12 weeks outside

I find it very hard to think "biology textbook" about baby development now. Instead of all the 'your baby is now the size of a small-but-perfectly-formed-semi-ripe-mango business all I can see and think is what I saw in special care. As well as being truly terrifying, it is a privilege to see what would be a foetus, but now a genuine baby, grow.

From 27+6 weeks, I saw my daughter develop. Not entirely naturally: for the first near two weeks she had machines to help her breathe (ventilator then CPAP) and from 31 weeks she started requiring oxygen again so had two enormous sticking plasters on her cheeks to ensure the nasal cannulas stayed on. She also had a feeding tube, right up until the very tail end of week 36, in time for home at 37 weeks (well 36+6 just to be clever). 

At birth she weighed 1090g (2lb 6oz) and at term she weighed 2385kg (5lb 4oz). By full term on her due date, she weighed a very respectable 3.3kg (7lb 5oz). 

I can only remember that period of development in emotion now. In grief, regret, tears and heartbreak. And shock, pure shock like a thick blanket. No precious kicks, no scan photographs, no lingering over first purchases of baby grows. No decorating the nursery, no showing off a growing bump, no excitement of choosing names. All that was done in a very intense and stressful situation instead, in a clinical environment with doctors, nurses, physiotherapists and beeps, always the beeps.

Our milestones were suddenly very different. Ventilators, IV fluids, antibiotics, diuretics, vitamins, caffeine, oxygen, feeding tubes, phototherapy, hot cots. And cuddles and cares. Snatched minutes of the day allowed to touch and interact with your child. The bliss of having them close, of your lips and hot breath tickling their fragile thin skin, breathing them in deeply to remember until the next 23 hours later...
 

Counselling

When you have a baby, one thing you do not normally associate is starting counselling sessions soon afterwards that are in direct correlation to these events. Then again, for too many parents "normality" is thrown out the window. When you have a sick or premature baby or a traumatic birth, the rule book is ripped from your hands and it seems someone is laughing cruelly. You have all the same tools as everyone else but something is missing that you cannot quite grasp. I imagine even the healthiest baby, smoothest birth and both fleeting of baby blues produces a confused, knackered, upset and bewildered parent. But tweak some factors a little more and it can feel like you are walking between nightmares and the best thing in the world. You know you are blessed, are grateful beyond belief, can tangibly reach true love...but that is only one half of it. And that fact casts you even deeper down a path of gloom, grief or blame. Sometimes all three.

I was first referred for counselling whilst Wriggles was still on the NICU. We were beginning to be on the home straight which adversely became the patch I began to fall apart. I could not fathom being able to care for my baby at home in the way the hospital did. I got nervous. I got emotional. I cried.  lot. When I was trained in resuscitation and infant first aid, I broke down completely because it was too close to home to the CPR I'd had to try on my minutes-old daughter before the paramedics arrived. Then it was confirmed we would go home on oxygen. The sky fell in. Any notion of being able to turn our backs on prematurity, run for the hills or grasp in the dark for any kind of normal baby-magazine like existence was snatched and I was going to the dragged kicking and screaming into the acceptance.

Initially, I was not overjoyed about being counselled. It seemed like another thing to chalk up to failure. You can't even just have a baby? What sort of a mother are you? That first session I was very mechanical. I had got to the point of facts, just facts. Name. Age. Date of birth. Feelings? No, feelings are tied away. Locked away and thrown the key into the abyss. I don't recall a lot, but I do recall the kind lady saying with clarity at the end "you need to allow yourself to feel."

But I couldn't. I would have the odd breakthrough crying sessions, I would tell our story, I would go through the motions, but it was like there was a solid wall. I was talking but there was nothing behind the words. I would not let how I felt about what I was saying out. It was too dangerous. There was a torrent of emotion somewhere that could quite possibly destroy me. Then after we got home, my daughter got sick and then we came home again, I went downhill very fast. It was like a swift plummet, being winded in the gut. I did ask for help then because the only glimmer of rationality left told me that if I didn't things could get ugly and I was the sole person responsible for my daughter and owed it to her.

I was even less overjoyed about the idea of taking medication. To have to be medicated for being a mother? Despite gentle professionals saying but a mother who has been to hell and back, it just didn't sink in. But I took them, thinking what had I to loose. To my surprise, they helped to dent the cloak I had surrounded myself in. They let in tiny chinks of light and slowly rescued some energy, some drive, some routine... Alongside this I also saw a very well meaning counsellor who patted my knee, passed the tissues and said "Oh goodness me, I couldn't have done that" a lot, and also thankfully stepped up sessions with my original counsellor who had importantly been with me the whole time. She has seen Wriggles at the point of being critically ill, in NICU, at home, playing-she had seen the highs, lows and mundane of our lives. And that went a long way, not least is gaining my trust. She had also had her own premature baby twenty years ago and didn't need telling twice about what followed. She listened to me, said some very wise things and never once told me I was a bad person.

Did she fix everything? No. Did she make things more bearable? Very much so. She embarked on a long quest to try and stop me blaming myself and inflecting blame, guilt, remorse and turning these things into long strings of anxiety and fear. She didn't put a full stop to it all, but she did greatly stem the tide and genuinely seemed to care that I wasn't putting myself in torturous circles. The day before Wriggles' second birthday, she turned up at my flat with a birthday present and card despite not seeing her for months. I was so touched that she remembered and cared enough when essentially we are but a handful of her clients. It is little things like that which slowly help pick back up the pieces and restore your sanity bit by tiny bit. Couselling may not be a magic answer or quick fix but it is a service I believe that all parents or family members in difficult situations should be entitled to as just reaching out can remove some of the bricks of your burden. Without it, I fear I would have fallen very low and very badly. I don't know how things would be now if I hadn't have had that chance.

I wish I could say that presented with the tools of good counselling, the caring arms of supportive friends and family and a good overview of CBT that I am completely all done with the past. But this little blog is testament that I am not. Nothing is that simple. Things may be a lot better but there is always one foot still in the past, stuck in a puddle of murky memories. And sometimes I slip and fall straight back in and need a helping hand in climbing back out. All too quickly, the tendrils of anxiety, paranoia and remembrance can curl round your being until you are caught fast in a trap of fact and fiction and have to unravel what is reaction and what is irrational. These last weeks I have been struggling again, feeling the fight ebb out of me. I guess the difference is that I know this isn't forever because things have improved before and will again; not that it makes things feel any easier day to day until we have ridden this out. The mind is a powerful tool indeed.

