I sometimes feel as though that as a whole, we need to look at our calendars and start thinking about adopting Rosh Hashanah as the new year for everyone. I don’t think that I’m alone in thinking that September always feels more like the new year than January does. Be it the years of school starting, the fresh winds blowing out the hot stale air of summer or the fact that I work in Aquatics and at the end of every summer we get to relax a bit and breathe a little easier, but in my heart of hearts, fall is the start of the new year for me.
It was felt incredibly true just this past week, as Lily and I strolled out of Holland Bloorview (a kids rehab hospital here in Toronto), feeling as though we had uncovered some holy grail of support that we didn’t realize had been missing from our lives. Well, that’s not entirely true – we knew it was missing, so maybe it’s more accurate to say that we felt as though we had uncovered some holy grail of support that we didn’t realize we were longing for. But, in that moment, walking in the sunshine, I felt as though we were starting fresh.
If only you knew how long it took to get her hair into braids. Sister hates having her hair done.
For the past year, Jess and I have been watching Lily’s weight and growing more concerned. Lily is a tiny girl and always looks much younger than her actual age (we call it her chronological age – more on that in a bit) and while we tend to embrace it and laugh about how lucky we are that we get a baby for an extra long time, since December we’ve been noticing that she hasn’t been gaining weight. Notice that I didn’t say “much weight” or “weight steadily”, I’m saying weight – any weight. In fact, Lily has only gained 1 pound in the last 12 months – from 21 pounds in October 2012 to 22 pounds in September 2013. Obviously, this is not an ideal situation – kids are supposed to grow, and while she’s clearly grown in height, her body weight is not keeping up with her. Our pediatrician kept telling us that she was “growing so nicely”, and other people would comment on how big she was getting, but we knew that this wasn’t right. We kept saying to each other that what she really needed was to switch to a specialized formula so that she could take in more calories, but when we asked the dietician, she simply switched us to a different formula with the same calorie content and told us to “make her eat more.”
This statement simultaneously made us laugh and want to outlash violently at her. “Oh, is THAT all we have to do?” Make her eat more? Clearly that’s the answer we’ve been missing all of our lives!”
I’ve talked a lot about Lily’s heart and her brain and her eyes, and while I’ve mentioned the g-tube and the need for it, I don’t think I’ve explained the history of why eating has been such a challenge for her. When Lily had her first open-heart surgery, she was 7 days old and incredibly tiny. At somepoint, during her intubation, they severed one of her vocal cords (sadly, this is common in pediatric heart surguries). In order to give her vocal cords the time to heal, they began to feed her through an NG (nasogastric) tube. This is just a thin tube that winds down from the nose and down into the stomach. Once it was safe for her to eat again, it was discovered that she had developed a feeding aversion. Again this is something that is very common in kids who’ve had a surgeries at a young age, as they’ve been traumatized from the multitude of intubations, tubing and masks that they’ve had to put up with and now don’t trust anything around their mouths. Because of that aversion, Lily stopped eatting anything orally and then lost the ability to suck, swallow and breathe while drinking from a bottle. When we adopted Lily she was still being fed exclusively through the NG tube and that just became part of our life.
The hippo was just one of Jess’ many amazing hypafix animals used to hold the NG tube in place
After her second open-heart surgery and cardiac arrest, we thought we had come across a small miracle – in what we started to call, “the reset”, Lily suddenly gained the natural inclination to suck and so we started to work on feeding her again with the help of our amazing OT Lisa from Sick Kids. Sadly, the miracle was a little short lived, when we found out, via a video swallow study, that Lily was doing something called “Silent Aspiration”. For most people, when food or liquid goes down “the wrong hole” (the trachea), we cough or choke or gag because this is our bodies way of protecting our airway against something that’s not supposed to be there. In Lily’s case, her body doesn’t protect itself and anything thinner than the consistency of pudding would go right down her trachea and into her lungs. When this happens, it puts a child at risk for many complications, including aspiration pneumonia (think of secondary drowning). What this means, is that while we’ve been working on feeding we have had to be incredibly mindful of what her body is doing when we’re trying to get her to use her mouth to eat. We’ve had to limit the types of food we can give her, thicken them to make them safe and then constantly monitor how’s she swallowing them and whether she’s just letting the food go down or if she’s controlling what happens to that food. The other part to that is that when she’s sick or even when she’s teething – anything that causes some extra buildup, we need to limit what we’re giving her because her body can’t handle the extra work. Once we were released from Sick Kids, she was doing very well and we were really happy with the progress she was making, but then we had a much bigger set back because of the seizures that she developed. The medication that they used to treat the seizures caused Lily’s muscle tone to weaken, which in children with Down Syndrome, is usually quite weak to begin with . This meant that she no longer had the muscle control to eat safely. That put an end to feeding for quite some time and it’s been a large struggle since then to interest her in eating and she’s lost most of the natural skill that comes with doing something over and over again. So clearly, when we’re listening to someone say, “just make her eat more,” we laugh at them because if we could be doing that, we would have been doing that.
That’s where Holland Bloorview comes in. This amazing facility has a feeding clinic that is staffed with doctors, occupational therapists, speech and language therapists and dieticians. They all work as a cohesive team to observe and treat patients who are struggling the same way that Lily does. Within an hour of our first appointment, they were giving us new techniques – ones that were right for Lily (which we could tell because they started working right away!), a plan for a follow-up swallow study to re-evaluate what is safe for her to eat, and they were putting her on a newer, high calorie, formula for her g-tube, which will help her gain weight and really start to grow. Beyond that, they simply validated all of the concerns about her weight that we’ve been pushing for a year and really truly listened to what our concerns were for Lily’s long term ability to eat typically. As nice as the g-tube is when we’re out and about, it would also be nice to watch Lily scarf down a bowl of pasta with her cousins. I walked away, feeling empowered knowing that we had been right all along and we really do know our daughter best.
Trying to poke Hef in the eye under the watchful gaze of Uncle Jeff
Just a bit north of her mouth, we had Lily’s pre-operative appointment with the anesthesia clinic at Sick Kids today. A cancellation opened up a spot for Lily’s eye surgery sooner than we had anticipated and so she will now go in for the procedure on September 23rd. There’s some confusion around what exactly is being done (one procedure or two), and so we won’t know how long we’ll be at Sick Kids until early next week when it’s clarified. If they do the more difficult surgery – to help fix the strabismus – then anesthesia is going to recommend that she stay a bit longer for observation, because they will have to intubate her fully and that carries higher risks because of her lungs. To be entirely honest, Jess and I would actually prefer that option. We just know that Lily has a history of being a bit….tricky….so we’d rather be overly cautious, even if it means a night away from our own beds.
So relaxed during her ultrasound – you’d think she had done it before…
We also made time for an ultrasound this afternoon to look at a funny anomaly on Lily’s chest. Over her left nipple, just up from the scar from her first open-heart surgery, there is a small section that, for lack of a better word, pops out whenever she is crying or whining or doing anything that takes a little extra effort. We were not very concerned with it previously, but mentioned it to our paediatrician with the thought that if it could be repaired, it would be ideal to have it done while Lily was already under anaesthesia, as opposed to bringing her back at a later time. After looking at it today with the radiologist, it seems that it’s actually a section of her chest muscle that is thinner than it should be and so what we’re seeing is her lung expanding when she’s breathing harder. It wasn’t confirmed with us, but it sounds as though it’s not something they can repair and so it’s just going to be lumped into another one of Lily’s lovely quirks.
Making faces at Abby – because they’re best friends.