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One Month Old: Aug 2, 2012

August 3, 2012

Oliver is one month old today! In February when we found out about CDH we had no idea if we would see this day. So coming up to it I thought I would be really happy today. After all, the alternative is so much worse. And so real. 8 CDH babies in the Cherubs network have lost their fights this week. So I should be overjoyed today, and I feel really guilty that I’m having a hard time feeling that joy. It’s just that my son is a month old and I still haven’t snuggled him, haven’t listened to his voice, haven’t heard the words “he’s going to be ok”. When we were pregnant we heard that by a month you know, they’re either ok or they’re not. So today I asked. Wouldn’t you know, we can’t know yet because of that darn chyle. It is most definitely slowing down his progress weaning off the ventilator. And it leaves him so vulnerable to infection that he’s basically an AIDS patient. Nurse Sam told me today that as long as he’s in the PICU he’s really too sick for visitors, and with the chyle the less people who touch him the better. Because if anything happens, he’s going to have a hard time fighting it off. I guess I was expecting something more along the lines of “yes, he’s still got a battle but he will likely win it.” So we are still in limbo. Not knowing yet whether or not we get to keep this gift God’s given us. This gift we want so so badly. And it’s hard. But either way I am so grateful for the month that we’ve had with him so far. He is an amazing little boy. He is such a calm baby, and even as they wean his fentanyl he remains that way. As long as you don’t take his blanket away or leave him in a wet diaper! His eyes are so bright and he loves to be talked to, loves the sound of laughter, loves to read books. He loves to have his hand held, his head stroked, and he falls asleep if you rub his sideburns. He is such a lovely, NORMAL baby, that sometimes I almost forget that he is a critically ill baby, still being kept alive by half a million dollars worth of machines around the clock. Almost.

To make today special we got Oliver all snazzed up, with a monkey-themed sheet change. He looks pretty amazing. Dr Geurgerian even joked in rounds that the colour of his hat should be included in the nurses report from now on. Poppy and I baked birthday cupcakes for the staff who have made it possible for us to enjoy these 31 days with our gorgeous baby. We saved a couple to eat after dinner for ourselves though! And Oliver got two new books in the mail today from his friend Lucas, one about a boy, one about a bear, both named Oliver 🙂

Ollie’s right chest tube is still giving him trouble, so they weren’t able to make any changes on the vent today. They aspirated it twice, the second time they added a medicine called TPA that breaks up clots, hopefully this will get it moving. His RT Ali wanted to wean his pressures but the chyle kept crushing his lung so he got stuck at 30-5-20-14. His arterial line came out today, and they decided they don’t need it anymore. That means they aren’t continuously monitoring his blood pressure anymore. It’s been stable so they’re not worried, but now they’ll be taking venous blood rather than arterial blood for his gases. Apparently this is no big deal, it’s only the oxygenation of his blood that changes and that is not where his problem lies. So today wasn’t a step forward, but it was still pretty smooth. Let’s pray smooth days continue! And an enormous thank you to everyone in the PICU who are working so hard to give us more days to celebrate. Xo

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Bath time anger!

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My little monkey

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He knows how cute he is

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Baking for her brother

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Happy birthday Ollie!

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Bed time – note the art-lines absence!

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16 Comments
  1. Lisa permalink

    Looks like one free hand just for mommy, daddy to hold! And soon…Poppy! Praying for your little man. He is one good looking baby!

  2. Joan Tyler. permalink

    Ollie looks cuter every time I see a new picture of him……God bless him and continue to make him get better.

  3. Jessica permalink

    My baby is also named Oliver, and was born just a couple of days after your cutie was (July 4th). I am thankful every morning that my Oliver is a happy and healthy little boy. I am a Pedi ER nurse, and I know how lucky I am that my baby is healthy. I’ve seen too many sick babies over the years. I read your blog every day and am so hopeful for a good outcome for you and your family. He is a beautiful little boy and I pray that you get to snuggle him soon!

  4. Cathy Taylor permalink

    Alex & Tim you are amazing!

  5. Belle permalink

    Way to go Ollie Boy – keep up the good work buddy! We wish you all the very very best. Hang in there guys. Billions of thoughts and prayers are with your little warrior and your family. We love seeing Ollie hold on to Lucy… too precious.

  6. Touched by your story permalink

    Your prose is so compelling and colourful. I feel like I’m in the PICU with you. I certainly am there in spirit. But from the comfort of my home, the only thing I can do is pray and pray some more, which I am committed to doing until Oliver is discharged home. Be strong (easy for me to say) – sending good wishes, happy 1 month birthday, G-d bless the staff in the PICU and may that darn chyle just stop already.

  7. Mom of two permalink

    Happy 1 month Ollie!! Praying that his chyle will resolve and that he gets better every day so you can take him home. He is beautiful!
    Jo

  8. cousinjenn permalink

    So he is winking (doesn’t look angry to me!), and blowing bubbles at his mom & dad. What a great day, Alex.
    love, Jenn

  9. It takes great courage to ask the “will he be ok?” question. I pray that the chyle abates and the next time you ask that question, the answer will be much more reassuring. He is adorable just like his big sister (what a jubilant smile in her pic) and as others have noted very stylish thanks to his doting mom. I remember Dr. G…the first to ever explain CDH to us…what amazed me most about her and so many more like her at Sick Kids is that they are so brilliant and so compassionate at the same time. It is a place filled with difference makers and it leaves a parent in awe to be in their presence. At the same time more than anything you want to walk out of there as soon as possible with a healthy baby in your arms. Praying Oliver’s road to recovery and home becomes a smoother one really soon.

  10. jaymer permalink

    Happy birthday Oliver and family xoxo

  11. Happy Birthday Oliver!

    I asked the ‘Is he going to be okay’ question at about one month. My son’s pediatric surgeon told me that he was confident that he could….raise his chances to 50% survival. I was excited and heart broken all at once. I don’t think there is a ‘one month’ cut off. I think it’s completely up to Oliver (and that pesty chyle). But when he knows he’s going to be okay, he will let you know. And trust me, you will be the first to know. The nurses won’t have to tell you. You will see it in his eyes.

    Congratulations on a day without progress. They are a world’s better than a day backward. And enjoy those cupcakes. Poppy is adorable!

  12. Michelle Goleski... permalink

    Happy 1 month old Oliver…. I pray for you every day in hopes that all will work out for you as time goes on…. Love you!!

  13. Happy one month birthday to dear sweet Oliver. I am telling you by his second birthday this day will be a distant memory and he is going to be in your arms. Hang in there!
    Anu

  14. Tanya permalink

    as I sit here, very optimistically, I am fast forwarding the years and thinking “how empowering to read all these comments everyday”……I’m sure Oliver will find them
    just as empowering when he can read and understand the impact his story has had to all…..happy 1 month little buddy 🙂

  15. Ria permalink

    Happy Belly Button Day Ollie. You’re such a strong brave little man. You’re in our thoughts & prayers. God Blessyou and you and yours.

  16. Meadow Laflamme permalink

    I am a friend of Mer’s and have been reading your blog everyday. I just had a baby boy myself and when I see Ollie’s bright eyes, I see my son’s. You are so brave and courageous and he is lucky to have you as his mom. My husband and I pray for Ollie every night, that he get’s stronger and stronger and healthier by the day. Happy birthday Ollie 🙂

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