My Happy Place

Tiny no more

Recently I have been trying to do some sorting out. As happens when you have a small child, odd tiny socks and vests you never bought breed and end up EVERYWHERE. Today I found a wee bootie wedged behind the clothes horse and was momentarily caught stock still at it's size. It was so small. Yet it was easily that for a 3 month old child; needless to say it fitted mine up until around her first birthday. When I find these small items of clothing aimed at the first few months of life, I then have to further pinch myself to remember my baby was even smaller. Seriously small. At 1090g (just under 2lb 6oz), little bigger than my hands. Her eyes barely open, unable to breathe for herself and so frail. Her first picture a few hours after birth is a little shocking. I treasure it, but it is not a cute baby picture by any means. I love it because she is my baby but I can't quite imagine it on a board with other baby pictures of squashy newborns or even pictures later down the line of NICU.

When I find tiny things, I always have a pull to go back to our NICU memory box and find her first nappy, first dummy....so small, even for doll's clothing. I find it staggering to look at them and think that baby, my baby survived and thrived. That babies, some half her weight can too. I can't explain the pull to keep looking at these things, keep reminding myself. In many ways it is like poking at an open wound. God, it hurts when I think of the pain and suffering she has been through. The mental pain and suffering I and my family have been through. The scars we are left with.

I find myself afraid of forgetting, alongside paradoxically being desperate to move on. It has defined things for so long and is really my only experience of motherhood. For so long I wished we could have been one of the average statistics, the "normal", the tears-free, the one where you knew your baby would be there the next morning. Now two years down the line, we are in a little limbo. In part, it is oceans away. In part it is still with us every day in form of some problems or delays or memories. In a strange and not-entirely welcome way it has become my normal, which is what I think I am afraid of letting go of. Instead of doing all the things I expected to do as a mother, I did lots of hospital based things and seeked out people in similar situations for vital support. Now we are in a position to mix and match effectively, I find I often flounder. It feels disloyal, like we are turning our back on all we went through that made sure I had the daughter I have here today. Which is so silly; we all know children grow up, lives move on and people grow with change. Being able to do some "normal" things is homage to the doctors and nurses who fought alongside my special girl.

Sometimes prematurity, illness or additonal needs feels like a secret world, one you can only imagine until you suddenly have the key and being in that walled place is a thousand times more overwhelming and vivid. In some ways, life will never be the same again. "Prematurity is an experience no one really thinks about when they embark upon the adventure of parenthood. And it’s not one anyone wants. But once fate flings such a twist our way, we find ourselves part of the secret society we never asked to pledge." Finding tiny keepsakes feels like a mascot of this new club, a lifelong allegiance with a terrifying induction. It is less about clothes, or first dummies, just that these firsts are so different to the firsts we might have anticipated. But they are still firsts, to be cherished alongside the grievances. But it isn't easy. For the first year, I so wanted to forget. Now I can't bear the thought of forgetting.

Two Years On

Dear Me-Two-Years-Ago,

Hello, it's me from the future. I think you need some help; you're feeling very alone. You think you're grown up at 23 with a brand new surprise baby, albeit in an incubator and trying to Do The Right Thing. You will. But right now the weight of the world is on your shoulders, or at least of your world and that of the little girl in the neonatal unit. 

She's doing so well, isn't she? She's growing as she should be, she is breathing air by herself. But it's so hard to relax. So many ups and downs. Tomorrow afternoon you will try kangaroo care for the first time. I know it's scary, but it's the most special thing having the warm skin and the butterfly heartbeat placed against your bare skin. Try and enjoy the pure magic of it. Weeks down the line you will crave it, hang on to every second. I'm afraid in a few days she will start requiring oxygen again which she will not be able to manage without until she is 6 months old at home with you. Yes that's right, at home with you where she belongs. Your homes will change but one thing won't, and that is that by your side is her rightful place and it always will be.

I know you haven't come to that decision yet. Everything has been so sudden, so unexpected and so many factors are up in the air. You haven't yet sorted things with work. You haven't yet sorted things with her father. You are so far from sorting housing and finances. You have been told you have to wait until her 6 week head scan which is a few weeks off yet, to see if there has been any lasting brain damage or haemorrhages visible at this stage which may affect her development and if you feel you can manage if there is. Right now you are so badly trying to do right by her, you aren't letting yourself truly acknowledge how deep your feelings are. In the very near future you will realise that actually letting your heart rule over your head is not a black and white choice. Because sometimes your heart and head are in compliance, but it will take time for the fog of your shock to subside. Be kind to yourself, you are playing catch up in emotions what you would have otherwise had near 28 weeks to process internally. Love is the strongest of them all and will give you the power to achieve what else needs achieving. Don't be afraid to love and don't be afraid of the future. I'm not saying it will be easy, but once you have love on your side nothing is impossible. Fear isn't a failing.  Listen to people, but listen to your heart. No one else can tell you the truth but yourself. 

You're so worried about being able to provide for her if she is strong enough to pull through and come home. She will be; she may need some extra support which is a theme that will crop up again and again, but it is not as hard as it looks. You think that you ahve already failed her once so why wait to see if you do again: you haven't. 60,000 babies are born too small or sick each year in the UK. If you wouldn't call each of their mothers failures, why call yourself one? It was different, that was all. You're so concerned that you cannot give her what a richer or more traditional family set up could give her. If it helps, I'll show you a secret:

Does that look like a child lacking in joy? In curiosity? In happiness? In love? Children don't care about second-hand or third-hand, about whether the outing was free or cost money and any such prejudice is years off. You can cross that bridge when you come to it; I still haven't yet but I am less scared to now when it comes. But what you need is security and I'm telling you that you can and will provide that. It's so much more intricate than you think and yet so simple. This evening, that same little girl threw her arms around my neck and pulled herself into my lap presenting me with her favourite book. She snuggled into my neck at 8pm, sleepily. Every time I think that someone else may have had that privilege my heart nearly stops. Please let yourself feel, your breed of "rationality" is so far removed from your actual life that it will do you no good to torture yourself with your perceived shortcomings. You are a mother and that is enough. I could tell you all her favourite things, her quirks, her progress, about her funny faces, her noises, her likes, her dislikes, but I'll let you have that fun for yourself.

I can promise you will never ever regret it for a second. You may be tested again and again, you will know grief and sorrow and true fear but you will also know the greatest joys and the most wonderful feelings in the world.

