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Miscarriage/pregnancy loss

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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.

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greengoose · 14/05/2012 12:53

Tallulahpoppy.... thank you for telling me about Jacob. That's the name of our 9yr old, so I obviously think it is v special too. I'm am so sorry to hear you had to loose him. It's agony isn't it?

The knitting ideas sounds so kind, and I for one really appreciate some unknown mum who did this for Merryn. I often wonder if her little one made it home or not... I hope so.

Chipmonkey.... I am so glad that you got to have Sylvie-Rose home with you, but so sorry she couldn't stay. I agree there is no correct place for a baby other than in our arms. I was comforted to hear you still have her things around you... I don't want to think about putting anything away for a very long time.

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greengoose · 14/05/2012 14:09

I wanted to tell a bit about what happened after Merryn died. It's part of her story, and I don't want to forget it, and also it might say something to others in that horrible time when you have to make decisions about what to do....

Merryn died in London, and after getting her birth and death certificate on the same day (which was horrendous), we drove home to Devon. We couldn't take her with us as they hadn't decided about a PM yet, so we had to leave her at Great Ormond Street. It was horrible leaving her so far behind us, and I remember driving past the county sign for Devon, which is always a 'coming home' moment for me, and dissolving because she wasn't there. I had been planning bringing her home for such a long time.

Once back we knew we had to arrange what would happen next for her, and later that day we got a call saying there was no need for a PM and no possibility of using her organs to help save another little one. We got in touch with The Green Funeral Company, which is the nearest to our home. It was such a relief to find how lovely they were. Rupert drove to London the next day (sat), and brought Merryn back for us. I couldn't face having her at home, so she stayed in the place they have nr the boys school. I went to sit in the room next to where she was every day, it was lovely to sit watching the wood burner and talk through how I was and have her close. It was such a relief to have her home in Devon, and to know Claire and Rupert were looking after her. Claire asked if it was ok if she gave her a kiss.
My DP was able to go in with her and talk to her and give her cuddles, but I wanted to keep my last memory of her and didn't want to do this. Claire talked through this choice with me, and I am happy with it still. We initially thought we wanted to bury Merryn in our village cemetery, and the vicar was lovely, agreeing to us not having any religious service. When we went to see where it would be though I felt strongly it was wrong for her and us, and I couldn't do it. Rupert and Claire gave us lots of help and time to find out what we wanted. They told us we could bury Merryn on our land if we wanted, I didn't even know this was an option.
Eventually after a few more days we decided that we would cremate Merryn and scatter her ashes in the river that flows by our house, past the boys school, and out to the sea. My dp liked the thought that she would be with us in all these places and at the beaches we go to as well.
We chose a wicker basket which was woven just for her, and my DH put her in it wrapped in a blanket I had made, and holding a little bird I had sewn for her. She also held five bluebells from our garden, one for her and one from each of us and the boys. We drove her ourselves to the crematorium in Bodmin, and spent some time there saying a quiet goodbye before going home. We had no service or anyone else there, and we left her in front of the big window with a view across Cornwall.
The next day we drove back to get her ashes. (not all crematoriums will get ashes back from a baby, but some do things differently to give a better chance of this). We drove to a place nr the source of the river where the boys play and we picnic in the summer. It's beautiful. We scattered her ashes in the water and cried and said goodbye to my little girl. Wild horses watched us.
At the weekend we went back with my boys who had gathered bunches of flowers from our garden, and they said goodbye to Merryn and scattered the flowers on the water before chasing them downstream giggling and playing in the sun.
Sometimes we just drive that way now, but I find it hard to go there. It will get easier I hope.

If anyone reads this who is faced with these decisions then I hope you find as much support as we did. There are really good undertakers out there now who are full of sympathy and compassion, and it helped us to have this. You can google the green funeral company and read about the way they work, and they have lovely but heartbreaking quotes from families they have helped find a way to say goodbye. I'm sure they know of similar undertakers in other parts of the country. Anyway, we owe them our heartfelt thanks... It was like speaking to old friends although we had never met.

