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*Trigger Warning* Poorly baby, long post

61 replies

ELBlack · 08/09/2021 05:48

I'm really not okay. I've had a complete breakdown it feels like I can't even open my eyes they're so swollen from the crying. My daughter was born at 37+4 after a long, exhausting and traumatising induction process due to a series of reduced movements. My daughter was born via emergency forceps delivery after an hour of pushing. I wasn't having contractions so she was yanked out as a she was so low and a c section wouldn't have been quick enough apparently, however the cord was wrapped very tightly around her neck and they spent 15 minutes trying to revive her before whisking her off to NICU.

She is currently ventilated, sedated and going through a 3 day 'cooling period' before they can warm her up again in a couple of days and try and address her state.

It's killing me because when they say she is doing well, they really only mean that she's not showing any concerning abnormalities at that moment in time whilst she's so sedated. There's absolutely no idea in seeing how her life is going to be impacted until we get the results back from her MRI. Which they won't do until she's 7 days old, and they can take a couple of weeks to come back. Brains are so complicated that it could be she's got some sort of damage which initially might not seem that severe and when she comes out of her cooling period and off the ventilator she may even be able to start feeding, crying, putting on weight and go to the toilet etc, doing things a baby would, and if that's the case we can take her home, but it won't indicate what any long term damage may look like her for (assuming of course she will have some, I know there's every chance she could make a full recovery and have a normal life), so that's what the MRI results will tell us.

I'm so terrified she's going to get warmed up and just suddenly not cope and go downhill and have to be ventilated again, or that she's going to show positive signs and then we get the results back and it turns out she's going to be a very poorly child needing so much help and not being able to live a normal life.

I know there's so many variables and outcomes to this, but my mind is racing and my heart is broken. I feel like the shock has worn off a bit and I'm realising that I'm without my baby, and I just can't take it. I've not even held her and she's nearly 48 hours.

I don't know what I expect from this post, but I'm hoping for some support and words of encouragement.

Thank you for reading x

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CliffsofMohair · 08/09/2021 05:50

Oh OP 💐. How traumatic for you. Have you support with you

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gabbygabbygabby · 08/09/2021 06:06

I'm so sorry OP.
It's incredibly distressing.
When I had my DD I had all these naive assumptions that it would all be straight forward and you 'just have the baby'. It's more common than I ever thought for things like this to go wrong.

I was in a similar position 4 years ago when my DD was born. It was a 40 hour labour and then the CTG showed foetal distress and I showed signs signs of sepsis so they emergency forceps her out. She was diagnosed with meningitis at 1 day old and my life felt like it changed in front of my eyes; I was worried she would die and if we were lucky enough that she didn't would she have serious lifelong disabilities. She was in SCBU for 2 weeks and had about 150 antibiotics infusions.

She fought through though and we got to take her home. The next year was spent worrying about development (and regular paeds follow up)... and she is absolutely normal. She's a boisterous 4 year old.

Obviously out stories aren't exactly the same but I hope you can take a tiny bit of hope from mine.

Sending so much love. I remember the isolation and the hopeless feeling like it was yesterday. You are doing SO well, please look after yourself too xxxx

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CheeseMaiden · 08/09/2021 06:12

No advice I’m afraid but sending you a massive hug xxx

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MotherMole · 08/09/2021 06:14

Couldn’t read without commenting. You’ll find the strength to get through this, one day at a time Flowers FlowersFlowers

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custardbear · 08/09/2021 06:30

I've no experience or advice but send loads of positivity and luck to you Thanks
you're the way you are because of worry about the unknown, you won't know for a while, but you will know shortly and it's just trying to keep yourself distracted as much as you can, easily said I know.
I'll have everything crossed for your baby and looking forward to positive news from you soon BlushThanks

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ELBlack · 08/09/2021 13:27

Thank you all so much, the kind words and support really make a big difference, especially when I feel so lonely and separate from her.

She is coming out of the cooling process tomorrow, so I'll hopefully update in the next couple of days.

I'm having a blood transfusion this afternoon, as I've been so weak and ill, this will hopefully make a huge difference in how much strength I have and being able to spend more time with her xx

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DifficultPifcultLemonDifficult · 08/09/2021 13:36

Oh op Flowers

I had a very poorly little girl so I fully understand the looking ahead 5/10/15 years down the line.

All you can do is deal with today.

The doctors will explain everything, anything you don't understand or you want to know, don't be afraid to ask.

You are getting to know your little girl day by day, so looking to 5 years ahead and all the maybes won't give you a full picture.

Even if she has difficulties you will learn about them bit by bit and the ways to manage them bit by bit, so it's not going to be one massive scary shock all at once. She won't all of a sudden be this child you don't know how to cope with, she will just be your daughter who you will love and support in all the ways she needs, just like every parent does.

I hope your transfusion goes well, and that you manage to rest and gain some strength. Your little girl needs you fighting fit to advocate for her, so please make sure you're looking after yourself too.

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DifficultPifcultLemonDifficult · 08/09/2021 13:37

Also you didn't have to add a trigger warning, you're talking about your beautiful little girl, not something triggering.

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grey12 · 08/09/2021 13:41

Sending you big hugs and prayers for your lovely girl!!! ThanksThanksThanks

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Notalotofinspiration · 08/09/2021 13:59

Sending lots of hugs - I can only imagine how hard it must be.

I don't have any experience and the only advice I can give is to keep talking to the doctors and nurses and ask them to explain anything you don't understand. Maybe try to get hold of a notebook to keep track of everything they tell you. Also keep pushing for help and treatment for YOU.