With all my heart,

Me-Two-Years-On

xxx


A bit of background: in the days and weeks following Wriggles' surprise appearance I struggled with the idea that I could be any kind of a parent and provide for her and briefly looked to adoption or foster care, such was my conviction that I would never be able to give her the future I had once dreamt of giving my dream "first child". The further the process got, the clearer I began to actually feel things and realise exactly what I would miss out on, and how that dreams are just that: dreams. That we can create new and better dreams and try and find a route back to our old ones through a different path. And I am so glad I stopped trying to be so "rational" and realised that there is no such thing as perfection, except possibly your own child, who is thankfully only metres away from me asleep now!

Duck

Some days I am like a duck on water, (I was going to say swan but am nowhere near that graceful) on the surface serenely paddling along taking it all in my stride, quacking at appropriate moments, dabbling for leftovers...but on the underneath, frantically paddling to stay afloat and not sink however much I would like to drown in self pity and stick my head under and not come up again for a long long time. Today I am an upside down duck.

There is no particular reason, apart from throwing off a slight cold myself and taking care of a sick child, and carrying on with everything we do everyday in it's tube-feeding, physio-exercises, refluxing glory...oh yes actually, they look some very good particular reasons.

I AM ANGRY. VERY angry. Not at someone or anyone or anything. Just at the sheer bloody unfairness of some things. I know some people believe things happen for a reason. For better or worse, I am not one of the those people. How can suffering in any guise be for good?

Two years ago, my little girl was critically poorly in a plastic box, her little bird like body being pushed to it's physical limits to stay alive. I had held her once.

Two years later, she is lovely beyond belief, full of beans but still needing medical help in different forms to ensure day to day is comfortable and monitored so that things are not getting out of control. Medical science is amazing, I just wish we didn't need it. I am angry that somehow, she came to need it. That she needs tube feeding to protect her lungs, that she needs medicines to stop stomach acid damaging her oesophagus and airways. That she needs exercises to stop her legs, feet and hips from tightening and ceasing or delaying development further. Some days I am so TIRED of accepting and riding the wave of all this vital and gratefully received help and I just wish upon wish things were different.

That she would let herself eat. 

I am her MOTHER. Why can I not feed her in the way we take for granted? 

I want her to experience the delights, the sensory, the social aspects of eating. The pleasurable rituals we play out daily, the tingle, the sharp, the smooth textures, the range of tastes from surprising to comforting. The salivation that comes from it. The pathways our brains make from it. I want her to be able to go for tea with friends. To use food as a means for happiness not just necessity. 

Some days it pains me to keeping trying when she gets so agitated. 

Some days I am very angry that parents have to fight to be taken seriously. It has taken 2 years to finally get doctors to take her reflux seriously and to get to the point where she is 100% tube fed and will be for the foreseeable future. Because otherwise, her already vulnerable chest is at risk. Today I got a review letter confirming that the bronchoscopy, her pharynx is hypotonic (pharyngomalacia: basically "floppy", narrowed and prone to collapsing under strain). This was briefly noted back on PICU when she was intubated at 7 month old! How has it taken until now to get a name? Unsurprisingly, this can lead to feeding problems. Well who would have guessed?!

Mostly I am just furious that things are not straight forward. ALL I WANT IS MY CHILD TO HAVE A PERFECTLY ENJOYABLE UNCOMPLICATED FUTURE. 

Is that too much to ask?

Two Tomorrow

Two. She's going to be TWO tomorrow. TOMORROW. TWO.

I can't believe it.

I feel intermittently delirious with excitement on her behalf, and sick with fear as the memories race through my head.

Two years ago, I was pretty much without a care in the world.

Today, I have a bundle of giggles who also requires a higher standard of care than other two year olds.

Why hasn't there been a fanfare, why didn't a bell toll two years ago? How can it happen so quietly, so unassuming? One day a singleton, the next a mother. One day at home, the next in hospital. And conversely, one day in hospital, the next at home. 

Two years ago I knew little of heart ache and far less about love than I would have liked to think.

Two years later I know the dizzying heights of sheer joy and pure adoration and that love is not soft, it is fierce like a tiger. I know the line of despair, terror and consuming guilt.

A little under two years ago, I bought a book roughly around the time my daughter was in NICU or possibly just came out. The Heart and the Bottle, by Oliver Jeffers. I loved his illustration style, but the book made me cry instantly. It was far more grown up that his previous works, and dealt with love and loss. 

"Once there was a girl who was much like any other

Her head was filled with the curiosity of the world

With thoughts of the stars

With wonder of the sea

She took delight in finding new things

Until one day she found an empty chair

Feeling unsure, the girl thought the best thing was to put her heart in a safe place

Just for the time being..." 

And so, the book examines how when your heart is in a safe place, say a bottle, it seems to fix things at first. Maybe at first it is necessary. But as time goes on, it dulls the world around you. You start to think less of the stars, see less wonder in the sea, and new things are left undiscovered, the world slowly drifting further and further from your island. 

After the shock, and I hate to say it, but trauma, of having Wriggles, I was very afraid to feel. I was afraid to grip any emotion head-on for the fear it would consume me whole for breakfast. All through NICU, I was so desperate to feel something, anything. I felt protective, I felt fiercely protective, but I also felt numb. I felt like I was in a bottle, looking out clearly on the world but with a sheet of glass between us. I could shout but no one could hear me. They could see me, and waved cheerfully. But I could only stand, pressed up, and wish to be free yet afraid of what was out there. I wish I could say that when I brought Wriggles home, the spell was broken. I think very slowly it began to break, but I still felt so fogged. I knew I was in love, but who knew love was so painful, so fragile, so vulnerable and so closely entwined with a deep seated guilt that threatened to destroy things? 

I can't pinpoint when the moment was that things changed, and I found the key to unlocking things. In the book, the girl finds a little friend on the beach who easily unplucks her heart for her. In my life it was not so simple. I was slowly emerging back into the world and allowing myself to sink completely into a devout love with my child, free of any terror or hauntings of the past months of NICU or birth, when she abruptly ended up slap bang in PICU. I knew then what I had to loose, once she was there and it set a terror deeper than anything when I realised that the most precious thing to me might be ripped away again. It was so clear how much she meant to me then and that maybe I hadn't been being true to us both, when I had felt too afraid to love her without abandon. Those days until she was out of the critical period were the worst I have ever felt. Going to sleep with no snuffler by my side felt so bleak, as if the world had stopped turning and lost all it's colour, smells and sounds. I felt bereft, even walking to her cubicle, without her by my side. That moment, weeks later when she came out of her induced coma and I could hold her again was in glorious technicolour. Oh she was floppy, she was pale, she was weak. But she was mine. Mine, mine, mine. I will never ever ever let you go, baby girl. 

