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Baby Steps: July 5, 2012

July 6, 2012

Dr. Langer doesn’t think he’ll be the one doing Oliver’s surgery because he’s going away on Monday for two weeks. He told me this apologetically but I, maybe rudely, was totally excited about it. Of course I’d like him to be Ollie’s surgeon, but if he thinks he can have surgery in the next two weeks I’d like that more!

There were lots of good things that happened today. He’s off the norepinephrine completely and the epinephrine is down to 0.02. After that is 0.01 and then none. He has to be off these for surgery, so this is great. His blood pressure is good so they started him on lasix today which will help him pee off the extra fluids so he can start looking more like himself. Being swollen is really uncomfortable so it could end up making him happier! On his chest X-ray today they saw some lung on the left side and that feels huge to me. If there’s tissue it can grow. When Dr Langer told me I asked him to please burst my bubble but he told me cautious optimism is an appropriate response to that news so I’m being cautiously optimistic!

Probably the best things that happened today were getting to brush his hair and put socks on him. It made me feel like his mommy. I think it’s so special to be able to do these things for him and I know I wouldn’t be able to in every hospital so I really treasure it. He liked having his socks put on, all his numbers improved when we did it. I’ve been reading to him and I love to stroke his head. If I close my eyes and imagine hard enough I can pretend that everything is normal for a second.

He still refuses to be moved off his left side, and desats every time they try. Dr Langer said that that’s ok, it’s normal. But he needs to tolerate it to go on the conventional ventilator and he needs to be on the conventional ventilator to have surgery so it’s still something we’re keeping a close watch on. When he starts shedding fluid his blood pressure might drop so he might go back up on the epi but they’re trying to find a balance.

This is probably filled with incomplete thoughts and unfinished ideas but I’m pooped and can’t see them. Thank you so much for keeping us in your thoughts.

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6 Comments
  1. Celebrate all the baby steps, I say..there are enough edge of your seat, crying, worrying days that every step forward deserves some cautious optimism!! Continuing prayers… Finley really did best on the high freq vent.. It did take her longer to be ready o surgery because when her PDA closed, it made her PH worse..such a roller coaster. I m so glad you got to do some things for him. It is so hard when you a re so disconnected from your baby that you just want to hold and love all over. I lived for those moments when I got to change her diapers, swab her mouth, and check her temperature..

    Love,
    Liz

  2. You are sounding like a seasoned NICU mama already. You’ve got your drug names, sats, stats, and procedure names down pat. It is shame we have to learn all this terminology, but all this knowledge serves you well when conversing with the medical teams. I am glad you have reason to be cautiously optimisitc and send prayers your way for smooth days ahead and continued improvement to ready Oliver for eventual surgery. I love the picture of his little fingers…baby fingers and baby toes just do something to make the heart melt. Glad you are getting to do mommy duties and reading. I was just reminding my little guy yesterday that when he was in the hosptial I used to sing “He’s got the whole world in His hands” to him. All these comforting activities are so great for both of you.

  3. Hello. Just came by to see how little Oliver is doing. Know how much I care and that you are not alone in this cdh battle. Praying for you all.

  4. Glad to know that things are moving forward well enough. Hang in there and keep the optimism, helps the days go by faster. Surgery in the next two weeks sounds amazing. Good luck Oliver!!!!

    Anu
    http://ourcdhherolittlea.wordpress.com/

  5. Alex, thanks so much for writing this, I have been thinking of you guys so much. I’m so happy that there are baby steps in the right direction, I will keep sending my thoughts and prayers. You’re a champ, Oliver is lucky to have been born to you and Tim. Keep it up mama.

  6. Diana Winsor permalink

    I am so thankful Alex that you are writing this blog. We are with you every step of the way (in prayers anyway). Sounds like you are holding it together, and it also sounds like Oliver is doing his part as well. Thinking of all you guys. Take care.

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