Pre Eclampsia support

For Women & their families who have suffered with Pre Eclampsia, Eclampsia, HELLP syndrome, Pregnancy induced hypertension (PIH) and related conditions.
 
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 After A premature baby

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Liz Pidgley
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PostSubject: After A premature baby   Fri 23 May 2008, 1:28 pm

Hi, I thought I would add a few ramblings to this subject as the more I talk to families who have spent time on the Special care units with their babies, there seems to be a very similar theme. So I hope you don’t mind me sharing my memories of this time with you. Sorry its quite long!

My daughter Aimee was born at 26 weeks. I had no time to make the best of the steroid injection they had given me a couple of hours earlier and as I deteriorated rapidly, the decision was made to 'get this baby out'.
I have very few memories of the actual delivery...I was awake because I point blank refused a general anaesthetic....but to be honest I wasn’t really on the planet. I didn’t actually get to see Aimee for about 4/5 days. My family bought me video recordings of her to me, but I couldn’t really see because of the tears.
On one day I saw 2 nurses coming towards me, I used to work on an ITU and 'knew' that they were going to tell me Aimee was dead. I didn’t know it was the Sister & a student nurse, but because I 'knew', I didn’t hear a word they told me. I just remember telling them with no uncertainty, If they didn’t take me round to the neonatal unit NOW, I was going to get out of this *#@%$* bed and walk. (Like I could have tried!!!!)

That was the first of 8 1/2 months worth of visits, and one I will never forget.
They wheeled me into the unit, having cleared everyone else out because of the stacks of equipment that had to come with me, and there for the first time I saw my beautiful, perfect little 'prawn', weighing 750g. I called her my prawn because that’s what she looked like. My husband thought she looked like a road map as you could see everything through her transparent skin.
If ever I willed for anything it was for nothing else but her survival. I'm not really a 'church going' person, but I have a quiet faith, and if ever there was a time to call in some help for her, then now was the time. We had Aimee Christened an hour later.
The staff on the unit from that day, showed me & my new little family the most sensitive care I have ever experienced. They made phone calls to get the hospital chaplain & a few family members & friends together (some via a phone link) to be with us as she was Christened. They had thoughtfully silenced all the monitors & took the chance to have a small candle lit on a dressings trolley, covered & decorated to look like a little alter. They even had a tiny little font. I stifled my tears the entire way through. I couldn’t look at the desperation in everyone else’s eyes, knowing it was reflected in my own.

As we left her to take me back to HDU, I noticed the apple green painted walls with 'Winnie the Pooh' Stickers dotted around. I noticed the silence except for the beeping of machines and the efficient footsteps of staff. I remember thinking, about the apple green walls we had just painted for the nursery & the pack of Winnie the Pooh stickers I had yet to put up. They looked quite nice.

I spent 2 weeks on a postnatal ward after that. I was put in a room on my own (so I wouldn’t be upset by the babies?) opposite the nurses station. It was so lonely.
I refused breakfast in the ‘community room’; the other mums looked at me as if to say ‘why are you here? You don’t look ‘fat’ enough to have just delivered a baby. Others gave a sympathetic look, but no one spoke to me.
Oh yes I saw the midwife twice a day who dutifully took my blood pressure ,checked my uterus was contracting normally & checked my caesarian wound….but no one noticed me leap from my skin every time the ward phone rang. Was this the call to say Aimee had died?
My solace came from the wheelchair ride back to the unit to see my baby, but my heart was already sinking by the time we got to the lift to come back upstairs for the next round of checks….there were ‘Tigger’ stickers too, nice.

‘Home today’ said the Midwife busily moving around my room…..’That will be nice for you, back in your own bed.’ My blood ran cold…..I can’t go home….who will look out for Aimee? I was inconsolable. It was only back on the NNU that I was told I could stay in the ‘Mothers room’ for a few days. Aimee was still ventilated, on ‘max’ therapies. I became oblivious to the continual beeps & alarms of the life support machines.
But footsteps…they were another matter. I couldn’t go home.
I stayed in the ‘mothers’ room for another 10 days…every few hours walking back down that corridor, those efficient footsteps to keep me company. But the green was nice…

The day I had to go home was horrific. I tried every delay tactic in the book, but the nurses were wise…and the green was ok too.
Just get me in the car & drive as fast as you can I told my husband. Get me away from here or I just know we will stop at traffic lights & I will run back to the Unit as fast as I can.
What will people say? I would think what a cruel mother, fancy just leaving your child. I cried the entire way home. When I got home, it wasn’t home anymore. It wasn’t the safe place full of hope & expectation. It was lonely, it was empty.
I sat in the Apple green Nursery with the Winnie the Pooh Stickers…they weren’t nice.
I wanted to go home… to the Unit.

I phoned every 2 hours through the night. I tried to think if I can be with her in some way, maybe I can attach to this damn breast pump. They very least I can do for my girl is feed her. At first I had enough to feed an army but there is not the maternal bond I had read about, with a machine. I felt like Daisy the Cow being ‘milked’. It was not attractive. Before long I had to make decisions about the possibility of using donor breast milk.
I was grateful to a mum who had been on NNU before, she reminded me that I drink milk from a completely different species, what was the harm in donor milk? The harm was that I already felt a failure. I couldn’t even finish my pregnancy. I was a lightweight, and now I couldn’t provide for the most precious thing in my world.

I hated my husband. He could still go out, he still went to work, and he had his life before without having been so ill. I still needed the blood pressure drugs….but good news after 4 months Aimee was moving out of Intensive care to High dependency.
I was thrilled, elated and the green walls… were just green.

