem to think we may be back to Yuma in time for Christmas!

     Warm regards,

         –  Tara

 =========================================================================

ORIGINAL OUR STORY POST

Alice Marie was born July 9, 2018 when she decided she couldn’t wait any longer to meet her family. (She was due on July 30th.)  Alice has a 16 year old sister and brother who live with her and adore her and a 6 year old brother who loves her very much but lives in another state!  

From the beginning we knew she was going to be a fighter. She had some complications at birth and a few more during her first two days in Yuma Regional Medical Center NICU. She was jaundiced which is not too unusual for a premature baby but they couldn’t get her bilirubin to go any lower. Alice spent 11 days total in the NICU.  

We brought her home from our local hospital on a Friday. She saw her pediatrician the following Tuesday for follow up labs requested by the hospital. Mom and Dad took her to get blood drawn on Friday afternoon and by Friday evening her pediatrician had the results. The numbers weren’t looking so good. Alice’s pediatrician, Dr. Rathle, reached out to the Heptologist at Tucson Banner University Hospital. 

Our initial visit to Tucson was only going to be an overnight stay but Alice ended up having 3 major surgeries, two of the surgeries being emergency status. Mom was able to come home and visit after the family had been separated for 6 weeks. It would end up being a total of 16 weeks that Alice was hospitalized and she was home in time for the holidays.  Her diagnosis was biliary atresia.  Most children with biliary atresia need a liver transplant at some point but we hoped to get her to age 8 or 9 for a better outcome.

Our family has seen its ups and downs. Just in January, during a scheduled follow up appointment, she was admitted for failure to thrive as well as an infection that had started as a common cold. 

It has been a scary journey at times and a total immersion into the language of medicine. However, it has taught us to appreciate every moment with her and her siblings.  

In early February, Alice was hospitalized for a week for her Liver Transplant evaluation, and was placed on the transplant waiting list. She also got readmitted for 3 weeks, again, for failure to thrive. Her liver doesn’t break down the vitamins and nutrients and fats so they can be absorbed by her body. So, maintaining weight gain and overall health are our biggest concerns now.  She needs a liver within a year as her Kasai procedure was not successful.

We are currently making contact with Stanford University in Northern California to see if she is a candidate for their living donor program which would offer additional opportunities for a liver.  

We are enjoying her spunky personality and her infectious laugh, happy that she is currently at home, and we wouldn’t trade her for the world!

• Tara aka Alice’s Mom!