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.

How is your little babe today Cupoftea?

Thinking of you. xxxx

Thinking of you all xx

I hope things are a bit better today cupoftea.

Bea is so gorgeous too, what beautiful big eyes.

cupof I remember my dh cleaned and tidied as "displacement therapy" when our boys were ill, he said it helped take his mind off things, he did the same again after when we lost our girls, it sounds like your dh is doing the same
Hope you can take up HappyT's offer of the sling, and get to carry little Bea out and about a bit.
I also pray you have both managed to get some rest, and that your older girls are getting over their colds. Keep strong, my prayers are with you.

Still thinking of you all and your beautiful new baby.

Thinking of you today, and all the tea family.

Oh Cupoftea, I'm so sad you're having such a hard day. As an outsider looking in though I'm amazed at the strength and courage you have already shown - Beatrice is a lucky girl to have such an amazing mummy. Be kind to yourself and hopefully tomorrow will seem a little brighter. x

Thank you so much for the offer of a sling. We do actually have a couple from when the girls were small. I may try and see if she could use one, but her limbs are tight due to arthrogryposis and she is not easily manoevered into new positions, bless her heart!!

I decided to have a good day today. So I wrapped her up warm and took her on the school run. We were bombarded by well wishers . We then took her to be registered, so she is officially here now. I have organised a lady to come and make bronze casts of her hand and foot, and for a photographer to come to our house for a family photo shoot. When I explained that I wanted to organise these things ASAP and told them why they both offered large discounts. I am amazed by the kindness of strangers. Then my sister came for a cuddle and while she was there, Beatrice went a horrid grey colour after a feed, so we took her to the hospital on their advice. And here we are now.

They are keeping her in for observation, but she seems absolutely fine, little monkey scaring me half to death. Dh has. gone home to get me some things I need for Beatrice and I. Thankfully, between my sister, a friend and my PIL the girls have been looked after and dd1 even made it to Rainbows- phew, normality is resumed.

what a day! You sound much brighter, I'm glad you took Bea to school and go things organised. Sorry about the scary bit though, I hope she and you are ok. Have a good night x

*got

So glad that you have got to spend a lovely day with Beatrice, but how frightening that you are now in hospital together. Hope she is just being minky and that you can soon go home. Am glad you got to go out and about a little.

Still thinking of you all and sending love and prayers XXX

Just still thinking of you and praying for more good days for you and your family.

I'm glad as well you've done some 'normal' things with Beatrice.

How is you new baby? Is she alright after going grey?
Have the doctors given you any more idea how long she has??

Best wishes xxxx

So pleased you had a lovely day with Beatrice. I hope she recovers well from her little episode and you both go home tomorrow. Thinking of you all.

How lovely that Beatrice has done her first school run .

at the kindness of strangers.

Sorry that you had a scare today & hope you get back home again soon but glad you had such good day before hand. I think of you all often & hope you have many more good days.
All my love xxx

cupoftea I'm so glad you took Bea out today for her fisrt school run - I'm sure she and her sisters loved it.

I also going to welcome her again to the world 'officially!'.

I'm sorry your back at the hospital. I hope Bea is OK.

sending ((((hugs))))

I would be tempted to put a good friend in charge of jobs that need doing, make a list and give to her. Im sure they will be grateful to feel of use and give you all some time with your beutiful daugthers.

Im sorry to hear your back at the hospital, you must be so tired :(
Im glad to see you have photos and casts sorted. Do you have a video camera? if not im happy to send you ours to keep.

How lovely that you've registered her and been able to enjoy lots of well wishers attention at school.

She's a rascal forcing you to take her back to hospital, hopefully your stay will be brief and you can all be back home together again soon.

Good work getting the photo's and foot casts sorted and how generous of the propietors to offer a discount, there are lots of good people about.

xx

Hope Bea is better soon. Must have been terrifying.

Sounds like a lovely day before that happened. You are brilliant- you were determined to have a good day and you did.

just read the whole thread.

couldn't not post.

What a beautiful little girl, so, so sorry the outlook isn't what you hoped

i will be thinking of you all.

Best wishes to the Tea family and the gorgeous Bea. may your days together be filled with love. xxxxx

Glad you were able to do some nice things. Hope Bea is home again soon.

Cupoftea, you have three beautiful daughters. Wishing you all the most wonderful days together.

I hope Bea is doing better and that you'll all be home again soon....x

Oh what a shame after such a lovely day. I hope they don't keep her in for long and you can get her back home with her sisters. I bet the girls loved showing her off at school :)

Look after yourself as well OK!
x