Update on Baby Darby!

This is a guest post from my friend Janna, mother of Baby Darby…

Hello everyone! I’m long overdue in posting an update about Darby, but as in most cases, no news is good news!

I’ll start with the back story that many of you already know. Darby was born healthy but jaundiced. At 11 weeks of age, she was diagnosed with biliary atresia, which is a rare liver disease, and she received the Kasai procedure to buy time until her inevitable liver transplant. You also may recall she had a life-threatening bleed repaired following the first surgery. At Darby’s age, the surgery was unusually successful in restoring bile flow! This is why Darby is no longer yellow, as most babies with liver disease are. Too much damage and scarring (cirrhosis) had already been done to Darby’s liver, so she developed portal hypertension, which causes a build up of fluid in the abdomen (ascites.) We also discovered she has severe allergies to milk and eggs. Many BA babies will need nutritional assistance through a feeding tube, and in March, almost 6 months ago, Darby went back into surgery to drain significant ascites and get a g-tube.

Since my last update, Darby was referred to the transplant team in Dallas. She underwent an extensive evaluation, and they unanimously decided to actively list her on the transplant waiting list. During the testing, they discovered she had a few heart conditions that will only be monitored, not treated. Currently, she is being followed and receiving lab draws monthly. She has a low score, but could receive the call any day. The g-tube has had a few complications, but has allowed her to gain weight and grow very well! She is allowed to eat as many solids as she can. Six weeks ago, Darby began crawling and now she’s cruising and getting ready to walk. Things are going great for us right now, and I pray that she will continue to stay strong and healthy until she receives her perfect gift. Thank you all for your prayers and well-wishes for Baby Darby!

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Girl on Fire

Photographer at Loudmouth Photography

Brandy is the wife to a carpenter/musician and the mother of 3 amazingly awesome homeschool/unschooled girls. Brandy is a Photographer as well as a Coach for the Weebellion as part of Rolling Rebellion Jr. Roller Derby. Brandy is passionate about many things and suffers from a very painful and degenerative neurological disease called CRPS/RSD.

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