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.

cupof I think it's when times are tough that you realise how great people can be. When my Dad died suddenly, my Mum's neighbours were fantastic, we were too shocked to be able to do anything and they organised a lot of the practical things we didn't feel able to do. Up till then we really hadn't realised what wonderful people they were.
Do accept offers of help, it will give you time to bond with Bea and share those precious moments and your friends will feel useful.

Just read this whole and wanted to say you are in my thoughts.

Baby Bee is gorgeous and I love her name - it suits her :)

Wish I could give you a big hug xxxx

What a great day you have all had - so sorry it ended up with you and Bea in hospital. Hope you will be home again soon.

I think of you all often, and send you all my love, and a big hug for baby Beatrice.

xxxxx

A big hug coming your way from me too, at Bea doing her first school run. Hope she is home again very soon x

Ahhh cupoftea - tears in my eyes reading your last 2 updates - you must be going through a hell of a rollercoaster ride at the moment!
So glad that she is meeting more people, sorry that your other girls are lurgified, happy that strangers are being so kind in your situation and sad overall for the uncertainty of what is going on.

(((hugs))) for all of you and holding you in my thoughts and prayers - keep fighting the good fight, little Bea!
xxx

Cup - hoping you and Bea are home soon, back where you both belong.

Hope Bea had a good night,Cupof,and that you managed to get even a little tiny bit of rest.

I'm glad to hear you are managing some normalcy. Sorry about the scare you had though, sounds pretty terrifying. Hope the hospital get to the bottom of it soon and you get your beautiful daughter back home x

I hope she's OK and you are back home soon.

What about one of those slings that hugs in a newborn position, something like this or the Close sling that has several different options?

hope she's home now and you are drinking cups of tea and enjoying time spent with your new girl. are there any more photos? she's so cute.

I rarely post, but read lots, I have been following this thread, little Bea is so cute, what gorgeous eyes she has, I am so glad you have started to do the 'normal' things with her, its lovely to show off a new baby at the school gates, bet she got loads of attention the casts are a lovely idea too, hopefully you can sit and show her when shes a much bigger Bea just how tiny she was, I hope you are both out of hospital soon and the funny colour was just a blip

I have added some more photos. Lisa, thank you for the kind offer of a camera, but we do have a video camera which we have used. I have probably taken more photos and film footage of Beatrice than both of my other girls put together!

We got out of hospital around midday- all her obs were spot on, she is fine. Whilst we were there, her consultant paediatrician who told us she had Edward's Syndrome originally popped in. We haven't seen her since the birth but we have nicknamed her Dr Death (Sorry, that proably sounds a bit crass, but dh and I fall to humour at the strangest times... ) due to the way she told us the news. We appreciate she has a tough job, and it couldn't have been nice for her to do, but still, if I never saw again it would be too soon. Anyway, she said they are still awaiting the results from Oxford for the MRI and genetics testings and she will call us next week. In a way, I don't want the results anyway. Whilst she was in the room she didn't ask about Beatrice or come near her cot. She didn't even look at her. To us, it feels like they have written her off, like they see her as a statistic and have forgotten she is our precious little girl. Maybe we are in denial, but we will not stop doing everything we possibly can for her, including stimulating her with the physio we were shown (before getting the preliminary MRI results), singing to her, putting her in the vibrating bouncy chair with music playing, showing her rattles etc. I won't give up on her, even if the medics have.

After leaving hospital, we went to the shops to exchange some clothes she had been given. Everyone comments on how small she is but how big her eyes are. A few people commented on how alert she looks. That was pretty bittersweet, considering what we have been told about her brain function.

After that, two of my work colleagues came to vist and they have had a whip round at work and completely spoiled both Beatrice and myself. She has been given lots of beautiful outfits, lucky little lady.

I think it has been a good day. Let's have another one tomorrow.

She's lovely cupof. Great that she is home now and sorry you have an apparently unfeeling doctor to deal with. I hope you have another good day tomorrow and the day after etc. Your work colleagues sound lovely, glad you are getting support.

Beatrice is a beautiful baby. Lovely photos .

Oh cup- lovely new pictures. She is so utterly adorable.:) Good on you, having another good day. That's brilliant. Hang in there. xxxx

Is that you in the top photo? You are gorgeous looking too. Must be where the girls get it from.

Oh she is getting more beautiful by the day. And she looks so wise and alert.

You are all in our thoughts, stay strong, you are such a fantastic mum.

Hoping for lots more Good Days

Xxxx

(I want to cry now)

Can totally understand what you are saying about Dr Death You are doing what is natural and you are loving Beatrice. The new pics are gorgeous, all your girls are so loveable I want to pinch their cheeks! She does have very stunning eyes, they seem to look right out at you through the camera. Glad it's been a good day x

beautiful photos and I'm glad you're all home and together again xxx

You know, Dr Death (welcome to the SOH shared by everyone I know with a life limited or Sn child!) might be struggling herself- tehr are some shites unfeeling Apeds about but plenty who get very upset themselves and it can be ahrd to tell apart.

Her eyes remind me of your other DDs, and you really are pretty.

What a gorgeous little girl. You have such a beautiful family :)

Sending my love to baby Beatrice.

Cup - she is beautiful. I am pleased you have had a good day and are now all home together.

Stay strong, cup, and stay hopeful.

The fact that they do not know what is wrong means that they cannot give you a definite prognosis. I read of many other people on this thread who took their child home with no hope and they are still alive, years on. Keep those stories close to your heart and believe.

Thinking of you xxxxx

What a truly beautiful little baby you have. She sounds like a trooper and a fighter and I have been in tears reading your posts. My thoughts are with you. Big unmumsnetty hugs to you and your family. xXXXX