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

[greengoose]

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.

Thanks ladies.... Tommorow will hopefully be less bleak. I seem to go up and down. I just really really miss my girl, that's all.

green, I hope I didn't make you feel bad when I said our boys need us. I did mean long-term! In those awful early days, my boys were lucky to get fed and put to bed! And a lot of TV was watched.
Of course you want to hold her and cuddle her. You always will. But it will get easier, month by month. Most mornings you will think of her first thing and most nights you will think of her last thing. But it does get less raw.

How was today Greengoose?

Please know that you are in my thoughts, I wish there was something I could do/say to help you feel better in this very, very hard time.

Love to you and your family xx

God bless all your family greengoose. Take life one day at a time, or even five minutes at a time if that seems too hard. So much love and support going out to you that if you close your eyes, you should feel like you are being enveloped in a big, warm hug.

Sweetlucy.... I'm sorry your little boy died, but thank you for telling me..... It's so difficult not to have any religious beliefs just now.... Almost every website, even sands seems full of religious type thoughts and I just don't have that to fall back on. It would be easier if I thought I would meet her again, but I did love her with everything I had while she was here....

5madthings and Northerlurker.... I didn't smash anything in the end....!

Chip monkey.... You didn't make me feel bad, looking after my boys is what gets me through just now. As my four year old said, 'mummy needs lots of us right now'.

I have had a tough couple of days, I think that's just how life is now. Looking in on the blanket thread has made me smile though.... Thankyou all the amazing ladies who are working on this, it is so important to me that so many people have known about Merryn and cared enough to do this. When I'm feeling a bit more alive I will join you to share what you have taught me and help someone else. (although I'm a bit crap at knitting, be warned)!

It's a month today since Merryn died. It feels like a second and an eternity at the same time. I think it will still feel that way if I reach ninety. She was so beautiful.

green, I'm afraid I'm one of the spiritual ones but I remember seeing an article by a lady who also had no faith and who lost her daughter. It was a nice article, I'll see if I can find it.
I have to say, it is comforting for me to feel I'll see Sylvie-Rose again but having said that, it's hard to know how comforting. I feel that my Dad is looking after her but I feel terribly jealous that he gets to raise her and that if I do see her again, she'll be all grown up and not into "little girl" things. I still don't get to hold her, to breastfeed her, to wash her, to dress her. At the end of the day, my life here without her doesn't change a whole lot for feeling that I'll see her IYKWIM.

After she died, I did ask for signs from her and I think I got them. I don't know if that's too "woo" for you, it would have been for me once. It was somethiing that was said to me by a friend and it worked for me. Do tell me to feck off if I'm out of line, I won't mind!

I am so sorry for your loss greengoose. I gave birth to my little sleeping boy two weeks ago today at 38 weeks. I just wanted to say that I found your description of how you cared for Merryn before and after she died so moving and your love for your little girl shines through. I don't have any religion to fall back on either but I DO believe in the resilience of the human spirit and I believe in family and I believe in love and that's a type of faith and that's what will give us the strength to keep going (well, at least that's what I think on my good days....other days, not so good). Maybe it would be comforting to believe in some kind of reunion in the after-life but we can certainly keep our babies close to us in this life in our hearts and memories. A poor substitute for having them in our arms I know. I'll be thinking of you.

MATILDA... Thank you, what you have written really resonated with how I feel. I think the belief in the reilience of the human spirit has been demonstrated so many times since our girl died. The strength and kindness of people is the thing pulling me through this. I'm so sorry you have lost your little boy. It is so recent still for you, I expect you are still finding it all difficult to predict emotionally. I am a little more stable sometimes, but I still don't know how I will be later today and tommorow is anyone's guess..... I am taking it as it comes, but I am beginning to have periods where I can cope for a while with life again. The ladies on MN have been amazing.

We went to visit BIL this WE. It was all very bizarre. It's the first time since Merryn was born, and after big hugs when we arrived they went on to have a picnic tea in garden and a walk and didn't mention her or what has happened once.... We were so surprised that we didn't challenge it, but next time I will have to say something, it was like nothing had happened!! It really upset me actually... She was their niece! They didn't even say her name or ask how we were??

