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Watch Ollie on TV tonight! April 12, 2013

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Oliver and our friend Shannen, whose little girl Asjiah died of CDH, are going to be on CityTV news tonight at 5 & 6! Dr Cox will also be on. Check us out! Channel 7 in Toronto 🙂

CN Tower Lighting April 19

The CN Tower will be lit in blue, yellow and pink, the colours of CHERUBS, for CDH Awareness on April 19, CHERUBS CDH Awareness day. Please join us at 7:00 to raise awareness and show support for all the survivors and angels, and feel free to invite everyone you know! There will be cupcakes.

Oliver is really excited to see all of you, although he’ll probably be asleep in his stroller 😉

We would love to get some media coverage to help raise awareness, because awareness = research funding = less suffering for future CDHers! So if you, or someone you know, works in the media we would love if you could come out. Another CDH mom, Shannen (mommy to angel Asjiah) and I would be happy to answer any questions you might have.

If you’re a CDH parent or survivor (you know who you are…) we’d really LOVE if you could make it out especially!

See you all April 19th at 7:00 at the base of the CN Tower 🙂

Here is the link to the facebook event.Image

He’s perfect, so why can’t I relax? April 8, 2013

I’m never not scared. I cry often. Thinking of babies who didn’t make it, seeing a soother from when we were in the hospital, tiny baby clothes, these things all make me break down. Oliver, in all his health, beauty and loveliness, makes me cry. He’s happy. He’s healthy. But I can’t help but add “for now” in my head. Reherniation, scoliosis, pneumonia, these are all big fears in my life. Every time he whimpers I get scared. When he coughs I spiral in to terror. If he sits funny I start worrying about metal rods. You see a happy healthy baby, I see my entire universe teetering on the edge of a disaster.

He is so wonderful, so sweet, so perfect, that I cry just thinking of what he had to go through. Why does he only get to have one lung? Will he be able to play at the park with his friends? His left nub is not growing, will this bend his spine so much that he feels deformed? What if he gets an infection and goes from being happy, healthy and normal to needing oxygen around the clock? I know I can’t let these fears consume me, so we go out. When we’re out it’s hard to think. I try to keep myself distracted all the time. But then I get tired, and so do the kids. We stay home to rest and I get overwhelmed. It’s not easy loving someone so much.

Tim was happy the other day because Oliver got a tooth, and that’s normal. He just wants Oliver to be normal. I put on my knowing voice and reminded him that wanting Ollie to be normal is like wanting Poppy to be a boy. He’s not normal, he’s special. But I was faking it. I hope he can feel normal too.

I know I should be enjoying how perfect things are, and a lot of the time I am. If things became less perfect I’d be sad I wasted this perfect time feeling anxious instead of enjoying it. But knowing I should do something and actually doing it are very different. I love him so much it scares me.

Sorry this is not my usual upbeat post, I am just trying to stay honest. Oliver is perfect. 18 lbs of constantly happy adorableness. He waves and claps and gives high fives and laughs hysterically when you spray him in the face. He sleeps and eats and puts up with me. He’s incredible. We are so lucky. Xo

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Oliver Goes to the Dominican!

 

 

It has been pointed out to me that its been more than a month since I’ve blogged by someone very important to us who is also very bossy 😉 So here I am! And I have many cute photos to share 🙂

Oliver went on his first vacation! We flew to our friend Alex’s place in the Dominican (thanks Alex!) and screamed swear words at CDH in to the ocean. It felt amazing. Then we relaxed, drank piña coladas and got tans (well, as tanned as babies and their moms can get). Poppy became very adept at asking Christian the bartender for virgin piña coladas. And saying gracias!

 

Oliver loves the beach, naturally. His favorite part is eating sand, just like his sister. This horrifies everyone around us, but I think it’s adorable. He is also a big fan of swimming and all the attention he gets when he shows off his hot armpit rolls.

 

It felt so good to get on a plane, go on a holiday, and not think about anything. To borrow a phrase from Corinne, we showed CDH who’s boss! The only thing that would have made Oliver’s vacation better would have been if Tim could come, but he had to work. Luckily my parents came, and it was a group holiday so between the 20-ish adults and 7 kids there, he was never lonely. We all miss seeing our lovely friends faces everyday now that we’re home.

 

He was a huge fan of the delicious food and was constantly shoving his face full of French toast, bacon and fresh fruit. He has now been converted to team “Anacaona is Paradise”. The only downside being that the other 51 weeks of the year can’t compare!

 

Oliver’s new CDH buddy Evan was born Wednesday and is lucky to be being taken care of by Dr Cox. He’s already been extubated and is kicking serious CDH butt, but could of course still use prayers for an easy transition to eating and a short path home. Also, two of our friends moms are dealing with cancer right now and could really use any positive vibes you have to spare.

 

Love you all! Life is amazing, we are so grateful things have turned out this way and can’t believe how lucky we are. Oliver is the worlds easiest baby and every single second with him is a joy. I’m constantly thanking him for living.

 

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(all good photos by Linn Maria Reppe)

6 Months of Adorable!

Oliver’s been discharged from Dr Himidan’s clinic! Now he gets to go to regular CDH clinics. It’s a graduation of sorts, and it’s super exciting! Except we’ll miss seeing her. Dr Himidan promised to come visit us at regular clinic though. We’ll have to go less frequently too, which all of us are looking forward to.

