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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:
5madthings · 09/05/2012 14:13

greengoose you and the drs did what you could, which was to give her the chance of life, you thought it would work, no-one could have predicted the outcome and yes its awful that Merryn had to go through what she did, but i echo the other ladies who say she DID know you were there and that her dad was there, she could hear you, smell you, and she will have felt your touch when you put your hand on her and at the moment she most needed you you did hold her.

there will always be what ifs, but you did what was right at the time and you did it through love for Merryn. xxxxx

Original poster
greengoose · 09/05/2012 18:35

Thanks ladies.... I'm feeling a little more together than this morning... My boys are home which makes the world a lot brighter!
I am going to try to do the school run with DH tommorow morning, which will be a bit daunting, but good to have got it over with the first time.... I'm going to have to get through some extreme hugging....!
I also have what will hopefully be my last docs appt tomm. If my bloods and bp come back normal I'm hoping they will release me from having to check in every few days, so fingers crossed. I have had my fill of medical intervention I think.
I am trying to think of how to remember my little girl, and have started to write things down about how she felt and how I carried her (so different to the boys) when I was pregnant. I think one day I'll want to remember all the little details, and I don't want her just to become her photos.....it's a bit difficult to do though.
Anyway, before I loose grip again I'm going to listen in on dp reading to his boys....

OP posts:
WhatDreamsMayCome · 09/05/2012 18:45

I'm very sorry for the loss of your daughter, greengoose. Glad that you are coping a little better today. Writing your thoughts down will be therapeutic but all in good time. Take care.

pinkyp · 09/05/2012 19:47

Hi greengoose. Hope your ok as can be today? That's a lovely idea writing down everything you can remember, you'll want to hold on to as many memorys of your baby girl as you can. I hope the school run goes ok for you tomorrow, how are the boys coping with things? let us know how you get on, sending hugs to you all.

Northernlurker · 09/05/2012 20:14

Will be thinking of you on the school run. Hug and cry as much as you need and when you've done it once you'll never have to do that first time over again iyswim.
I hope the doctors goes well too.

We are all here listening you know. We can't lift this from you, we can't do anything to change the past but we can hear what you need to say and you will always have a space to talk about Merryn.

Original poster
greengoose · 10/05/2012 09:15

Well, after being so up for it, I've chickened out of school run, and coffee with a friend. I was awake most of night with migraine, so I think I'm a bit worried by going to docs.... I need to do that though, I know I wouldn't be stupid about health after what my family has been through.

It's three weeks this morning since my little girl died. I would have been 36 weeks pregnant yesterday. My arms are so physically sore from needing to hold her... I keep thinking I've left her somewhere or she must be hungry...

The carpet fitters came and laid the carpet in her room, and it looks lovely. I had argument with DH about his brother visiting because I don't want to let anyone sleep there, and I can't bare to sleep there myself, but it's silly, we need to use it. I just want it to be hers for a little while. I can go there and rearrange her cupboard and look at all her things....I know I'll have to move on soon, just not yet??

Anyway, I have to get ready to go to docs.... I think I might persuade dp to go out for a bit with me after that... It's not helping doing nothing. I'm craving my garden but everything is so wet..... Should be some sun tommorow though.

Sorry I'm so dismal, I'll try to come back a bit more positive later on.

OP posts:
DairyNips · 10/05/2012 09:19

Don't worry about the school run, there's plenty other days. Think I would have given it a miss too if I'd had a migraine. Hope the dr can help with that.

It tidy tally understandable you wanting Merryn's room to be hers for a while longer, it's very early days. Just take things at a pace that feels comfortable.
((hugs))

DairyNips · 10/05/2012 09:20

That should say 'it's totally understandable'

McKayz · 10/05/2012 09:20

You aren't dismal at all. You will get to do the school run at some point but it is up to you when you feel up to it.

xx

ExpatAl · 10/05/2012 14:02

Green, there is no need to be positive for us. I hid for a long time. My dh forced me out for walks in the forest and he led me by the hand as if I was a child. The grief of losing your child cuts deep - there are no words to describe how cruel it is. To have the memory of holding your tiny soft baby but to walk around with empty arms is incredibly difficult I know. Sending you strong hugs. Keep on taking tiny steps - they are all going in the right direction.

babamummy · 10/05/2012 14:37

I've just come across your thread, I'm so sorry to hear about Merryn. I lost my 13 mth old son coming up to two years ago and my heart always goes out when I hear about another mum going through the same thing. I remember it feeling so surreal after my son died. He had been in a NNU for his first four months. Merryn felt your love throughout her short life and I'm glad that you got to hold her at the end.