Chipmonkey.... Not too 'woo' and you don't need to feck off!!

I still talk to Merryn in my head all the time, I smile and say hi to her pictures, and I catch her face in the tilt of her brothers expressions. I think a bit of her is in me, just as I was in her, and we are mixed up together, the bit of me that died a little with her is fair payment for the bit of her that has stayed lodged in my heart. If she ever has another brother or sister a bit of her will be in them too, in the curls they have or the bravery or the long fingers or the dimple on their top lip. She has changed us and lives in those changes, and I have to make sure those changes are for the good. What she left behind can't just be grief and tears, that's not what a baby does, a baby brings hope and love, and I won't rob Merryn of that when she has so little. That's my promise to her I guess....that she will have had a place and a power in our lives. That she has had a place in this world and has taught us how big love can be. I love you Merryn xx.

I'm so very sorry x

I'm glad you're not offended, greengoose. After I posted I felt a bit like I was the woman who used to accost me at the bus-stop when I was 18 and ask me to join the Legion of Mary. I was an agnostic/atheist at the time and was so annoyed the third time she asked!
And what does grate, faith or no faith, is people telling you she's in a better place. As if one were an unfit mother! Or "God wanted another angel" So he wasn't content with the billions he has and took mine? Oddly enough, my poor uncle, who is an atheist, I think came over to see us and just said "I don't know what to say" You know, I actually appreciated that. There IS nothing you can say that will make it better and he wasn't going to try
How very odd of your BIL! Only thing I can think of is that they couldn't think of the right thing to say so said nothing! But very, very upsetting for you.

1st of all im very sorry for your loss of your little girl .i havnt been on here very much as i am currently dealing with the loss of my son we didnt know he had a heart defect untill after he was born my little fighter fighted out for 11 weeks but we sadley lost him to an infection on december the 2nd 2011 its been the worst time of my life i wont say its gets easier you learn to deal with it there will always be bad days but in time they do lessen right now you may not feel like smiling but in time you will i havnt been in my little boys room as yet and its been 6 months all i can say is take your time and be gentle to yourself ..im thinkinf of you and your family at this heartbreaking time no parent should ever have to suffer the loss of there child no mother or father can ever prepare we did not choose this road but we learn to walk on it sometimes not as steady as the day before sometimes its very rocky but we learn to carry on xxx

justmee, so very sorry about your little boy, too. >

Justmee, so sorry that you lost your little boy, but thank you for telling me about him. Six months doesn't seem long to me, I can't imagine how long it will take to feel differently just now.

Today has been the worst in a while. Not sure why. Im beginning to realise this is real and she's gone and I will grieve her untill I die too. I don't know if I can carry this. It's too much to think about.

greengoose, for a while, I just wanted to die. There didn't seem to be any use in carrying on as my life was in tatters and all the colour had gone out of it. I thought about suicide but never considered it to be an option, as such, because I had my boys and I coudln't do that to them and dh. But I felt as if I was trapped in this life and that it wouldn't get better. I sort of prayed to die of natural causes as that would absolve me from the guilt!

Now, it's not "better" as better would have meant once but it's a lot better than it was. I can look forward. I am interested in my job again and I am able to put myself in fighting mode for my boys again, when it's required. Just after she died, I felt as if I were defeated and there was no fight left in my. (BTW, my boys have SENs so I do have to do a lot of fighting for them generally.)
It's kind of like having my life back but having to drag the ball and chain of grief around with me. It slows me down but it won't stop me!

Chip, I hope I get to where you are.... My boys need me too. My little one said the other day when I managed to do the school run 'does this mean you are all better now mummy?' they have had such a tough time too, they should have me back at least.

I watched the great ormond street programme on iplayer today, and the first two episodes were full of the NICU staff and surgeons that looked after Merryn. My DP doesn't understand how I could watch it, but all my memories of Merryn are from there, although I wish they weren't, and it helped me feel close to her. I also felt reassured that very ill children can get better, and we did the best for her by pushing for her to be there. I just wish she had been one of their miracles too....