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5madthings · 14/05/2012 14:22

no words but plenty of tears here :( your love shines through and the sheer amount of thought to detail that you put into making sure everything was a right as it could possibly be for Merryn, much love to you and your family xxx

greengoose · 14/05/2012 14:27

Thanks 5madthings. Xx

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Molehillmountain · 14/05/2012 14:52

I just wanted to say that I'm thinking of you, greengoose. I can't say anything eloquent, I'm just very sorry for your loss. I am doing my best possible knitting for your blanket.

greengoose · 14/05/2012 15:14

Thanks Molehill.... The Idea of the blanket and the thought behind it has been making me smile every day, and some days that's a big job right now.... I can't wait to see it and explain to my boys about the kindness of people, it's going to be there in our dark moments and be a reminder of hope and love. It's eloquent enough for me! Thanks for helping.... It means lots.

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tallulahpolly · 14/05/2012 15:48

What you did for Merryn sounds perfect for you and your family. I hope in the months to come remembering that will help you through. The kindness of strangers is something I and DH were overwhelmed by and still helps me when I remember it now. If I could meet you in RL I would give you such a big unmumsnetty HUG. Stay strong.

chipmonkey · 14/05/2012 17:37

greengoose, that sounds so lovely and I love the idea of the wicker basket and the bluebells. Each of my four boys laid a white rose on their sister's coffin xx

ThreadWatcher · 14/05/2012 20:53

Sorry for your loss :(

SarryB · 15/05/2012 09:23

Sending you all my love.

greengoose · 15/05/2012 16:58

Thanks, Tallulahpoppy. I hope time will make things a little easier...

Chipmonkey, You must have been so proud of your boys... Big brothers are so special aren't they!

I did the school run today for the first time (with DP), so that's over with. I also saw some friends for coffee, and one of them asked if she could see merryns photos, so I got to show off my gorgeous little girl. It's sad that most friends ask the first time they see me, and then the next time it's as if nothing happened. I'm not sure how to cope with that, and I can see they don't know what to do and mean well, but soon if I let it continue like this it will be as if I never had a little girl called Merryn, and I don't think I can cope with that.

My oldest DS put her name up on the fridge in magnets in between his and his brothers yesterday. I told him I had noticed and it had made me smile, and he said 'well she is my sister'. He understands then!

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Northernlurker · 15/05/2012 17:49

You've done so well to do the school run today Smile

Thank you for sharing the plans you made for Merryn after she'd died. The undertakers sound like amazing people. What a great service they're providing.

Northernlurker · 15/05/2012 18:05

Oh my word - I've just looked at the website for the Green Funeral Company. What a remarkable and wonderful service they are offering. I found myself nodding along as I read. Their philosophy is exactly in tune with my personal views and so much more human than the 'traditional' approach. Wow!
Oh Greengoose - you made a good choice there. Absolutely the right thing for your precious girl.

greengoose · 15/05/2012 21:26

Thanks Northerlurker.... Claire and Rupert, aka The Green Funeral Company, were truly amazing. I was so relieved to find them, they just understood us, and they were so so kind to Merryn. It was such a lovely place to 'visit' her too, so peaceful in contrast to NICU, and they gave us time whenever we called.....lots of tea and tissues. I won't forget how dedicated they were, and how much they did for all of us.

Tommorow is the day I would have been 37 weeks, and my section was scheduled. If she had made it until then she would have probably been stong enough for her op. I think I'll go for a walk along the river. I wish she was still inside me. I really miss her.

