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Rocky: July 3, 2012

July 4, 2012

“Some kids start off rocky and then they just start getting better. Some kids have a rocky start and then stay rocky.” So Oliver’s rocky? “He’s rocky.”

He’s rocky. These words really shook me today. Of course he’s rocky. I knew he would be. But I’d sort of convinced myself he was doing great. He’s doing more “ok” than “great”. He is exactly as they predicted from the ultrasounds. He is a text book 50/50 CDHer. I wanted to believe he’d secretly be a 60/40. But he’s not. And that’s ok. Cos 50% is 50%. If I wanted to believe they could be wrong and it would be in his favour, I had to allow for it to work against him too. Neither of those happened. CDH isn’t great. He’s critically ill. But great doctors and great nurses are doing great things for him and he is doing his best and that’s all we can hope for.

As far as the medical stuff goes, basically he’s doing exactly how they thought he would. They’re managing to maintain his sats, it’s taking a lot of drugs. He got some blood tonight instead of albumen which is what they’d been giving to keep his blood pressure up and that seems to be working. His urine output isn’t great and he’s super swollen but for now they’re keeping it that way cos if his swelling goes down so will his blood pressure. His echo shows a defect-free heart which is fabulous, but the right side is having to work harder than is ideal because of his not so good lungs. For a minute his heart rate went super high which could be a bad sign re: his heart, but they ran some tests and his calcium level was a bit low so they’re blaming it on that for now. Great news as calcium is way more fixable than heart. It turns out in my second strep b test I was positive (negative in the first one) so he has to be on antibiotics for that. But they started them as soon as he was born so we’re not supposed to worry. He hasn’t had a fever or anything. Apparently the two hours between my admission & his big appearance wouldn’t have been long enough to deal with it during delivery even if they had known so everyone’s saying its no big deal.

I got to give him a sponge bath today! It was so so so fabulous! They let me wash his hair and clean his ears and all his little folds and I loved every single second of it. I was grinning like an idiot the whole time. We’ve both given him about a million kisses and we’re working on telling him about all the different awesome things that are waiting for him when he comes home.

There were some things that gave me hope today. They were able to reduce his norepinephrine today. Just a bit but still. He was up and down on the oxygen settings on the ventilator but he’s overall on less than yesterday so that’s an improvement if only a small one. And finally he seems to tolerate it alright when they take him off the ventilation to suction his lungs. That’s more just as expected rather than good news but I still think its hopeful.

Keep praying! He really needs it and it’s totally going to help him. Thanks so much everyone. We’re blown away by all of you even if we’re not so great at staying in touch right now.

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Heart sticker tape

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Pretty swollen but a clean head of hair!

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7 Comments
  1. Alex Mac permalink

    Oliver seems a lot like Poppy, beautiful, feisty, and full of heart. Lots of love, positive thoughts and strength your way.

  2. Ann Friedman permalink

    Hi Alex, Tim, Poppy and Oliver,

    Just wanted to let you know that you’re all in our hearts, thoughts and prayers. Thanks for keeping your blog up with the latest news about our new family member. Your updates are most appreciated. Best wishes and continued strength to you all. Xo Ann & Julia

  3. Rocky Is expected I guess, but he is doing good overall. So So great that you guys got to give him a sponge bath. Most places won’t even let you touch the baby. Rooting for little Oliver.

    Anu
    http://ourcdhherolittlea.wordpress.com/

  4. 40deuce permalink

    Hi guys,
    You’re killing me while I read this at work, but I have no doubt that all this heartache will be a moot point soon enough. You and Tim both have strong genes and I have no doubt that Oliver has them too.
    I love you guys so much and am thinking and praying for you.
    I can’t wait Oliver to be ok (because I know he will be) so you can bring him home and I can meet him.
    Keep your heads and thoughts up!

    -Sheldon

  5. Rejeanne permalink

    Hi Alex,
    Thank you for keeping us posted…my first thought was maybe he is Rocky…a fighter! And he will be okay. Give him a kiss from me too!

  6. James permalink

    You two are an example of how strength and love can help you in difficult times. Leah and I are thinking of you all the time.

    We are blessed to have such a good example of parents (our age) to know how to handle our lives when we start our family..

    xoxo James and Leah

  7. Diana morgenthau permalink

    Tim and Alex
    I just read your blog for the first time. I am praying for all of you. Alex your strength is at true reflection of the love you share with your family. Oliver is so lucky to have all of you. He is a beautiful baby…..diana
    Ps Rocky was a real fighter too.

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