When my son died one of the first things me and my husband said to each other was that we would have more children. I remember staring at other mums with their babies in the months after he died. I got pregnant again quite quickly and remember feeling paranoid that everyone was thinking it was too quick and that I was trying to replace DS. The only important thing is what's right for you and your DH.

I will be thinking of you.

Original poster
greengoose · 10/05/2012 17:06

Dairynips.... Thanks for that, it's silly to make guests sleep in the lounge or something when this rooms empty... But just for a little while I want it to stay freshly done and Merryns. It's just so pretty.

ExpatAl.... My DH is doing the same for me just now.... We have been for almost daily drives (I still can't walk far), over the moor or to the sea. He's forcing me to eat and drink, which is good I know too. I try to look after him too, but I think he is doing better than me... Thanks for the hug, much needed!

Babamummy.... I am so sorry your boy died... I don't know how you coped with hospital for the first four months either.... You were v brave to try again so soon I think. The need to hold and love a baby isn't the same as replacing the baby we loose is it? I'm trying to convince myself that it's ok for me to want to try again soon.....

Well, I went to the docs, and it was one I didn't know with a student in tow, and I had to explain everything about Merryn and the various hospitals involved, and my Mirror Syndrome all over again. In the end she only took bp, and I didnt have the resolve to make her take bloods and the other things she should have. Gps are really crap sometimes.... I don't think she had heard of either merryns condition or mine. Hmmmm.

We drove by the river where we scattered Merryns ashes this afternoon, I couldn't face it, so we didn't get out. My dp is worried I hate going there.... He would go there much more, and finds comfort in it. I have to make myself. It still fills me with horror that we put my baby girl in the river... I know this is raw and it will eventually be somewhere to remember her and watch the boys play, but just for now the water is high and stormy and no place for a baby to be. I hope I grow to be ok with it.... I know I would have struggled even more with a grave and headstone. Maybe I'd have struggled with anything. None of its as it should be. She should be here. With me.

OP posts:
aurorastargazer · 10/05/2012 17:48

((((((((((((((((((((greengoose and mr greengoose)))))))))))))))))))

imogengladheart · 10/05/2012 19:30

This reply has been deleted

Message withdrawn at poster's request.

Northernlurker · 10/05/2012 21:41

The room thing isn't silly. It's Merryn's room and it needs to be hers for now. The minor inconvenience of a relative on a sofa isn't worth the pain it would cause you to think of it as anything other than her room just now.

The river - well it's not where you need to be. That may change, probably will. Don't meet that half way. For this hard time all you need to do is get through each day, love your dh and your sons and remember your baby. Don't try and think about all the other days and how you'll meet each one and what you'll need to do. Think about today and maybe tomorrow and think about the bits of time further than that, that you can think about and be at one with. Don't make yourself confront the stuff you aren't at one with because you think you should. You sound like such a gentle, lovely person but you need to be a little bit selfish for a while.

HalleLouja · 10/05/2012 23:06

Hugs to all of you.

ExpatAl · 11/05/2012 14:29

Hi Green. How are you today?
How dreadful that you had to explain everything to the dr. They should have read your notes beforehand. I'm very cross. It was a horrible situation that did not have to happen.
You would struggle with everything, because it's all so wrong. It's so wrong our heads struggle to assimilate it and our hearts are even slower. Give yourself time. Hold your dh's hand and comfort him by the river. It will help you.
I'm sure that any guest would gladly sleep anywhere you put them right now. See how you feel at the time.
Sending more hugs.

