Question regarding development of preemies

[Glee]

Hello Everyone,

I'm new to this forum so i hope you dont mind me posting. I've been looking for a support forum for premature babies for a while as i have so many questions regarding when they should be hitting milestones etc. and could really use some advise from people who've been there or who are going through this at the minute.

My little girl was born 4 weeks early on 25/12/09, a very unexpected christmas day arrival lol. She was moved between NICU, PICU and SCBU for the first few weeks of her life because of a distended bowel. She couldn't feed properly due to her bowel distension, not because of her weight (she was actually 5lb 6oz). To this day she still can't open her bowels herself without daily suppositries and there appears to be no medical reason for this. She also has a hole in her heart and a narrowed artery to her lung which isn't troubling her at the moment but she may require surgery in the future if it doesn't right itself over time. Also, although she passed her initial hearing test she has since lost her hearing, this is likely to be glue ear and can't be fixed until she's 8 months old.

She's almost 6 months old now, corrected age 5 months and she still isn't holding her head up and obviously not babbling or laughing as she can't hear anything. She's never really smiled at me, except when she has wind and i'm just not sure how much of her delayed development is due to her being premature, hearing loss etc. or if there's something more going on?

The doctors have tested for every possible genetic syndrome and found nothing. Yet, my health visitor keeps referring to her as having special needs before we know anything! I no longer attend local mother and baby groups because they all treat me and my daughter differently.

I'm extremely proud of my daughter and i'll love her no matter what, i just can't bare everyone treating her differently simply because she's developing slower than usual.

I hope this post doesn't upset anyone, i'm not sure what advise you can give i just feel so alone at the minute and really confused. Has anyone had an early baby who's not hitting milestones in the same way as other babies?

 

[BrittLeblanc]

Hello and welcome! My lo was born at 25 weeks and 2 days. It's a little different than what you're going thru but I was going to tell you my story.

My lo was born and turned blue was rushed to ISCU to be put on a vent. He was on 100% oxygen and still not fulling getting to his feet. They told us it didnt look good and that in about 2 hours we could come visit Riley. 2 hours later the husband and I went to visit Riley for the first time he was then on 40% oxygen. He looked very red and shiny. The first week was very hard because at this gestation there is so much that could happen in the first week. Now my lo is at 7 week and 2 days today and he is doing great. He was doing good on feeds but then they had to stop them several times due to infections and now this time NEC. These premie's are all so different so you can't really give a time line as to when their milestone's happen. They do their own thing. They let you know when they are ready to move forward, sitt still, or even to take a step back. It's all up to the babies, but when that time comes for all the milestone you will be so happy! There are so many up and days while premies are in the hostpial but they are ALL strong fighters! I hope your LO is doing awesome right now. You and your family are in my thoughts.

 

[Foogirl]

Abby has missed almost every milestone by miles. The only thing she is ahead in is speech. At 14 months (11 corrected) she is only just sitting unaided and hardly crawls.

The thing with milestones is, even full term babies can miss them by miles.

As long as you are happy with her and are willing to let her go at her own pace, I would relax about it. Keep going to the baby groups, don't let anyone put you off, the social interaction will be good for your LO. And ignore the HV - they are all full of shit!

If she is having trouble with hearing, perhaps there is a local deaf group you can get involved with - even if her hearing loss is only temporary, you still need support to help you help her develop her skills. You could also ask if there is physiotherapy available to encourage strength in her neck and back?

"Special needs" is just a label people put on babies/children/people when they have no idea what else to do. It is such a ridiculous term because it is so wide ranging there is no point in grouping everyone under the same ubmrella. Each child with each problem needs different support and help.

Try not to worry too much, you might find everything comes together really quickly. Once one thing happens, the others tend to follow quite quickly.

 

[shreedhara12]

Even with full term babies, things can be little slow. My friend's daughter is completing a year this month end and she is slow in responding actions, still crawls on tummy and does not use palms/knee, keeps a little sluggish action, just makes some irrelevant sound etc. One cannot compare one's child with another- every one has their development pace.

Do not get discouraged, do not lend your ears to unwanted talks, just help your child interacting with him/her.

 

[Glee]

Thank you so much for your kind replies and also for your support.

I feel awful for making such a self indulgent post when so many of the members here will still have tiny babies in hospital. I've just been struggling a lot lately and the health visitor really upset me after her visit.

I'll definitely enquire about local support groups for deaf infants/children and were also on a long waiting list for physio. I wish there were more support groups out there for mums of premature babies, as when you leave hospital after SCBU there are so many questions that crop up that only another preemie mum can answer.

I feel much better for finding this problem and wish you all and your babies well. They will all be stronger for their battles in the long run. x

 

[Foogirl]

Thank you so much for your kind replies and also for your support.

I feel awful for making such a self indulgent post when so many of the members here will still have tiny babies in hospital. I've just been struggling a lot lately and the health visitor really upset me after her visit.

I'll definitely enquire about local support groups for deaf infants/children and were also on a long waiting list for physio. I wish there were more support groups out there for mums of premature babies, as when you leave hospital after SCBU there are so many questions that crop up that only another preemie mum can answer.

I feel much better for finding this problem and wish you all and your babies well. They will all be stronger for their battles in the long run. x

Have you considered going private for physio. It might not be as expensive as you'd think - and worth it if you can find the cash.

Support is terrible. Have a look on the Bliss website, you might find a support group in your area. If not - we are always here.

And please do not worry about upsetting others or that your problems might seem less than some people. We have all been through such different journeys and are such different people, no-one would ever think badly of you for posting your own problems. If you are struggling, you need help and advice - no matter what the problem is.

 

[Marleysgirl]

It's a shame that you're not getting the support you need. By way of contrast (and to make you all jealous!), Andrew now sees:

Paediatric consultant
Physio
Audiologist
Peripatetic teacher for the hearing impaired
Epilepsy Nurse
Neurologist
Health Visitor
Pre-School Special Needs Play Specialist

Life is a never-ending round of appointments. Today the Paed consultant decided to refer us to a Dietician, and for an ECG as he has a fast heartrate.

Anyway .... onto the main reason for my reply (rather than annoying you all!) OP, my son was diagnosed with an neuro-sensory auditory disorder, which basically means that the problem is with the nerves to the brain. Until he is older, we won't really get any idea of how much he can hear - first impressions are that he has no hearing in one ear and only partial hearing in the other.

For many months, he's only produced vowel sounds, and some hissing for laughter. We expressed our worries to the consultants, who advised that babies can start babbling at a wide range of ages. This last two weeks (so 9.5m actual / 7m corrected) he has finally started babbling, we are getting consonants (nanananana etc).

So don't lose hope yet. Just because your baby cannot hear fully, won't stop them from making sounds. I think you've just got a quiet, sombre baby