Today I remembered how heavy her arm was while I washed her and how her ears curled and had fine hairs on the edge. I'm worried I'll forget her.

green, shortly after Sylvie-Rose died, I was watching TV at home and up popped the doctor who had seen Sylvie-Rose when she was admitted to the children's hospital. I will always remember him saying that she had a 6% chance of survival. Before in the NICU we had been told she would have a 90% chance of being normal, so to go to a 6% chance of survival was dreadful. Still, I hung on to that 6% till I found out it was probably just a number he used instead of saying no chance.
I found it kind of strange to see him there, treating other children for relatively minor injuries when he hadn't been able to save Sylvie-Rose. I kind of felt everything should have stopped in the A&E too, but even there, life goes on....,

Chip... They gave Merryn those sort of odds too..... 1/40000 or getting the tumour, then when she got it 50./' chance of making it to live birth, then if born alive after 32 weeks 97./' chance of surviving the op. I believed it all, and I guess so did they, but she must have been the unluckiest girl in the world...

I need to try harder tommorow or I'm going to go backwards. I just want to stay in bed. I think DP going back to work has really thrown me. Life seems to have continued for everyone except Merryn and I.

green, I did stay in bed for a while. My Mum stayed and did everything and I mean everything. Sleeping seemed easier. Being awake was a nightmare. And then one day, Mum said "I'll go home today, I think it's time I did" and I had to get on with things. There was no-one else, dh was back at work.
I have to say, I felt very numb towards my smaller boys in the first month. I think now that it was shock but when I would hug them, I felt nothing much at all. My older boys, it was the same but not ds3 and ds4, it was almost as though they weren't mine. And then it all came back again, to my immense relief. But it was awful while it lasted, I felt as though I shouldn't have had her, if losing her meant I had lost all feelings for the boys.
I adore my little boys now and despite everything, I'm glad I had her, even though losing her was unbearable. It was nice that she came to stay, even if it was too, too short.

How you doing lovely? Thinking of you

Thinking of you, greengoose.

im sorry to hear about your littl girl too chip monkey i hadnt realised.

we didnt know about my sons problem he had an undected heart defect but we were always promised he would go home we were planning on going home never to think about plannning a funeral , in hospital id see parents break down and cry as theyde lost there babies but you never think that parent will be you :( i asked my many times why did you pick me what did i do am i really that much of a bad person kaan was our 4th pregnancy after 3 mcs i can honestly say we thought we had our take home baby ..how wrong could i have been i find myself visiting a grave where 2 tiny feet lay at rest some days i dont want to gt out of bed and some days i dont want to be alone there are many things you will feel hunni and every part of that is normal you have lost your baby and with that a part of you has gone too noting anyone can say or do helps i know because iv tried but talking to people who understand has really helped me i was offerd no conceling and therefour some days i felt so alone and i have thought of taking my own life but something that stopped me was when i looked at my son fighting for his i know it would be so selfish of me to do that i know he wouldnt want me to do that and so with that i do try my best to carry on even though its very hard..heres a poem which i think says everything ..thinking of you xxxx

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not
theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don?t hurt quite as much.
Some have worn the shoes so long that days will go by before they think
about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child

justmee, that poem is so very moving. xxx

Chip monkey, your mum sounds very wise. Mine still hasn't visited, but that's another story altogether!

Justmee, I'm sorry about your wee boy. Thank you for the poem, so true.... But I still hope I'll learn to find some hope from all this somehow. My little girl would not want to have a negative effect on her family and I'm going to try so hard for this to make me better or stronger, or at least more aware of how good my life is in most ways. She's the one who had nothing, not me. I owe her.

I (finally) did the school run today, and it was fine. Everyone was lovely and it was so sunny. I've not seen some of those friends for ages, and it was good to be surrounded by them again.

My Inlaws get here in an hour, so I need to gear myself up for a weekend of visitors. The distraction is probably no bad thing.

(The other brave thing I did today was go to the doctor, and sort out something that's going to mean a hospital referal, but it needed done and I'll survive it I guess. My little girl has made me brave I think... I also walked around town and went for coffee with a couple of good friends, and it's the first time I've gone to our town since Merryn was born. Tommorow I'll probably be back under the duvet, but I'm proud of today.)