I really hope you get to cuddle your beautiful girl soon xxx

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RuthTopp · 08/09/2021 14:04

I don't have any advice but wanted to add another hand to hold and hope you are receiving some real life supportFlowers

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thelastgoldeneagle · 08/09/2021 14:06

Sending you huge hugs and a gentle handhold. Poor you, and your poor dd. What a shock for you all.

Please update us when you can. I will be thinking about you and your precious dd.

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FreiasBathtub · 08/09/2021 14:29

Oh sweetheart. I'm so sorry. I had a very similar experience (moderate HIE following very long pushing and cord round the neck twice, cooling treatment and what felt like an unending wait to see what the consequences would be).

DifficultPificultLemonDifficult is completely right in everything she says. What you're going through is, frankly, the most terrifying thing that can happen to a parent - and it's happening to you right at the start of your parenting experience. But it won't always be this terrifying because you'll build a relationship with your lovely little girl and work out, together, how to manage any challenges she has (and it may, as you say, be none).

What I remember from my experience: the doctors are very, very cautious about raising hopes so they often end up sounding quite negative. If she's behaving as they expect while cooled, that is a good thing. But they are really approachable, at rounds or other times, and if you ask them questions they will always answer honestly, even if the answer is 'I don't know' or 'I can't tell you the answer yet'. We also found the nurses really wonderful, and able to describe a bit more about how our baby was getting on - all the little things that matter to you as a mum but probably not so much to the doctors!

The follow-up care we had was absolutely outstanding. Try to look after yourself as you get through the next few days. Once you know how she's tolerated the re-warming, you'll have a better sense of what you're looking at in the longer term. This is in many ways the scariest it will ever be, because it's the point at which you have the least information. Once you know what you're dealing with, it gets less terrifying.

Sending you and your little girl so much love.

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UtterlyUnimaginativeUsername · 08/09/2021 14:44

I'm so sorry to hear that you're going through this. Be gentle with yourself, try not to think about the long term stuff, just take one day at a time.

DS has similar when he was born. He had a heart problem they hadn't spotted in scans and then the cord got caught around his neck. They mistakenly monitored my heart rate with two machines rather than mine and his, so they didn't notice that his heart stopped at some stage during the last 20 minutes of labour. It took 12 minutes post birth to get his heart going again, and hours to stabilise him enough that we could see him. He had constant seizures for days. He was kept cooled - at the suggestion of a wonderful paediatrician, it had never been done in that hospital before and they didn't have any of the proper kit, so improvised. At 10 days, they told us he was catastrophically brain damaged. At 14 days, he suddenly turned a corner and started to display reflexes and his muscle tone improved. He had 11 months of physio, and was seen regularly by a paediatrician till he was 18 months. After that, it was up to us to keep an eye on things.

He's 9 now, and has shown no ill effects. He can do everything perfectly, and you'd never guess anything had happened.

It's a terrible, terrifying thing to go through. I'd advise you to maybe look at getting some therapy for yourself to deal with it. You need minding through this just as much as your lovely baby does.

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Notalotofinspiration · 08/09/2021 19:53

I hope you're doing ok OP xxx

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LouLikesLollies · 09/09/2021 09:15

No advice here either but just to say how brave you are and am sending lots of love and positive thoughts xx

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ELBlack · 09/09/2021 12:25

Thank you all so much for your kind words and encouraging stories. I'm moved to tears by all the love and support.

I hope to update the thread with positive news in the next few days xx

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ineedaholidayandwine · 09/09/2021 12:35

I have everything crossed for OP, stay strong, please com back and talk to us if your struggling and need an outlet Flowers

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DifficultPifcultLemonDifficult · 09/09/2021 13:29

Sending you and your little girl (congratulations by the way, I forgot to say that in my first post) all the love and best wishes in the world.

I hope your transfusion went well and you're feeling bit better.

I cant wait to see an update when you've had your first cuddle with your little girl soon Flowers

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BigPyjamas · 09/09/2021 13:33

Wishing you and your darling little one the best of luck today and onwards. Hope you get your first cuddles soon.

You're in my thoughts today Thanks

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Mousetrap5671 · 09/09/2021 15:23

Sending hugs. Didn't have a traumatic birth but did have the pain of waiting for MRIs etc when LO was born. 7 months on we still worry everyday about longer term development but they are doing really well.

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cheeseismydownfall · 10/09/2021 13:32

Sending my very best wishes to you and your baby.

My DD was OK at birth (37 weeks) but became very, very ill very quickly at around 4 days old. She had to be resuscitated and spent a week in NICU - no one really had no idea what was wrong or if she would pull through, and if she did, what the prognosis would be. It was absolutely terrifying and I remember very well the awful blackness, struggling to accept the suddenness of it all and how our lives had been spun off in this terrible, terrifying alternate reality and how alone I felt.

Wishing for the very best outcome for your DD.

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squashie34 · 11/09/2021 01:12

Sending you so much love OP 💗 and congratulations on the birth of your beautiful baby girl. Make sure you look after yourself too xx

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veryblearyeyed · 11/09/2021 03:39

How terrifying for you, OP. As PP have said, try not to worry about future scenarios. Concentrate on healing (even though you won’t be able to imagine why that even matters right now) so that you can give everything to your daughter when she needs you soon. I hope the transfusion helps you feel much stronger, and that you get to cuddle your precious daughter very very soon. Flowers

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Ivfmommy2b · 11/09/2021 07:28

A similar thing happened to my friend, her baby (16 months) is doing brilliantly, no problems whatsoever. Hope you have the same outcome. X

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