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Two in a row, Now we wait: July 12, 2012

July 13, 2012

Oliver is completely off the Nitric Oxide. It’s gone! When you give a baby nitric they don’t produce it on their own, but when they don’t have it they do. So it got weaned away today and he tolerated it! They go from 20 to 15 to 10 to 5 to 4, 3 2, 1 and then 0. One to zero can be dicey. But our Ollie rocked it! Amazing. Two good days in a row! They also weaned his oxygen down to 35% which is the lowest they think they’ll even go until after surgery. His 1/3 of one lung is doing pretty well these days.

He’s off his calcium drip, the antibiotics, and of course the nitric. It’s amazing to see so many less things being pumped in to him. He’s got lipids (fat), fentanyl (super strength morphine), prostaglandin (to keep that valve open), and TPN. TPN is his food, and now that there’s so much less stuff they can put more TPN in him. I didn’t know this, but he was basically on a low calorie diet before because they couldn’t fit any more volume in him. Now he’s up to his full nutritional requirements! Yay for not being hungry!

He had Ruth as his nurse today and yesterday. She put on CDs for him now that that noisy ventilator is gone. Led Zeppelin Lullabies. Seriously, it’s a thing, look it up. He loves her and behaves really nicely for her. And last night and tonight he has Sam, who chills him right out. These people are all amazing. And their calmness provides a good balance to my spaziness. We haven’t seen a lot of the RTs lately. That is an excellent thing. It means he’s not being super needy!

This morning in rounds they mentioned the S word. I wish they hadn’t. It got me all anxious. They did an echo though, and his right sided pressures in his heart are still too high (pulmonary hypertension). That valve they’re keeping open with the prostaglandin is to relieve some of the pressure. They’re hoping that the high pressure goes away on its own. Apparently that’s a real possibility. So now we pray. Really really hard. Please.

I have to say again how blown away we are by all of you. The kind words and thoughts and food and gifts and help are actually overwhelming. We don’t know how we can ever repay you all for your kindness. If ever anyone has any doubts about their faith in humanity send them my way and I will show them 1,500 people (thats how many of you there are) who will restore it.

Xo

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Tape free face!

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Cutie pie shoes

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Angry Ollie blowing bubbles

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8 Comments
  1. Sarah permalink

    Gosh, he is so beautiful, Alex. So happy to hear good news two days in a row.
    Still thinking about you guys every day!
    xo

  2. Joan Tyler. permalink

    Dear Alex, you certainly gave birth to a good fighter with the help of the good God.
    May Oliver keep improving day by day and may you and Tim enjoy good times with him each day.
    God love and bless you all.

  3. Way to go Oliver! It sounds like you’re making good progress 🙂
    Prayers from Ramsey’s mom, Lisa

  4. Susan Wesson permalink

    Mr. BUBBLES! Awesome.

    God bless you all. Love you so much.

    Susan

  5. Belle permalink

    Gooooooo OLLIE BOY!!!!!

  6. Such a lovely update! Yayy for surgery very soon and then feeding and then home. Yayy!!!
    Anu
    http://ourcdhherolittlea.wordpress.com/

  7. Audrey permalink

    What a precious boy you have, all your pictures make my heart melt! As a new mom myself I can just feel the emotion in your words! I’m unable to read your posts without crying…but I suspect that’s the hormones! Oliver is truly blessed to have a family loving him and fighting for him! Keep fighting wee Oliver…you can do it! Your all in my thoughts and prayers!

  8. medstudentitis permalink

    I’m so happy for you guys!

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