Yeterday we had our long awaited ENT visit with Enya. The doctor was lovely and even better we were seen on time (actually a bit early). Unbelieveable but true, we were finished and sitting in our car half an hour after our appointment time. This is very important as we find it very difficult to get back on schedule when it's been disrupted due to appointments (of all sorts). We couldn't choose the time for yesterdays appointment so it was at a feed time and in the end Ciara sill only had 4 feeds yesterday-she drank about 100mls less than we aim for but not too bad under the circumstances. Operation sleep took a bit of a pounding as well with Enya waking up at 3am for a feed, at least she drank well so her days target was spot on ;-)
The results from the ENT were very positive. We don't have any anatomical reason for Enya's difficulty feeding, she even scoped her vocal cords as we mentioned that her voice got a lot quieter after the 2nd intubation. The soft palate, toungue and vocal cords are all moving symmetrically and appropriately so she thinks the problem is lack of co-ordination and muscle strength.
This now makes it all the more urgent that we get into see the SLT (speech and language therapist), I called them last week and was told it would likely be another 3 weeks before we get called for an appointment. This is a child with difficulty feeding and she has to wait 6 weeks for an appointment! I am so cross that I didn't stand my ground when we were still inpatients when I asked for a SLT referral. I was fobbed off with physio would solve the problem by improving the co-ordination (I'm a physio, I know how little I can help with swallowing difficulties!! My only excuse is I only treat adults and paeds is definitely a speciality all of it's own). I'm going to ring again today and see if I can't get an urgent appointment. In the meantime I fear we are only making the problem worse, as we can only get the amount down which Enya should be drinking, by assisting her. We press on the teat in time with her chewing motions so she gets milk (she doesn't suck at all now only chews). The problem is if we stop doing this she loses all interest in the bottle and starts pushing the teat out her mouth and then we've really lost. We have to then wait about an hour before we can try again. I'm pinning a lot of hope on the SLT, it can't come soon enough.
Last note: we have decided to wait for another couple of weeks before trying solids as I feel, and everything I've read on the internet backs me up, they should only start solids at 4 months adjusted.
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4 comments:
Glad the ENT checked out.
I'm sure you have, but have you experimented with all sorts of different nipples? The orthodonic ones? The preemie ones? Faster flows? I'm only asking because we went through about 10 different nipples to find one our littlest one would suck on appropriately. And once we did, it was a whole new feeding world.
Perhaps solids will be easier on her?
I hope you get it worked out soon. Feeding issues are rough.
Glad to hear there's nothing anatomically wrong with Enya's throat.
I really hope you do get the emergency SLT appointment! Is it possible she might do better with solids? Since the chewing sounds like it's going well, and everything? What happens for her fluid intake, though, down the line if she's not sucking on her own?
Hi Cathy
Yup, tried all the different nipples we could find (not the choice was all that great- about 5 different types). Some didn't work at all, so we are stuck with the NUK wide necked bottle latex teat as we get the most milk out of it when we press it. Enya hardly ever chokes so swallowing is not the problem, sucking is :-)
We had the best luck with Dr. Brown's (don't know if you can get that over there?) He never had the stamina to have a good strong suck, but the level 1 nipples (they also have preemies) were soft enough that he got a good amount out with each try. And the Level 2s were equally as soft, but he couldn't keep up with the flow.
It seems like everyone I've talked to that had a NICU stay found the Dr. Brown's to be most like the disposable nipples the hospitals use.
Does she like pacifiers at all? Or does she not suck on anything, ever?
It sucks that you have to wait so long for an appointment. It was like getting PT for us. A couple weeks to an adult is generally nothing - even to a child. But to an infant? It's huge.
Keep harassing them. You need to get her eating, and it sounds like you need help.
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