Premature twins whats normal whats not.

[Jemeraldx]

Okay so I have 'just turned' 2 year old twins. they're identical & where born @ 29 weeks they weighed 2lb 30z & 3lb 2oz the first born & largest (our little 'fatty phoenix' lol) thrived & sailed through his time on the neonatal unit had usual things associated i.e on cipap, bit of reflux but otherwise okay. after 3 weeks on the ward smallest one (Josh - look up 'joshua ashton dolan' on youtube) deteriorated suffered 2 collapsed lungs after stopping breathing one night & had to be put on a ventilator his weight dropped down to 1lb 13oz but slowly he pulled through & got better. not only is he further behind developmentally but he's hfurther behind because he was so ill @ first he was only a couple of weeks behind mason (you could practically time it) for a child that could have brain damage he's now walking & doing just about everything except talk we thought it could be his ears he doesn't seem to hear us ( or just ignores us) they were both born with cleft palates which have now been repaired which can lead to glue ear which we were told they both had on there last visit to see the hearing specialist we went for a further check up hoping it would be the same they would fit gromits & it would make a difference only for us to be told they were clear we'd always put it down to bvad hearing now I don't know what to blame it on He says mam mam or nan nan when hes upset the rest of the time its just noises he makes at the back of his throat his brother mason is still not stringing words together but uses more words nan nan/daddad/mamam yeah/no etc & seems to have a greater understanding of things but he does talk to Josh (although no one knows what hes saying & Josh doesn't talk back but seems to understand what hes saying) is it a twin thing? because I've heard it can be delayed in twins or is it a premature thing? I don't know anymore.

I don't know about the language development, but glue ear is intermittent. It can be 'clear' on one test then two days later the hearing could be seriously impaired. I would persist with the hearing tests if I were you. It took me until my DD was 7 and a test at school showed she was substantially deaf before I was believed and she was allowed grommets - which were bloody fantastic. I used to make sure I spoke to her face to ensure she could understand me as most of the time she was lip reading. I also had to tell all teachers she encountered at school the same thing. Glue ear is a most frustrating thing!

Your post is quite difficult to read due to lack of punctuation and paragraphs, but has he actually had a hearing test, or just the little probe in the ear thing to test for glue ear?

I would firstly make sure he can actually hear properly, but probably wouldn't worry too much. None of my boys were talking well at 2.

Thanx Katharineclifton I know glue ear is intermittant. I'm not sure if its that or the fact that they're twins (I've been told twins can be further behind with speech) or a developmental thing because of they're prematurity Joshua seems to be affected the worst & he's the one we worry about most at one point we didn't even know wether he'd be brain damaged. He stopped breathing during the night (while he was on SCBU) & had to be rescucitated. They're at that age were its really hard to test them for things. Its like a waiting game & Melindaaa yes they've been for both tests Josh's never had a clear test (even when he was tested on SCBU) & again its really hard to tell if he can hear us (or wether it is just selective). Just wondering were either of yours prem?

I think the "twins speak late" thing has been a bit discredited, so I would focus on the other issues.

Are you under specialist care still? What does your HV think?

Just enjoy your babies and try to let go of the past and what happened in SCUBU. Sounds trite, but you need to do it.

Even if there is a hearing difficulty and speech is slow there isn't much that can be done about it right now anyways. Make sure you speak to the child's face if there is a possibility of impaired hearing - obviously after colds or during winter all the time really.

Schmee I think your right, but its just what I've heard. well its that & I've heard of other 'singletons' already stringing sentences together. I put this because they're under specialists ( paediatrics, ophthalmology, hearing, development, physio etc ). The hearing specialist is the only one who isn't concerened but the paediatric doctor & development doctor are a little concerned with there hearing. Its not that I dwell on past its that the past (i.e there time on SCBU) has consequences some we'll not find out until they're older. I asked wether anyone had preemies because its good to talk to someone who's been through the experience & knows what you're going through.I do enjoy my kids. This isn't something I think of everyday , but it is hard knowing thatsomething may be wrong with your child.

My twins were born at 23 weeks and were in NICU for 17 weeks. Neither of them have had clear hearing tests, and their most recent ones showed moderate hearing loss for both babies, and both babies had glue ear. They aren't yet able to tell whether the hearing loss is due solely to the glue ear or nor.

However, both twins had grommits put in about a month ago, and I would say one twin is now hearing normally, the other I am unsure about but is making lots of noises and mimicking syllables etc. They will be two in January.

If your instinct is telling you that something isn't right, then go with it. Have they been referred to an ENT? It might be worth asking.

My twins have had a similar history Jemeraldx. I think you do dwell on what happened in SCUBU tbh. Your first post on here details the history. They your second post does the same thing. And your posts all over the boards do this as well.

I have to because I have to give a breif history of there past its no good putting a problem if people don't know the reason behind it.

Its the same when I go to appointments I have to go over & over it again & again- tbh its a pain up the arse. I should put it in the 'about me' bit & just ask people to refer to it.

2 years is not that late for talking. I've not got much experience of development in very premature babies - mine were only slightly prem at 35 weeks but I would suspect it's maybe more do do with the cleft/hearing issue.

One of my twin boys has a cleft palate and has only recently passed his hearing test (at 18 months). He had a flurry of hearing tests when he was born and then it's settled down to every 6 months. Even though he has passed he is getting another test at 24 months. He is also scheduled to see a speech therapist, he had his first appt about 9 months and was due one last week but it was cancelled, hopefully will get it rescheduled again soon.

If you are worried about his speech I would speak to your cleft nurse and ask for a referal to the speech therapist, every cleft team has a speech therapist as part of the team so shouldn't be a problem getting refered. In fact I'm quite surprised that they he hasn't been seen already as it is routine here.