Of course, it wasn't as simple as that was that. Having my baby back with me, being back with her all the time was the most wonderful feeling ever and affirmed how much I had given over to her, but when we got home I struggled to deal with how things had gone and fell deep into a state of mental unrest coupled with cripplingly guilt that I wasn't making the most of things. I would walk along and cry for no reason, convinced that however much I loved her it would never be enough to make up for her little life so far.

I don't know when that stopped, but it did or at least got to the point of being manageable and I was able to tell my inner jimminy cricket to sod off from time to time. I began to go to baby groups again, to venture to exotic lands like The Park, The Seaside, Coffee Shops. And suddenly things improved. I began to have conversations with fellow mums and not feel a fraud or a headcase.  I saw my baby for being my baby, not a fragile being with too many miniature scars. I began to see that there was a chance, no a fact, that she loved me back. Last birthday was still a struggle. I was doing better but nearer the date became flustered with too many memories and kept nearly blacking out. This birthday, I think I am better. I am excited. I have done present shopping. I have blown up balloons with a faulty balloon pump: now that is love. I'm wearing my heart on my sleeve now most days. It's frightening because there it is, right there, free for the taking. It's not protected, it could easily be broken or damaged. But it's better than locking it away, isn't it? Better than locking me, us, away. I think. I'm not sure every single day or in every single situation. But right now I am.

Happy birthday in a few hours, baby girl.

Proud

Today, Wriggles was seen by our physio to be fitted for her new pink Piedro boots. After being very wary at first and hiding in me crying (I think the poor sausage associates people touching her feet with blood tests; they are rather pricked with tiny scars) she soon warmed up to them and was proudly kicking her feet about. As well as trying to exercises to help her cruising, our lovely physio and myself reflected on the past year that she has been working with us. She looked undoubtedly proud and told us that Wriggles was one of the children she had worked with who had made one of the biggest leaps in development; music to my ears when I know we still have further to go!

When Jemma started working with us after our previous physio went on maternity leave, Wriggles was approaching a year old and couldn't yet sit unsupported or roll over. Her lower limbs intermittently stiffened and then went very floppy, and we knew cerebral palsy (albeit, fairly mild) amongst other neurological diagnoses, was looming in their minds. It's not that this isn't the case anymore; it's just that Wriggles has surpassed the expectations of just how well she has done and now it is beside the point if in the past she has suffered a specific 'injury'. In under a year, she has learnt to sit, crawl, bear weight supported, roll over in both directions and cruise. Although I was told that there was no reason she wouldn't learn any of these things in time, we were also told that there were no promises, no guarantees and we would have to play the waiting game. Yes, it was likely she would eventually walk but by which means or in what time scale, no one knew. She still isn't walking, but she is able to pull to stand and is confident in cruising now and the physiotherapy and orthotics team are satisfied it may take as little as Piedro boots and time to get her to the next level. Everyone who has worked with her, and continues to, takes pride in how far she has come and what a comical little character she now is as opposed to a helpless jerky baby that came home with me, 21 months ago.

a year ago - "I'm really trying, honest!"

So many people think that a premature baby "just" needs to grow to term when they should have been born, leave the hospital and put on some weight and that is that. Job done, prematurity over, scars left behind. And yes, for a few babies that is the case. They can be carried out of NICU and bar a few development checks, never set foot in hospital again. And then there are those who have a very complicated journey to those who have a slightly complicated journey. Those who stay in hospital for months to come moving from NICU to paediatric care before discharge, those who go home with additional support and community care, those who the future looks rosy until something crops up, those that leave but keep coming back...so many variations. For many, prematurity doesn't end when you leave neonatal, the location just changes. The parents live with memories, labels, words, medical jargon they never understood before but do know, living with uncertainty as they wonder if something that cropped up before will rear it's head again in the future. Even as our little babies develop, we wonder like all mums, is she doing that right, is it on time, is that normal? teamed with the added knowledge of prematurity and statistical after effects.

Of course, our journey is far from over; from being resolved. But it is such a boost to hear that my little star has defied what doctors thought she might achieve. I remember the day after her birth, when one of the neonatal doctors came to speak to me. No promises, he said. The next 48 hours are critical for her immediate survival, let alone future. There is no telling what she may be able to do, or not do. And then as she grew older and the admissions started coming thick and fast, her notes tripling in size and the gulf of development inching wider. But then, slowly, she grabbed. She sat (and fell down). Then sat again. She rolled over by accident. Then rolled over on purpose. She started crouching on all fours. She started making 'bunny-hop' movements. Then she toppled over and crawled. Then one day out the blue, she heaved herself up. And I know, one day, whether in weeks or months, she will take wobbly steps. 

Oh baby girl, how far you have come!

First Shoes

I may be mad following this weeks trouble with shoes, but on Friday we ticked off an exciting milestone.

FIRST PAIR OF SHOES.

I had no real intention of making the purchase, but after advice from our physio that Wriggles' feet and legs really need some support to help her standing as she is all over the place, I thought it would be wise at least to get her feet measured. Her feet, like the rest of her, look so dainty that I fully expected she would not fit any of the styles of Cruisers let alone First Walkers. So you could have knocked me off my chair when the foot gauge revealed she was a size 3F!

I was pleasantly surprised by just how good the customer service was in Clarks. It was nearing the end of the day, Wriggles was in a "don't-you-dare-touch-my-feet" mood and I was very nearly going to call it a day and come back when she was more full of energy and likely to enjoy it (if that is ever possible when you hate your feet being touched). But the two ladies persevered in cheering her up by showing her sparkly shoes, flashing trainers and asking to be introduced to Charlie Mouse who had come for the journey. After some impressive persuasion, the little pink shoes were fitted and I decided to just bite the bullet and supply the credit card necessary. We got a photograph, heigh chart and certificate for our troubles. Oh yes, and some New Shoes.

I reckon such a statement of growing up is exciting to any parents for their children, but it left a big impression of me. Such wonderful-yet-to-be-expected milestones seem that little bit more precious after Wriggles' difficult journey, and after the continuing physio and support we have had surrounding her delayed gross motor skills, it was is a pleasant surprise and sheer joy and delight that I see her progressing and with the footwear to match as a badge of honour. 

