Today is my 38th birthday. Life doesn't look like what I once envisioned but I am so thankful for where I am. Two months ago our precious Hollis was on a ventilator fighting for her life, and today she is home, running around full of energy and joy. This has been the greatest gift– to witness her come back to herself, to heal both physically and mentally from such intense medical trauma. It’s beautiful and truly miraculous. 

We have been home almost four weeks now since Hollis’s second hospitalization for the accumulated fluid in her lung and belly. Since being home she has done very well overall but did require a blood transfusion after some low blood counts (likely related to one of her immunosuppression medications) a few weeks ago. Today's labs showed continued low counts but not requiring transfusion at this time.  Her kidney labs came back and confirmed the decreased function as was suspected – these will be repeated when she sees nephrology at the end of the month. If they are still at the same levels they will diagnose her with chronic kidney disease at this point and we will take further protective measures for her kidneys to try to prevent further damage. Please pray her numbers improve by the end of the month. She has been through so much and I hope her resilient little body can continue to bounce back. Her spirits are high and she is back to her silly littler self and we continue to pray daily to be able to remain at home.

Hollis really stole the show as far as updates for the last few months (for good reason!) and so many of you have been asking about sweet baby Hazel. 

I haven’t shared many details about her story, mostly due to the amount of unknowns and total panic it brought on when thinking worst case scenarios for our baby. I finally feel at a place to talk more openly about it after the absolute roller coaster since October. 

Due to how rare Hollis’s condition is and the extensive genetic testing completed at multiple hospitals (that revealed no genetic link) we were told it would be highly HIGHLY unlikely that our second child would have the same condition. I was anxious anyways but told myself the odds were greatly in our favor and prayed for a healthy baby. 

Hazel was born October 17th and completed our sweet little family. She was perfect. She was not jaundiced at all and I felt certain she had a healthy liver. At 24 hours of life it is standard practice to check both indirect and direct bilirubin levels on newborns. This was not the case in 2019 when Hollis was born which led to her later diagnosis. When the results came back we found out Hazel’s direct bilirubin level (liver disease red flag) was high. It wasn’t crazy high, but it was high. I felt immediately sick and overwhelmed with fear that the girls had the same condition. Hazel was otherwise healthy so we were discharged and told to follow up with our primary care provider the next day for a repeat bilirubin level. The next day we were devastated as we saw her bilirubin level had doubled then continued to climb over the next week. Postpartum hormones and grief are a rough combination and to be honest I was an anxiety riddled mess. The next step was having Hazel be seen by Hollis’s liver doc, getting genetic testing and scheduling a liver biopsy to make sure it was not the life threatening condition biliary atresia. Hazel’s genetic testing came back negative for conditions that would explain the high bili level and we proceeded with the biopsy on November 21st. Infants need to be at least 4 weeks old in order to go under for a biopsy and it requires an overnight stay in the hospital. A few days later we got a call that the preliminary results showed no biliary atresia but there was bile duct paucity seen on biopsy, which is what Hollis has and what was somewhat expected at this point. Our doctor told us from the biopsy it appeared more mild than Hollis’s but only time would tell us if it would progress in the same way as Hollis’s and she too will need a transplant one day. 

The next week we took Hollis for her liver transplant evaluation and learned it was time for her to be listed for a new liver. These weeks were HARD. 

I am grateful to share that since November Hazel has had two normal liver ultrasounds, and normal labs twice in a row. This is HUGE and nothing we ever experienced with Hollis. Her doctor told us with bile duct paucity she generally sees it go one of three ways– either the paucity is so severe and the bilirubin is unable to clear so they end up needing a liver transplant in the first year of life, the bilirubin levels stabilize but liver disease progresses and they slowly develop portal hypertension over years leading to eventual transplant (the case with Hollis) or the levels normalize and no treatment other than medication is needed. Right now it’s looking like the third option for our Hazel girl – praise Jesus. This is the best case scenario and we pray she continues this way.

I have told myself hundreds of times over the last months that I can do this, I can do it all again with Hazel if needed. The truth is, of course I would go through it again, I have no other choice, but I pray with everything I have we don’t have to do it again. Today we celebrate the wins the last weeks have brought. Thank you for your continued thoughts and prayers for our girls and being there with us during this journey. We are so, so thankful for you all.