27.5 weeker can't suck

[HeleenC]

Hi
I'm new to this forum and hope I'm doing this right?
My boy-girl twins were born at 27 weeks 5 days weighing 1.2kg (2.2lb ?) each. They both had NEC while in NICU. In the boy's case it was very serious and we lost him after 2 months. The girl's case was not so serious and she came home after 77 days in NICU. She is now 5 months corrected age and can still not really suck on a bottle. She takes an hour to finish a (150ml, think it is 5oz) bottle because she basically just wait for the milk to drip in her mouth and then sometimes she would swallow it. She gets very distressed when feeding and seems to have an aversion to anything in her mouth (she was intubated for +- 3 days and was tube-fed during her stay in NICU). She often gags and throw up. We consulted with speech and occupational therapists who said that it is sensation thing. Did anyone else experience something similar with a prem baby? Any advice? Please?

Just want to add she does have a reflux and takes Nexium for it.

Welcome HelenC. I have no experience in regards to your situation but i didn't want to leave your post unanswered. It sounds like you have been on such a difficult journey. I'm sure another prem Mum will be along soon with much more experience x

I'm so sorry to hear about your son, but pleased that your daughter is home with you.

My son had trouble sucking, which I appreciate is a slightly different issue, but perhaps my trial and error will be of some use. Have you looked into cup feeding? She might prefer this. I sometimes gave my son milk on a spoon if things weren't going too well but kept up bottle feeds so that he could practice sucking. It also took a while to find a bottle and teat that suited him, and he did a lot of non-nutritive sucking (basically we have him a dummy) to get used to the skill and sensation. He's now 20 weeks actual age (born at 33) and is polishing off bottles at an alarming speed.

Helen Im so sorry to hear about all you've been through. Reflux can cause big feeding issues, dds was only controlled by a heroic dose of omeprazole and my going dairy and soya free. She also had a tongue tie and still has a top lip tie. Both of these affect latch and can cause feeds to be very slow going. Google image search them and see if they look familiar. I have heard of oral aversion in prems and it also occurs in los with bad reflux. It is a really tough stage dd used to choke on fresh air if there was the slightest breeze. It was awful. But shes now a fierce 2 year old. Baby steps but you will get there. Handhold til then.