Developmental delay in a premie

[Emmyduck123]

Hi guys, il try keep this as short and sweet as possible!
My daughter was born at 33 weeks, she spent a month in nicu and then came home.
At around 8 months, I noticed she wasn't reaching milestones she should be(as shes baba number 3, im well versed in this!) Her HV fobbed me off, saying she will catch up and I was just worrying because of her other health issues(she has a blood disorder where her blood doesnt clot properly)
She's now 16 months, cannot eat textured food, cant feed herself, has physio once a week for sitting/crawling, she cannot bear weight by herself (so no standing etc) shes had a mri of her head to check everything is where it should be, that thankfully came back clear(her doc almost threw a party to celebrate!) We are waiting on genetic tests, but I was wondering if anyone else has been through this and has stories to tell? Il take good bad and ugly, just to prepare!

The girl is only 33 weeks. Give it time and see if things change. I wish you all the best.

She was born when I was 33 weeks pregnant, shes coming up to 17 months now. Developmentally hospitals say shes around half her age.

I had it explained to me once that being prem is a bit like trying to use a car before it has been fully built. It might go, bit trying to do all the final touches is
much harder once the car is being used as opposed to still being in the garage.

I don't think there is enough info easily out there for prem children. I never know with mine (prem & adopted) what is to do with prem, or genetics, or care in initial months, or just luck, but ultimately I guess it doesn't really matter. You just do the best you can.

I’ve not had a baby born prematurely but I did have one who couldn’t cope with anything other than smooth purées until 12 months.

With them it turned out to be a Tongue Tie that had been missed by several HCPs. I wonder if it’s worth getting your DD checked for a tie?.

If you haven’t already had a referral to SaLT I think it’s also worth asking your HV for obe as they can rule out physical causes of her not being able to chew and swallow.

Has she been referred to Portage yet too?

My little one had a teeny appetite when she came to me at 2.5. She was on 9 separate eating occasions per day as that is how the FC had found she could get enough into her.

She has had one app with SALT, they said she has a sensory regulation issue with textures as she manages her milk and smooth puree(like the 6 month pouches etc) fine. We were meant to hear back from her after 6 weeks, but its now been about 3 month so im not holding my breath 🙈
She has physio each week, but thats all we've been referred to(she has a dietician too but thats cos shes on a high calorie milk)

I would ask about Portage. It sounds as though it might be useful

Do I ask her doc at the hospital or just her HV? She has a check up a week tomorrow with HV team so I can ask then

I’d ask the HV Team and it’s probably worth reading up a bit on portage first

Thank you for the advice! Sometimes it just feels like we're left to work it out on our own, and I don't know where to turn.