Tomcat and you other lovely ladies can u help?

[eastyorksmum]

hiya its eastyorksmum here remember me telling you about my darling neice born at 33 weeks prem?

Anyway mum and baby are now home, theve been home abut 3 weeks now, the thing my sis is not getting much support, her community nurse is obnoxious, and HV didnt even talk about baby, she talked about her holiday??? and is not comming back for 3 weeks grrrr to see my sis.

Please could you give me some advice or steer me in the right way to contact someone my sis lives in Rotherham.

Hiya, nice to hear from you, how is that darling niece of yours?

Re support, well how about as a started introducing her to mumsnet?
Or if you like she is welcome, more than welcome, to call me at home for a girlie chat and fire questions at me etc. Done it before a few times so it's no biggie and always a pleasure.

There is a website which I'll search for called LOADS which has a chat room and is esp for people with or families with someone who has DS. Edisvold introduced me to them, the woman who runs it is lovely and we keep in touch a lot by email etc.

There is also Portage. It's not always available, bit of a postcode lottery thing. Again, I'll try and find a websire or general number for you.

Other than that, hmmmm, well not sure really.

I'll be back with links but meanwhile have a think about getting her to call me.

TC x

hi, afraid i know nothing about prem babies but surestart are a fab organisation, if she has one in her area they will almost certainly be very helpful with all sorts of things, and will probably be able to point her in the direection of other organisations who can help. have you tried social services? they are not just there for people to report abuse to! they can be extremely helpful and tend to have lots of lists of groups in the area

Oh hang on, sorry, does your neice have DS? Have I got that all wrong, was it a premature issue here or is it Ds as well?
Sorry, TC x

here is the thread TC

hiya you are all so lovely i knew you would come and help me hugsssss

Tomcat she was was prem 33 weeks and she also is down syndrome.

Ive been to see my sis today, and she seems to be coping better than i had heard, our Georgia is beautiful she now weighs 5 1b 10 and she is so active and alert.

Im going to talk tom y sis about mumsnet as she knows i have many friends on here, it will be a good support to her i know.

Tomcat thats wonderful of you saying she can call you, our main pri ority now is her prematurity and her feeding as she has ahole in the heart and needs an opp.

Seeing her with her little family has re assured me though, and ive said that after xmas i will happily go and stay with her a couple of nites to support her i just dont want her to feel isolated you see, anyway she said that would be lovely.

xxxxxx thanks

what about TOMMYS????

My DTs were born at 27 weeks but when came home was a week after due date but 3 months old

We felt no one understood anything abpout preemies

Okay hon, well I don't know about the prematurity side of things and holes in heart but if you or your sister ever want to talk about DS, you know where I am, pleasze just get in touch.

Hope you and your all of your family, your sister and her new little one have a wonderful Xmas.

TC xx

here is their site they may be able to help

I think babycentre have a discussion board specifically for parents of premature babies - your sister might find that useful. Sorry to hear the the HV and nurse have been no use.

Hiya eym - there's that 24 weeker site (sorry - can someone remember the proper name ?) started by three mums of very prem babies to help with some of the health issues such as the heart opp etc... might be a good source of info too...

HomeStart? They're more than willing to take on families in exactly this situation for a bit of Mum support (you get average of 4 hours a week, which isn't bad I think)

They have a website where you can check their postcode. Really easy to set up but can take a few weeks depending on how many volunteers they have... they won't match with someone who isn't right but they also have support groups etc, or at last I did when I worked for them

HTH

I did see this thread last night but wasn't sure if the babe had been born with down syndrome or not so left it - sorry - now I know where to direct you.

My dd1 was born 10 days early - so not that technically premmie but for the previous at least two weeks had failed to grow so struggled with that. She was born with what is technically called a Complete Atrial Ventricular Septal Defect - or AVSD. Basically holes in her heart.

She was fed via nasal gastric tube until her cardiac surgery.

Where did I get support from - fortunately my new HV and Community paed nurse were fab - we moved not long after dd1 came out of hospital - however can relate to the horrible one.

With that - perhaps she can contact her doc's surgery and ask for another HV - there were at least two in the little village I lived in and could have either.

TC has given you the link for LOADS> As your neice has a heart defect - you could also direct your Sis to the downs heart group - they were fab for us and we still have contact despite now living in Aus.

See from the other thread you already have those links.....

found this site fab - section for relatives too

here

Unfortunately if the HV or paed nurse has had no experience with down syndrome - they often do not know where to start.... my HV had limited dealings with Down syndrome but was just such a naturally caring, fab person who was willing to admit she did not know but would always try and find out things for me etc.

Your sister can also contact the Down Syndrome Association in the UK - they have great publications they send out to you especially for new parents - we really appreciated that. She may be able to through the DSA also make contact with other families in her area. The DSa also can provide you with growth charts specifically designed for children with down syndrom e- makes life a little easier when not so wise health visitors start making noises over where they are on the charts.

this book we found really useful

Dh and I did not read it all in one sitting but it was helpful for dipping in and out.

I am available via email though not in the UK. Did have our story somewhere I could possibly email for you....

There are a few mums from Sheffield and Rotherham on the BLISS forum.