Aimee spent her time on CPAP and being ventilated for nearly 6 months. We talked to her Consultant about transplants…..was there a possibility? Aimee did weigh 4lbs now I bargained.
The answer was clear, ‘no where would we get organs so small’? I hadn’t thought of that. Her head was scanned daily. She had had bleeds into her brain & they had found cysts in her brain too, but her fontanel was closing & scans were harder to do. There is no point putting her through a scanner I objected, what will you do with the information once you have it? Is it worth ‘knocking her out for’? I won that battle.
But I wanted to wipe that smile off Winnie the Poohs’ smug face and wipe it over that vile green wall.

Month 7, the first time I was told, you know what Liz, Aimee will go home. I was elated even Tigger looked happy instead of a ‘drug induced craze’!

It was also the time I began to think about what had happened to me & my family. Why did Aimee have to struggle? It was then I called APEC for some answers.
I also realized that I didn’t hate my husband, we were just grieving for the pregnancy we had lost, for the birth that was out of our control and the fact we now had to trust complete strangers to look after Aimee as we would. He was also struggling deeply with the fact he nearly lost me too. We were grieving in different ways. This time for us had been a HUGE bereavement.

But our baby was coming home!

We rearranged our house in order to accommodate the Oxygen concentrator. We had a admin supply of oxygen cylinders, a month’s supply of drugs, and a nebuliser box. (I won that battle too.)But the cat had to go. On a home visit we realized Aimee was allergic, so the cat moved in with my mum.
A pile of ‘newborn’ pampers and tube of Bongela. My girl had teeth! I won’t tell you how she bit the consultant! She was also almost fully weaned when she came home at nearly nine months old.
I always feel that is such an irony. If I had been pregnant the same length of time Aimee had spent on the Unit, there wouldn’t have been half the problems we had had. (Possibly.)

The day we left to go home as a family is a precious memory.
The Doctors & nurses came to wave us off, we had become part of the furniture. I was even consulted what colour to redecorate the Unit!!!!

Aimee weighed 5lb 10oz. The local press came out to record it as did local TV.
......It was Mothers day. March 23rd 1998.

And the nursery????
It was re-decorated to the Pinkest, fluffiest room ever with Beatrix Potter characters.
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mouse
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PostSubject: Re: After A premature baby   Wed 25 Mar 2009, 9:14 pm

Wow Liz what a story. Thanks so much for posting it. You must be so strong to get through that journey & sounds like you were the best mum in the world - hope you no longer feel that you could/should have done any more for Aimee.
Now really understand why you feel so passionately about PE - if you can prevent even 1 women/family going through what you did it will be worth it.
xxx
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Liz Pidgley
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PostSubject: Re: After A premature baby   Thu 26 Mar 2009, 1:42 pm

Hi Mouse,

Thank you for your kind words. To Aimee now, Im an annoying mum who makes her do her chores & nags about brushed teeth!
To me - Im no different from yourself or any of the other ladies who post here, we all got ensnared with PE in one way or another.

As for the PE - I have made the peace with myself.
That was what my journey was about - not giving myself the tools with which I beat myself!

But Im still furious with PE. It is a sneaky indiscriminate thief & I will do all I can to lessen its impact on other mums & their families. This forum & my work with PE is, and always will be, my way of getting even with the condition but ultimately, in the hope that others can find their own peace with it too.

Warm wishes
Liz

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Every Woman is entitled to understand what happened in her pregnancy when pre eclampsia strikes. I hope to be able to support that process.
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alka
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PostSubject: Re: After A premature baby   Fri 27 Mar 2009, 10:17 am

Hi Liz

I've just read your story with tears streaming down my face. Thank you for being so incredibly honest and frank about your experience. I can only relate slightly to the feelings and emotions you felt and I had versions of my own but my situation was never nearly as bad as yours or your little Aimee. The one thing I can relate to however is the anger i've felt for PE ever since, for robbing me over my "perfect birth". I know I need to make peace with that at some point and I do think I'm getting there, slowly. I just have to look at my little Jake to realise that all that matters is that he is here and so am I.

I just wanted to say I think you're an amazing person Liz, to dedicate time to us all like you do, I am sure you have inspired many of us and I don't doubt for a second that you have saved lives with the advice and help you've given over the years. This forum has been there for me when I had no where else to turn, and sadly unless you've experienced PE, it's hard to find people that understand. Yes people can listen to you and be sympathetic, but no one really knows what it's like unless you've been through it.

Thank you Liz, and to all the ladies here that share their stories. What a brave bunch we are.

(Feel like I should be telling everyone to raise their glasses now for a toast lol! )

Have a lovely weekend ladies. x
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ingrid
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PostSubject: Re: After A premature baby   Fri 27 Mar 2009, 1:09 pm

Hi Liz

Thanks for sharing your story, its something we will always remember and it will never go away.

We could write all our stories into a book stories from Mothers, Grandmothers and even Dads other people could read and hopefully learn because I think reading other peoples experiences is more realistic and it could highlight the signs of PE.

Just a thought

Ingrid xx
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MrsCav
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PostSubject: Re: After A premature baby   Fri 27 Mar 2009, 2:55 pm

I think that is a really good idea i would have bought a book that had people's experiences of special care as most people who spend a long time there need something to read i know i did to keep your mind occupied.
It would also be very useful the know that it's not just you having these feelings.

A great idea ingrid.
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PostSubject: Re: After A premature baby   Fri 27 Mar 2009, 3:27 pm

Mrs Cav

Wow you are now overdue, I hope all is well with you, fingers crossed all goes well looking forward to hearing your good news soon

Take Care

Ingrid x
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