#misCOURAGE story, 02/03/2017, by Betty
Our first child was born in 2010.
I had no reason than to believe as a youngish, fittish, healthyish mother with no familial histories of problems that I would stop birth control, we would fall pregnant and then after an uncomplicated pregnancy, our only worry would be to try and keep a cap on the smugness of being privileged first time parents.
So much so that I would reason with any markers that might suggest things maybe weren't going this way and chose to believe in my aspirations as opposed to the actual facts. Plus, it was our first pregnancy, I had nothing to compare it to.
And turning to the internet for advice on any niggles, I was always happy to seek solace in the "oh I had that and everything was absolutely fine!" I really wish I could be that person now.
At 20 weeks, we knew we didn't want to find out the gender, and I was so confident I went for the scan alone. All seemed okay, although the growth wasn't marvellous and my fluid levels were on the low side.
But all I heard was 'come back at 30 weeks for a growth scan' and bounced out with my scan pictures.
In the meantime, we moved house from London to Manchester, so most thoughts were consumed by that.
With hindsight my bump was ridiculously small: "but you're tall" "I had a friend who carried like that". That's all I needed to hear and I carried on.
Also with that magical hindsight, I now realise the movements weren't very strong, and I had a lot of odd symptoms of pubic pain that were different to what I now know is pelvic girdle pain. But I'd self diagnosed with Google so, you'll notice a theme here, in my mind, all was okay.
Soon we were at the growth scan. Prior to the scan I met with the consultant and she struggled to hide her shock at the very neat bump I had.
The moment I felt the metallic taste of fear in my mouth was when they turned the screen away from me during the scan.
There was that strange voiced badly hidden concern, and we were told to wait outside for the consultant again. Our scans needed reviewed.
But I'd seen a heartbeat, I'd seen a baby. Things were still going to be okay.
After an interminable wait we were told I'd need some monitoring: there was very little fluid left round the baby, and I'd be given a steroid injection 'just in case' there needed to be an early delivery.
4 days later I had an emergency c-section and our baby boy was delivered Just In Time, the words of the surgeon ringing in my head. That and, yes, we had a boy.
Rufus was small - suffering from IUGR he was just 2lbs 10oz. He was incredibly poorly. And he didn't look or act like other babies. A whirlwind of genetic testing began, whilst we sat tear streaked at the side of his incubator amazed at his beauty and fragility.
He spent four months in total as a neonate. At 8 weeks they diagnosed his kidney condition- congenital nephrotic syndrome. With his other complications, in particular, being unable to tolerate feeds, he wasn't expected to grow or thrive enough to survive the complications of his kidney disease.
We were told he was unlikely to make it home.
But he did come home. And it was incredibly difficult as the medical aspects (tube feeding predominantly) settled in, the realisation that he wasn't developing was at the forefront.
At one we knew things weren't right, and by two we knew we were looking at lifelong disabilities. But he was alive, and he was developing in his own way. And ultimately, as he grew he became happier and relaxed, growing his own full personality.
Also, by two, his very unexpected sister had arrived. My pregnancy with her was again, with that glorious hindsight, a breeze. But it certainly didn't feel cooling or pleasant.
At her 20 week scan there was a concern over her kidneys, and a amniocentesis performed, with a signed document handed over allowing for a post 24 week termination if it showed that she may have similar problems.
But my husband and I knew, that no, she was staying whatever the results. We just wanted to be forewarned so as to be forearmed.
She was successfully induced, and I had a VBAC at 36 weeks, and our 6lb 9oz red bundle of tyranny joined our family and transformed us all for the better.
In fact, for the following three years, we had a 'purple patch'. Rufus continued to astound expectations, we poured our love and soul into Dulcie and him.
Things were, dare I say it, normal. Or our normal. His kidneys continued to defy all prognosis.
In 2015, we moved house again, renovated, and looked at that extra bedroom longingly. It was time, we thought. Another go.
At this stage, I was completely naïve to miscarriage, and yet, falling pregnant, I couldn't shift the unease I felt. I don't know what it was, but I had no sense of surety the whole time. Even seeing a bouncing, healthy baby at 12 weeks couldn't scratch at the feeling.
