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Bereavement

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My newborn girl is going to die, not sure what to do now.

1002 replies

cupofteaplease · 17/09/2011 12:09

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.

OP posts:
angelpantser · 25/09/2011 09:15

cup I'm in the same county as you. If you need any practical help I'm mobile and free most days from 9:30 until 2:30. Just contact me if you need anything. I'm a dab hand with an iron if it's any help!

In the meantime you are all in my prayers.

LizaTarbucksNonSmokingAuntie · 25/09/2011 14:33

Cup - might be worth jotting down things that you could use help with as they occur to you then when people ask (as they invetiably will) instead of not being able to think of anything you can check the list.

Hope everything is going as well as it can and sending love and prayers to you all.

Lcy · 25/09/2011 20:34

Thinking of you. So glad you could take Bea home xxxx

IwishIwasmoreorganised · 25/09/2011 21:25

Lovely news that she's home and able to hear all of her familys love and affection for her.

Please do accept any offers of help, and enjoy this special time at home with your beautiful family.

xx

jugglingwiththreeshoes · 26/09/2011 09:26

Welcome home baby Bea Smile

CombineArvester · 26/09/2011 14:46

Cupoftea I am so pleased to hear she can hear, she can breathe on her own and she is trying to feed on her own. The feeding is especially important. Take as many videos as you can, especially with sound and especially of her sisters with her.

If you can draw up a list of jobs you need doing and email it to your local friends/family, ask them to do one each and nominate a close friend / family member to be in charge of the list.

cupofteaplease · 26/09/2011 17:10

Just lost another long response. Can't do anything right today, even MN.

When I said my house was dusty, I meant it more comparing it to a SCBU, in reality, my house isn't that bad. Unfortunately, both girls have bad coughs and colds today, so I am trying to keep them away from Beatrice.

Feel so, so sad today. Keep being overwhelmed by the enormity of the situation and feel so bloody helpless that I can't do anything to make Beatrice better or make this painful situation go away.

The nurse and HV both came round today, and they looked so sombre. They obviously understand Beatrice's prognosis better than we do. The consultant has said she will be in touch later this week when they have more results back from Oxford.

Dh is doing too much. He hasn't stopped all day. He's been doing housework, cooking, washing, sterilising bottles and making feeds. He isn't the type to sit and relax but I think he's gone into denial and is working overtime.

I think I've managed to explain things to the girls. I have said Beatrice's brain isn't working properly and that if she gets ill she might have to go to Heaven, she won't get better. They don't understand, because they don't understand how doctors in hospital can't make something better. Right now, I'm struggling to understand myself.

MIL, her mum and my sister have all visited today. They keep smiling and saying we must enjoy Beatrice while she is with us, but I don't understand how we can do that really. I daren't take her out, or show her off to friends and family like I would a normal baby, because she seems too fragile and vulnerable. I can't even take videos of her with the older girls as they are full of the lurgy and I am trying to keep them away.

I'm really, really struggling today, I feel like any ounce of positivity I had had ebbed away. I can't bear this pain, I can't believe she is going to leave me.

OP posts:
cupofteaplease · 26/09/2011 17:13

And thank you for the PMs and offers of help. I am very grateful that you have taken the time to type a response to me.

OP posts:
Hulababy · 26/09/2011 17:18

Oh :( I feel vry much helpless but want you to do that you are doing everything for Beatrice and she will feel so loved by you, and that is all that counts right now.

I am sure the older girls will feel better soon and you can get those photos and videos of them all together, being little together and loving one another.

The girls won't really understand fully - whan really? it is all unreal and so unfair after all - but if and when the time comes I am sure they will get through this with you and your DH's support and love.

Sounds like your Dh needs to keep busy at the moment. It may well be his way of dealing with stuff.

Do try and enjoy your time with Beatrice as much as possible. Don't worry about trying to get normal things done too much. Just enjoy holding her, kissing her, singing to her, talking to her...just loving her and being with her. It is all she needs right now from you. She doesn't need to go out and see lots of people. They can come to you. Just let her hear and feel your love.

