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.

What a beautiful precious little thing she is; such a dot too. You have wonderful daughters...

Sending you strength and love.

xx

We have been summoned to meet with Dr Death and the geneticist on Monday morning. Our community nurse was here when we received the call so she is going to come with us too. So I guess we only have the weekend left in relative ignorance before they give us more bad news.

I so hope Beatrice has other plans than whatever the results have in store for her. I think she's a determined little thing, if I'm honest, and she won't take it lying down!

I have my fingers crossed for Monday. Beatrice sounds like a truly special baby and a fighter. Lots of love, keep positive xx

I just want to put my arms around you all and hold you. I have nothing I can offer you but my thoughts love and prayers.

Bea is truly beautiful.

Also have fingers crossed for Monday.

I can't believe I've only just seen this thread.
Your girls are all so beautiful. Beatrice is a lovely name for a lovely girl.
You are being just amazing.
Sending love and strength and prayers to you and your family xx

Good luck for Monday.

If the CN is going with you could you ask her to make notes as it is easy to forget things when you are in meetings like this.

Millions of fingers crossed for you all for Monday x

I hope that Dr. Death is actually restraining her feelings and not just hardhearted and that she is a little more diplomatic in whatever she has to say to you on Monday. If you don't want her to be there, you can probably request that she isn't - depends on how strong your feelings are about her.

Glad the community nurse is coming with you - I would suggest you also take notes, or even ask if you can record the discussion on a dictaphone so that you can make sure that you can take it all in. It's very overwhelming, and when it gets quite technical it's all too easy to miss bits or get them mixed up (I gave the same advice to both my parents and grandparents whenever they saw a consultant as well).

I also pray and hope that Bea just proves them all completely wrong and shows them every day that she is a living miracle. Forget about Monday for now and just carry on living with Bea and making the most of her every minute. Knowing/ not knowing makes no difference to who she is and what she means to you - so only think about it when Monday comes and you have to :)

More (((hugs))) for you all - you are a beautiful family. x x

Another vote for a note taker here too. It is very hard to keep track of information when your mind is racing around.

Sending lots of love and hope for Monday's results.

I haven't read the thread all yet but reading and not posting seemed wrong.

You have beautiful children cupoftea. I hope with all my heart that your little fighter succeeds in her battle.

Be very kind and gentle with yourself x

Hope you manage to spend some happy time with your lovely family over the weekend without the appointment with geneticist and Dr Death hanging over you.

Hoping whatever the news is is better than Edwards syndrome seemed; and hoping you get plenty of time with your beautiful new daughter.

can I just link to a thread for cupoftea and her family here please?

cupoftea, Ive been reading your thread since the beginning, and cant seem to find the words. thinking of you, and hope you see many, many more good days.

I've just seen this thread. So sorry to hear about what you've been going through - your daughter (in fact, all of your daughters) are just beautiful.

Have been following your thread cupoftea, what a rollercoaster it has been. Much love to you all, you are in my thoughts xx

Thinking of you and your family always, with love and prayers...

Just caught up with this. Reading it was a roller coaster of emotion, I cannot begin to comprehend how you and the family must feel.

Firstly, congratulations on the birth of beautiful Beatrice. I know it's been said but her eyes are astounding, such a beautiful girl.

Wishing you all the strength you need for the coming times. I'm so pleased you're getting to spend time with her, that's so precious. will be thinking of you all and sending up a few prayers xx

If you have a feeling that Dr. Death isn't going to be 100% behind Beatrice, could you talk to your community nurse about requesting someone else take on her care?

If she's the expert I guess you have to work with her... but if there are other options - you want not only the best in a clinical sense but someone who WANTS to fight for Bea. You want them to plough on with physio suggestions etc. and take the approach that she's to be fought for! Not written off.

Good luck!

cupoftea - I see your comments on the slings, and the fact that Beatrice isn't maybe flexible enough to use one - we have a Moby wrap which is all one long piece of fabric - there are lots of ways to tie them - that might be more suitable?

Having her in a sling and close to you as much as possible will certainly provide the best possible emotional environment for her while she is still facing so many challenges. I'm happy to send you the Moby, I'll pm you too as there are so many posts here that this might get lost.

Just read this thread. Oh Gosh Cupoftea My thoughts are with you and your beautiful little girl. As far as the meeting goes, I guess forewarned is forearmed. Stay strong.

Cupoftea - this link may seem somewhat irrelevant but the story shows that the mother-child bond can work both ways to help with brain function and I hope that it gives you more strength to stand up for little Bea (I know you will and are anyway but every little support helps to keep you strong) xx

Oh, and definitely keep her close to you as much as you can - "kangaroo" care is great for newborns with difficulties and this story is truly amazing!

Good luck over the weekend and on Monday Cupoftea. I am wishing for the best for both of you. Bea is lovely.

I really hope Monday brings surprising news and the Bea continues to amaze the doctors, especially Dr Death! (we have same sort of sense of humor in our house when dealing with bad stuff).
She is truely beutiful, as are you all (apart from dh, we havent seen him yet but im sure he had something to dow ith those beutiful girls)

When are casting and photo people coming?