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.

She knew you were there. I'm sure she knew.

I hope this will comfort you - when I held my boy, kangaroo style, his blood pressure, breathing and other things I forget this moment but will think of, dropped dramatically. We could see the numbers fall as we sat there. He knew we were there and responded. It was beautiful. Your daughter will absolutely have known that you were holding her. Don't doubt it.

Whatevertheweather, I'm so sorry your little Erin died. It's so kind of you ladies to offer support for others when your pain is so sharp. My little girl also had Hydrops, caused by an SCT, a large tumor. The hydrops is what led to the need for Ecc, and the Mirror Syndrome in me.
I feel confused about my mind wanting to think about being pregnant again.... It feels disloyal or something.... Do other people feel this way, or is it denial or something? I'm 39 and worried this will be my last memory of having children.

Well it might be denial but the day we got back from the hospital we talked about getting pregnant again. When you've held and loved a baby that you need to say goodbye to, isn't it normal to want another? Well, consider me being disfunctional right alongside you!

GG Erin's hydrops was caused by fetal cancer but we only found this out with a post mortem. They were unable to help her breathe as she had an extensive tumour in her abdomen. We asked them to stop working on her after about 40mins and she was handed to us with a feint heartbeat. I like to think she felt our absolute utter love for her as her heart stopped and I am absolutely sure Merryn passed safe and warm in the knowledge of your love for her.

As for thinking about getting pregnant again - this is entirely normal. Nearly all the women I have spoken to have said they all felt an overwhelming need to 'try again' very soon after. I was fortunate enough to find out I was pregnant again in January and am now 23 weeks. Please don't feel guilty it does not diminish or change your feelings for Merryn in any way xx

ExpatAl, thankyou so much. They turned the monitors off, so I couldn't see them at the end, which is good, but I do remember how she liked if we rested our hand on her, which was all we were allowed to do.
I got a bit obsessed with the machines and monitors by the end.... Her NICU nurse used to give me a row and focus me back on Merryn... She was a bit lost in the middle of them. On the last night I could hardly see her... The nurse said she had every machine. It was too much.

Yes the machines are horrid and overwhelming. I didn't like feeling so helpless amongst the experts. I wanted to pick him up and just go. Sweetheart, I'm sending you many heartfelt hugs. I'm sorry - I'm at work and need to go to a meeting. I'll check in later. X

Whatevertheweather, it sounds like our little girls had the same condition? Merryns tumour was external as well as internal, which is why they could see it on the scans. It hadn't become cancerous yet, but would have if she survived and they hadnt removed it quickly. The hydrops was probably caused by the tumour straining the heart... We don't know really. We were given a 50/50 chance of her surviving until delivery, and a 97'/, chance of surviving surgery...the pregnancy was hell with scans every two weeks to see how big the tumor was. Our aim was 32 weeks, and I was so pleased to get there. I thought shed make it....

green I am so very very sorry for your loss.

My DS was born at 20 weeks 3 years ago. I promise you that you will get through this. Take each day as it comes and do not expect too much of yourself. I hope you and your family are getting lots of support.

As for getting pregnant again that feeling is entirely normal. No subsequent baby would ever replace Merynn (beautiful name by the way) but another baby may be the right way for you to move on as a family. I know that for me I needed to get pregnant as soon as possible. Within 6 months I was pregnant with my DS. In no way does my DS replace the DS I lost but, for me, helped heal some of that pain. That said I have a friend who had a similar loss who felt that she could not face getting pregnant again- and that was the right decision for her and her family. Whatever you decide I just wanted to send you my support.

Oh I am so so sorry.

It will get easier because the rawness and shock you are feeling now will ease.

It is a perfectly normal reaction to think about being pregnant again. The building of your family has been battered by a terrible event; a natural and positive reaction is to want to keep on building, to not let this take away the future as we as the present. It doesn't mean Merryn being replaced, if you were to have another baby you know that Merryn will be cheering you on from her place in your heart. Just as she was cheering you on when she could hear your voice and feel your emotions and knew that you were doing everything you could to help her.

Merryn is a beautiful name. I know one and she is a wonderful woman. Your Merryn will always be your unique, adored first DD no matter how big your family becomes, and a your children will grow up knowing the story of their brave, much loved sister.

Much love and strength to you.

So sorry for your loss, your daughters name is beautiful and you did what you could for her, no one would do anything any different xx

Whatevertheweather, I'm running a post behind! Congrats on your pregnancy! Its a bit of a relief to hear Im not the only one to think like this.... How long did you wait before trying? Had you had a csec? I'm worried they will say I either shouldn't try again or I have to wait for ages... I'm 39, and I had two mcs between my youngest DS and Merryn.

So very sorry for your loss :( can't begin to imagine what your going through, stay strong. hugs xx

i have no experience of this but i had a friend whose dd died at 37wks and she got pregnant again failry quickly and her another baby within a year of losing her dd.

it wont replace Merryn or make her loss any easy to bare but it can be a way of moving forward and of giving you all something positive to focus on?

i have no wise words like all these lovely ladies, my heart breaks for you all :(

xxx

It does sound similar GG. Hers was cancerous, all internal and apparently only a few millimetres thick but extensive (was in her abdomen, liver, pancreas, spleen) it wasn't detected on u/s scans at all. The hydrops was discovered when I went in for monitoring as I hadn't felt her move much and she was delivered immediately. It was a huge shock and I still struggle with flashbacks to the delivery and operating theatre. honestly you think you won't survive but somehow you do. You will surprise yourself countless times over the coming months. I will light a candle for Merryn this evening xx

Remembering Merryn. A beautiful name.
And she will have known you were there for her, and holding her. The pain of grief will become less sharp but she will always be your precious little girl.

Just seen your next post. Yes I did have a c section but it healed well and so far have had no problems with the scar at all. It's a little itchy at times as it's being stretched but nothing too bad. I am lucky enough to be looked after by the same consultant who delivered Erin so she is very understanding and will deliver this little one at 37 weeks by c-section again (all being well fingers crossed). I won't pretend it's easy being pregnant again, it's emotionally and physically tiring but its the right thing for us and our older dd. Erin will always be our much loved and every day missed middle daughter. How old are your other dc's? How are they coping?

Greengoose,

I'm so, so sorry to hear what you, and your family, are going through.

M x

Whatevertheweather my DSs are 9 and 4. Great Ormand Street were amazing with them. (they were in London from the night Merryn was born, with in laws in tow to help out). GOSH put us all up and had a kids club the boys went to whenever they wanted, so they kind of enjoyed it.
They have lots of questions and fears, and they say everything as they think it, which is great but can rip at your heart. I think they are doing ok. School has been great with them too.
You think you can protect your kids.... Then something like this happens, and now I'm having to bite my tongue and not be overprotective. It's like I now know anything can and does happen.

I'm also from the June thread.. Greengoose, I'm so so sorry for your loss. Merryn is such a pretty name and she sounded beautiful. Thinking of you and your family.

Thanks to the mums who have said hello from the June thread. All the best for next month! I might lurk a little from the end of the month to hear your good news.... Babies are still making me smile thank god!

Greengoose, you are more than welcome to lurk and to post anytime x

Greengoose, my thoughts are with you and your family. Merryn is a beautiful name xx

GG I am so sorry about the loss of your Merryn. This is just so tragic.
I am sure your daughter felt all the love you all felt for her.

green I left the june thread after a mmc at 14wks :( I thought that was awful, but it pales into insignificance, my heart goes out to you, your dd sounds beautiful.

Keep talking xx