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.

or there are these which are a bit more like conventional bottles.

Prayers and being said daily for your family and for Bea to get stronger.

What about a prayer chain thread for tomorrow? Doesn't have to be prayer if that's not your thing - we could do five minutes a piece for a few hours?

I'm happy to take part Northern :)

Sounds like a good idea Northern If you put one up, I'll link it to our Christian Prayer thread!

I'm not sure how helpful this will be but maybe an idea? And please don't call yourself a useless mummy again I've nearly run out of kleenex!

I see Bea has a dummy in her photo? Maybe try putting some breastmilk on that? Also could you find teats that are like her dummy? I know there are loads of different ones on the market.

Now here's the wierd bit!! I know she has the arthrogryposis which is making her muscles/ joints stiff and that is leading to the difficulties in feeding. Bit sometimes the amount of effort in sucking is hard with a bottle. I know someone (with a 23 weeker) who used just the teat with some milk in and it worked!

Do not however make the mistake she did ad try to make the hole bigger - she got covered in projectile vomit as little one coughed and splattered!

I was also going to suggest trying her suckling on you but if she's clamping down before a bottle goes in she may clamp down on you to hard - not pleasant!

I think that's a good idea about starting a thread in SN. Bea has been with you 2 weeks now and there are many lovely MNers there who can support you, Bea and your family through her LIFE.

Another one here who thinks that just giving it a go with a breast pump would be worth it, as long as it doesn't become a stress. You could try pipetting in whatever you get out. It can't hurt and any breastmilk is an advantage!

Just reading through everything...oh Cup she is beautiful!

And ledkr what a story!

FWIW my first memory is at 2, racing to the hospital with my mom to see my new baby cousin, who the doctors felt surely wouldn't make it through the day. But she did, so they said she wouldn't make her first birthday. But she did, so then it was that she wouldn't make 5 years old. And then 10. And then this month she will be 27 and we have all stopped counting. :)

You'll be in my thoughts/prayers!

Just wanted to wish you luck for tomorrow.

Here's hoping they've got it wrong again x

CupofTeaPlease
That has always been one of my favourite hymns.

Moving this thread out of bereavement feels like a great step forward, CoT, and shows how far you have come in these past few weeks.

Good luck tomorrow, I will be thinking of you all.

Just wanted to add my best wishes for tomorrow. Bea looks absolutely lovely in her dress x

prayer/positive thinking thread here for tomorrow

Ive only just been able to read your thread. Like so many others on here, I really dont know what to say, but couldnt not say anything. You have 3 beautiful daughters, and baby Beatrice is just scrummy.

I wish you and your beautiful family all the very best, and send you strength, love and light.

Best wishes for tomorrow.

Good luck for tomorrow. I will thinking of you and praying for you.

I have read this post but not commented till now. Just to echo what other posters have said that you are such a brave and fantastic mummy . I will be thinking of you ( along with the rest of mums net ) tomorrow. Beatrice is one lucky girl to have you and I'm sure her future however it pans out will be absolutely fine with you supporting her.

Cup - God never ever sends us anything we can't cope with, whatever is in store for you and your family, you will find the resources to manage.

Continuing to wish you well and pray for you all

Good luck for tomorrow Cup, I will be thinking of you and praying for a positive update.

You sound such an amazing lady and Beatrice is absolutely gorgeous.

hello cup iv just been able to see your lovely photos your family are beautiful its all been said but sending you all love and hugs you are in our thoughts xxxxxx

Just wanted to add my good wishes for tomorrow. Hope Dr Death manages to find some compassion, whatever the news she has to impart. Will be thinking of you and your lovely family x

Good luck for tomorrow, may you have the strength to deal with whatever it may bring.

Thinking of you.

Best of luck for tomorrow.

Good luck for tomorrow.

Thinking of you all for tomorrow.xx

Good luck for tomorrow Cupof. Will be thinking of you.

You are so strong, Cup Of Tea and you should feel so proud of yourself. Beautiful little Bea is so lucky to have you as her mother. Wishing you all the best for tomorrow and i will say a prayer for you and your family tonight and in the morning xx

Last post here in Bereavement, time to move on.

New thread for Beatrice.