Monday blues

I don't like Mondays. If Monday sets the tone of the week, frankly I am done with this week already. 

Today we had our appointment with the respiratory paed. We missed our own paed, but got the other senior consultant who is also pretty good and on the same page largely as our doctor. The appointment was by and large, productive. Wriggles had a lovely time playing with the toy truck (future mechanic?) and all hell only broke loose when she needed to be weighed. Unfortunately she must associate side rooms with nurses as synonymous with blood tests and fear, as in seconds, my chirpy little bean was a screaming, rigid, limpet who needed peeling off me. She was so distressed she was stiff as a board and still crying to be measured, so the nurse wrote down "uncooperative with height". I bit my tongue. FFS, she's fucking terrified, not being naughty! She is 2 and has been through more procedures than many do in a lifetime! I know she only meant it in a jokey way but it really made me bristle.

The actual appointment was very thorough. The immune results are not back but will be chased with a letter to the GP confirming if they request a booster vaccine and if so which one, the feeding they are happy for me to manage with help of the dietitians ("and keep hoping"), her tonsil size was checked and we went over her list of medications and checked dosages. We discussed her sleep study and went over sleep history and patterns and they notes even static in the daytime, Wriggles is a noisy breather. This had got a lot better during the autumn but has slowly crept back more and more. The consultant confirmed he thought it would be beneficial to removed tonsils and adenoids. The tonsils are a moderate size and the adenoids are quite large, and we are not yet at 'peak growth' period. He added it may possibly help the night refluxing, as she sucks in her stomach muscles to help breathe when the adenoids narrow her nasal passages, and the extra abdominal work put pressure on the stomach which combined with a lax stomach valve and tummy full of night feeds can aggravate reflux happening. So whilst it is far from a guarantee, it is a bit of hope. I have also read other parents with food aversive children relating that tonsils being removed helped with food consumption and swallowing difficulties. Again, a sliver but hope but sometimes a sliver is all you need to keep going. I have all the usual concerns about having a general anaesthetic and surgery, but a tonsillectomy/adenoidectomy is a pretty common and standard op and aside from GA the only real risks are infection which in our case is heightened as she will not be allowed oral fluids to help the healing site. But as the consultant said, "I have only regretted not sending some children for a T&A, in 15 years I have never made a referral for one I have regretted or has had negative results." That sells it for me.

The thing which did deflate me was another mention of fundoplication; surgery to essentially wind the stomach top around itself to form a wrap to keep contents from refluxing up. This surgery has been discussed on and off since the summer when aspiration was really taken seriously and the feeding tube placed. If the surgery was simple, I would happily sign on the dotted line yesterday. Control reflux? Eliminate vomiting? Be my guest! However, unlike the T&A this is not so simple. It is more major surgery and there is a higher risk attached. Side effects are far more common and the recovery period can be fraught. It is one I have read up on over and over, and whilst I do see the positives and know it has improved things for many, it is not one that sits comfortably with me. That said, we are running out of things to control it. This decision is one that does not have to be made imminently; the doctors are still undecided on whether it would suit us so we have so time to hope either the T&A, diet, maturity or something magical help to control or better still improve things. We had a chest X-Ray to check for aspiration during the latest reflux flare-up so need to to wait the results now in the post. Letterbox, you will become my new friend.

Talking of letterboxes, one letter plopped through this afternoon. A surprise letter about the previous MRI-which had been a disaster and one I was told there were no results from that would be any use and would need repeating. So to receive some results, was a shock. There must have been an image generated that the neurodisability paediatrician could read. It did cross my mind that there was a mix up, but we have not had an MRI before, only the two cranial ultrasounds performed in NICU. The letter read "surprisingly, there are no structural abnormalities. We will discuss further in clinic". It makes me a little nervous that even our development consultant was "surprised". He was clearly expecting something, I was expecting something, pretty much all the doctors we have seen over the last nearly 18 months have expected that something would show up. So I should, in theory, be dancing on the ceiling. No bleeds, no PVL, no lesions. All in all, pretty excellent. But all I can think is, so what the bleeding hell is causing/caused cerebral palsy? Where, are my promised answers? So many things have been chalked up to something we will never know, is this yet, another? Her history frankly suggests that at some point there has been brain trauma. It doesn't help there is no existing antenatal records, but birth and subsequent events are a hotbed for being able to pick things and say, maybe that. An MRI was going to tell me. To pinpoint. To flag up. To answer my questions. It has just generated more. For CP and spasticity there is something somewhere. But not on this MRI. 10-16% of children with CP have normal MRI findings. Maybe I just have to accept that this is us. An MRI reflects the structure of the brain, not function. I just can't help feeling a bit cheated and full of questions to ask. Does this affect the prognosis, the treatment, the diagnosis? Does this warrant extra tests? Do we need to look at genetics, blood tests, anything else? I have a month until clinic. By NHS standards, a month is not too bad. But it is going to be a long month.

So tonight I feel exhausted. It feels a full on day. I am fed up with dealing with things on my own. Sometimes, just sometimes, I wish someone would make me a cup of  wine  coffee and hold me while I toss and turn all night and tell me it will all be ok. 

