Oh, hello there everyone! I know what you’re thinking: “Guys! You said you’d update us all after Emily’s cardiology appointment at CHEO at the end of April – what happened!? How is she in general?! GIVE US SOME NEWS ON THE IMPOSSIBLE GIRL, DAMN IT!!” Well, as they say, time really does slip away from you when you have kids. Especially with a wee one!

 

So, where to begin … Let’s just go ahead and dedicate this post to Emily’s heart and the VSD, shall we?!

Emily had her post CHEO release cardiology appointment at her 2 month mark on 28-April. We were told she’d be there for a few hours as they needed to do both a heart ultrasound and an EKG in order to see how things were with respect to her VSD. Neither test hurt her or was invasive, though, if she could talk she’d tell you that the sticky pads that relay the information for the EKG were the worst thing in the world. It was annoying for her to have them removed after they got the reading, and she wailed quite a bit, but she was fine after about 2 seconds.

 

Following these tests, we were brought into a meeting room where we sat with Emily’s cardiologist to discuss the results. We were advised that although we all – Emily included – had been working hard to ensure she was gaining her necessary weight to help the VSD shrink or close – and that although she was showing no signs of ‘heart failure’ (read: pressure changes, NOT a heart attack), it was still large and hadn’t changed in size. To put things into perspective: her heart is the size of her fist – about 2 in / 5.1 cm – and that the VSD was found to be 0.6 in / 1.5 cm. We were also told that they found 2 other small holes at the top of her heart, but that these 2 small ones didn’t impact her or how her heart functions. The biggest kicker of it all was that they told us she would more than likely need to have open heart surgery to repair the VSD as the chances of the VSD shrinking at this stage were slim to none as it hadn’t changed in size and was over the 1cm mark. We then discussed 2 things: the next steps for Emily and the upcoming surgery.

The next steps for us were continue to watch and monitor her and ensure Emily still wasn’t showing any signs of heart failure (excessive sweating at feeds, flared nostrils, chest/abdomen skin stretching and pulling at her ribs as she’d be having difficulty regulating her pressures when she breathes, generally lethargic) and have her back to see the cardiologist at her 3 month and 6 month marks for follow-up ultrasounds & EKG’s. At these marks, the cardiology team would discuss as a whole if Emily needed to have her surgery earlier than 3 years of age. You see, the goal is to delay surgery until she’s about 3 to ensure her heart is larger than it is now to make it both a bit easier for the team to perform and easier for Emily to recover from. The surgery itself was described as ‘garden variety’ for the CHEO team – pretty much the easiest open heart surgery you could perform in pediatric cardiology, but open heart surgery just the same. To put it bluntly: they would open her chest, stop her heart and have a machine do all the blood pumping through her body while they repaired the holes. The 2 smaller holes would be stitched closed and the VSD would be patched with what is essentially Gore-Tex. Tissue could then grow around the patch and continue to grow as she grows, while the patch stayed in under the tissue acting like a base. We left the appointment on 28-April a little sad knowing that the hole was still very much there and that Emily would again need surgery. We were also a little scared because, and let’s be honest here friends: it’s open heart surgery and we had no way to know when that surgery may happen. If she took a turn where she was losing weight and showing concern, they would want to do the surgery sooner than later.

In the weeks that followed, we continued with Emily’s fortified (read: increased caloric total) feeds and kept seeing our pediatrician for our weekly weigh-ins and check-ups. Each week when we go in, her doctor would say how great she looked and how mature she was getting – and we could see it too! She’d go to bed for either her nap or nightly sleep, and she’d wake up looking different; more mature! She continued (and still does) to trend up when you chart her stats, but her weight is still in the low end (for Emily, it’s down in the 7th percentile) – which is totally normal for o-babies. Each doctor’s appointment has been the same so far … well, except this week. While in for her check-up/check-in, Dr. K said she noticed that Emily’s VSD sounded a lot louder since last week. She didn’t say much more as she knew we had our cardiology appointment the next day and that they’d see what was up with testing.

 

This past Thursday we were back at CHEO 3 month EKG and ultrasound. She did way better this go round after the EKG, and though we are not sure if it’s cause she knew what to expect and was like “Yo, guys – I got this cause I’m way more mature now!”, but whatever the case, she did really well. Emily then had her ultrasound and slept through nearly the entire thing – only waking at the end because it was close to her regular feeding time. We then went in for the results overview with her cardiologist and got some news we were not expecting to hear, nor was she expecting to give … the VSD shrank significantly! It went from 1.5 cm / 15 mm to 0.3 cm / 3 mm!!! You see, we’d kind of resounded to the fact that Emily would need to have surgery. Both her pediatrician and the cardiologist said that the chances of her VSD shrinking at this stage, due to it’s size was really quite a long shot. But our Impossible Girl did it again and astonished all of us! Her pediatrician thought that perhaps it got smaller but a) didn’t want to say anything to us about her theory, just in case, and b) had no idea it was THAT smaller! The analogy that both doctors provided for the louder murmur: think of it like an open door on a windy day. If the door is open all the way, you don’t hear the wind as much, but if the door is not as open, or near closing, then you really hear the wind coming through.

We will now continue to keep on doing what we’ve been doing – just living each day as a normal day, just with more fortified (higher caloric) feeds, and wait to see what her 6 month check-in with the cardiology clinic has to say. If all goes well, open heart surgery will be 100% off the table, but for now we wait.  Fingers crossed!

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