From somewhere, a mantra floated in my head; "one in, one out." But I silenced it, I didn't really tell anyone, as frankly it was a little crazy.
This time I went to my 20 week scan with my Dad as we were juggling children, work and study. I was ushered in quickly, so quickly that in the time it took him to park the car, I had discovered the baby was dead.
He just came in to find me in pieces as I struggled to understand, and I asked them to scan again. The baby had died around 16 weeks. I couldn't possibly understand how I'd had no idea.
Well, maybe not having really felt movements, but with two young children and working I barely had time to wee let alone spend time thinking.
I also was utterly terrified of the next stage. Thankfully, our local hospital were incredible with us. And I took all the drugs.
But they treated the birth as any other, and we got to spend time with our minute baby. We called her Tiny Dancer, and left the hospital feeling that yes, the mantra had been right of sorts, but it was sadly just one of those terrible, terrible things.
We went home and held our children tight and felt blessed for their very presence. We would be okay.
Two months later, we found out we were pregnant again, but sadly discovered another missed miscarriage at our 12 week scan. This time my body did deliver of its own accord.
I actually found that at the time the harder loss. It was faceless and nameless, and signalled a real loss of hope. Plus the physical aspect was hard and long.
Blood results were also coming in for Rufus that were signalling change. When you spend day in and out with your child the differences can be easily missed, but by March 2016, he looked exhausted and pale and itchy. He needed to start dialysis, and I made the decision to take time out and began a sabbatical from work, as I was most likely to be a matched donor.
Also, I had the thought that if things didn't go to plan, and they very rarely did with him, that this would be an opportunity to really focus on being together as a family.
10 weeks into dialysis, and we knew that things were not going well. He had had two haemodialysis lines that had been removed due to life threatening infections. We sat, as parents, and spent three weeks trying to weigh up quality over quantity of life.
In the end, his happiness was more important. Rufus was unable to articulate his views, as he was non verbal, but he could articulate his utter joy and happiness at the long, demedicalised summer we spent together. Writing him his own bucket list, and spending every moment in his element.
We were told he only had weeks, but in fact he gave us months. Months of long days, laughter and love.
On September 5th, he passed away in our arms at the hospice. He'd only shown real signs of weakness in his final week. He'd given his everything, and we knew that it was absolutely right for him.
This point in our story is where it gets particularly Soap Opera Esque. Or a bit Guided by Voices. Neither of us are spiritual or religious but this is definitely testing my mettle.
I had it at the back of my head that my period was due on the 5th September, as we had booked a last minute holiday to Centre Parcs with Rufus given that he'd been doing so well. I'd been mentally packing, and had thought, 'I must remember to take stuff'.
Dulcie came and said to me "Mummy, you've got a baby in your tummy." Which, you could say was preschool for 'you look fat'. But to put it out of our minds, we went for a little walk and bought the test in secret. Within seconds of taking it, two very definite lines appeared.
Our heads swam, the shock too overwhelming to compute. I spoke to the hospice doctor, who contacted my gynaecologist at the hospital, an appointment was arranged, and we went back to trying to push that away and focus on all the arrangements that needed to be made for Rufus, as well as get the tiniest grasp on our grief.
That was September last year, and as I sit here typing, our 27 week old foetus continues to kick and spin.
I don't know how to separate all the emotions. I live in perpetual fear that something could, and will go wrong.
Because I feel like I know that more than things going well. That sometimes, horrible things happen, and they keep happening, and there's no way to adjust your sails. You just have to keep trying to find that way upright and forward.
I often find myself quite adrift of other experience, and yet I still count myself lucky. I was lucky to have had and loved Rufus, and have felt that true, pure love of his.
I am lucky to have Dulcie who pulls us through everyday as she develops enough personality and resilience for ten (I am allowed to be this biased I reckon!).
And of course, so far I am lucky to still be pregnant. And am simultaneously distant from it to cope, but with the little breakthroughs of calm and excitement that getting to 27 weeks bring.
I have also documented a lot of background behind this on my blog www.areyoukiddingney.com
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