On Monday Oliver didn’t poo. Totally normal but for a CDH mom, terrifying. I was up all night terrified of bowel obstructions and surgery and the like. Luckily a bit of prunes and some extra water got things going but it made me realize that as normal as he is, he’s not. Life will never be normal again. Because a bowel obstruction, reherniating, scoliosis, these are all real possibilities. It’s hard to balance my crazy person anxiety with my CDH reasonable anxiety. Deciding if I’m being crazy or justified will be a challenge for the rest of my life I think.

We are going back to my friend Alex’s place in the Dominican and I am SO excited! Sadly it’s not March break this year, so Tim can’t come, but my mom will be joining us and after this year she could use the break as well! I had a mini breakdown in the passport office. Last year when we went I was so sad. I was sure I was pregnant with a baby I’d have to say goodbye to. I was positive that was the only Dominican experience he was ever going to have. I had a very heavy heart. Getting a passport for my perfect baby to come play in the sun, sand and surf was so incredibly monumental. So I turned in to a blubbering idiot. I was a little worried they wouldn’t give me a passport due to my obvious insanity. But it came in the mail today so maybe I did a better job of acting normal than I thought 😉

Oliver is awesome. He’s just awesome. Sometimes I feel like an idiot because that’s all I really have to say. But I don’t mean awesome in a “check out this awesome cat video on YouTube” way. I mean awe inspiring. I mean being in his presence changes you. I mean his existence represents so much and so many people and such a miracle that he is, simply, awesome. Except when he screams for no apparent reason. Then he’s just a regular baby.

I’m his mom so I’m obsessed with him. He has the greatest smile, his eyes crinkle in a way that makes you think he’s wise beyond his years. He babbles with the best of them. Tim doesn’t think he means it, but this kid says dada all day long. And Tim’s at work, so nuts to that, he totally means it. He is a master of the jumperoo (circle of neglect… Side effect of being #2). He learned how to shake his head no and click his tongue last week and he is VERY proud of himself. As he should be 😉

For Oliver’s birthday, July 2nd, we are going to set up a donation for the Sick Kids PICU instead of our spoiled baby getting any more stuff. Just a thought to keep in mind if you’re starting to plan your charitable giving for the year.

Xo

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Riding the (highly sanitized) car cart at Home Depot!

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Fort fun!

NYE at SK ER: Jan 1, 2013

How was your New Year’s Eve? Ours was exciting. Oliver decided he wanted to end the year the way he’d started it. At Sick Kids. So in spite of my couch-centric plans, I headed out on the town with a gorgeous boy 😉

Oliver’s had a cold since Saturday. It kept getting worse, his cough was terrible and his breathing rate was getting higher and higher. Eventually I posted about it on Facebook and immediately Dr Erin and Dr Langer via his amazing daughter Jess were on the phone telling me to go to the hospital. Better safe than sorry. So off we went like good little patients.

Simply being here cured him immediately. We walked in and saw nurse Irene and RT Christina from our PICU days and Oliver was all batting eyelashes and mischievous grins. They didn’t believe me he was sick. 3 hours in to our ER wait I also decided he wasn’t sick and got up to go home. The second the stroller hit the atrium though, Oliver erupted in a fit of death cough so around we spun, back to our room for another 2 hours. Sigh. Emergency rooms at the holidays…

He’s happy and cute, but his poor little voice is gone and he’s a hacking monster. All of which he showed off for the doctors. His oxygen saturation was only 86% when it should be 100. We were hoping for mechanical error, and while we waited for a new machine we headed off for a chest X-ray. His lungs sound fine but thanks to his 38 ventilated days Oliver gets the full work up. You can imagine how much he loved the X-ray tube at 2:30 in the morning. Still waiting for the other pulse ox machine to show up I got myself a bit worked up. But then in a moment of uncharacteristic cleverness I had an idea. Assuming my oxygenation is pretty good I could use myself as a control and test the machine! Well I only scored an 84 so Little Man is doing better than his mama. And I could relax and have a Diet Pepsi. His chest X-ray came back fine, and after a few changes his sats were perfect and we were sent on our merry way to collapse in to bed and not wake up til next year.

So we are safe, not sorry, and totally ready to say goodbye to 2012. Happy New Year!

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Sick

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New Years Eve, woot woot!

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So tired

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All done!

Tiny Light Photos

Lori Waltenbury is an amazing lady. She’s funny, sweet, beautiful and talented. She uses her photographic genius to capture beautiful babies images before they are laid to rest with the organization Now I Lay Me Dow To Sleep as well as working with Tiny Light to photograph sick children at a time when memories sometimes don’t get saved. The two charities are amazing and when I was pregnant Lori told me about them, saying whatever the outcome she’d like to photograph Oliver. Lori’s sister was born with CDH but she did not make it. Now Lori uses her gift to bring a little bit of beauty to families going through a hard time as well as running her own photography business. She’s truly amazing and we’re lucky to know her.

Lori Waltenbury

Tiny Lights

NILMDTS

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