Back in NICU, "first shoes" never crossed my mind. At that point I did not know if she would ever even be capable of walking as she grew up. My mind lived in the moment; thoughts of the future and the excitement to come were written off simply because of the fear that at the last hurdle they might be cruelly denied. I didn't dream of first birthday cakes, silly jokes or first shoes, I dreamt of my baby in my arms and that one day she would recognise me. Even now, when we are 'out of the woods' and safe at home, growing and exploring new things every day, I don't think a day passes without me thinking back to the difficult start. It is forever imprinted on my mind and I fear sometimes that I don't allow myself enough to become carried away with the freedom of being in the now Good moments and letting myself trust. Even the best times, when we laugh with abandon and Wriggles screeches with laughter and I drink her in, every last little tiny bit that I must memorise forever and ever, after the moment I think back. I am grateful we are now here and there, still sorrowful for being there and in a heartbeat guilty for not being able to let go and forget. But today, was a day of New Shoes. A sign of how far we have come. Nearly two years ago, I could have lost my baby. But I didn't and she has the prettiest, pinkest cruisers to prove it.

Test Driving the New Shoes (did I mention she has New Shoes?!)

Dear NICU

Dear NICU,

I am angry. So angry. I know I shouldn't be but there are so many things I want to say to you. Maybe it's not healthy nearly 2 years on but I need to get this off my chest.

You denied me my role of motherhood. You took away my basic rights as a parent. You can SAY I'm still the mum, but how was I really being a mum just sitting? Sitting and staring. Watching and waiting. That's not parenting.

Do you know how demeaning it is to ask for permission to touch my baby? Not even hold, but touch? And when told, albeit gently, no not now, no not today, how you snapped my fragile heart and stamped over it before brushing it aside for dead.

How patronising and sad it is to have cuddles put on a rota, as if it was another chore to tick off. 15 minutes a day; 3pm after cares.

How I felt as small as a gnat, no smaller, as worthless as a flea because I wasn't breastfeeding. I couldn't even do that and you didn't care. You didn't even say, don't worry because it wasn't important as long as my child grew.

You smashed every one of my dreams and preconceptions of my first child, my baby I will never ever recover or now live. My innocence was lost within hours. It doesn't matter if I go on to have another baby; I will never get those hours back with her.

You were rubbish at sharing. All those weeks and I could only visit. Every night I had to leave. Every night I had to leave my baby with someone else. Someone very kind and very skilled but a stranger. Every night I had to accept that someone else would comfort my baby because I couldn't be there to do it, and might get to hold her precious hands while I wasn't allowed.

You had the most important job in the world looking after tiny vulnerable beings that were each the centre of someone's universe and yet you had no compassion. Day in day out some babies would get sick. Worse, some might leave this earth. Why didn't you do something? Something more?

You weren't me. You might have cared for my baby but you will never love her and you took her from me when she needed love the most.

Kind regards,

but maybe not that kind,

Mouse

ps. By the way, thanks for y'know, saving my baby's life and looking after her. Thanks for giving her the chance to live so we could both be happy today. More than happy. Um. Maybe you could just ignore all of the above?

*screws letter up and throws it in the bin*

Sigh.

The Best Worst Place

Recently, I met a fellow neonatal mum face to face. We were introduced by a good mutual friend of ours and had both had daughters on the Tiny Lives unit at the RVI. Our daughters had missed each other by a couple of weeks. Her gorgeous 30-weeker, now 16 months old, was born due to placental abruption. Immediately, it was like we were part of a secret club with a code language. In minutes we swapped procedures, compared stories, established mutual acquaintances on the ward and compared favourite doctors and nurses. 

"It was such a wonderful place."

"So lovely; just incredible."

Our friend, with her term baby, looked at us as if we were mad.

We paused and looked at each other as if we were mad. And quickly looked away, a slight welling of the eye and a lump in the throat.

"A horrible place."

"The worst place to be."

The thing is, both things are true. A good NICU is the best worst place to be. If you're going to be separated from your newborn, you damn well want them to be in the best equipped place with the most high-tech machines and knowledgeable staff yet also with compassion. But of course, even the best NICU, the one with the friendliest nurses and the most intelligent doctors and the newest and sparkliest and beepiest machine is never going to be enough. 

Because it's not with you. 

You can visit, yes. But that is the hitch: you have to leave. Night after night, you have to walk away. Bye bye, baby. Does your child, wired up, know you are leaving? Know the difference between night or day? Know inherently that you should be there, forever and always? That is all debatable. But to you it goes against the very grain of parenthood. It is the strangest thing: you know it is the best place for them. But you also know, that it will always fall short and cheat you both of the most loving and most caring place: being there with you.

My girl?

Plop.

Through the letterbox came the written report of the last appointment at 15 months corrected with the paediatric team which had gone fairly well. They were happy to leave it until around August, just before Wriggles is 2 and seemed content that I was doing all the right things and generally being a Good Mama.

"...at clinic, Wriggles was quite happy playing on the mat and was reluctant to go back to you [me]."

Bang.

Like a dagger to my heart.

Inside I crumpled up again, momentarily back swimming in confusion, hurt and rejection. 

After I got over the initial struggle of NICU coming to terms with my very new, very surprise and very vulnerable little scrap in an incubator, I fell in love. There was never a question over that. The struggle I had was accepting that Wriggles felt anything in return for me. This struggle was a very long one and took many session of counselling, many cuddles and many many months (I would say well over a year) until she started blowing me kisses and hanging onto my leg.

 

Parenting is a very unique relationship that breeds unconditional love from the responsible carer towards their dependents. And it is always assumed that this love, in a different more taken for granted way, is returned by the children. At it's least sentimental, because in most cases, the child knows no other parents and no other love. It is the first relationship, and hopefully most long lasting and simplest yet most complicated they will ever have.


When our minds play with our confidence, cruelly, we question even these most basic facts. Whether she knows what love is, I am Wriggles' constant and the person she is with by far the most. I am there morning, I am there night. I am there in the middle of the night. Just me. Just us. I am there in sickness (either of us) or in health. I am there in good spirits and there in a grump. So knows that. As my friend V pointed out recently while Wriggles was blowing kisses to her, she knows what kisses are and distributes them so freely because we have such an affectionate relationship and to her, kisses are the norm, because she has always got them. What a lovely innocent world.

I know the report was not in any way criticising me or suggesting my daughter is indifferent, or worse, doesn't know who I am. It's my fear shouting over my rationale and that if she didn't know my world of security and comfort, she would be fearful to do any venturing. It's just that my (not so) secret fear is that deep down she doesn't understand who I am, and running on from NICU thinks that the entire world is her family, happy to embrace and be caressed by stranger after stranger taking my place.

