Wednesday 13 August 2014

Where have you been?

I last left you when I was looking like this.

We'd had our first day of proper sunshine, in March and it was a wonderful Sunday, just me and the boys.  I had a lovely post that I was going to put up, but I never got around to it.

But then…to quote Harry Potter "Bed empty, car gone, no note….you could have died"….

Well, actually, I did nearly die. *woah there Ali, tone down the dramatics*  
Puns aside, my family and I have been through a rather full few months.  That evening I started bleeding and then my waters broke.  Three days after that sunny Sunday I gave birth, at 29 weeks, to little Rupert.

When I say little I mean little.  He was a dot at 3lbs exactly.  The doctors whisked him off and put him straight in a plastic bag to keep him warm.  (It might have been the gas and air but I found it absolutely hilarious that they were going to put my newborn into a sandwich bag.)  The little fighter even managed a tiny little cry, letting us know he was ok….

…and then he was gone, with the doctors, down the hall to the neonatal department.
The room, that had been noisy with machines, doctors and midwives was silent.  Just me, my husband and my father. 


It's not how I imagined my pregnancy to turn out.  I was meant to be having a May baby….possibly June if he'd kept me waiting, but here I was in mid March, going through something I never have expected.  I'd failed at doing the one thing my body should know what to do…I couldn't keep him safe.

I was set to work, expressing, straight away.  Over the next few days I started getting a really good supply.  After being discharged and returning home I would go in first thing, to be with little Roo, express, spend time watching him and then come home.  Expressing was my life.

About a week in Tom and I decided that the boys would go to Grandma's, I'd stay home for one day and he'd go in to see Rupert.

The day that I "stopped", I came down with a terrible fever.  40 degrees with terrible shakes, burning sweats and my goodness, it was utter hell.  I kept expressing, every 3 hours, without fail…even though I was told to dump what I got..I had to keep my supply going for Rupert.

I went to the doctor who told me that everything was fine.  It was probably just viral so it'd get better.

Oh boy, was he wrong!

The week after, I'd had enough.  I couldn't cope any longer.  I wasn't sleeping, was severely dehydrated, dizzy and could barely stand, anymore.

My mum took me to my local A&E.  I remember the triage nurse taking my temperature and saying it was something like 38.4.  I smiled and said "Oh, that's really good then." (meaning that it had come down.)  She looked at me in horror and said "No….no, it's really not."  …….oh….

They did the usual.  Took bloods and cultures; gave me fluids; did an ECG etc.  I ended up on the maternity ward for a while, as they thought I might have a womb infection.  It was hell, listening to all of these other ladies who had their babies with them.  Why couldn't I have my baby with me?

I don't actually remember anything else….
I woke up 3.5 weeks later, and it took another week for me to understand what had happened to me.

Pretty much anything that could have gone wrong did go wrong.

It turns out that I'd had double pneumonia.  It got so bad that one of my consultants in the ICU was trying to get me a place in Papworth hospital to go on an ECMO machine.  An ECMO machine is a bit like dialysis but for your lungs (although whilst we're at it I also ended up on regular dialysis…that's just how I roll.)  It takes 90% of the blood out of your body and oxygenates it, leaving your poor, battered lungs to heal without having to do something so pesky as, I don't know, breathe for you.  The problem was that they had to wait for me to get bad enough to warrant the ECMO (of which there are only a handful in the whole of the UK).  Until then they just had to wait, and just try to help me to breathe.  It was the same day that the consultant came to my family and told them that it was happening.  I was whisked away, already on the ECMO machine, in the ambulance with a 4 car entourage behind me.

3.5 weeks I was sedated.  I can't imagine what it was like for my family.  My chest wasn't "breathing" and there were big hose pipes going in and coming out of my body, with my blood.  At one point I put on 22kg of water weight because my kidneys struggled.  (That's not far under half of my current body weight.)

I was brought back from sedation in Papworth and then moved back to West Suffolk.  I don't remember a thing until about a week later.

