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.

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?!)

Then and Now

Then.

 

I miss looking into your screwed up squished "term" face, seeing glimpses of features yet to come.

I miss your snorting and snuffling through the night: you sounded exactly like a hungry hedgehog in the undergrowth!

I miss being able to be still with you; just watching and waiting for nothing.

I miss your napping, curled up on my chest. Now if you consent or are allowed to sleep on me, you are more lolloping starfish than a little dormouse.

I miss your whole tiny hand being still almost too small to hold just one of my fingers-and I have tiny hands myself.

I miss, in a wierd way, you grabbing my hair and getting tangled up in it. Things I thought I would never say.

I miss putting you down in one place and knowing you will still be there, albeit a bit lopsided in two minutes time!

I miss at least two naps a day.

I miss that utter dependence on me.

Now.

I love it when I carry you around, and you cling on tightly with your fists and wrap your arms around me like a bushbaby.

I love that you have such a personality and a huge range of expressive faces. Even your stuck out bottom lip cracks me up.

I love that you give cuddles back. When you reach out it is The Best. Thing. Ever.

I love it when you try to pull yourself up by pulling on my trouser legs.

I love it when you "bring" me a toy (normally thrusting it up my nose) you want to play with, or better still, want me to play with with you.

I love it when you copy things and do actions. You are so sweet when you hit yourself on the head with a hairbrush ('brushing your hair').

I love seeing you get excited: bet it about the swings, a train, Mr Tumble or coming home after a long day.

I LOVE it when you blow kisses.

I love it when you curl your fingers around mine.

I love that your understanding is growing each day.

I love that you are such a daredevil and scared of nothing (except possibly eating and our friend Leila's hippo torch).

I love it when you are with other little children and I can see you trying to work them out. And then trampling on them-must sort that last bit out.

My Little Princess

I don't think Wriggles is particularly patriotic. She consented to wearing a red-white-and-blue dress (it was one of the only clean items of clothing) but this photograph captured the split second before she threw her crown, lovingly hastily cut out from cardboard and stapled, on the ground and promptly sat on it.

I am not normally very patriotic or royalist. Normally I am a bit on the cynical Scrooge glass-half-empty side of the table, but since having Wriggles I have lightened my mood and taken pleasure in the small things. One of which, is people being nice to each other. Actually, maybe that is not a small thing. There are some very depressing things out there and some very aggressive events, so when a community or group of relative strangers get together for the day and bake cakes free of charge and swap stories, it is really rather magical and refreshing. It might all sound a bit twee, but having gone to a street party this weekend I am fully signed up to the Nice People club.

My parents and grandparents have long lamented the loss of community, and despite growing up in a relatively small, quiet and pleasant village, I can't say I have many memories or much notion of community. I am ashamed to say, I don't know the names of one set of my neighbours and can count the number of conversations had with with on one hand. Community seems rather lost in today, at least where I live in a city suburb. So it was a wonderful surprise to see a street filled with people making merry, with all ages represented and even sulky teenagers looking marginally less sulky for the day. Families, singletons, friends, strangers...there were all there and all sharing together. 

Now that is something to remember.

Happy Memories

Letting Go

As silly as it may sound, I am afraid of letting go of the past. Despite the pain and disruption that neonatal and PICU have caused, I am scared of forgetting them and moving on. They are such an important part of our lives and whilst caused unimaginiable hurt, they also made me intensely grateful and changed the way I look at things now. They are so integral to Wriggles' journey and health, how can I just write the experiences off? How can I move on when they can loom so large?

Because things are different now.

Because this:

Is not this:

How did you get that big?

Human biology really is incredible. Two years ago I was hosting a cluster of fast multiplying cells. Today I have an energetic genuine human being crawling around and giggling. How does it happen? (Now settle down; I know how it happens, I do not need reminding) But how does one moments, one event, one relatively very small period of time, one meeting of people who may be very close or may barely know each other, how does that suddenly become another entirely different human being? How is it allowed without fireworks, a fanfare, something magical to mark that a new creation is taking place? I often wonder about it when I watch my daughter. I could just watch her all day, discovering new things. She has just worked out basic shape sorting and stacking toys and her new favourite game is "putting things on grown ups heads". It looks like she is trying to sock you in the eye with Rabbit; she is actually trying to give you a new hat. But how did that come out of something that seemed so insignificant at the time? When her father comes to visit, I often wonder if he thinks it to but isn't brave enough to say either. How did we, now so separate, make a truly wonderful person not just with ten fingers and ten toes but with a cheeky personality, a mind and a set of thoughts all of her own?

The Fear.