Tak care of yourself x

MackerelOfFact · 26/09/2011 17:20

Oh cupoftea. :( How horrible to have to explain to the girls about Beatrice's illness, and to have to keep them away from her too. You sound like you need an enormous .

I'm glad to hear that she is home with you though and that the hearing test was positive. Long may she continue to suprise everyone x

cjbk1 · 26/09/2011 17:25

sorry cupoftea I don't know how to pm I'm rubbish but im here to help I'd needed just pm me xxx

ExitPursuedByaBear · 26/09/2011 17:28

What a truly horrendous situation you are in cup. My heart bleeds for you. I hope you get some positive news from the hospital later in the week. In the meantime, sing your love to her.

thefirstMrsDeVere · 26/09/2011 17:34

Hello cupof x

I dont want to bombard you with information but I wonder if you have heard of Rainbow's Trust? They can offer practical help to families in your situation. There are other sources of support but I dont think it would be that helpful to do a list for you to have to research.

Is your HV sorting this sort of thing out? I hope so.
I want you to get all the help and support you deserve so you can spend lots of time with your lovely girls.

I know it hurts my sweet x

TheOriginalFAB · 26/09/2011 17:42

I am so sorry that you feel so sad Sad.

I am going to PM you where I live in case I am near enough to help. I will do anything at all, just ask.

Do you need any baby clothes?

BobLoblaw · 26/09/2011 17:46

Can you speak to the children's hospice local to you? They are wonderful resources and do a lot of sibling stuff. I have explained to DS that DD won't be able to live with us forever, but I don't think he understands properly, we will just have to deal with it when the time comes, it is utterly heart breaking though.

I write letters to my dd, about our days and how much I love her, take lots of photos, hand prints, foot prints etc, I've made some nice pictures on canvas of DDs and DSs hand prints. When we thought she was dying imminently we took her to the duck pond, let her feel the rain/wind/sun on her face. I made a cake and we had candles as we didn't think she would make any birthdays (she's had 5 now)

I wish I could do something that would actually help, I'm thinking of you all x

bibbitybobbityhat · 26/09/2011 17:48

Heart is aching for you cupoftea. Please just know that hundreds of us are thinking of you and wishing we could make it better x

sybilfaulty · 26/09/2011 17:50

OH cupoftea, I am so sorry you are feeling so low. I am in S london and am happy to help in whatever way I can, though I suspect you may not be near me. Just wanted you to know that you are all in my thoughts and prayers. I hope you and your family are being looked after. Take care and God bless XXX

DecapitatedLegoman · 26/09/2011 18:07

I have no words cupoftea but please know you're in my thoughts. I wish that we could somehow ease your pain.

DecapitatedLegoman · 26/09/2011 18:08

I have no words cupoftea but please know you're in my thoughts. I wish that we could somehow ease your pain.

youarekidding · 26/09/2011 18:10

cupoftea I'm so sorry your feeling so Sad

Just wanted you to know your family are still in my thoughts and prayers.

5inthebed · 26/09/2011 18:10

Thinking of you all. So so sad for you and your girls.

xxxx

withLainintheWired · 26/09/2011 18:33

You are all in my thoughts. I don't know what else to say. X

withLainintheWired · 26/09/2011 18:34

You are all in my thoughts. I don't know what else to say. X

Northernlurker · 26/09/2011 18:55

Oh cupoftea - more tears shed here over this thread. Sad
I posted lower down the thread about the meaning of Bea's name. She is a voyager, on a journey. Though it seems her journey will be shorter than we all hope and dream of for her, her journey has a purpose, her little life matters. She is changing us all - everyone who knows about her will be touched by her life and by your love for her. Beatrice matters so much.

About taking her out - do you have a sling? Could you take her out cuddled to you in that? If you don't have one I am certain someone on mumsnet will be near you with a good cuddly one - happy to co-ordinate a search if needed.

tadjennyp · 26/09/2011 19:01

So sorry, cupoftea. Hope you get to take those photos and videos with your beautiful dds very soon.

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