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My little fighter: July 7, 2012

July 7, 2012

Oliver officially has a nose now. And it’s super cute. The swelling has gone down so much, he looks way more like a baby. And without the muscle relaxants he opens & closes his eyes, wiggles his toes, and moves his head a bit. It’s so nice. He was wide awake this morning and we had a great little chat. Then I read him a story that bored him back to sleep. He’s doing ok being off it. He’s still on a hefty dose of sedatives, but tolerating awareness is a good sign. Also, he had his first poop today and I didn’t have to change it!

His right side heart pressure is still too high. They were hoping the prostaglandin would solve that but all newborns have high pressure for the first 14 days or so, so we’ll wait it out. If it doesn’t get better there’s always Viagra! He can’t have surgery with these pressures so we will probably have a bit of a wait. Still no answers about the lowered platelets.

We’re also going to have to get off the high frequency vent and hopefully the nitric oxide. His o2 is down to 50 or less today, and they’ve reduced the nitric to 15 from 20. His mean airway pressure is around 12. They keep challenging him on all of these and he keeps doing ok so I’m hopeful.

Oliver is my hero. Every day he overcomes more than most of us will in a lifetime. He is fighting SO hard to stay alive and his strength is so inspiring and energizing. I love him so so much and am so lucky to get to be beside him on this journey. He truly is an amazing little boy. Every minute he’s alive is a miracle and I am so grateful for each and every one of them. xo

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A nose!

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His tummy was so swollen before it was eating his belly button. It sticks out now!

They are teeny tiny baby steps, but they’re forward.

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6 Comments
  1. Lani permalink

    He looks so much like Poppy! I’ve been thinking about you guys non-stop since Oliver was born. I look forward to all of your updates and am still thinking lots of positive thoughts for him. He is a great little fighter!! Hugs Alex!!! xox

  2. Oliver is looking great! He’s made a ton of progress already. Praying his pulmonary hypertension will come down–Viagra worked great for Bonnie if he ends up needing it!
    Keep kicking some CDH butt, Oliver!
    Leslie

  3. Every little achievement is a step forward. So proud of him. So proud of you. Love, Susan

  4. Each step forward is good! Keep fighting little boy, keep fighting!!! He has made so much progress which is great!!!!

    Anu
    http://ourcdhherolittlea.wordpress.com/

  5. Rejeanne permalink

    I love his blue eyes, and his cute button nose…he really is a fighter!

  6. Joan Tyler. permalink

    As you say “he truly is an amazing child’ and I would like to add that you are an amazing Mum !!!!

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