my lovely neice ahs just been born and we found out shes down syndrome any advice?

[eastyorksmum]

hello ladies im eastyorksmum from junie thread, as you can see, and my younger sister 27 has now had her baby girl 31/2 pound, even though she was 33 weeks pregnant, we think her waters started going, and the baby had to be brought through a section on sunday morning.

Our little girl is now been tested for downs syndrome, as her eyes and ears werent in the right position, now she isnt feeding proberly and has to have an opperation on her tummy because she isnt dijesting her milk.

I wondered if any of you lovely ladies had any advice for me and my family

I don't have a Downs child but I do have one / possibly three (!!) kids with varying SN, and I have worked with ds young adults in the past. Yes your sister is going to have some parenting challanges, but she is also goping to have one of the most exciting and rewarding times of her life raising a child of her own.

be there when she needs you- which may well be after the adrenaline roller coaster comes to an end. You do grieve for the imaginary child you expected, I still do with Sam certainly, but at the same time you rebuild your life and it becomes different to what you expected but just as full of life, hope, love and promise as that you dreamed of. The milrestones might be hard to achieve, but goodness! the feeling when you get there!!

Congratulations on your new addition

(Thombat's great isn't she?)

Hiya - I too have a little 3yo who was born with down syndrome and as TC/TB says also born with a complete AVSD - major holes in her heart - but operable. We knew about her heart defect before she was born and were told that in all likelihood dd1 would also have down syndrome.

We were still upset when she was born and the DS was confirmed - what upset me the most was knowing how ignorant and cruel other people can be.

Dd1 was fed by ng tube for the first 8 weeks of her life - from the moment she came home from hospital she slept through ( unlike her little sister!!) she was a dream to care for. At 8 weeks she underwent two open heart surgeries at the Royal Brompton and to look at her now - unless you see the scar you would never know.

As I type this she is watching Hi-5 her favourite TV show and dancing and laughing. Just like any other 3yo.

Downs Heart Group are FAB - they were so helpful when we were facing dd1's surgery.

YOu know - the biggest lesson I have learnt is that for all of the times you are despairing at something - they instantly disappear when your little one smiles, achieves a milestone.... our dd1 started walking earlier this year and you know - that was more precious to me than anything.

She now attends a sn kindy two mornings a week, goes to swimming once a week, and next year will be attending mainstream kindy for two days a week.

Here are some websites/groups that we found helpful -

parent group

my parent group here in Aus - links to info

here

If you want to cat me and then pass my details onto your sister - you are more than welcome.

The biggest piece of advice - love her, cherish her, enjoy her, celebrate this amazing life and the wonderful opportunities your family are about to experience.

I know TC has posted lots of pics of her little one and I have just posted another one of my dd1 for you to see.

here

TC's little one

Hi eym, it's berolina
Congrats on your little niece. This sounds a bit like the son of someone I know, who's about 2 months now. He too has Downs and digestive problems, but the operations on his digestive tract so far seem to have been successful. I don't know much more detail than that I'm afraid.

oops didn't read your second post about her pooing. sorry

hiya berolina nice to see you hugs.

morning ladies thank you so much for your posts
our little girl is doing fine, her blood count has come down and they are now introducing her feeds again 1 mil at a time.

My siter is still expressing and doing very well with it. There has been other complications that have arose since yesterday they now want to test the baby for the fish test cysticfibrosis which is another frightening thing for my sis.

Im hoping to go up and see baby georga again this weekend if my siter says that is ok, as it is important that she spends all her time with herlittle family.

I never realised there could be so many camplications with DS but also i think its because baby is prem.

Thank you for all the links to the web sites i will pass on these sites when my sis is strong enough.

hi eastyorksmum, I'm coming to this a bit late but I just wanted to say hello - I also have a little girl with DS, she had major heart problems and open heart surgery when she was 7 weeks old, this repaired her defect fully. She's now 4.5, very cheeky and fun, and attends our local village school.
She does have some added challenges, her hearing isn't good (but she's got a great hearing aid now and is talking a lot more) and is very prone to chest infections. Despte all that she is a bundle of fun most of the time, hugely popular at school (party every weekend it seems ) and much loved by her siblings.
Has anyone posted the link to Welcoming Babies with DS yet? It's beautiful and uplifting.

There is also a very good DS-UK mailing list which is quite active and the members have a wide range of experiences. Get in touch if you would like to know how to subscribe.

Regarding the heart issues, hopefully someone will have already pointed your sister towards the Down's Heart Group ? They're wonderful, very supportive & knowledgable, membership is free.

Fingers crossed for the CF testing.

hiya ladies hugsss

Baby georga seems to be doing well, shes now got a line in to feed her nutrients, and a nasal tube, were hoping she will start feeding feeding now, its very hard for all of us but i keep in touch with my sis so we know dayly how things are.

i wondered if any of you mum has any experience of prem babies?

thank you for all kind words xxxxxxx

hi again

My sister's baby (not Downs, early induction for pre-eclampsia) had to be line fed for some weeks because his stomach couldn't absorb milk in big quantities and he got too weak to suck (nobody was quite sure why as not VERY premature, 34 weeks). He was in intensive care 3 weeks and SCBU another week (being breastfed initially but couldn't so bottle on discharge)

Jack is OK though, small (not as small as my not-premmies though) but strong and well.

Good luck to your family, I am sure will be OK soon.

Hi eastyorksmum - congratulations on your darling neice.

My sister had twins at 34 weeks, weighing 4.5 lbs each. They were in SCBU. They were both tube fed for about 3 weeks (my sister expressed). She went on to breastfeed them incredibly successfully and ended up tandem feeding them for over 6 months.

My thoughts are with you all.