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It’s a Rollercoaster: July 4, 2012

July 5, 2012

“The shock appears to be wearing off and he seems to be doing a little bit better today.” Today’s powerful words were so much more magical than yesterday’s! It’s tough but I have to remind myself constantly that CDH is a horrible roller coaster and just because we’re going up one day doesn’t mean we won’t go down the next. On the other side of the same coin, though, a bad day doesn’t mean a good one isn’t around the corner. But today has been a good one so far and I’ll take it. I’d describe my outlook as VERY CAUTIOUSLY optimistic.

Oliver’s been stable since they put him on the calcium drip last night. He doesn’t like being poked and prodded (who can blame him) so they gave him a day off from tests and he’s responded really well to it. They’ve been able to keep his sats pretty stable while reducing his norepinephrine and reducing his oxygen down to 67%. He’d tried out 55 for a bit yesterday but in the end had to go back to 88. He’s been at 67 all afternoon today so that is pretty good. Room air is 21. He’s all done his antibiotics for the group strep b and his cultures came back normal so I don’t have to worry about that anymore either. He’s still really not peeing enough so I’m starting to wonder if he really is my child. He is peeing more than yesterday but he’ll have to go on a diuretic when his blood pressure is totally stable. Swelling is the least of his problems though.

Poppy turned 2 today (!) so my mom brought her down and she stayed with Oliver while we took Pops out to celebrate. I quickly realized that 48 hours after delivery is not enough to properly play with a 2 year old. Luckily Super Dad was with me and he picked up my slack. We took her down to the Harbour Front to see the “big fast boats!” and “birdy nap!” and then to the park and splash pad to have a play. The park was hard because there was a little boy there named Oliver and his mom kept calling his name. I cried. Luckily I had sunglasses on and Poppy was too busy to notice. Who knows, maybe that’ll be me and my Ollie one day. After that we went to eat sausages and french fries and ice cream which are all of Poppy’s favorite things and then we came back here where Poppy opened her 1,000,000 presents. It was hard to see her go, but it was hard to leave him too.

UPDATE: I felt confident enough to go home and shower. When I got back he had desatted pretty dramatically & they couldn’t figure out what was going on. They bagged him again & put him back on the vent and now he’s back to doing fine. Clearly he was telling me not to leave him anymore. He likes me. I like him too. Just shows you how wild these CDH babies can be and how truly like a roller coaster this is.

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We brought a bear for him to love

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Today’s nurse (Sarah, who I know from my friend Robin’s bachelorette and wedding!) took this photo of our family. I can’t wait until we’re allowed to get Poppy in one of these.

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12 Comments
  1. ashley g. permalink

    so glad to hear he had a good day! oliver is one tough dude, and is so lucky to have such loving, wonderful parents! we love you and your family photo. xoxoxox

  2. cousinjenn permalink

    love and positivity to you four! xxoo
    burlington wessons

  3. Linda permalink

    Hello,
    I’m a friend of Erin’s and one of the peds residents at ACH. I’ve been reading your blog ever since Erin told me about what an amazing mom you are and about your little guy- and I just wanted to say congratulations on the birth of your beautiful boy. . . and I’m thinking of and praying for your family in this challenging time. . .

    thanks for sharing your story- it’s really given me a sense of context for the families I deal with every day. . . i recently finished some time in the picu and I recognize in your articulate and heart-felt words the terror and hope and joy and profound sadness that I’ve seen in the eyes of so many new parents who find themselves on this crazy journey. . . and i hope this makes me a better support for these families as they face their own challenges. . .

    Oliver is so lucky to have such a loving family. . . and I will keep you all in my thoughts and prayers

  4. Sending all the Love, care and prayers. :’)

  5. Lani permalink

    The family photo brought tears to my eyes Alex. I have been thinking about you non-stop and so wish I was in Toronto to do something to help you guys out. Oliver is one lucky baby to have you guys. Hugs from Germany! xoxo

  6. Leslie permalink

    We’re only about four weeks ahead of you on this CDH journey (Bonnie was born June 7th). I’m no expert, but it seems like not needing ECMO at this point is a great sign for Oliver. So glad the calcium drip is working, too! Many prayers for you, Oliver, and family.
    Leslie
    (www.babybeehelms.blogspot.com)

  7. Jayme L permalink

    Wow, I’m so happy your are sharing all this with us. You are all such strong wonderful people Poppy and Oliver are lucky to have such amazing parents. Lots of love to all of you

  8. So glad to read this update. Keep on going Oliver!!! I had tears in my eyes when you described Poppy’s birthday. My son’s birthday will also be close to when my second son is born and it is going to be hard. Take care, keep fighting.

    Anu
    http://ourcdhherolittlea.wordpress.com/

  9. Susan Wesson permalink

    Oh, Alex – I feel so much for you and Tim.! Doubly hard when you are trying to make life for Poppy as normal as possible. Much, much love to all of you.

  10. Asia permalink

    Love. Happy wedding anniversary.

  11. Susan Kwolek permalink

    Hi Alex and Tim: Erin’s mom here…I am thinking about you both, your family and Oliver all the time. I am praying tht every day is a good one even though I know there will be some that are not so good, but every day is a day you share your love and strength as parents with Oliver so in the end, every day is a good day!. Today in my yoga class we all made our intentions work for Oliver. So many people already love him and want him to do well!
    I would like to send you some stuff to keep the family going . Erin sent your mom’s address but I need a phne number please

    Sue

  12. Angela Stanescu permalink

    Alexandra, your blog is great – I am enjoying keeping up to date on how Oliver, Tim, Poppy and you are all doing. And I would guess its good therapy for you to write down. I’m sorry to hear yesterday was a tough one. Oliver sounds like a fighter. Hoping today is a good day.
    Your Mom and Dad’s friend Angela Stanescu

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