My brain damaged baby- not expected to survive- Update

[sleepysox]

I hope this is the right place to post. I originally posted 3 or 4 weeks ago in the bereavement area as my son was not expected to survive when he was born. Then a second diagnosis said he would survive after birth, but that the prognosis was poor, so I got my thread deleted as it was in the wrong place. So many people gave so much support, so i wanted to give an update.

Background:
My son was diagnosed with severe brain damage and hydrocephalllus when he I was 35 weeks pg. We found out at a scan to check for a large tummy due to diabetus. In the scan they found out that my son had water on the brain and his brain was missing key areas and had been formed wrongly.

Well, he was born by c section on 28/9 and survived. The hospital was wonderful. I had a private room and the m/ws couldn't have been more helpful.

His head is larger than normal, but he still looks adorable and at the moment he's like any normal baby. As he's so badly brain damaged, we don't know the long term prognosis, and how badly the brain damage will affect him, and we won't know these things until he starts not meeting mile stones, but at the moment we're so grateful to have an adorable, cuddly baby to love that we're trying not to worry about the future.

I'm sure I'll be posting more in the SN area in the future, once I start meeting with the social workers etc. So I look forward to meeting you all.

Thanks to everyone who offered me so much support. I couldn't have got through those bleak days without you. I know hugging is not a very mn thing to do, but I would add a hug emoticon if there was such a thing

[saintlydamemrsturnip]

oh sleepy I am so pleased for you. xx

[debs40]

sleepy thanks for posting and telling us. I am so pleased you have your little boy to cuddle and love. Keep posting. There are many kind and wise people on this board x

[MABS]

so much love to you x

[moosemama]

Sleepy, congratulations on the arrival of your little boy. I don't care if its not very MN huge great squishy ((hugs)) to you both.

[drlove8]

sleepy, congratulations on the birth of your son.
give him an extra cuddle from me .xxx

[TheCrackFox]

Congratulations.

Keep posting you will get so much support from Mumsnet.

x

[smoking2shoes]

so pleased that things are better now

[jasper]

sleepy, congratulations on the safe arrival of your precious little boy. I wish you and your family much love , health and happiness

[ClaudiaSchiffer]

Sleepy, I remember your original thread, it was so heartbraking. So very many congratulations on the safe arrival of your darling little boy. I am so pleased for you and your dh. Mumsnet is rather wonderful in these situations - I'm sure you'll get lots of help and support if you need it.

xx

[LottieDugalo]

Congratulations

My daughter has hydranencephaly, I'm not sure what your sons diagnosis is but the stories on www.hyrdanencephaly.com (there's also a hydranencephaly group on Facebook) are inspiring, or they were to me. We were told my dd would not make her first birthday but she's 3 now

So pleased for you all

[troutpout]

Congrats on your beautiful boy
X

[anonandlikeit]

congratualtions!
Wishing you all lots of love & happiness x

[cocolepew]

Thanks for posting and congratulations

[PheasantPlucker]

Sleepysox, I remember your original post, we 'spoke' a few times (my dd2 has hydrocephalus). Congratulations on the birth of your little boy. Sending you both love x

[PheasantPlucker]

Sorry - total mistake - my dd1 has hydrocephalus, my finger slipped there. She is 8 now.

[feelingbetter]

So lovely to hear
I posted on your other threaad (as did many familiar names here) and I am so pleased you've had a positive outcome.

Without rehashing my tale again - my DS was not expected to survive either. He is now 16 months old and though very delayed and with some problems, is doing brilliantly.

I like to think he will do whatever he can, whenever he can. He is getting to the milestones, just in his own time . And each one is celebrated for the massive acheivement that it is for him.

Nobody knows what the future holds - for anyone, so enjoy your little boy for the wonder that he is.

Reading this has really made my day x

[vjg13]

Congratulations on your new little boy. Wishing you happiness and love

[Psychotrace2]

Congratulations!! ((hugs to both of you

[BobbingForPeachys]

Congrats and welcome to a much loved baby boy. You have, I hope, much laughter ahead.

[wuglet]

So pleased to read this having followed your original thread.

Wishing you all the best for the future.

[janess404]

Good luck for the future may you have many happy moments

[twirlymum]

Congratulations, cherish him and give him lots and lots of cuddles

[lisad123wantsherquoteinDM]

thanks for update, I remember your OP too. Glad you have your beutiful son.
I know you have posted in SN because of the lovely ladies here are great, but maybe you oculd update somewhere else as well as i know people will want to know and SN doesnt show in activie convo.

[BriocheDoree]

Congratulations on your son. Take plenty of time to enjoy your little boy