Original poster
greengoose · 11/05/2012 15:39

Well, today is sunny, finally.
One of my very very lovely friends has just called to say her and her partner really want us to use there holiday home in Italy during the summer..... I don't know if we will but it's just such a lovely kind offer isn't it? We were thinking how much we would love to get away, but camping in Wales is about all we could manage right now.... (Our time in London and everything after and DH having to cancel some work had put paid to anything more...)
I had been having a crappy day, but my lovely friend has really helped....

The ladies who make the Woolleyhug blankets have got me thinking. Merryn was given a small crochet blanket at Great Ormond Street, which we have now as one of our treasures ( I put it in a ziplock bag in the hope it would keep her smell, but it didn't so it is now wrapped around her teddy). This little homemade square was such a comfort in the midst of all the scarey machines, and I couldn't help but be grateful to whoever left it there. I think I will make a small batch of these to pass on to other NICU babies, and also to say thankyou. I want to pass on a little of the huge kindness we have been shown on MN and in RL. (I can't crochet, but I do patchwork reasonably...).

OP posts:
Northernlurker · 11/05/2012 15:57

Italian sunshine would be lovely wouldn't it?

I think the blankets is a wonderful idea. There is a real need for those little humanising gestures in such a medical environment and something made in love and rememberance is very powerful. I am a big believer in 'fellow feeling', in shared experience and the support you get from others who've walked that path too. That's a good thought you've had.

CheeseandGherkins · 11/05/2012 19:06

I'm so sorry for your loss. I've "met" you on the other thread and shared my story with you but wanted to express my sympathy here too as I've just seen your thread. Hugs xx

aurorastargazer · 12/05/2012 18:49

greengoose that's a lovely idea xx

Original poster
greengoose · 13/05/2012 23:02

Merryn would have been 1 month old today.

I don't know what to say. I wish she was here, but I'm glad she's not suffering. My arms ache today from missing her. I'm worried im forgetting what she looked like and replacing the memory with her photos. I remember how soft her top lip was, and how fine her hair was and her eyebrows. I remember how defiant her little chin looked and how she kicked inside of me. I remember how heavy she was and how proud I was.

People are already starting to fit me back into normal life, almost as if I'm the same person. I don't feel like the same person. I don't know how to care about what I cared about before....it all seems a bit trivial now, except for my boys of course. I guess I just have to get through the days for now.

I am going to get in touch with the local sands group, it might help to have somewhere to talk.

Cheeseandgerkins.... Thanks for saying hi here.... I'm rambling on all over MN just now.... I guess it saves my DP from having to listen to me!

OP posts:
1944girl · 13/05/2012 23:19

This reply has been deleted

Message withdrawn at poster's request.

tallulahpolly · 14/05/2012 08:43

So sorry for your loss greengoose. Merryn is a lovely name. You won't forget anything. My Jacob died in my arms at 5 days old, 7 months ago. Although it hurts, sometimes I close my eyes and I am back there in the hospital with him and I can remember everything. Sometimes your mind stops you remembering too much at a time because it hurts your heart too much.
We were given Jacob's blankets from NICU and you are right, they are a comfort. I learned to knit after he died and now I send all sorts of knitted things to as many baby charities as I can. It does help to give something back. Go easy on yourself, you are not the same person, none of us are after losing a child. My Mum told me to treat myself as an invalid for at least 6 months, be kind to yourself, don't expect too much from yourself and do what YOU need to do to keep going.
Sorry for long post, my heart goes out to you.

chipmonkey · 14/05/2012 11:51

greengoose, I have only just found your thread. I am so sorry you lost your beautiful girl and Merryn is a beautiful name.

I lost my lovely girl too. We had 6 weeks of NICU, then she came home and died of SIDS. Sylvie-Rose didn't like NICU much either but they do know their Mums and your Merryn knew you were there for her.

We buried Sylvie-Rose but have not got a headstone yet. Believe me, there is no proper "place" for a baby who has died. Whether you scatter their ashes, or bury them, none of it is right because a baby should not die. There have been nights where I have thought of her lying in the cold wet ground, days where I have cried over the little white wooden cross.

7 months on, her Moses basket is still in our bedroom and the little dresses she should have worn are still hanging in my wardrobe. I am in no rush to put them away. Do it all in your own good time.