anyone with older prems with problems?

[JoeandHarry]

My twins were born very prematurely at 23 weeks and 5 days and are now 7 months old.

It's becoming more and more obvious as they get older that they are very severely delayed and I was wondering if anyone here has an older premature baby who recieved a diagnosis of cerebral palsy and how old your little one was when you were told.

I have already been told one twin has hypertonia, and I think the other one has hypotonia although the dr didn't say so when we saw him last week. They are due to be properly assessed by the child development team in just over a week.

 

[AP]

our LO is 14 months and has a Grade 4 IVH. Still to this day no-one diagnosed cerebral palsy, but its a big possibility

what makes you think they are delayed hun? Its still very very early xx

 

[JoeandHarry]

I think they are delayed because they aren't really doing anything yet. They can't reach for toys/faces etc., they don't try to roll, if they are led on their tummies they just flop down and can't lift their heads or shoulders at all.
They do smile and coo and one of them does a kind of giggle.
We were very lucky to not have any brain bleeds or major setbacks through NICU like so pre-24 weekers do, but I had fooled myself into thinking that they would be fine and clearly they are not. I know I shouldn't compare them to other babies but even next to a 6 week old they can't move as well.

 

[AP]

when you say 7 months old, is this corrected age or actual age?

 

[JoeandHarry]

7 months actual, 14 weeks corrected.

 

[Marleysgirl]

((hugs)) It's so hard to measure development with premmies, isn't it? I wish I'd kept a better record of when Andrew did things, but it's only really his long thread on here that helps me remember.

For the record, Andrew is just over 12m actual age, 9m corrected, and we think he's about 6m developed (so 6m behind his actual, 3m behind corrected). He had a pre-birth cranial bleed that could have affected his development; but it's also since been hampered by a spell of infantile spasms (apparently this affects development too) that fortunately we got under control quickly. His main issue now is (temperamental?) deafness, he's got hearing aids but they're making very little difference.

 

[AP]

Darlin, it is still SO early for them, don't panic. Not only do you have to thnik about that they are corrected age, but how premature they were.
Im sure the other girls will back me up here, but honest - theres nothin to worry about! I only got a first smile by then, and alex was born at 27+4 and she didnt do anything else for a long time.

Once things did happen though, she did them fast. Took her at the very least 6 months corrected to roll, and even then this wasnt right over. she never wanted to be on her tummy - ever. but she eventually did it herself and now she prefers it.

at 11 months corrected (now) she crawls all over the house, shes not walking, but im not worried. one of my friends 36 weeker has just started crawling - at one year old. So all babies, term and pre term, do things their own way.

i promise you, its very early days. I never even got a giggle for months and months,you lucky lady.

PS. I asked my other half, and he agrees with me

 

[JoeandHarry]

I know I should just throw the books in the bin and appreciate my babies for who they are, but I am just desperate to know what the future holds for them. They are incredible little people and I'm so lucky to have them, I just want them to have things as easy as possible.

 

[Lottie86]

We don't have a diagnosis of cerebal palsy (and we've been told that if he had CP he'd have been diagnosed by now) so I can't help with that although I do have experience of severe developmental delays as there is over a 12month difference between my little boys age and his developmental age.

Have you been told the twins are very severely delayed by medical professionals or are you just basing this on comparing them to other babies (I'm not being critical btw I was just wondering)

The child development team will be able to do a full assessment of your twins and they will tell you if there actually is anything to worry about or not.

Sending you

 

[AP]

the early days are hard, you expect more, i did too. but eventually you'll accept it and throw the books in the bin xx

 

[Agiboma]

i agree with SB22 throw those books away and enjoy your LO they have already beat so many odds and are with you today, i dont have a growth and development book and i WILL NOT buy one cause it will only drive me crazy. Your little ones seem to be normal for their age and i would not worry. congrats on your twins mommy

 

[Marleysgirl]

I have a good "development" book - it's a Development Journal from the Early Support team (linky)

The Developmental Journals help families track, record and celebrate their child’s progress through the early years. They are designed to support early intervention by improving everyone's understanding of the developmental processes involved and by providing a shared basis for discussion as a child grows and changes.

There are four Developmental Journals which comprises of a generic journal which can be used by families where children have additional needs or undiagnosed conditions. There are also journals for babies and children with visual impairments, Down Syndrome and a Monitoring Protocol for Deaf babies and children.

The journals enable joint working, by improving everyone’s understanding of early childhood development and sharing information about how a young child is progressing. Where many different people are in contact with a child, they provide a shared set of documents for reference as a child grows and changes.

I find it really good because, although it lists various stages of development with a calendar for you to note when baby achieves things, it does so without any time-scale alongside. I update our records at the end of each month and it makes me realise that Andrew is developing / progressing, just not necessarily in line with the average baby.