52 Days Old: Daily Update

The day has come! Olivia’s direct bilirubin finally crossed the <2 threshold. Today’s labs show her direct bilirubin at 1.9. Her total is still above 2.0, but seeing her direct down this low is fantastic news. Keep in mind at one point this was 17! I’m not sure if we’re safe to cross hyperbilirubinemia off her problem list just yet, but it sure feels like we’re close.

As a result of the steady decrease, the team is discontinuing two medicines: her Ursodiol and also her Actigall vitamin. We’re excited to get rid of the Actigall, as it regularly has given Olivia an upset stomach. In its place, she’ll receive vitamin A and D on a daily basis. Discontinuing the Ursodiol is a bit of a test. We’ll keep an eye on her direct bilirubin week over week (via her Tuesday labs), and if it begins to creep up again we’ll likely start the Ursodiol again.

In respiratory news: Olivia sprinted for 2 hours last night, and will continue more exercise today. She’s due for a 2 hour sprint this afternoon, and a second sprint this evening around 8PM. In addition to monitoring her CO2 via an end tidal during these sprints, we’re going to advocate for an x-ray at the end of each sprint to see if she shows any signs of atelectasis. Because she had her first lung collapse so earlier in her extubation trial last week (after just a couple of hours), we’re curious to see if she show signs of atelectasis during sprinting as well.

Favorite position to snooze
Hanging out, not ready for a nap
Afternoon nap with mom on Monday


  1. Well, doesn’t that make you feel good! Hope it stays where it should.Happy news😄 Love to all❤️ Aunt Susan❤️

  2. I just love these pictures! Her green outfit is very cute on her. I am glad her bilirubin counts are improved. I also like your plans on an x-Ray after sprinting, good for you & Olivia
    She is so beautiful
    Love Grandma

  3. Awesome news ! So thankful her bilirubin is down! Praying that her sprinting is good without issues. Love her outfits! You are precious Olivia! Love to you all.

  4. In OH now to surprise Elise at her recital. But able to see the update. Saw you loved that little sign l posted. It caught my eye and had to share it. Such a simple but loving message from Him who walked among us, and whose presence I can feel especially when viewing our Sweet Olivia.

  5. The update sounds so great, although there is a lot of terminology I’m unfamiliar with…..I make a list to google afterwards. 🙂

    I would also love to point out how adorable her outfits are and her perfect little head of hair! She’s beautiful and so peaceful! ❤️💜❤️💜

  6. So exciting about the billi news!!! Woot woot 🎉 Sweet Olivia, such a fighter 👊🏻👊🏻

    Loving the captions with each picture and all her outfits! So beautiful 😘

  7. Kicking those bad billi out and now moving forward ! Olivia you just amaze me all the time! Keep on fighting! Love you and mom and dad !

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