"Oh, hello there", says Arabella. "It's nice to see you again".
A lot has happened in the last few months...
Belle's grown bigger (although very slowly, now at 13lbs), she's gotten stronger, she's more coordinated, she started to verbally communicate, she's rolling around more, and she had her first two teeth come out...
So many wonderful milestones were celebrated lately. Mom and dad are so proud of their big girl. It's been incredible to watch her flourish.
So what's ahead for Arabella in 2018?
More developmental assistance, occupational therapist sessions, ongoing chiropractor appointments, physiotherapy, and follow-up appointments (for things like hypertension, kidneys, eyes, and lungs).
After months of planning and coordinating, Arabella finally has an entire team of specialists at her disposal. So if she ever requires services like speech therapy, for instance, it's all connected through the same program.
Hopefully in 2018 we'll finally be rid of her oxygen support. There's nothing Bella would want more, than to get rid of all the gear around her face. She simply wants to be free. She's ready to cut the chords.
And in the next month or two, we'll definitely be getting rid of her feeding tube - but it will be replaced with a different kind of tube - a gastrostomy tube (also known as a 'g-tube'). It's basically a feeding tube placed through the abdomen into the stomach. Here's the basic idea:
Since Belle refuses to bottle feed (and she can barely tolerate any kind of solid food) this surgery is absolutely necessary. It's also long overdue. The g-tube will free up her nasal passage, and relieve her throat and esophagus (from the constant irritation of the current tube). The procedure might seem unnerving to some of you, but you shouldn't worry. It's for the best, and it will help her in all kinds of ways. It's going to give her a lot more freedom, too.
Right now Arabella still throws up very frequently. She gags and retches, and eventually vomits. Sometimes it's a little bit, and sometimes it's a lot. We're constantly changing her outfits, changing her linens, or looking to grab the nearest blanket to catch her aspirates. A lot of the time the vomiting is so sudden and violent that the milk comes out of Arabella's nose. Sometimes it even gets into her lungs. It makes her cough fiercely. She often has tears in her eyes. It's not a good time for anyone, and Kiera and I are quickly reminded of where her 'feeding aversion' originated from. It's clear that for Arabella, eating causes pain.
Her current feeding tube irritates the back of her mouth and throat, and it causes her a lot of discomfort. It's likely a big reason for her throwing up, and it's why Bella doesn't want to eat very much. It's basically another thing that gets in the way of things.
She refuses the spoon, and we've been instructed not to force her with any kind of food, so we let her do everything herself. Even if she just tastes her own fingers, that should be considered a successful session. And now that Arabella has teeth coming out, we've been told to eliminate the 'hard munchable foods' (like carrots and celery), since pieces can easily break off and become a chocking hazard.
Arabella still has a lot of negative associations around her face and mouth. So hopefully with the g-tube, she can slowly begin to feel normal again...
We knew that Arabella's eating was going to be an uphill climb. At this point, we're not phased, or even worried. She's doing so well otherwise, that we have no reason to complain.
When Belle first stopped bottle-feeding, I'll admit it was a bit discouraging for Kiera and I. We felt a bit saddened because we thought we had failed as parents. But we got over that rather quickly, and we're not bothered by it anymore. In the grand scheme of things, we're lucky that she's so strong and healthy.
Stay tuned in the weeks ahead, as there will be posts for Arabella's 'one year birthday', more updates about Arabella's development, we'll look back once more to 2017, and posts about her upcoming g-tube surgery.
