We had an appointment at the NICU follow-up clinic last Tuesday, and I've been meaning to update every since then, but, frankly, I've been too disheartened to sit down and write. All in all, Becca is still doing well. But we've still got some significant struggles...namely, her growth.
Becca is itty bitty. I mean, for a long time, she was Itty Bitty. And she's still living up to her nickname in a big way. She's not growing how she needs to be. We don't expect her to catch up; her prematurity AND her severe IUGR is realistically really just too much to overcome. But she needs to hold her own curve, and she's not.
I knew something was up when she hadn't gained any weight in the 3 months between her WIC appointments. Our nutritionist there mentioned the possibility of feeding therapy and/or night tube feeds, but I didn't worry too much, as the WIC nutritionist's background is more in general women's and children's health, not in micropreemie growth (though she is wonderful!). At this appointment, though, we got a more detailed analysis.
Here's where she was 5 months ago (at her last appointment at this clinic). She weighed 12 pounds, 11 ounces and was 23.5 inches tall, which put her well below even the 3rd percentile lines for her adjusted age (her age based on her due date, remember?). Her weight to height ratio was right around the 50th percentile, meaning that she was almost perfectly proportioned; she was the "right" weight for her height (unlike the rest of her family ;) ). Shortly after this appointment, she started wearing 3-6 month clothing.
Last week, at 17 months actual and 14 months adjusted age, she weighed 13 pounds, 4 ounces and was 25.2 inches tall, which, again was well below the 3rd percentile line (no surprise there). However, her growth curve had flattened, meaning that not only is she not catching up to her peers, she's not even keeping up. In short, Itty Bitty is getting itty bittier. Her weight to height ratio had dropped into the 25th percentile range, which was alarming, though as our resident statistician (and SuperDad) noted, that measurement may not be entirely trustworthy for her, as other kids her height are younger and still in the chubby baby phase, whereas, even "normal" kids her age are slimming down as they move into toddlerhood. Still, it's far from encouraging. Even now, she's wearing 3-6 months clothes, many of which remain too big for her. (You may have seen me whining on facebook about her crawling out of her pants. It's still happening.)
So, what do we do?
If her growth doesn't pick up, we'll have to put in a feeding tube. We're really hoping to avoid this. It's more surgery, it's more equipment, it's a pain, and it can actually make it harder for kids to learn to eat because they aren't as hungry during the day. But it would save me a lot of trouble and stress trying to get precious calories into her. (If only she could have some of my extra pounds!) If we have to go this route, it won't be the end of the world. She came really close to getting one before she can home from the hospital, actually, so we were kind of used to the idea. But now that she's so busy and healthy and such a big kid, it feels like we'd be taking a big step back. I'd just rather not cut a hole in her stomach.
Before we jump to a g-tube, then we'll try a few new therapies, namely feeding therapies. We'll see an occupational therapist (OT) and a speech-language pathologist (SLP) for evaluations. Both OT's and SLP's work with feeding, and since we're not sure if it's an oral-motor issue, a sensory issue, a straight-up behavior modification issue, or something else entirely, we'll start out with both of them and let them decide who needs to follow her. Since I also have some concerns about non-food-related sensory and speech issues, I'm really glad that she's going to get a full evaluation from an expert in each discipline. The good news is that a) I have talked to several mothers whose kids have really benefited from feeding therapy and b) there are really good OT's and SLP's at Sumner Station, which is half as close to our home as Vandy is.
That's especially good news because there's a distinct possibility that we'd follow with each of them weekly, which would put our weekly schedule up to 2.5 therapies (since PT has now dropped to every other week!) and one Early Intervention session - plus all the doctor's and WIC appointments. Phew. I'm reminded that I left the working world so that I could focus more on Becca's care - and it looks like that was a really, really good decision!
That's where we are. In some ways, we are back at square 1. Eating has been the perennial challenge. But maybe now we'll get the help we need. And I'll admit, it couldn't come at a better time for me (except maybe sooner!) - I'm about at my breaking point with mealtimes. Of course, I try not to let Becca see my frustration, but yesterday, she literally ate cheese, a couple of cheese poofs, and a few Cheez-Its, and that is all. Ugh. I know stressing out about it will only make it worse. She's to the age now that I'm trying to avoid talking about her "problems" in front of her, so if you call for an update, please understand that I'm trying to be discreet around her. I also feel like I've somehow messed up her eating forever. I've been able to get plenty of other kids to eat, but the one that I am mother to just won't eat. Again, blaming myself doesn't help, either, but, it's easy to do...so feel free to load up the encouragement. :)
This Thanksgiving, I'm wildly thankful for my precious girl...even with our challenges. Who knows, maybe she'll be inspired by the gorgefest that is sure to take place at my parents' house in a few days - maybe the 6 cousins can work some magic on her!