Olivia's Story - Our Biliary Atresia Fighter

05/12/2026

All liver numbers have returned to normal, not just mild, not just lower, NORMAL! Thank you God.

04/28/2026

Olivia went for labs last week and because they were elevated the wanted repeat labs in a week. We went today and unfortunately they’re even more elevated, we’re hanging onto hope that it’s just from a lingering sickness but the specific labs that are high indicate possible rejection. We are to repeat labs next week and have a scheduled liver biopsy next week. We have also found out that she is anemic and will be placed on an iron supplement. Please pray for my sweet baby.

04/21/2026

Someone reached out to me for an update on Olivia which made me realize I haven’t updated her page in quite some time. We have been so busy with life it’s slipped my mind (and keeping up with two pages was hard! 😂) I do realize that not everyone here is on my personal page so for anyone wondering what’s going on with Olivia? She’s doing great. She’s thriving. We’re still figuring out our “normal” but it’s been so fun and I’m incredibly thankful for every moment. She’s experienced the zoo, going out to eat, the aquarium, story time at the library, birthday parties and so many more fun experiences that even I took for granted before. Her great grandma lives in a nursing home and was unable to visit because of the risk and we got to go visit her for the first time! Every day is a new adventure for her thanks to her donor. Most recently we have changed her bloodwork from every two weeks to just once a month after getting good results! We of course are still cautious with germs and I have the “when’s the next shoe going to drop” feeling of anxiety but we are taking it one day at a time and soaking up all the great moments.

12/16/2025

I unfortunately had a feeling that we weren’t done dealing with the elevated lab numbers for Olivia. Maybe because the anxiety I have from everything that’s happened or because the answers didn’t sit right with me, I knew we needed to look further.

Olivia is still EBV positive. when her liver biopsy was performed they also performed a “stain “test that essentially shows if the EBV is affecting her liver, that test came back positive. I just found that out today. I’m trying to fully understand the big picture here because there’s so many things that go into this and life after transplant is unfamiliar to us so we’re trying to learn the ropes.

The plan for now is to lower her immunosuppressant medication to try to give her body a chance to fight off the infection on its own. We repeat labs on Friday to try to get more answers on what to do next. There really is no medication to help fight off the EBV so we have to hope and pray that her immune system will be strong enough to fight it off on its own. There is the chance of the EBV levels in her blood rising to a significant amount, which would then pose the risk for PTLD, which is what I am most worried about. If you’re unsure what that is its a serious condition where the immune system, weakened by transplant medications, allows lymphocytes (a type of white blood cell) to grow uncontrollably, often triggered by viruses like Epstein-Barr (EBV), leading to lymphoma-like growths. Similar to cancer.

Please say a prayer for my baby.

12/05/2025

We have received the results. Her liver biopsy is rated a 1/9 showing no sign of infection or irritation. Her MRI does show narrowing of her duct but not enough to intervene at this time. They feel comfortable enough with just monitoring it at the moment especially because her lab work today they took today showed her numbers coming down. They’ve tested her respiratory panel and all was negative but she has been sick. Thank you everyone for the prayers. This journey has been full of up and downs and continues to be but I’m so thankful she’s okay.

12/05/2025

She is back there now. She had a rough night. She’s sick, she threw up and has had a continuous cough but they said it was safe to proceed due to the time sensitivity of the tests. Praying everything goes well and the results come back with good news.

12/04/2025

UPDATE - they called with the results. Unfortunately, the ultrasound has shown a potential obstruction/narrowing or one of her ducts. Theyre going to perform an MRI before the liver biopsy in the morning to confirm. Please please please keep Olivia in your prayers. I want all of this to be over.

If for some reason they confirm the obstruction she will require surgery for a balloon stint and external drain to be placed but will know more tomorrow.

12/02/2025

This is the scary side of BA. Just when things are going well and I think we can breath she had labs today and this is why I have anxiety.. her numbers have shot up quickly. To rule out rejection her team wants to do an ultrasound and liver biopsy right away. They’re going to call me back when the have availability for us to come in. Please keep Olivia in your prayers. This is the unknown for us and I’m so scared.

11/01/2025

So thankful to be able to celebrate Halloween and take Olivia out for Trick-or-Treating!

Happy Halloween! 🎃

10/27/2025

We celebrated Olivia’s FIRST birthday over the weekend with her parade. We are so thankful to be celebrating this milestone and having so many people from the community show up for her means so much to us. We can’t wait to celebrate many more birthdays! 💚💚

10/27/2025