Olivia's Story - Our Biliary Atresia Fighter

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

10/10/2025

This little cuddly cutie got a good report from clinics! She is now EBV negative and all lab numbers have now stabilized and are all normal. 🙌🏻 even her hemoglobin is normal, which hasn’t been because so many blood draws. Our girl is thriving and we love to see it. We are so thankful and blessed everyday.

She now says - mama, dada, Bella, Lilly, dog, duck and bath 🛁
She is crawling, standing on her own, taking steps, drinking from her sippy, waving, clapping, eating food and DANCING to everything that remotely sounds like a beat.
She has a new found love of Ms. Rachel.

She’s steadily gaining weight too! ☺️

She will be ONE in a few short weeks. 🥺

09/16/2025

Because Olivia’s donor was EBV positive they regularly test Olivia and today she also tested positive. They monitor her viral load. High EBV levels increase the risk of developing Post-Transplant Lymphoproliferative Disorder (PTLD), a potentially serious condition involving uncontrolled B-cell growth. So they are going to lower her immune suppressing medication to try to give her immune system a chance to fight it on its own without her body going into rejection. Sounds pretty scary but Olivia is strong and it’s just one more small hurdle to get over.

Other than that, she is doing well she has gained weight and her liver numbers are coming down even more. 🙏 

09/11/2025

Today marks ONE month post op. Happy one month liversary. We are so incredibly thankful to our donor everyday for giving our girl a second chance at a happy healthy life. 💚💚💚

09/10/2025

NG tube was removed yesterday. Look at that beautiful face. 😭

Olivia decided to run a fever last night, I called her team and they were going to have us come back in but decided to have us give her Tylenol and wait it out. She didn’t run a fever through the night but is running a low grade fever today. Teething? Normal baby virus? We’re not sure. Hoping we don’t have to go back for another stay. 🙏

Everything looks great on labs except two numbers that are elevated so we’re going to keep an eye on that but her ultrasound looked good so she gets to come off one of her medicines! 👏🏻 let’s hope today goes well and no fevers. 🤞🏻