Wednesday, 30 January 2013

Through the Keyhole: Hope Fades

It's been a long and painful two weeks since we first found out about the problems with our little bean. I have been trying to write it down for the last few days and it's hard. Hard because it's now all a blur. Hard because we are coming to terms with our loss; grieving and starting the process of moving on. However I find it cathartic to write about it and I hope that in some way writing this down will not only help me deal with what's happened but also other people who may be going through the same thing. I certainly found some solace in the writing and experience of the wonderfully supportive and caring Corinne of the fantastic blog Motherhood Journeys. There's too much for one post so what follows are three separate posts following our journey on three particularly difficult days.

Hope Fades
Wednesday 23rd January 2013

Sitting in a waiting room full of happy, expectant people. The hubbub of excited chatter and intimate whispers. Couples waiting; hand in hand, hand on belly, head on shoulder, arms intertwined. Of course some of them might be like us, waiting nervously, a nugget of fear lodged in the pit of their stomach, but if they are I can't see them, I am too preoccupied by my own fear.

My fingers drum a rhythmic pattern on the arm of my chair and my stomach clenches tightly. I glance at the clock. 

Tick tock.

That was on Wednesday. We went back to the hospital for our third scan, the one that would tell us whether our 14 week pregnancy had a future, whether the baby inside me had any chance to grow and thrive into a kicking, giggling little being on the outside.

Earlier in the day we had a telephone call from the lovely Midwife we had seen the previous week during our consultation with the Fetal Medical Consultant. She was able to give us the initial results of the CVS test. Alongside our first trimester blood and nuchal scan results they showed that there was no chromosomal abnormalities with the baby and that we were very low risk for Downs Syndrome. Of course the full results are yet to come back, it takes up to three weeks, but it is likely that they too will show no chromosomal abnormalities. So before we went in we knew that if the bladder of our baby was still enlarged then it was likely to be a structural development problem. Which in some ways made it all that much harder... we knew that decisions would have to be made. Before going into that room we were still clinging on to that tiny glimmer of hope that the bladder had drained and we would be seeing a normal healthy baby on the screen.

As I did at the last scan I ask for the screen to remain off, it would break my heart to see the baby with that huge black hole again. As I lay back on the bed the Consultant gently squeezed my leg as if to say "it's okay, I understand what you are going through, I know this is hard." It was a small but significantly caring and important gesture. It may have been only a moment of human warmth and contact from a stranger, but the tiniest things mean so much in these fraught and emotional situations.

Silence. One hand rests on my eyes to block out the room, the other is curled up in Mr B's hand. 

Another clock. Tick tock. The cold gel and the hard, smooth probe pressing into my stomach.

A gentle voice says "the bladder is massive."

The words weren't a surprise. I didn't react, I felt dumb, numb. Then we sat in the bright light of the room talking about what to do. In just 10 days the bladder had gone from 15mm to 32mm and was starting to form a keyhole shape. As yet everything else seemed to be functioning normally but the very soon the kidneys, lungs and heart would all sustain damage from the pressure of the grossly enlarged bladder and the flow back of urine into the baby. My amniotic fluid would decrease slowly but surely. The Consultant was very calmly and sympathetically took us through our options:

Just wait and see, come back for your 18-20 week scan and see what course nature takes.

Drain the bladder and come back in a few days to see whether that has solved the problem. Then follow if needed with vesicoamniotic shunt for our baby to keep the bladder from filling and to keep the amniotic fluid from reducing. 

End the pregnancy now.

Sitting here looking at those options in writing it's easy to think well let's go with the first one. There's always hope right? Maybe there is but what hope? Even if there is the tiniest hope what greater things are you sacrificing for that tiniest slither? After giving us these options the Consultant went on to explain the scan; the bladder shape and rate of increase in size - the baby had severe fetal megacystis. 

We asked a lot of questions about each option. A lot of questions. It started to become clear what he thought, but at no point did he push us to make a decision in any direction, I always felt like this was our decision and ours alone. He told us that from the scan it was probable that the urethra of the baby was blocked by a valve not developing and draining the bladder would only lead to a temporary fix. Sometimes draining works if the valve is a bit weak and it just needs a nudge to get it functioning properly, but in those cases the bladder doesn't fill up as fast as early in the pregnancy or become as huge as that in our baby. Draining the bladder would be highly invasive to both me and the baby, it also carried a risk of miscarriage and in all likelihood would need to be followed by a shunt. He said that taking into account the size of the bladder we would probably be in the same situation in a couple of weeks but with a more developed baby, a baby that would be by then showing significant signs of other problems caused by the build up of urine in the bladder; pressure on the heart, lungs and kidneys.  