When I first discovered the world of blogging, particularly those with a premature baby aspect, one of the most important posts I read was this one by Beadzoid. It very much spoke to me and in my dark moments when I felt very alone, offered a chink of light that someone had had similar worries to me, and if they hadn't been certified then I wouldn't either.  

This week, Wriggles is in temporary childcare; not an ideal situation but a necessary evil as she will only try and eat the printer at work. She has started to cry when I leave and I am told, stand by the stairgate for a while after looking out. It breaks my heart and I smother her with guilty kisses on return. You do care. I'm so sorry I doubted you. I'm not leaving you. I love you. The minute we are home, she scrambles away to explore new worlds and hoot down toilet rolls. Then out of nowhere gives me a big hug or grabs my hand. Then the spell is broken and she is off again, but I am revived.

Oh, to be a parent. You just can't win either way.

Maternity Leave

Tomorrow when the Queen gives her speech, she is expected to address the proposed new changes for maternity and parental leave as put forward by the Coalition government. After reading the proposals, I found them slightly chilling. The new proposal stipulates that mothers would be entitled to just 18 weeks maternity leave with anything further by personal agreement.

Currently, mothers are entitled to 39 weeks of paid maternity leave and 13 weeks of unpaid maternity leave. Mothers can go back to work after just two weeks if they choose to or have little choice in the matter, but are entitled to take up to a year off which would not be paid at the decision of their employer. Fathers are entitled to two weeks of paid paternity leave.

The proposal put forward in the Government's Modern Workplaces consultation, published last year, would give mothers just 18 weeks of maternity leave, and at the employers discretion up to four weeks of reserved paid parental leave, followed by 17 weeks of paid parental leave and 13 weeks of unpaid parental leave, which could be shared between mothers and fathers.

There are some loopholes in the current wording putting parents at the mercy and sympathy of their employers and I personally found that when your working contract is at odds with legal maternal rights, no one, including Citizens Advice Bureau or Welfare Rights knows what to do with you. The new proposal sounds even worse for cases that may differ from the norm or at such stage involve complications often beyond the mother's control. At present, there is no allowance for special circumstances like medical need, including maternal problems pre or post-natally or conditions affecting the baby, such as infections or preterm birth. My own maternity leave, started the day Wriggles was born rather unexpectedly. From what I recall, my working contract did not actually include anything to do with maternity leave or in the event of, as I was a new graduate and at the time of employment, no one including me, knew I was pregnant. This made things even more complicated than they would have otherwise been and I was passed from pillar to post whilst someone tried to work out what I was entitled to, which was then further complicated by Wriggles being discharged on oxygen meaning that formal maternity leave went out the window and I ended up being on parental leave as a carer instead. However, for other parents with more watertight or appropriate work contracts, preterm birth can mean that maternity leave is brought forward drastically (one woman I spent the NICU journey with, started 6 months maternity leave after leaving work at 26 weeks to go on bed rest and then having an emergency Caesarian section at 27 weeks) or if you give birth spontaneously then maternity leave can start from that date.

The difficulty with a complicated labour, birth or neonatal period is that there are no magic answers, no fixed timescales and no promises. A rigid set number of weeks for maternity or indeed paternity or parental leave has no mercy on the world of NICU when things can change rapidly. If your child has been born prematurely and with no other obvious complications, parents are generally told to aim for discharge around the due date. Some get to leave early if things are going well and some stay in days, weeks and occasionally months afterwards. We all wish we had a crystal ball to predict things, but parents live on hope whilst employers and legal systems demand answers. Like, yesterday. 

Even once you have escaped hospital, you have two things staring you in the face: 1) you have just lost a huge chunk of time sat next to an incubator staring blanking and jumping out of your skin every five minutes when the monitor beeps and 2) you have possibly also mislaid a chunk of your mind as you process what your little family has just been through. Some parents seem to be able to walk away with a shudder of the past; many, many others struggle if not immediately afterwards. It is so hard to predict also what problems relating to or independent of prematurity will arise along development and how that will affect your working ambitions and situation.

Looking at the dates laid out, I have looked back over my 'maternity leave' and was horrified that I might have had to return to work when my daughter was only just 6 weeks corrected: an utter newborn.

18 weeks 17th January

At 18 weeks, Wriggles was still on full time oxygen. She was 5 weeks and 6 days corrected. She had no concept of a sleep routine although was slightly less erratic. Although she was a very good weight and lounged comfortably on the 50th centile for corrected age, she was a titch and was still largely in premature baby clothes as all the high street "tiny baby" and newborn sizes hung off her. She could have keep all her toys in the bottom of the sleepsuits! At 18 weeks we were still having visits twice a week from the community neonatal team to do oxygen saturation spot tests and check her weight and feeding. We were seeing the physio team regularly to deal with her torticollis and plagiocephaly and also had regular contact with the nutrition department and respiratory team to have monthly RSV jabs, to ensure she did not catch the virus which could have been extremely debilitating for a premature baby on oxygen. She would wake for small periods in the day (or night) and was largely floppy still. There were signs of her beginning to twitch her facial muscles although a smile was a while off yet, and her cry was very definitely the mewl of a newborn still. Reflux was here with a vengence and she would regularly projectile vomit and be quite unsettled. She fed 4 hourly on the dot and was a bit bemused by life, the universe and the idea of wearing tights (tried once only).

26 weeks 14th March

At 26 weeks (13 weeks and 6 days corrected) Wriggles had been weaned off oxygen in the daytime and was completing a sleep study with a view to removing it at night time too. She had had her first bout of suspected bronchiolitis. She was not yet on solids, although we started weaning the following week. She was sleeping for longer periods at night time and napping still in the morning, lunch and afternoon. She was in a pattern whereby she liked to have a bottle (100ml-125ml), go to sleep and then have some more milk when she woke up. She would drink roughly 20oz in 24 hours on a good day and had started teething, although no teeth would appear for another 6 months! She could hold her head up and smile and was very slowly beginning to tolerate tummy time. When on her tummy, she could raise her head for a few seconds and balance on her forearms and was beginning to learn the basics of cause and effect-.ie. hitting things on the baby gym. She could hold things briefly, like her frog rattle and the thing that made her smile most was our stuffed Very Hungry Caterpillar walking over her head and bopping her nose. I had been diagnosed with PND and was not coping marvellously well. I was sleeping and eating terribly, had lost quite a bit of wake and was struggling with social interactions and jealousy when other people held my baby. I had convinced myself she didn't know I was her mama and wouldn't care less who she was with; I loved her fiercely and this made my thought even sadder. The best bits of the days were cuddles on the sofa and Wriggles dozing on my chest. We still had weekly visits from the community neonatal team and had had the appointment for our 6 month check though.

