Clarissa (Nebraska)

After having waited through 11 years of marriage before being able to have our first daughter, Elise; we were delightfully surprised to again be expecting another child. Clarissa was born the day after our anniversary, and I didn’t realize she was a Saint Patrick’s baby until they put a cute green knit hat on top her beautiful brown hair. Clarissa seemed in great health, was a content and wide eyed baby, and although she nursed well, she wasn’t gaining weight and continued to have jaundice into her second month. At her two month appointment it was apparent that something might not be right, and we went to get Claire an ultrasound the next day. When the test showed no gallbladder or bile duct, we were clued in to a possible biliary atresia diagnosis and sent to Children’s Hospital in Omaha. After further testing and a very long and agonizing Memorial weekend, Clarissa had a successful Kasai procedure and we rejoiced with the doctors and staff over the colorful stools in her diaper. Over the last year Clarissa has been in the hospital a couple times for fevers, but was never confirmed to have any infections. The doctors’ main concern for her has been that she gets enough nutrition to gain the weight she needs. Although the steroids she was on puffed up her face, and her enlarged liver and spleen pushed out her tummy and made a casual observer look at her as a cute and chubby baby, her arms and legs had no baby fat and her growth rate continued to drop. We struggled to coax extra milk into her and boost her baby food with extra calories, but not only does her stomach not have much room, but her decreased liver function and lack of gallbladder keep her body from being able to absorb fats, and so she was not gaining weight. In December we went to UNMC for a liver transplant evaluation, and although there is some high blood pressure backing up blood flow into her spleen, the doctors think Claire is doing very well and decided to try giving her a feeding tube and special formula to boost her calorie intake and see if this would overcome her lack of weight gain. This has made a great difference in her growth the last 7 months and she went from about the 5th percentile on the growth chart to about the 25th. (About where her older sister weighed in at her age) . She found her balance about a month ago and is walking everywhere now. Claire’s smile and big blue eyes brighten every minute of our day. We are so glad that she is off most her medicines and is a pretty typical 18 month old. We still visit UNMC’s transplant team every few months, do lab work often and know that a transplant is somewhere in the (hopefully distant) horizon. Clarissa is such a gift from the Lord, and as such, we know that we can place her in God’s hands and rejoice over the great care she has received.


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