We called the NICU just a few minutes ago for an update. They were able to wean the pressure on the oscillator which makes it a little easier on her lungs. Her oxygen level is set to 82% but is constantly being adjusted by the nurse depending on how she is doing. In the last 24 hours it has varied from 54% to 100%. Juliana was a little too excited yesterday and pulled her breathing tube out on her own! They quickly fixed it and took the opportunity to rotate her in the isolette. She is getting a little more fentanyl now so that she doesn’t get as agitated. When she moves around too much, it can cause her blood oxygenation to desaturate. Her dopamine has  been turned down even further and they are hoping to wean her completely soon. As long as her blood pressure stays steady, they will be able to take her off it. The exciting news is once she is off the dopamine they can begin to feed her small amounts of milk! They start out at 0.5 ml per hour to get her stomach primed and ready. It is such a tiny amount, just a few drops, but we are excited that she will soon be able to do it. Jen and I will be heading back down to Baltimore for a few days later today. All the grandparents and relatives left this morning. I’ll have another update after we see her today.

Update: We spent a few hours with Juliana this evening. Since I’ve had some requests to get a little more technical, I’ll try to keep up. Her dopamine was turned down from 3 to 2.2 when we first arrived. Her oscillator settings were turned down from 13 Hertz to 11 Hertz with a 13.5 pressure. They had a chest x-ray on order just to make sure that her breathing tube was placed correctly in her trachea. When she had the chest x-ray, she didn’t really like it. She desaturated her oxygen for about 45 minutes while the nurse checked through a list of possible adjustments. She went as low as 55 at one point, but by the time we left it was in the low 90s. She had really good “wiggle” throughout, which is kind of an indication of how she is shaking from the oscillator and shows whether it is working properly. Just for fun, here are some of the things the staff can do with your baby while she is desat’ing:

  • Suction her breathing tube.
  • Check her O2 sensor on her foot and switch it to a hand to check if it is working properly.
  • Turn up her oxygen levels to 100%.
  • Take her off the oscillator briefly, bag her, and manually respirate her.
  • Check her x-ray for positioning of the breathing tube (might just be perfectly placed).
  • Make a small adjustment to the oscillator.

She resaturated after all of that and was doing fine as we left. Some new parents in the NICU that we met earlier looked terrified as they watched. They will soon learn about the roller coaster ride that is the NICU.

21 thoughts on “11/08/09

  1. You guys tell little Julianna that the whole HVA family says “YOU GO GIRL!” So glad there is continued progress!

  2. Go Juliana!! Sounds like you have a nice strong willed little girl on your hands…..yea!! 🙂

  3. We are so excited at Juliana’s progress. We will continue to pray for her.

    Uncle Bill and Aunt Barbara

  4. Dear Jennifer and Jason,

    We are praying for your little Juliana. We are glad she is getting stronger! I like our name! : )


    Julianna Lu Miller

  5. Jason & Jennifer,

    So exciting to hear that things are progressing for Juliana. We look forward to each update. We’ll continue to keep praying for that sweet baby girl. I can’t wait to see more pictures! Love you all lots!

    Lynette G. & Family

  6. Yay for Juliana!! She is a fiesty little thing. Thanks so much for the daily updates. I’ve made your site my homepage.

    I send you lots of hugs, love and prayers

  7. You sound like you are becoming experts in the NICU! I’m very impressed with your knowledge! It sounds like she is making progress. We are praying for you both and especially for Juliana!

  8. Thanks for the technically updates even though I have no idea what they mean – can you also provide a “Dummies to NICU” version, too?! 😉

    Glad to hear things sound good and that you guys are staying calm and strong – especially for the newbies!

    We may never know God’s reason for why all this is happening, but know how many lives you guys have touched! Keep praying for Juliana’s continual strength!

  9. Praying for Julianna and for mom and dad. May God hold you all close and give you comfort and strength.

  10. I’m so glad Juliana is doing so well! I thought of you guys a lot today and prayed for you each time.

  11. So, now you are the strong “been there, done that” parents in the NICU, giving strength to other parents. Bless you Jen and Jason! As the sun rose this morning I lifted a prayer for you, and then hurried to my computer for an update. “The Lord bless you and keep you. The Lord make his face to shine upon you, and give you peace.” I’ll be thinking of you all day.

  12. You are becoming experts!! I had to laugh as I read your last paragraph to your update. Only parents who have been through so much (hospital wise) can understand. We are the same with our boys after 19 trips to the ER for stitches, surgeries, etc. in their first four years of life. God will continue to bless! We are still praying for Julianna and for you both.

  13. You tell ’em Juliana, but be nice to your mommy & daddy! Great update, Jason. It brings back my days of book-length pregnancy/NICU emails, trying to communicate to the medical and non-medical alike. 🙂 Love you guys!

  14. Jason,
    Thank you for the updates and you are doing a good job with the technical stuff. I’m not in medicine though.
    Rest up and tell Jennifer hello too.

  15. Hi Jen and Jason.

    So glad to hear Juliana is fighting (If you need advice on how to deal with a strong willed child I have 25 years of experience specialized for girls) haha

    I have Settlers of Catan on my iPhone I’m itching to play with friends, so hopefully I can visit you both soon. 🙂

    Thanks for the updates!

  16. Dear Jason and Jennifer,

    You are both in my prayers, as is Julianna. You are so inspiring in how you are handling the stresses of the past days and weeks. Keep on fighting, Julianna, very special child of God.

  17. Prayed for your precious Juliana this morning for worship. Glad she is doing good. Love all your detailed posts. After working in the NICU for 8 years, then having a 27 weeker, it’s nice to hear a “full” report!;) Although my experience pretty much made me more worried! It’s so good you are involved! It will help Juliana grow and thrive. It’s amazing what a difference loving parents make!

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