Actually returning to work-33 weeks Early May

I was due to return to work in April 2010, in what would have been Wriggles' 29th week. However, she had the dreadful bad manners to contract pneumonia and wind up in Intensive Care for three weeks, effectively wiping out most of the month. Towards the end of the month, we ended up back in A&E once if not twice and so it ended up being the first week of May I was back. It ended out working out quite nicely as this gave us time to move and settle in and to also get to grips with our new GP surgery who would come to know us well. We got to know the childminder better and gave Wriggles some proper settling in time and me some piece of mind. By this time I was beginning to fall apart mentally but was determined to return to work with my single mother mantra held high. I started sertaline, a SSRI anti-depressant and was diagnosed with Post Traumatic Stress and was constantly haunted by nightmares and flashbacks. I felt incredibly detached from everything and it felt like difficulty bonding all over again. Gradually this would ease and I would learn (in the snatched healthy moments) to enjoy every millisecond of being with Wriggles and laugh and sing. Wriggles had miraculously put some weight on and despite every other weekend being rushed to hospital, was thriving in between. She was rather excitingly beginning to fit into 3-6 month clothing and could sit supported in the rather fantastic Bumbo which we were lent by the physio community team. She could finally bring hands to midline although refused to roll over. The oral aversion had started by now but at this point, not acknowledged by the medical team.

39 weeks 13th June

Although I would have preferred to have been off until at least 9 months corrected, if I had had to return to work at 39 weeks when Wriggles was 6 months corrected then it wouldn't have been the end of the world. Of course I already was at work and had been for over a month and with honesty was really struggling. I was too afraid to speak up in fear of jeopardising my position and barely had the time or energy to seek any advice which might have helped me. Further to the stress of having returned to work, we were in the thick of admissions and oral aversion meaning feeding was a struggle and we seemed to be at the hospital as much as home. It felt quite a bleak point for me, as it seemed that when Wriggles was well she was being looked after by someone else whilst I fiddled about with highlighters and when we were together it was at the blooming hospital again. I was finding things easier though in terms of mental health and my relationship with Wriggles felt stronger. I was finally accepting that she loved me back, and we were tentatively starting to go to mother and baby groups and socialise a lot more. Had I have been off until this point, I think I would have maybe had more chance to build and strengthen friendships with fellow parents, meaning I would have felt less isolated. I would have also felt more confidence in my mothering skills and certainty that I knew my daughter best.

52 weeks 14th September

At a year old, Wriggles could very-almost-nearly sit up for incredibly brief periods but was determined to master this skill. She did in the end a few weeks later, but was having wobbly periods of trying now. I was having much less wobbly moments although found her birthday harder than I had hoped I would. The oral aversion had been taken a little more seriously although the range of food she would accept if any, was very limited. She relied nearly entirely on milk although was more relaxed touching food. We had regular activities to go to and Wriggles was proving to be quite the party animal meeting other people. She has always been a social and smily baby, but the older she gets the more she seems to charm people! I do think, had I had all this time off then I would have returned to work with maybe a tear in my eye but ultimately well adjusted and ready for a fresh challenge. It would also have really helped as throughout the summer, respiratory infections came so thick and fast and each one was like a kick in the stomach. Things no one can warn you about truly whilst at NICU but something which nonetheless can be part of the package of a premature baby. Juggling this with a work regime is tiring, mentally and physically. Most evenings I would collapse on the sofa and it would be all I could do to try and concentrate on simple TV programmes let alone more adventurous stimulating hobbies.

Charities and parenting groups have already begun to express their concern. A key group of 17 groups wrote to the ministers outlining their concerns and pushing for a minimum standard of 26 weeks maternity leave to be implemented. They highlighted issues such as childcare problems, life with a newborn, parents coping at work and unforeseen complications such as a period of time in hospital for mother or baby or postnatal depression. The letter to ministers was signed by Bliss, Child Poverty Action Group, Citizens Advice, Family Lives, Fawcett Society, Maternity Action, Mothers Union, National Childbirth Trust,  NUJ, Prospect, Twins and Multiple Births Association (TAMBA), TUC, Unite, UNISON, University and College Union, Usdaw, and Working Families. 

You can join the Six Months For New Mums campaign run by Working Families including on Facebook, which is campaigning for all mums to have the right to a minimum of 26 paid weeks of maternity leave.

The more I have thought about it, then more passionately I feel that new mums with whether their first, second of fifth child should be valued and respected enough to have a sensible amount of time off. I know we are in a recession and that employers and the Government do not have bottomless pits of money or are there to act as charitable causes, but to me this proposal is sending out the wrong message to women and parents alike. It looks set to widen the gap between gender, those with and without families and endanger long term pay and working situations for families as well as ambition and motivation both at home and in the workplace. We are supposed to cherish family life: not wish it away.

Born Too Soon

I started blogging as a direct experience of parenting a premature baby. It has become my personal therapy and a way of connecting with other parents who have shakily stepped off the rollercoaster and are beginning to think 'what the hell do we do now!'. Prematurity took over my life as it was overwhelmed and blasted my mental state into what felt like space. I felt so anxious for my child, so guilty for what she had been through and so disconnected from the real world. Born spontaneously at home before the paramedics arrived, Wriggles arrived into the world at 27+6 weighing 1090g (2lbs 5oz) and although took a breath, then crashed. She was rushed to hospital whereby she was resuscitated. They used a new research method of "cooling" keeping the body temperature low to protect the brain. The fact she had cooled naturally in my draughty bathroom whilst waiting for the team and was still attached umbilically is what I have been told saved her life and brain function. She was then taken to the RVI Newcastle upon Tyne and stayed there for ten weeks. A large chunk of my blog is about prematurity and the experience in neonatal and the effects afterwards, so for this fantastic Tommy's campaign I have decided to hand over the reins to Mouse, who came into our lives on day 2 of Wriggles' life and kept watch by the incubator and has slept with her ever since.