We decided there and then that we had to let go of this baby. It was clear that even if it did survive, there was no chance it would be without very severe complications. I am sure there are people who will read our story and wonder why we didn't just keep going and see what happened. But the thought of having to go through this at 20 weeks plus is untenable, or to have a baby with very serious complications who probably will be born very premature and wouldn't survive past the first few weeks or be on dialysis or need a heart or kidney transplant in the first year doesn't bear thinking about. Who would we doing it for, us or the baby? 

And then there's Leelah to think of, darling beautiful Leelah who is so young and needs her mama and papa. We have a healthy and vivacious one year girl old who fills us with joy and we had to think about her as well. The last two weeks had been hard, we were exhausted from all the waiting. It all seemed so emotionless at the time, neither of us cried, we seemed calm. I remember thinking "I should be bawling my eyes out, what's wrong with me?" Looking back now I realise we were just in shock, numb not emotionless. Just lost.

The Consultant was incredibly reassuring and told us that we were just very unlucky and that they only see this purely structural problem with the urinary system two or three times a year (as opposed to issues associated with chromosomal issues such as Down's, Edward's and Patau's Syndromes). The we were back in the little room again.

Tick tock

Door opens. Laughing, smiling couple walk by clutching their scan pictures, cooing over their perfect baby. Thoughts dance unbidden through my mind. "Why us not them?"  

Forms to sign. Termination. Such a final word.

Tick tock.

This time we left wordlessly through the back door. The next day I would return to take the pill that would stop the pregnancy.

Friday, 18 January 2013

Snow in Happy Lane

After yesterday's sadness today was a better day. Why? Just because.

Oh and it snowed.

Those of us in Bristol and the surrounding area finally woke up to this cold, soft, wet white stuff falling out of the sky. I think it's called snow, at least that's what the people on the NEWS are calling it and on that programme the BBC cobbled together tonight they called it snow too, so I guess it must be true.

You always know when it's snowed, even before you open the curtains. The light filtering through the chink in the curtains is brighter. And there's hardly a sound. Just muffled faraway noises. Everything seems at peace. And then after a while you hear the children laughing. Such a wonderful sound to wake up to. Distant laughter coming from the rows of back gardens all around us. I still start with excitement and sigh with delight at the beauty of the fresh, white world outside my window after the first snow fall of the winter.

When the snow comes I love how (most) people release their inner child and just have fun. Adults throw snow balls at each other in the street. Roads and pavements become honorary members of the playground. Kitchen trays become sledges. Snow people and snow animals morph seamlessly out of the ground. Neighbours work together to make igloos in the park, which their kids then take no interest in whatsoever.

This year of course it was Leelah's first experience of snow and I think she enjoyed it. I know we've all seen plenty of snow pictures today but your child's first snow is another one of those happy moments to treasure. So to add to the glut of wintry, white photos already online, here are my highlights of today's snowy adventures.

There's a serious side to the effects of the cold weather too. Remember to check up on elderly neighbours and relatives and of course there are people who don't have a roof over their heads so spare a thought, hot drink or blanket for them. Maybe even give a bit of money or time to local charities that help homeless people. I've donated a little food and money to Bristol Soup Run Trust this year. I know it doesn't solve the root of the problems, we need to pressure government for that so that less and less people are in a situation where they need the help of such charities. Another blog post for another day I think.

For now I'm going to enjoy the snow, whether it's building a snow person or curling up on the sofa with a nice hot cuppa.

Thursday, 17 January 2013

The Black Hole

'You can't always get what you want. Life's a bitch, life is sweet, life is life.'

A simple quote from my husband that pretty much sums up the last few days for us. I told you that this blog would go up and down and round and round.

Two months ago we found out I was four weeks pregnant. Hoorah! That was quicker than we expected, a July baby, a younger sibling for Leelah to boss around at her mercy. But of course in those first months there also lingers a doubt, the spectre of miscarriage, of hope dashed. We'd been there a year or so before Leelah; a missed miscarriage was revealed by an emergency scan at week 11 and showed that the fetus had never reached week 8, there was no baby but my body carried on thinking there was for several weeks. As if given permission to let go I miscarried naturally that night and we grieved, we talked, we moved on. Such is life.

And so here we are. Our 12 week dating scan was on Monday just gone. Of course we hoped we'd come back from the hospital jumping with joy, clutching images of a healthy baby bouncing around in my womb. We had started to look forward to sharing that grainy black and white image with our friends, family and anyone who was polite enough to feign interest. After all we'd got to 12 weeks and I felt great, no signs of anything amiss.