I am really fed up of seeing my beautiful mischievous daughter love life with all open arms and for life to not always love her back but deal card after card of yet another thing. It seems relentless. 

Less than two hours until Tuesday. Let it be a more uplifting day.

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.

Tether

One of the cruellest things about parenting and responsibility is the accompanying guilt.

Why aren't I doing it right?

Why is [insert anyone from baby group] so good at this and I am not?

Why do the creatures we love so much try us?

Why do they press our buttons when we just want the best for them?

Why can't I do this?

When can I run away?

What is wrong with me?

Some days it is relentless in it's let up of internal criticism. Some days I just want to walk out the door and I run and run until my feet fall off. Some days I want someone 'proper' to take over.

Of course I don't.

The furthest I've ever run to is my bedroom; just metres if that. I won't even lock myself in the bathroom.

Some days I don't know if it is being "just a mum" or if it is a throw back to the days of NICU and the accompanying uphill struggle that has been oral aversion, recurrent admissions and a scary unknown future. I can't forget. I wish I could. But the pain is still there in the background, lurking. Waiting around the corner. Waiting for the light of my life to close her sleepy eyes when the grief will pounce and smother me until I can fight no more.

I thought I had this depression, this rememberance, these experiences under control. Somehow, behind my back they have broken free of their shackles and crept up to tap me on the shoulder.

I am so tired.

Today it was all I could do but to curl up in ball on the floor while Wriggles pulled everything off the bookshelf half-watching In the Night Garden.

I have no idea what Iggle Piggle did with Upsy Dasiy. My eyes were closed. My brain was numb. I felt nothing, saw nothing, heard nothing. I should have been awake, alive. I should have been playing with my precious child. But I couldn't. I selfishly couldn't find the strength to even sit up or mumble through The Very Hungry Caterpillar.

Why is it all so hard?

When can I move on?

When can I get it right?

When can I have happy moments all day and everyday?

If not for me, then for Wriggles. Please. She deserves it.

Without Faith

I am not a religious person.I never have been, apart from a brief zealous period in the Brownies when I wanted to carry the flag in the Sunday School parade. I completed my A Levels at an Irish Catholic school which strongly resembled a spin off of Father Ted crossed with St Trinians; lessons were cancelled if a crucifix fell off the wall ("a sign"), classes were taught via the medium of various versions of Jesus Christ Superstar (I wish I was joking) and everyone generally ran riot. I was indifferent to the religious attitudes surrounding me day in day out, but really very fond of the community I was in. I became decidedly more atheist after going to university and encountering some for more militant religious types who thought that bullying others because they disagreed was acceptable. I know these were mainly in the minority compared to hundreds of gentle, caring soul but it was an unpleasant eye-opener. My family are not religious but my parents and sister quietly have their own beliefs which they follow in ways they feel comfortable with. My father had a slightly more traditionally Christian upbringing from what he says, but his own way of doing things is more insular and private. Many of my friends have faith, from the agnostic maybes to the very committed. I like the idea, but I just cannot believe. This is not just about religion though.

I often wondered that if faced with a dreadful situation, would I instinctively call on God, a God, any God, multiple Gods, to give me strength? Did I feel atheist because I had never been challenged enough in my comfortable life?

Sadly in January 2009 this was put to the test, when my father having contracted an aggressive infected that was shutting down his body and ulcerating his heart was rushed for emergency and life-saving surgery at a major London hospital. We were were a 33% chance of survival. As we sat in the waiting room all night for 6 hours waiting, watching as dawn broke and the smoke from the incinerator several floors belows curled up into the crisp new sky, I thought many things. I wished many things and hoped many more and worried about stupid stupid things. I wanted to find an inner strength, a inner connection, an inner belief. An all-knowing kind benevolence that could be a guarantee on saving the life of this intelligent and kind man who's life hung in the balance on an operating table, at mercy of the experience and capabilities of a team of surgeons we never met before, and at the mercy of even worse: chance. Chance has no compassion. Chance doesn't care about statistics or history. Chance strikes opportunistically.

But I found nothing. Nothing but blindless hope that I hadn't hours earlier spoke my last words to the man who gave me life and brought me up. I wished and I wished; to no one but the silence that cloaked us. When finally, we were told the operation had ceased and we must now watch and wait to monitor the success of that and the antibiotics, the wishing carried on. Wishing is probably the wrong word; it was to no one but for everything. It was a mundane disbelief that this could not be happening to the strong man I knew. Almost a deliberate lack of acceptance and a need to keep going, for if we did as a family, then he would too. And in April that year, he came home.

Many times afterwards, the odd religious friend who knew about the experience would say, "so surely now you believe, now you have been spared."