My name is Mouse. I popped out of a carrier bag as Wriggles' First Toy bought by her grandparents on Wednesday 15th September, 2010. I was presented to Mama who felt me very tightly and closely. I could hear her heart thudding away as she pressed me to her, desperate to find comfort in the strange new world. Later that day, we traipsed down the corridor hand in paw to meet Wriggles. She was in the Red Area (Neonatal Intensive Care) and there were 4 incubators in the room and two nurses. She didn't have a name yet, just Baby Girl [surname]. By this point she had come off the ventilator and was on CPAP which was attached to her face with a little grey hat. The huge CPAP tube was nearly as big as her face. She wasn't very big; maybe a little bigger than I was and definitely thinner. My little stuffed arms and legs looked so chubby next to her bony limbs. But we looked at each other, beady eyes to beady eyes through the incubator, pressed against it. I'll look after you. I'll be here when your Mama cannot be. She trusted me with the biggest job of all to keep you safe and keep you loved. Because Wriggles was poorly I was not allowed inside the incubator as part of infection control, but I sat on the top or next to it. I kept Mama company during the long hours and hard times and helped her keep a diary. Her memory was so fuzzy I had to help prompt her a lot, and she would cling onto me as if I was her baby, as she couldn't do so with Wriggles. NICU was an odd place. There were always people everywhere and everything was conducted with speed and a sense of urgency whilst trying to maintain a blanket of calm, yet depsite the hustle and bustle it was very lonely.

First day in a cot

We spent a total of ten weeks in the neonatal unit. Other babies and their companions like me came and went. Most of the babies were born at a later gestation and spent far less time in. Some were there for a fortnight, some a little more. In the Green Room we graduated into, we got to know another extreme prem baby girl, E and her guardian toy Bear. Me and Bear got on well; long into the night we would whisper over the tops of the incubators and keep an eye on each others little people. One day, E had a nasty bradycardia and apnoea moment and went purple, needing stimulation. Bear stood poised in shock, willing E to regain breath. She needed some stimulation. Afterwards we were on a high alert, like guards waiting. It was a stark reminder how changeable things are even when they seem to go well.Only a few days later, Wriggles herself had a nasty turn twice in a row and was taken back to HDU to be kept a closer eye on. She had tests taken to see if there was an infection brewing. The HDU was less lively; although there were more doctors and nurses, the atmosphere was more somber than the nursery room which could be quite jovial. I missed Bear, who I could laugh with. Mama was much more worried after relaxing, and would keep vigil until her last metro home some nights. She would sit by the cot, watching Wriggles sleep. I think she wished she could swop places with me, and be cosied up next to Wriggles, touching her fragile skin. I would smooth it with my soft paws and let her clasp her tiny fingers round me. After a few days and an improvement, we were allowed back into the nursery but to our distaste, our 'spot' had been taken over and we were relegated next to the bins. Yuk!

Around 34-35 weeks

Everyone expected Wriggles to kick the oxygen habit she had developed. She had been so clever at coming off the ventilator and CPAP relatively quickly, it was a surprise when her oxygen requirements began to rise. The nurses kept trying, but within minutes the alarms would ring out. Bear gave me a sympathetic look over the room. E's feeding really took off, and she and Bear went home when we had been in around seven weeks. It was quite sad without them. Mama and E's mum used to talk merrily through the day and chat with the nurses. All the babies we knew had gone home, so it was just me, Wriggles and Mama. Wriggles was finally learning to suck and swallow and taking tiny amounts of bottles. Just 10ml at first daily, but we built it up. I was so proud! After the third air challenge failing, it was decided that she would go home on oxygen. Things got very busy with forms to sign, oxygen to order and Mama to calm down. She was taken off to learn resuscitation and first aid and talked through using oxygen. Before we knew it, it was time to room in. Mama looked so proud, wheeling the cot with me and Wriggles in. The three of us settled into our little room. I did some gymnastics while Wriggles napped-it was all just too exciting!

Rooming In

We finally came home on Monday 15th November at midday. Mama's friend R came with us and snapped pictures to put in an album to treasure. It was such a surreal day, walking out. I was tucked up with Wriggles in the carseat. Mama had found me a tiny new knitted hat so I could have something to keep me warm against the brisk November air. It was hard to imagine that when I had come in September it had been warm and still! Mama had brought Wriggles a furry suit with ears so we could match, and it was so big she looked swallowed up! She looked so confused going out. I whispered that it would be alright, that we were going somewhere where Mama would never have to leave us again.

Going Home

Too Exciting

So, settled at home we were in bliss being all together again. Every morning, Mama looked so dazed as though she couldn't believe her luck. I noticed a crushed photograph stuck to the wall by her bed-I guess it was the next best thing to sleep with when Wriggles was far away across the city. Since coming home, we have had lots of highs and some lows. We have had adventures like going to the park and learning to sit up and some scares like dashes to hospital where Mama would unceremoniously shove me in a coat pocket! Although I got a bit squashed, I was glad to come along for the ride. I started out life as being Wriggles' protector and guardian, and I don't intend to give that up easily. Even though she is now FAR bigger than I am and has learnt to stand up, giggle and play peekaboo, I will always look out for her and remember the humid, quiet nights as I watched her grow and develop as if still inside her Mama. She turned into a real little girl, from a scrawny newborn and I feel privileged to watch her fall asleep and wake up every single day.

At home, around 37 weeks

Growing up, 19 months old

Wriggles was one of the lucky ones. Preterm birth (before 37 weeks) is the number one cause of mortality for newborns and is the second leading cause of mortality in the under 5s, second only to pneumonia. Premature birth is one thing that is not specific to poorer countries, although economic and social circumstances do play a part. It is a worldwide problem and one that is one the rise. Every year, 15 million babies are born too early and of these, 1.1 million will sadly die. Many others will have substantial problems relating to prematurity. In the UK, there is a current rate of 7.8% of live births being premature and this is estimated to be increasing at a rate of 1.5%. The UK is ranked 46th out of 184 countries when looking at their premature birth rates. I personally found this surprisingly high, but then considering there are around 60,000 premature births per year maybe I shouldn't have been. All of this is frankly, rubbish and the really rubbish thing?

It could be prevented.

There are a known number of factors which increase premature birth that should be implemented either pre-conception or addressed as early as possible. Women and their carers need to be empowered with the right information to look after themselves and their developing children. No one wants to face the prospect of losing their child, so things need to step up to ensure that all women, across the world have a better chance of carrying to term. 15 million is too many. The Born Too Soon report is the first of it's kind, bringing international figures together and uniting in a new goal to halve the mortality figures by 2025, a goal championed by the UN.

 

 

Join in the Twitter party between 3-4pm today if you are in the UK, using the hashtag #borntoosoon tweeting with @tommys_baby.If you have written a post about premature birth or the Born Too Soon report, then linnk up at Not Even A Bag of Sugar.