The dreams I'd had………….I never want to repeat them again as they were utterly terrifying but flipping heck, the things I'd "been" through.  I wouldn't wish those "memories" on my worst enemy.  They were so real.  I woke up and decided that I must have gone utterly crazy and ended up in an asylum because of everything that had gone on in my dreams.  It took a while to realise that I hadn't left one or the other hospitals.

Everything seemed to be going really well.  I was being able to use less and less oxygen and could start moving my limbs slightly. (When I woke up I couldn't move anything my self.  It was such an odd feeling.)  Seeing my family was incredible.  My husband, parents, brother and sister….just incredible.  I longed to see the boys but they weren't allowed in, unfortunately.  Rupert was wheeled in from neonatal though, and I got to see how big he'd gotten whilst I was out.  

When I was deemed "too well" for the ICU I was moved to the Cardio ward.  They'd noticed a problem with my heart muscle but I no longer needed the intensive care, so off I was wheeled.

The next day was horrible.  I couldn't breathe……my breath was fast and short and I couldn't slow it down.  Everyone just kept telling me that I was panicking and that I needed to calm down.  No matter how many times I tried to explain that it wasn't me, no one "believed" me.  My O2 levels were absolutely fine, therefore it HAD to be anxiety causing it.  I had waves of consultants from probably every department come in to see me.  After the mental health doctor came and told them that it wasn't mental they were lost.  They had no idea what was wrong with me, but there was obviously something.  The day ended with me going in and out of consciousness.  I remember it being very quiet and then about a million people rushing in, poking me with needles and talking in very worried tones.  I was intubated and then put to sleep.  

It was this point where my family were told to say goodbye.  That it was unlikely that I'd make it through the night.  I'd nearly died twice before then, nearer the beginning, but this was said with a sense of finality.  My liver had completely shut down and my body was being poisoned.  My blood acidity level was through the roof.

Somehow, I came back.  Dialysis took enough of the toxins out of my body for me to start to stabilise. (I'll never say I'm not a fighter, again.)  I was taken back to Papworth, where I woke up.

A few days later (yes, sorry….there's still more to come) from a CT scan I was told that my Gallbladder looked enlarged and so was sent to Addenbrookes to see if it needed to be taken out.  Thankfully after getting there I was told that it was probably ok to leave it in and to just take more antibiotics.  I was moved to the heart ward and there I stayed for a couple of weeks before being allowed HOME!

…well, not home but to my dads, where Tom and the kids had been staying. (Rupert made it home before me, the cheeky sod.)

It's been an incredibly long journey but finally we are back home, with the dogs and a rather crazy new kitten.  Rupert is growing and I'm getting better, despite the cardiomyopathy.  

I know it's a cliche but it's really shown us what's important in life.  We always knew it was family, but now it just seems that bit more important.  We almost lost it, so it feels more special.

Without the help of some very close family and friends I don't know where we'd be.  The doctors could heal my body, but without each other I think we'd all be sectioned by now…

….well…that was a bit of an essay, wasn't it?  If you made it this far then well done, have a cookie and a picture of little Rupert bear at 5 months old….and Hugo in a sombrero….(because who doesn't love a sombrero?)



  1. Oh my goodness Ali, I'm in tears. What a terribly traumatic time for you and your family. So glad both you and gorgeous Rupert made it out of hospital and are recovering well. You really are a fighter! xxx

  2. I've been following your updates Ali. I didn't want to barge in and suffocate you with the questions everyone must have asked. But I was so worried about my friend. This has made me so proud of you and made me feel so lucky that you are still here with us and your boys. xxx

  3. Oh Dear! I was so happy to see a post of yours yet unprepared to note the reason for your prolonged absence! I am so so sorry to hear all you (and your little family) went through!
    Welcome Rupert and what a tenacious Mum you have! She made it through because she knew deep down how much you all needed her!
    Keeping all of you in thoughts and prayers! Hugs to the dogs! You were all missed!
    God bless,

  4. Oh my gosh, what a story. I can't believe you went through all that, three and half weeks!!! You are one brave and incredible mama....glad you are okay now and little Rupert is gorgeous xxx


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