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.

be kind to yourself cupoftea you have just had a baby - your hormones will be all over the place let alone worrying and caring for baby bea x
dd was in hospital for much of her first year and in the early days i clearly remember how awful and difficult it was.you are under huge pressure but you will feel stronger in time xx
you all did so well taking bea home that is so scary - our first night with dd we ended up back in hospital as we were so worried about her.
wishing you lots of love and support and strength.x

Heartfelt hugs for you ... you must be feeling just awful, awful.
My Son had a boy in his class whose mother gave birth two summers ago to a baby with the same problem, and its died 2 days old. It was 2 months early.
May God be with you and put his strong arms around you at this terrible painful time in your life.

I do believe there is something like Heaven when we die, as i dont think we die, we simply pass on and go on into the spirit world which is the most wonderful, blissfull, peaceful, contented place.
Perhaps you might need to tell your 2 children that the baby is very very sick and she may not live. Children can sometimes be accepting of things which we fear to tell them.

Wishing you tender embraces from all your family and hugs and sympathies.

I am sorry you are having to dal with this CupOf. I can't see how anyone could do anything but struggle to be honest, it's not a situation for anything else. I just wish you strength and as much time with Bea as possible. She shares a name with my dearly missed Grandmother who always liked her name.

I am in S E Wales; it's hugely unlikely you are close if theya re getting results from Oxford 9though Swindon is not far, we're that side of Wales).

Oh cupoftea.:( It must be so so normal to feel in utter despair at times. I hope things feel a little better soon. xxxx

Cup - I am so sorry to hear this, thoughts and prayers with you at this time. Just remember that there is no right or wrong way to deal with this, just whatever gets you through. Take care and remember that we are all here for you whenever you need us. xx

So sorry Cupoftea. You shouldn't feel under pressure to be happy - you are right, it is hard to feel happy about the arrival of something beautiful that will be taken away from you . Thinking of you.

I have just read the entire thread and wanted to say I really wish you all the love in the world. You sound like an amazing mother, wife and woman. Your family are just beautiful. Lots and lots of love to you all xxxxx

Cupoftea. If you want a sling as per northernlurker suggestion then I have a ring sling and am in Aylesbury. Would be happy to post or deliver.

I wish we could help x

cupoftea - Beatrice is beautiful and I'm so glad you are home together as a family. I think some of the other posters have offered some very sensible advice. I would def. speak to your local children's hospice. They are there to offer emotional support and practical support as well as doing all the things that one would expect of a hospice. I would also suggest that when you are feeling a bit stronger to see if there are any local groups where you can be put in touch with parents who are or have been in a similar boat. Although your family can come and offer support, there is nothing like speaking to people who are in the same/a similar situation. Often you will find that they can link you in with things you wouldn't otherwise hear about and can also offer a strong shoulder to cry on - you can vent and discuss things very openly in a way you can't always with loved ones.

I wish you and your family all the best and send you strength. You know that there are lots of us here to talk to and we will try to hold your hand and support you in any way we can through this.

I've just read the thread and seen your lovely photos. And then I gave my boys a big hug, and they asked why I was crying. :( That's all you can do too. Hug your lovely girls and make the most of every minute.

Best wishes to you all. x

Just wanted to say I am still thinking of you and all your family, especially little Bea.

I hope you don't mind but I lit a candle for Bea today along with one for my Erin. One of hope and strength for you and Bea xx

Its great that you have been able to take Beatrice home, she will hear all the normal sounds of home and your voices without the beeps and alarms of the SCBU. Its important that you get some sleep and rest too cupoftea.

Cupof - what a terrible roller coaster you are on :(

I'm glad you have been able to take Bea home (even though it's stressful).

Hopefully the big girls will be over their colds really quickly and you can all spend some time together. Lots of love & cuddles for all of your girls together.

I can't believe how they've had you lurching from one thing to another - it's very very hard on you :(

I wish there was something more we could all do for you.

I know what you mean about not knowing how to enjoy having her with you when it's all so very sad and beyond comprehension - I would be exactly the same as you. All you can do is try to enjoy the cuddles - give her as much love as you possibly can, make every minute the best it can be for her, know that you did everything you possibly could for her and yourself.

Let DH look after you all, he needs to be busy and you all need looking after.

Lots of love & squishy hugs
x

Just wanted to say that I hope we - all of us together - haven't made it even more of a roller coaster for your emotions - it's just that when there's been some good news we've been so pleased to share it with you - and when things have been more difficult we've felt so sad too I know everyone who's posted has been sending their love and wanting to help.
I hope you are finding some good people to support you through all of this.
Your girls all look so lovely in the pictures you posted xxx

cupof I can't even begin to understand what you're going through.
All your girls are so beautiful. Take one day at a time with Beatrice. She is obviously a little fighter and I hope you have more precious days with her than the doctors think.
Thinking of you and your family. XX

Just wanted to post to say thinking of you cupoftea

My DD has Beatrice as a middle name.

She is beautiful. I can't imagine what you're going through. I just hope you get some wonderful times, I hope that she is with you for as long as possible.

Sending love x

Cupoftea, I (and my non parenting website reading DH!!) have been reading this thread from the start but haven't commented yet as I don't comment so much on Mumsnet and felt a bit intrusive.

Your last post is completely heartbreaking but completely understandable, you know. I know there are no words at all that can make this better for you, but like everyone else, I just wanted you to know that you're in our thoughts. x

CupofTea ... your little Bea is gorgeous, absolutely beautiful (as are your other two girls) ... she has simply stunning eyes and such a cute little face. It is so, so sad beyond words that her time on this Earth seems destined to be so short.

I just wanted to tell you that I am thinking of you and will remember all of you in my prayers. I do believe that what Northernlurker said about all lives having a purpose is true, and yes, all of us who have read these posts and looked at the pictures of your darling baby girl will have been changed in some way. I know I will never forget her. I never post on Mumsnet, just lurk, but I have been compelled to post this time. She looks a bit like my own baby daughter and I will always remember her, long after these posts end ... way into the future.

Keep on loving that tiny cutiepie just as much as you have been doing. She will be so happy surrounded by the love of her mummy and daddy and big sisters. She will never know anything other than love and will live in that love for ever and ever.

And for sure it is a wonderful and amazing thing that Bea is here to enjoy life even if it is not for as long as most of us are granted.

You all sound amazing. Look after yourselves and let yourself feel every emotion that comes to you.

Sending all of you the biggest hugs and thoughts and sending super cuddles for all three of your girls.
xxx

What a rollercoaster you have all been on. I hope that you all manage to create some lovely memories with Beatrice (beautiful name) and get some answers from the hospital.

Above all, congratulations on your beautiful beautiful girls, you must be so proud x

Thinking of you and your beautiful Bea....xxx

CupofTea-I've only just logged back on to see how you have been doing with Beatrice at home. You are an amazing mum coping with incredibly difficult circumstances. Your beautiful daughter has already confounded the doctors. She is at home with her family and is very much loved, you can only take it one day at a time. Please, please try and get some sleep at some point. Sending love, prayers and positive vibes.

Re slings-I have a spare Close Baby carrier here that ds has long grown out of-it's yours if you want it. PM me and I can put it in the post asap.