And then there was the black hole. 

Our relief and joy at seeing the tiny waving being on the screen soon subsided into silent angst. Our tiny little one had a huge black abyss in its belly, too big for something as wee as this little mite. A 'grossly enlarged bladder' we were told by the very lovely Sonographer. 'We'll need to book you in to come back this week for a re-scan and some tests.' Then we got led into the little room. Every ante-natal clinic has 'a little room' and you know when they lead you in there it ain't good news.

No one told us much on Monday, they couldn't really say much until my blood tests and the nuchal scan results had come back. All we knew was that the enlarged bladder could mean one of three things; a chromosomal disorder, a structural development problem or just that the little tyke hadn't done a wee just yet and its plumbing hadn't kicked in efficiently. 

There was hope. 

We prepared for the worst but hoped for the best. That's what I do and it works for me. I am a pragmatist but I am also emotionally open. I talk, I share. I might seem flippant but I'm not, I just don't bottle things up. Ever.

And so today. I felt sick, couldn't eat. Too much work to do. Emotions all over the place. Just getting on with stuff as you do. Both of us working, working. 

Back to the hospital this afternoon. This time to see a Fetal Medicine Consultant. He was very nice, calm, sympathetic but practical. He ran through the possibilities with us and told us our risk of Downs was almost negligible but there were other chromosomal disorders that may be causing an enlarged bladder. And so to the scan. Both Mr B and I were still clinging on to a very real hope. I asked for the screen to be turned off and closed my eyes in the dim light of the room.

A gentle voice... 'I will continue the scan but I can tell you that the bladder has got larger.'


As the lights came back on I wiped off the gel and sat up slowly, a couple of tears rolled down my cheeks. That small ray of hope was fading into a dim flicker.

And then the reality and the practicalities kick in. Fast. Within minutes I was on the bed again, this time in bright light. I had a CVS test, which will reveal any genetic abnormalities. I think this was worse for Mr B as he watched the long needle penetrate my abdomen and sucking up bits of my placenta. I just felt numb, physically and emotionally - my brain finding some quiet place to process what was happening.

So it doesn't look good for this little bean inside me. It's doubtful it will make it to the scan we have booked in next Wednesday by when we'll also know the results of the CSV. If by some miracle it does make it but the bladder is still enlarged then we have some difficult decisions ahead. 

But that is for another day.

I don't know how I feel right now. All I know is that coming back home and seeing my beautiful daughter look up at me, with her cheeky, toothy grin and listening to her babble away to me in her soft cooing voice, makes my heart soar.

And for her, my husband and the good things in life I am thankful.

Wednesday, 16 January 2013

About time too!

I've been threatening this for a long time. It's just what the world needs isn't it? Another blog.

It's only taken me a year of procrastination and fannying about to get this far, to put my fingers to keys and tap tappety tap some words for someone out there to read and maybe comment on. Or maybe it's just for me to whizz out the sometimes chaotic content of my grey matter so that I can empty out this old head of mine. 

A picture selected for no good reason other than I like it
So what am I going to write? Well I had this idea of being all PR and organised and launching the blog with a slick design and tabs and all that shit. In the end I just thought to myself: 'Just get on with it woman and write SOMETHING. ANYTHING. Just start the damn thing and see what happens.' So that's what I am doing right now.

So let's see then. I won't be focusing on anything in particular but it's bound to reflect my life and experiences. That means that it will be all over the place; happy, sad, funny, mundane, reflective, self indulgent, silly, visual, ranty etc. I'd like it if eventually it was useful and informative, but let's not aim too high just yet eh!?

Inevitably there'll be some stuff about being a parent, but there'll also be stuff about getting out of the house and seeing bands (fuck yeh!). Oh and I might swear, so easily offended types look away now as I won't be using ###s. 

Best of all (for those of you already in the know) I will be keeping you up to date with #NappingBrother so look out for further instalments.

For now I will leave you with this list of 10 great songs that I love. #10 Songs will definitely be a regular blog post and I'd love you to share yours with me too. 

Spotify them, You Tube them or find them however you wish. Listen and enjoy:
Sergio Mendes - Cristal Illusions
MGMT – Time To Pretend
Ween – Japanese Cowboy & Buenos Tardes Amigos
Lou Reed – Satellite Of Love
Beach Boys – God Only Knows
Aaron Neville – Hercules
Ryan Adams – New York

The Primitives - Through the Flowers
Jon Spencer Blues Explosion - Bell Bottom
De La Soul - Ring, Ring, Ring