A Heart In My Hands

EKG 001

That’s our new heart shape. It really doesn’t mean much to me. I don’t know how to read an ECG – electrocardiograph (a.k.a. EKG) recording. But, it means the world to me because this is the shape of Crash’s heartbeat when recorded by an ECG. If you know how to read these things, you’ll notice that’s it not normal. If you don’t know how to read it, I can tell you this is not what it’s supposed to look like.

If you haven’t yet read Crash’s arrival into this world, you can read With An Open Heart, here.

This past Wednesday we made a trip to the renowned IWK Children’s hospital in Halifax, three hours away. We’re country folk, so going to the big city is a big deal. We made sure to do a bit of shopping. But I’m not here to tell you about what we bought.

I’m here to tell you about what we saw.

A heartbeat.

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Crash had TGA – Transposition of the Great Arteries. It’s just a fancy way of saying his aorta and pulmonary arteries were switched. At just 5 days old, a surgeon put them in their right places. This meant open heart surgery, bypass machines, and a 16 day stay in the hospital.

Flash forward 8 years and he gets his routine check up only once every two years. While this is good news as it means he’s doing well, it makes his mother and I a bit nervous going that long between check-ups. These check-ups aren’t for him. They’re for his parents’ peace of mind.

Anyway, upon our arrival at the IWK, they take us to a small doctor’s room where his cardiologist comes to talk to us. He simply wants to know if we have any concerns. He asks Crash if he’s had problems with dizziness or fainting (nope). If he’s had problems with chest pain while exercising (nope). Then Crash is off to be measured.

Robot 8 year old

electrocardiogram

He’s 35 kg (77 lbs) and 44 inches tall. No failure to thrive here.  Then he gets stickered up for the ECG. We joked with him and called him robot baby like we did when he was just an infant and hooked up to a bazillion monitors. A minute later and was done. I barely had time to get this picture with the phone.

Then we were sent back to the room where we first spoke with the cardiologist. He informed us that all looked good. While the ECG wasn’t “normal” it was normal for him. No surprise. We always knew his version of normal wasn’t quite like everyone else. DW had the great idea to ask for a copy of Crash’s ECG. Then she mentioned making a tattoo out of it. You betcha! We now have a physical copy of our son’s heartbeat. I can hold his heart in my hands. I can wear his heart on my sleeve.

From there we went to yet another room for an echocardiogram.

When his aorta and pulmonary artery were switched 8 years ago, some stretching occurred (as was expected). Imagine what happens when you stretch a hose. I narrows. This was what they were looking at in the echo. They were making sure those arteries hadn’t narrowed further and that blood was flowing properly. Again, when I say properly I mean properly for someone with TGA. To our great relief, all was “normal”.

He even got cleared to join Tae Kwon Do.

Then Crash asked for a picture with Dr. Wong. Perhaps a hero. Or, at least, an idol. Crash wants it printed and put in a golden frame.

Crash and Dr. Wong

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28 thoughts on “A Heart In My Hands

  1. Yeah, “normal” is in the eye of the beholder. Remember that our kids are capable of much more than we think – they’ll be much braver, stronger, more resilient, more “normal” than we ever think could happen at that point in their lives.

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    • This is his condition. He’s had it since birth, so this is just an everyday thing to him. To him, there’s nothing wrong because his condition was repaired. It’s only mom and dad who are concerned with the after effects 🙂

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      • It’s similar for my kids…White Fang has always been on the autism spectrum; the baby was born early; they just deal with how things are for them, since they don’t know anything different. As parents, we do tend to focus a lot more on trying to reach a certain level or expectation… Nor should we be too concerned with preparing for the worst; just be grateful when everything is “our normal”.

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      • Whatever “normal” is 🙂 Normal is for them is how they’ve lived their whole life. Normal for us is how we expect them to be. Once we drop the expectation we can see how everything is just right.

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  2. 😊😊😊 I love how your post blends in so well with the title, Eric. Unexpected but fits. Such a great idea to tattoo the heart in your hands. It’s true that things like that is really more of the parents’ peace of mind. So happy to hear that it’s “normal”. Yes!!! To taekwondo – it’s a great sport for the kids.😄

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    • I found myself with that piece of paper thinking that it represented Crash’s heartbeat and here I was holding it in my hands. To Crash he’s no different than all the other kids, with the exception of his scars. He’s as active as they (perhaps more so). I’d like to put him in taekwondo in hopes that it’ll give him focus and discipline as much as self defense 🙂

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      • Oh yes! Taekwondo’s good for that. We have seen so much improvement with Spud when she started going for Taekwondo. It took her while to get there and she’s doing better. It helps with kids who bounces around too much With Squirt, he has a bit more to go. Probably because of his age. I like that TAekwondo also tired them out. :p

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      • Ahh yes. Tiring them out is always a pleasant side effect 🙂 Crash isn’t involved in anything that takes place regularly. This would be a good endeavor for him, I think. I didn’t realize Spud and Squirt were in it. That’s awesome!

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  3. Our Big was born with 2 holes in her heart and some stenosis. After seeing the cardiologist at Children’s Hospital in Philly, first evry 3 months, then every 6, then 1x a year, then every 2 years–we are now free and clear. She is fine. Looks like Crash is on a great path with a great superhero to tend to him!

    Wishing you and yours a worry free experience from here on out. Not sure if its possible.

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    • Thanks! Great to hear about your Big. Crash also had a hole in heart, but it closed on it’s own. We’re as close to being worry free as we can get, I think. It’s comforting to know they’re being watched over, though.

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  4. Pingback: My Article Read (2-27-2016) – My Daily Musing

    • LOL He loves the finger puppet. The hospital we go to always has a basket full of knitted/crocheted finger puppets. We always take a couple when we go. When he had surgery on his teeth (had his 6 year molars removed) he got a knitted stuffie he name G’nigel. (soft g) It’s a great hospital.

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  5. Must be so terrifying when you find out your baby (although he’s not a bay anymore) has a problem with something so fundamental as their heart. But he looks like a strapping lad and glad to hear he’s doing so well. #FabFridayPost

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    • Thank you. It was terrifying. Fortunately, we had an excellent support system in friends, family, doctors and nurses. His surgeon was tooted as one of the best on the whole east coast. Literally this side of the Mississippi. He’s doing great now. We often joke that his surgeon didn’t fix his heart, he put in a second stomach. Thanks for stopping by!

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  6. What an incredible journey! Crash is fighter and he sure is taking that to taekwondo. You must be so so proud of him. An incredible young lad who’s heart deserves to be tattooed and held in your hands. Well done Crash, and Dad, and Mum, and Dr. Wong, and team – so good to hear that he is doing so well. Thank you so so much for sharing and linking up with us on #FabFridayPost

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    • Thanks for having me, Su! He certainly is a fighter, in more ways than one these day 🙂 It’s been such a relief knowing his heart is still doing well. He’s had zero issues at any of his check-ups. He’s had an incredible team of doctors looking after him and we’re so thankful for that. Thanks for stopping to read.

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