I don't really want to write another down hearted post again after yesterday's weigh in, but Wriggles has got a sniffle.

I know, I know. About 90% of babies and children and a large population of adults right now have a sniffle. If it is not one bug, it is the other bug doing the rounds. Basically, it's still technically winter and everyone has the lurgy or if they are lucky, is just getting over it.

It has been months, five long months in fact since the last bug. But hearing her snuffle and cough is enough to set my adrenaline cursing round my body and reaching for the holdall which I have always used as the Hospital Bag. On autopilot, I reach for the phones to check they are charged and that I still have the out-of-hours doctor and NHS Direct stored. I panic; have I got enough cash for a taxi just in case? Last spring to autumn I always had spare money in the house as bundling an ill baby into a taxi headed for the nearest A&E became a weekend hobby. I knew the postcode to the doctors surgery by heart and could recite all medical history and current medication in seconds.

Kangaroo Care

One of my biggest regrets about Wriggles' stay in NICU/SCBU was the Kangaroo Care, or rather lack ok it.

Kangaroo Care is essentially skin-to-skin, and consists of popping a baby down your jumper or similar. If you want to fast-track your relationship with a nurse, this is a great way to get them fumbling around your bra as they rescue little limbs and caught up wires. You won't feel shy asking for help after that with them! Depending on the gestation and size of your baby, they may still be very small and likely to potentially get lost inside your clothes. The first time I did it, I lost count of the amount of times that poor Lisa, the nurse, had to rescue Wriggles from inside my dress. She would have been about 30-31 weeks and was still a titch. It very much improved my relationship with Lisa though!

Kangaroo Care has many great benefits for premature babies; the heat from the parent's body means that they do not have to struggle maintaining their temperatures thus saving precious calories, deeper and longer sleep can be established, it is comfort and security for both parties,

De-Cluttering

I am having a clear-out or clear-up.
I have always been a perpetually messy sort and I am slightly ashamed to let people into my house.


I find sort-outs quite therapeutic too and a little trip down memory lane, finding parts of you that you might have forgotten about. I have a (very large) memory box where treasured birthday cards, postcards, rambling letters and funny post-it notes from friends go. I also have the only physical token of my albeit brief courtship with Wriggles' father, when on our first date after a few glasses of wine we decided to compare handwriting on a scrap of paper. Funny the things you keep. When after a while he disappeared into the ether, or at least, stopping calling me, I meant to throw it out. Now I'm quite glad, not because I have particularly sentimental feelings about or for him, but that there is some evidence that we at least met in a not-just-procreating sense.


Amongst my mountains of things, I also have like every parent, A LOT of baby items. It always amazes me how one small person can take up so much room and acquire so many things in such a short space of time. But acquire they do! And grow, relatively quickly. I now have amongst other things a baby-seat, a moses basket and rocker, a large pram, a sling, a slightly faulty pushchair and a baby bath as well as probably hundreds of clothes, ranging from premature sizes up until 6-12 months. Some is millionth hand already, but most of it is in pretty good condition. And it is taking up room. I have already sorted out some things which have gone into a memory box for Wriggles, and kept first tiny gloves and favourite jumpers, but I am still left with a multitude of things and no one small enough to use them. Recently I began working with Tiny Lives and their Nearly New sales that raise money to support the neonatal unit where Wriggles spent the first two months of her life. In the past I have donated and sold items that I had no use for, and now I am wondering whether it is time to clear out other bits and bobs that I simply have no use for anymore. Many things have had a lot of wear as Wriggles was and is, still a titch, so over the 17 months or 15 that she has been at home with me, she still uses many things more suitable for a 9 month old. 

Finding the Perfect Gift

My best friend from university has recently found out she is pregnant and I am delighted for her. Her little bean is due in June 2012 and in the mean time I am trying to find the perfect present. She is cautiously waiting until 24 weeks (viability; Wriggles' premature experience has made her walk on eggshells) before shouting it out to the world who hasn't already guessed, but they are keeping the gender strictly under wraps.

I think this is really quite a nice idea; so many newborn or indeed any baby items are so gender stereotyped that it seems like a special challenge to find a really lovely present for a newborn. No pink! No blue! And we all know that lovely as white is, beautiful and pure, it is the least practical colour for a newborn. I imagine that family members will overdose on teddy bears (it seems to be some divine law) and given that as a shattered new parent you can only muster up so much polite excitement about novelty sloganned bibs, I really want to find a longer-term keepsake. Also, I remember selfishly thinking when Wriggles was born that it would be quite nice to dress my own daughter some days!

I have narrowed it down to a few things and I may well try and "road test" them first as I personally am quite enamoured with them!

