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Original poster

My baby died after 6 days in NICU, not coping.

227 replies

greengoose · 07/05/2012 14:06

I don't know whether it'll help to write this.
My beautiful baby girl was born at 32plus 1 weeks by ecc then transferred to Great Ormond Street straight after birth. An operation that we thought would go well didn't, and she struggled and fought for five days before they turned off the machines and we held her while she died.
We knew during the pregnancy that she would need an op, that's why we were referred to GOSH. We were only meant to be in London for routine scan though, and they spotted she had hydrops and reduced fluids. We stayed extra day to see other consultant, and they scanned again, she was worse, so they scheduled for next day. My partner drove back home to drop of youngest DS who was with us and pick up bags etc, then during the day I got very ill with Mirror Syndrome (like v severe preeclamsia), and my partner just made it back two minutes before op. He got to see our baby with her eyes open, which I never did. I'm so glad he got back. He went with her to GOSH, and I had to stay in UCH while they tried to stabilise me.
They operated that night. I thought it would be ok. My partner ran back from GOSH to UCH to let me know it had gone wrong, and she was critical. He then ran back to be with her.
The next day they (accidentally) discharged me, and I was with her from then on as much as possible. NICU is a parents hell. She was so ill. The staff were amazing, but there was nothing they could do in the end.
On the last night her heart started to fail, and the decision was made to stop. They cut all her wires and tubes and handed her to me while she died. I want her back now. This isn't right.
My milk came in the next morning. I had to bind my breasts and we had to register her birth and death that morning. Then we came home. She has been cremated now, and my milk has gone. It's been three weeks, but it could have been yesterday. I don't know how to get through this. I want her back.

OP posts:
ajandjjmum · 07/05/2012 14:48

So sorry.

5madthings · 07/05/2012 14:50

and waht northernlurker said xxx

ffnorm · 07/05/2012 14:51

So sorry for your loss,Greengoose - there are no words...

Original poster
greengoose · 07/05/2012 14:53

Northern lurker, does it get any easier? It's just I have two boys (and their dad!) who need me, and I'm a wreck. I have bits where I can pretend to function, but I can't see how its going to get better.
I swing between desperately wanting to be pregnant again (I know it wouldn't be Merryn) to wanting to run away from everyone, to holding my boys so tightly. I panic at any phone ring or noise that sounds like the ICU beeps. I can't eat, and I'm waking up at dawn. I can't keep this up. Will it get even a little easier?

OP posts:
aurorastargazer · 07/05/2012 14:54

oh sweetheart i am so sorry Sad
i too agree with northernlurker. she wasn't alone, she had her dad with her and i am also sure she would have felt your love xxx

VivaLeBeaver · 07/05/2012 14:54

She wouldn't have thought you'd abandoned her. Even though she couldn't open her eyes I'm sure she'd have been able to hear you. Newborns recognise the voices of the people they've heard a lot in utero. Merryn would have known that your DP and then you were there with her.

I'm so very sorry for your loss.

Flossiechops · 07/05/2012 14:55

Oh greengoose, I'm so very very sorry. No parent should have to lose their child, it's so unfair and unjust. I cannot begin to imagine how you are feeling. I know that there is a bereavement section on here and a lot of the ladies there seem very supportive - many have been through the same heartache. It may be worth posting there too. May you find peace in your heart x

aurorastargazer · 07/05/2012 14:56

gg you haev been through a traumatic experience and so have they, you need them too. you can't be all things to all people when you need help, have you talked to dp?

StateofConfusion · 07/05/2012 14:57

I'm so sorry green I used to be part of the june thread also under a different name, my thoughts are with you x x x

Wonder12 · 07/05/2012 15:00

So very very sorry to hear about your beautiful Merryn (lovely special name). I've included you in my prayers. Your beautiful daughter will always be with you throughout life. Take care Xxx

Original poster
greengoose · 07/05/2012 15:01

Thanks for all the kind words ladies. My dp and I are trying, but we cope in different ways, which right now means he is coping, I'm not. I need to help more and be there for my boys. I am trying, and I think the boys are getting what they need, but I feel dead inside.

OP posts:
MustControlFistOfDeath · 07/05/2012 15:01

Oh greengoose so so sorry about your darling little Merryn Sad

There are some lovely ladies here who also know the pain you are feeling in losing your precious little one

xx

ExpatAl · 07/05/2012 15:02

It will get easier. I remember vividly hearing the beeps everywhere I went. I would hunch and hold my hands in the way I held my boy during kangaroo care and everytime I thought of him my breasts would leak. He died in
September and I am okay. I am in tears right now of course because I am remembering and thinking of how this has just happened to you but I have days when I do quite well. You will be okay - all of you. You've just had a terrible bereavement and feeling dreadful is entirely normal. It's okay.