I'll admit, that made me angry. Being without the foundations and faith of religion, I did not see how I 'should' be a convert. Yes, my father had been saved. By the quickness of the NHS, by renowned doctors and clever nurses. By luck, maybe, but my precision and skill also. By the brilliance of modern care and the civilised world. If I was to believe, even if I wanted to, and goodness did I some bleak days, where was this omnipotent God when my father got that ill? Who, who saves, would let someone get in that situation in the first place? My atheism was more concrete than ever, although with a much softer edge and more understanding of those who did believe. The attitudes mentioned above did make me cross, but I understood how some people needed and felt healed by religion and their faith. Me, I found the things that got me through was not belief but monotony and memories. Memories of happier times and monotony must pay bills, must eat, must update relatives, must wash, must dress.

And then Wriggles came into the world, 12 weeks early on my bathroom floor.

And again, no God even so much as poked His nose around the door of NICU. If I had had a glimmer of believing, I might have done the religious equivalent of leaving him a sherry and mince pie to entice him into my life to give me some cheer and the best present ever, that was currently fighting in an incubator. But I didn't. I couldn't. Where I imagine some keep faith, was an empty box. A hole that was filled certainly with cautious hope as days ticked by, but not directed anywhere. Again monotony gave me strength. That and an-increasingly dog eared photograph of a little scrap that was called my daughter. In order not to be allowed thinking time, I tried to do everything under the sun. Including a spate at work in the middle of the NICU stay. Partly I was run ragged about finances and a very grey-area-ed work contract, but it also offered some salvation of not having to hope or wish or think or be guilty. Hello you're through to .... can I help you? I could just burble under the surface and then run, often literally, as fast as my legs would carry me through the city centre, up past St James football ground, through the park, past a&e and up, up the stairs into NICU where the world stopped turning again until I left.

She started to look like a shrunken baby, and then came home with me. Life started up again. Things fell into place, ironed out, I tried to forget, but even if I didn't, I had a very real reminder of the happy outcome. I could pick her up and carry her around and kiss her until she got fed up with it. And then suddenly I was in my third Intensive Care unit in two years. 

I didn't find anyone there. I didn't expect too. A little of my heart was feeling hardened to the testing and mostly, I knew that the one thing I had faith in didn't have magical properties or an all-seeing benevolence, reason and complex plan. She did have ten fingers and ten toes though. Having had a taste of "normality" was what drove every day into the next day. I could barely leave her side without feeling that the distance might bring us further apart not closer, so my set up vigil provided my hope. I was touched though by a little community drawn up for me by others.In absence of local family, my circle of friends outstripped any expectation and went beyond the call of duty to bring me food parcels, sit with me silently, bring me clean socks, provide a shoulder to cry on (not that I did. That would mean admitting how bloody terrified I was) and some times not leave until 3am in the morning because I refused to leave Wriggles' side. Until the point my mother arrived, and beyond that, all I had to do was mention something and it was done. If I ever needed belief in humanity and kindness restoring, it was now. They didn't do it because they had to or had been told to or believed it would get them to a better end, but because they cared. On my first mother's day there on PICU I received three cards all "by Wriggles" because no one wanted me to feel alone.

Now that is what I believe in. Love of the here and now.

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.

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.

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.

Commemorative Quilt

I've talked before about the importance of charities that support neonatal or indeed any hospital unit that can offer vital funds that will enhance the unit beyond the NHS budget and be able to prioritise family support, community care, extra staff training to ensure that knowledge is kept cutting edge and small details that seem insignificant, but to families and in-patients make the difference between a scary stay and bit of a fuzzy glow.

Babies should start their growing up at home with their parent(s) and families. However, for 80,000 babies this isn't the case and they will start their lives in a neonatal unit. Wriggles spent two months there, which although is heart breaking, considering how much longer some children spent, is barely skimming the surface. Too many people think that premature birth or sick children is something that happens to other people. Premature birth counts for 7.8% of the number of live births in the UK and up to 40% of those cases have an undetermined cause. In my city, 6,500 babies are born every year, and 600 from those and from other hospitals around the region and the North of England will pass through the neonatal unit, through intensive care, high dependency and special care. Tiny Lives our charity support the unit, including directly funding breastfeeding support posts raising expressing and breastfeeding to 95% and for two specialist physiotherapists who do vital positioning work which is especially necessary for babies in for extended periods of time. They also focus on family support and allow for items outside of the NHS budget to be purchased. 


To celebrate the marvellous work the unit does and the lives of the babies who have passed through since the unit opened in 1993, a quilt is being made by an events group supporting Tiny Lives. There are 93 squares being personalised by parents and a border of buttons are being sponsored by anyone who wants to support the project and from friends, families and businesses.

 So if you would like to get involved or donate, hop over and have a peek. Including Gift Aid, the total raised currently stands at £1009.18 which can be added to the total monies raised so far from the group which is £11,673.89. Hundreds of other people also raise thousands for Tiny Lives across the North East; having had a experience of special care makes an enormous impact on lives from the babies, parents, friends and family.

No parent ever plans to be on Special Care but when you have no choice, having a first class unit, dedicated team and a supporting charity to ease the financial burden, it makes a hard time much easier.

Text QUIL99 £1 (or any amount you like) to 70070 or visit the Just Giving page and we will sew a button on for you 

 

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.