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Sitting, Waiting, Wishing: July 19, 2012

July 20, 2012

Oliver had a pretty smooth day today so of course now I’m terrified of that horrible drop on the roller coaster. It was easier to be hopeful before. Fear takes hold much more quickly now. As he gets older and bigger and more aware, he feels more and more like a normal baby. He moves like a normal baby, looks at me like a normal baby, feels like a normal baby. He is gaining weight appropriately and it’s not just fluid. It’s hard to believe that this perfectly formed little human’s lungs could betray him so badly. The thought of ever losing him gets harder to bear as he is allowed to be more awake and his perfect awareness shines through. CDH is a horrible, hateful monster and I wish it could be wiped from the face of the planet. Oliver Wesson is a perfect gorgeous shining little light and I pray he is allowed to stay.

We had our meeting with Dr Mema and Dr Himidan (his surgeon). They agreed with each other that with Oliver’s fragile nature he is not a weekend surgery baby. Dr Himidan is more eager to get in there and fix this problem while Dr Mema wants to be completely sure that he is as stable as he is going to get. It is amazing to watch two such brilliant women want the absolute best for my baby knowing that they are working together to send him home with me. Dr Himidan is hoping to do his repair soon, but Dr Mema wants him to prove that he is strong enough. He can prove that by being stable on lower settings on this ventilator.The concern is that he’ll be on high settings, have a crisis, and be forced back on the oscillator (no surgery). If he’s on lower settings they can keep him on the conventional ventilator. When I asked about more negative outcomes they assured me that we’re not there and we’ll have those conversations if we need to. It was good. We felt better, like we had a better grasp on what was going on in a big picture way. And we were so appreciative that they took the time to talk with us and answer all our questions.

His ventilator settings were weaned down a bit today and so far he’s tolerating it ok. He’s been on less fentanyl all day to allow him to help the ventilator with breathing and it seems to be working. As an added bonus he’s been more awake and got to see his Grandma for the first time. He’s tolerating handling well as long as he’s on his left. He is growing. He’s not on any “life drugs” as I call them. So for now we just pray pray pray that he tolerates weaning on the conventional ventilator and demonstrates that his lungs are strong enough to support life so he can go through surgery. And that he stays stable overnight. And we wait. Xo

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My lovely little baby boy

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Oh, hello Grandma!

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10 Comments
  1. Praying for continued stability for Oliver so that he is ready for surgery soon. He has the most beautiful eyes. Dr Himidan was my guy’s surgeon and in addition to be a brilliant surgeon, she is just so kind. Praying for all of you…the highs and lows of every day take their toll and I know it becomes more difficult each day you spend him, getting to know him better, seeing who he really is, what he likes and doesn’t and yet not knowing what is to come…that is where faith comes in. Hope you’re feeling better.

  2. Praying for you, your family and your adorable little man each day. You are doing an incredible job being a great mom in a very challenging situation – it’s inspiring. Continue to have faith and patience. Sending so much love your way.

  3. Babs Orebe permalink

    My thoughts and prayers are with u guys at this time. Best rgds to Oliver!

  4. Ann permalink

    Oliver is so sweet and has such beautiful eyes! It is an honor to be taught such important lessons from someone who is only a few days old. I’m so glad that you have such good doctors by your side.. Thanks for keeping up the “Ollie chronicles”. He is a remarkable little baby but usually the apple doesn’t fall far from the tree. Take good care of each other and know that you’re all in my thoughts and prayers. Xo. Ann

  5. kareth permalink

    Hi Tim and Alex
    First, congrats on the birth of your baby boy Oliver. I continue to pray for him that God will see him through. He is able. Alex your strength is remarkable.

  6. Preggo Chick permalink

    Wow, that Jack Johnson song lyric takes on a whole new meaning in your context. I know it feels like you’re neither here, nor there, but somewhere in between, but eventually he will be strong enough to survive and thrive surgery! I’ll keep praying that it happens sooner than later, In the meantime, keep up the amazing strength! XO Lauren

  7. Patricia permalink

    Hi Tim and Alex. I’m Meredith’s sis-in-law, Patricia, and I’ve been following Oliver’s progress thanks to Mer’s posts on FB. I just want to know that thoughts and prayers are coming from my family to yours. P.S. He’s such an adorable little guy!

  8. Here is to lot of positive thoughts your way so that little Oliver can show them what he is made of. I do hope it all goes well and next week be surgery week.

    Anu
    http://ourcdhherolittlea.wordpress.com/

  9. Joan Tyler permalink

    Hi Alex & Tim, I am praying to God and all the Saints, especially my favourite St. Jude, who is the patron saint of difficult cases, and who very often answers our prayers…..may God’s Will be done, and may He give you both the extra strenth during this difficult ordeal… Erin just told me that surgery is being done today the 20th…..I am off to church to beg for good results to take place.
    Have patience and spend your time with Poppy today who I am sure will give you comfort.
    Joan.

  10. melanie wakely permalink

    I am praying for u and your amazing son!!!

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