My newborn girl is going to die, not sure what to do now.

[cupofteaplease]

I gave birth to our little girl yesterday at 1.15pm. They told almost straight away they thought she had Edward's Syndrome. Now they think her brain just didn't develop. Noone can tell us how long she will be with us, nobody knows.

My two dds are 6 and 4 and were so excited about their baby sister. They are coming to meet her later. How can I tell them she will die?

As she is breathing unaided and tube feeding, they are caring for her in SCBU, but I have said if they can't do anything, I want to bring her home to spend her last time. I wish we knew how long she had.

I think my heart is breaking.

Oh the new photos are lovely. She has lovely huge eyes, so alert. She is just adorable.

Hope Mondays news is not all doom and gloom, and lovely of the nurse to be coming with you.

Just caught up.How crap and what a rollercoaster you are on.I am sending the most positive vibes I can...Thank you for the photos and for letting us all know how you all are.xxxxxxxx

In case you missed the earlier post, Lissielou started a thread asking what we as MNetters can do to help Cupofteaplease.

We have had some great suggestions. If you have any other suggestions or would like to contribute, please come over to this thread

CupofTea,

I couldn't not post. My thoughts are with you and your family, I hope that you can enjoy your weekend with Beatrice and your family and will have my fingers crossed for Monday. btw Beatrice is beautiful x

The new photos show that Bea and her sisters are simply beautiful. Sending you all the vest for Monday. xxx

Ive not been on for a few days but sending you lots of love and best wishes for your girls. If wishes came true your girl would be the healthiest little girl in the world xxxxxx

good luck for monday! she seems like a real wee fighter.

I didnt know whether to post this but my ds2 was given a shitty prognosis too,c.p. and incontinence. He was taken off his ventilator to see if he would survive.Like the other poster i was also 19 and didnt really know what to expect and had the naivity of youth on my side and i just king of got on with it,he had peritoneal dyalisis at home which i did,and we saw all the sombre looking specialists and had all the tests.
I dont remember an actual point when i thought he was gojng to be ok but he just lived thru his challenges and we found humour in his weaknesses and clumsyness-not in a mocking way-i corrected stuff i saw him do such as stand staring with his mouth agape and encouraged him to do other stuff than ball sports as his co ordination is poor,he is arty and loves cars.
Well today he is 25 and a 6ft 4 hunk of lovelyness,he has a girlfriend and a flat and a job in primani and is very funny and happy.He will never be a brain surgeon but has a fullfilling life and is so kind to everyone.The drs were very wrong in our case.
I remember a hospital cleaner finding me crying when id judt had him at 27weeks. I told her he was going to die so i didnt want to see him.She gave me a good ticking off and suggested he wouldnt be aware of his situation so not scared like an adult would be, but would be fully aware that his Mum wasnt around to hold him.
It was the best advice i ever got.
I went straight to scbu for cuddles.

That's a lovely story ledkr

OK Ledkr I am crying at the cleaner helping you when you needed someone.

Thanks-she was lovely too,even my Mum couldnt get thru to me.the cleaner was very brash and said it how it was,i think id cope less well now in my 40's tbh.

I have only just come across this thread and couldn't not post. Beatrice is so beautiful or as my dear Grandad would have said " such a little poppet!" Her big sisters look so proud.
Sending you love, and strength. x

Oh Ledkr, that's brought a lump to my throat.

Cup, Beatrice is absolutely gorgeous. You are a beautiful family.

Her name means 'voyager through life' and she's obviously determined to live up to that.

My thoughts are with you all.

Oh Cupoftea, those eyes! Bea is beautiful. Your girls are gorgeous.
Love and strength to you all.

Ledkr, your story made me cry but in a good way.

Sending strength for Monday cupoftea

Ledkr another here with a lump.

What a beautiful, precious baby. I hope you all enjoy cuddling Beatrice and realise she will sense all the love and tenderness you feel for her. Her heart will be singing with joy.

Ledkr, what a profound story - I hope that really encourages cupoftea.

Have only just came across this thread. Thinking of you and your beautiful little bundle of joy, how lucky you all are to have eachother.

Enjoy your newest little lady xoxoxox

Prayers will be said here for you all x

Only just seen this thread. Sending strength for Monday cupoftea xxx

ledkr
What a lovely story, your son is lucky to have such a brave and strong mum.

Just as Beatrice is lucky to have Cupoftea. Hope that you are both doing well today.

cupoftea, hiya.

I just read right thru, and i want to send all my best wishes to you, and like everyone I have to say she is probably the cutest baby i have ever seen! Judging by your two other girls, they must have been just like her too! I hope you have a lovely weekend with her, you already know her best and you two have so much love to share. xxx

cupoftea what gorgeous girls you have, it's hard to believe from Beatrice's photos that she is ill.

Sending much love

Beatrice takes after her mum and dad - loving and brave.

cupoftea your little baby is so beautiful. Really hope Monday goes well for you and that you can enjoy the weekend with your lovely family xxx

Good luck for Monday and enjoy your weekend with your little family

cupof missed yesterdays update somehow glad you are home again will keep fingers crossedfor monday for you