They are in great spirits right now, Janna is sad that she can not respond to everyone’s comments, but I told her that people don’t expect her to do that. So please understand if you don’t get a message back.
First thing, now is a time for her family. Please don’t just show up at the hospital. Darby isn’t just in for some minor thing and exposure needs to be kept at a minimum. Read More→
Darby just got out of surgery a little bit ago and is now in ICU! Janna has texted me and said the team is in her room now getting her all situated!
Please continue to pray for Darby! Pray that her body accepts this new liver! What a wonderful gift Darby has received! Read More→
Wow!! It’s been a long wait, but tonight is the night! If you have been reading my blog for awhile, then you know all about Baby Darby! As I type this Darby is being admitted for her transplant surgery! At midnight Baby Darby will have a new liver! A new liver! WOW! Read More→
This is a guest post from Janna, the mother of lil Miss Darby…
Hello again, everyone! I wanted to share an exciting event and opportunity with you all. My friend Beth Weaver is donating her Birthday Wish to the American Liver Foundation!
Who is this Beth? Well…. 
Beth, her husband, and three kids live in Wichita, KS. Through my daughter Darby’s journey with liver disease, I have met some amazing people, and Beth is one of them! We stay in touch daily through Facebook. Her 1 year old son, Denim, (who shares my birthday!) was born with biliary atresia, the same disease that has caused Darby to be on the liver transplant waiting list. Denim also helped raise funds for the ALF at his 1st birthday party! Read More→
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!
I know some of you know Darby’s story. Sadly, little sweet Darby is in the hospital today and most likely will stay there through the next week. She has some complications from Biliary Atresia and I’m not sure of all of the details. All I know is that this poor little girl is stronger than most grown people I have ever met.
All of this has made Janna a stronger person. When I first met Janna she was quiet, now she let’s you know what is on her mind and that is so awesome. I am so glad that she is standing up to be sure that Darby is treated! I admire Janna! I think most women would have lost it by now. She just gets stronger and keeps on truckin’.
She is so thankful for all of the online support that she has found for herself and Darby. Online she can find people that have been there and done that. She has met adults that have gotten transplants and she see’s how great they are doing. Some people may not get it. They may not understand the bonds you can have with people online. They don’t get how much the care and support of strangers can really help you through rough times. I get it and so does Janna.
I will try to get Janna to write an update once her and Darby are back home. Until then, pray for Darby….
Darby is home with her family! She is recovering from surgery now. Now, they must wait and see if the surgery helps. From talking to Janna, as I understand it, Darby will need to have Liver Biopsies pretty often to make sure things are working. Janna said that the surgeon who operated on Darby, did his first surgery of this sort like 20 years ago. The girl has still not needed a transplant! That is pretty inspiring news. I will update you all on Darby as I know more.
I did want to post this adorable photo of Darby, it’s amazing how kids go through so much, yet they are still so happy!
Some really good friends of mine are going through a horrible time right now. Baby Darby is 11 weeks old and has had 2 surgeries this week. She has a condition called Biliary Atresia. This is a condition of the liver and will result in her eventually needing a liver transplant.
Monday Darby had a surgical procedure called a Kasai procedure. This is a temporary fix for a serious problem. Wednesday, Darby was rushed back in for an emergency surgery due to internal bleeding, after taking care of this she quit breathing in recovery. This has been extremely difficult for my friends. I want to help and I hope that you do too.
Bobby and Janna live about one and half hours from the hospital. With every minute being so critical, Bobby has missed a lot of work. They have 4 other children, one that is just a toddler. I hope that you can find it in your hearts to help them out a little. Every little bit will help them through this difficult time.
I have set up a donate button that will deposit into Janna’s Paypal account. If you can help that would be great, even $5.00 would help them out. I would also love it if you would post the following banner on your site that links to this post. Thank you so much, and please pray for them.
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