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5madthings · 15/05/2012 22:52

oh greengoose, i am sorry your friends are not talking about Merryn :( its lovely one friend asked to see pictures of her, and if you wanted to put one up on your profile i am sure lots of mnetters would love to see your beautiful little girl, i undestand if you wouldnt want to do this tho :)

how lovely of your eldest to put her name up on the fridge, he is so right she is his sister and he will always remember her and she will be a part of his life.

i really dont know what to say, but i am thinking of you and your family. i hope you have sunshine for your walk tomorrow, we have had hail here today! fingers crossed for lovely weather for you, if there are any clouds will them over my way i dont mind!

sending love and strength to you xxxxxxx

chipmonkey · 16/05/2012 10:41

greengoose, I just looked at the Green funeral company too. How very lovely! And the wicker basket is so very pretty. Oddly enough, the funeral director we had mistakenly thought that we wanted to bury Sylvie-Rose in her Moses basket and I rememeber being surprised that he considered it an option but I think if I'd known about wicker coffins, I probably would have got one, it looks so much more appropriate for a baby.
You will always have a daughter called Merryn and your boys will always have a sister.

Northernlurker · 16/05/2012 19:28

Remembering Merryn today on this landmark day for you. I hope it's gone peacefully for you.

greengoose · 16/05/2012 20:06

Today is the day Merryn should have been born. If she had been born today shed have been so much stronger, and her own surgeon ( mr Kiely from great ormond st), would have been back to operate.
If I hadn't got ill she might have made it.... By being born she saved my life. I feel so bloody guilty. And angry. I really desperately miss her. I'm so sorry.

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Northernlurker · 16/05/2012 20:14

You feel guilty because you survived and she didn't. But you got ill because of the pregnancy. Nothing you did made you ill. It was your state at the time that made you ill and then they had to deliver her. If they had left her you would have died and very likely she would have too. Greengoose - you and Merryn had desperately bad luck but you weren't at fault. I won't say don't feel guilty because in your shoes I'm sure I would feel the same and so would any mother actually. It's our job to protect them. However you aren't guilty, you aren't responsible, it's not your fault and I hope in time you can get more comfortable with feeling that.

chipmonkey · 16/05/2012 20:16

greengoose, you did nothing wrong, you really truly didn't. Life is so horribly cruel sometimes. There is no way you did anything to deserve this.

chipmonkey · 16/05/2012 20:20

greengoose, when Sylvie-Rose was born by crash section, I needed 10 units of blood. If it was not for my obs, I may have died. I feel guilty that the operation to save my life was the one that put her at risk, if she had been born even 2 weeks later, she may have been less susceptible to SIDS. There are times when I wish that I could have gone then and been there to meet her on the other side. But then my boys wouldn't have me. And greengoose, our boys need us!

greengoose · 16/05/2012 20:38

I've not been able to play with my boys or anything today. Their dad has done everything. I just miss her so much today. I have looked at every detail of every photo we have of her, and it's not enough. I want to smash things.

I really need to hold her.

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5madthings · 16/05/2012 20:45

i think its ok to have days like that, they have their dad and that is fine :) if you want to smash things then do so, i would do and have done in the past actually years ago when life was really crappy (too long to go into, miscarriage, redundancy, depression etc) and it helped a teeny tiny bit to vent that frustration and anger, it may help you.

and what northern and others have said so much more elequantly than me! xxx

sweetlucy · 16/05/2012 21:28

Greengoose,

Your story is heartbreaking. It's so terribly hard to lose a baby. :(

I have no faith either so felt terribly lost when I lost my baby boy. I went to see a counsellor and she asked me to get a nice notebook and write my feelings and thoughts about my baby boy. It helped a lot. I feel it's a way of acknowledging his existence and a way express the love I have for him.

You will never forget, but things will get better somehow.

x

Northernlurker · 16/05/2012 21:30

Oh yes - if you need to smash something then smash away - just pick something that you can smash in such a way that you won't cut yourself and wear eye protection if splinters are likely. Mirrors and windows not good. Hurling a plate or 20 outside might be an idea. Go and buy some cheap ones from Tesco.