Latsia · 07/05/2012 15:02

I'm so very sorry for the loss of your daughter. Merryn is a beautiful name. x

Northernlurker · 07/05/2012 15:03

From what I've seen of grief observed and from what I know of my own experiences (I haven't lost a child though) all I can say is yes it will get better and yes you will be able to function. There are others on this thread far better qualified than me to talk about that, I know.

The sounds - you have been through a trauma and sound (and smell) will take us back to a trauma far more effectively than anything else. That should ease up too but you can get some help with that if you want. Talk to your GP about counselling. The point of this is not to help you 'get over' something. It's to enable you to sort of be able to file everything where it needs to be so you can function. Right now there is no other way to be but that will change. My brother in law died last year and I remember in the early days waking up with this crushing lump of grief and anxiety sitting right on my heart. I hated waking up because then you had to feel it. But it eased. Because of the nature of that bereavement I know it eased a lot sooner than this will ease for you but it will ease nonetheless.

CharltonHairstyle · 07/05/2012 15:05

I'm so very sorry to hear this. Your heart must be broken.
Take care xx

ExpatAl · 07/05/2012 15:06

My dh went back to work after his paternity leave and was keen to do so. He wanted some normalcy and it worked for him. He uses work time to sort of marshal his grieving thoughts.

Whatevertheweather · 07/05/2012 15:10

Greengoose I'm so very sorry to hear about your darling Merryn. She lived wrapped in your love for 33 precious weeks. I lost my dd Erin at 35 weeks pregnant last August. She was delivered by emcs after a routine scan showed she had hydrops fetalis. She lived for just 1 hour so I understand some of how you are feeling. You will feel totally lost and bewildered. You have suffered the most traumatic loss a parent can. I hope you can find some comfort in your boys, I too have an older dd and she pulled me through the darkest days.

Please ask any questions that you have and do please join us on the bereaved mummies thread when you feel able. I can't link on my phone but if you look in bereavement topic for a thread entitled 'even the smallest of footprints have the power to leave an everlasting imprint on earth' you will find us there.

Original poster
greengoose · 07/05/2012 15:13

Expatal thanks for talking about your little boy. Im sorry I made you cry. I would never wish this on anyone but you have made me feel less alone. One of the NICU monitor alarms had the same notes as the start of an Abba song, and the bloody thing will not leave my head.... That and my partners IPhone bleep, which we were called on any time we stepped out and they needed us back. Running into great ormond street at 3am, where only parents in similar hell were will never leave me.

OP posts:
Original poster
greengoose · 07/05/2012 15:19

My dp will start working again for part of next week. He has the ability, (and need), to box thing off, and cope. I just can't, but it will be good for him I think. I am managing to sleep at night, although I wake early, and my dreams are starting to be difficult.
Whatevertheweather, thanks for the link, I am trying to work up the juts to join a bereaved thread.... I still want to be un the June baby bus.... It a bit of a leap.

OP posts:
ExpatAl · 07/05/2012 15:20

I remember that. Different country but same scenario. It's a surreal bubble with no distinction between day and night, but in some ways quite protective. The special care unit was so incredibly kind we felt quite abandoned when we suddenly found ourselves stood outside the hospital waiting for the taxi with empty arms. These memories of beeps and calls etc will lose their intensity eventually and you might find yourself smiling when you remember holding your precious girl.

Original poster
greengoose · 07/05/2012 15:20

Guts not juts.... Bloody iPad

OP posts:
Whatevertheweather · 07/05/2012 15:23

Of course you do greengoose that is one of the hardest things - adjusting to this new life that has been thrust upon you that you never ever wanted. Take it a day at a time, slowly there will be better days I promise. My dp went back to work after 3 weeks. I took 5 months off in the end and went back in February this year. I found myself napping a lot as I couldn't sleep for long stretches but you do learn to live with your 'new normal' xx

Original poster
greengoose · 07/05/2012 15:27

ExpatAl, I hope so. It's very strange that my only memory of holding her is when she was dying. I smiled when they handed me her, I remember... I don't think my brain could get past the relief of finally holding her to the reality of her dying. It's a confusing memory. I remember how heavy she was... And all the tubes they had cut or clamped. I hope she knew I was there at the end.

It's a bit brutal having no faith or religion to fall back on at times like this, especially when the family are v. Religious. I can see the comfort there, even if I dont believe in it.

OP posts:
ExpatAl · 07/05/2012 15:33

She absolutely knew you were there. I promise you.