• "My Life Journal" by Suck Uk. Essentially a 100 year diary, this is a beautifully bound scrapbook that is split up into year with each year separated by seasons with pockets for photos, keepsakes and special pictures and awards. There is a world map so you can mark everywhere you lived and went on holiday, a body map to chart bumps, bruises, war-wounds and tattoos and many other things to mark off. It sounds a lovely idea to fill up and take over from your parents as you grow older.

• I am a little obsessed with Folksy and saw this amazingly cute Memory Make Stegosaurus , by Molly Moo and Jessica Too. It is simple: you sent them some sentimental fabric, and they craft a cuddly dinosaur from it! Who doesn't like a dinosaur? This may need some consultation with the expectant parents (I imagine nabbing my friend's favourite jumper will not endear me to her..) but there are so many possibilities of making a really personal present.

• Then lastly is this photo book by Sassy, which I must confess has already lured me into clicking "buy"! (Why Amazon, why? Internet shopping just does not feel like real shopping. Dangerous) The 'Look Book' is a photo album for babies, made out of sturdy boards with bright colours and some texture, it has 7 pockets to put your own pictures in. Apparently the handle also doubles up as a teething ring; genius! Well at least it looks genius-we shall soon see!

Growing up: Wriggles in Review!

It's that time of year again, spring cleaning my frankly horrific flat. In a delayed New Year state of reminiscing I have also been getting very nostalgic, not least as I've been boxed up grown-out-of baby clothes and coming across things still packed up from the last move, in April 2011. So to start the year off (again. Yes I do realise it's now 7th January not 1st) I am looking back at Wriggles' life so far and how we came to this point where we are.

The past 16 months have been very high and low. It has been a real struggle sometimes, so completely not what I expected with your first baby. I'm pretty sure this is true for every new family, but on top of this I have emerged with a wealth of medical knowledge and can hold my own in a doctors round. My mental "fog" is now much clearer than it has been. I'm not sure whether the past muddle has been PND, Post Traumatic Stress or a mixture of both, flitting smoothly from one to the other, but it has snatched memories I will never get back which makes me very sad. I am proud of where we are now: not least because I got here in the main part on my own.

As I have been clearing and sorting, I've been reflecting on what physically is truly precious to keep. Answer: not much. However there are some special things like any Mummy that I will treasure forever. Favourite tiny outfits; cot sheets that smell of baby, or at least baby scented washing powder... My most treasured possessions of the physical variety stem back from our time in Special Care. I do have things which mean a lot pre-Wriggles and more recent things, but the one thing I would be bereft of is a pink box (above). This was collected whilst in SCBU and the box and yellow diary were gifts from Tiny Lives, the charity attached to our unit that fundraises for life-saving new equipment and provides vital family support. 

In this treasure trove are the following: diary of our stay, Wriggles' hospital band, my hospital band, the information sellotaped to her cot, some prem-baby socks never worn, her blood pressure cuff, the photograph that I slept with all the time she was in (so it was the first thing I saw in the morning and the last thing at night), the probe which conducted her oxygen sats traces, her first dummies and her first (well not literally first; replica of) nappy.

It is so easy to forget how small she was. Born at 1090g (2lbs 5 and a bit oz) at just under 28 weeks gestation, she was not a lot bigger than my hand. Maybe head to toe she was two small hands long, maybe just under. She was, and this is crass to compare, about the size of a handpuppet. I don't know why it is so desperate for me not to forget, and we all know size isn't everything, but these physical reminders bring it back like yesterday. Our journeys make us who we are, and SCBU strongly shaped the early days of our lives and later ones two. Any ongoing issues now are put down directly to prematurity, so these objects from the 'beginning' are very precious for me. They make up for the absence of what I ideally wanted for my newborn. I do have some happy memories of SCBU, first cuddles, brief attempts at kangaroo care, days spent by the incubator, watching her grow and the privilege of seeing what would otherwise be a developing foetus but it is the stark reminders of the reality rather than the New Baby! cards which mean much more to me.

 

Images: 1. first dummy next to standard 0 months + dummy 2. first nappy next to newborn sized babygro, which finally fitted Wriggles somewhere between 4-5 months! 3. Look how far I've come!

My other precious object is not in the box because it is in the photo-album. It is the first picture ever taken of her, in NICU (Neonatal Intensive Care Unit) on the night of her birth shortly after she had arrived at the unit from a&e at a different hospital. She is battered, bruised and bright red. Her skin is see-through and still smeared with blood, only one eye had opened and there is a slight perferation to her chect. There are ECG leads on and a tube attaching her to a ventilator. It is not a pretty picture. But I love it. It gives me back what I wasn't there to see. I couldn't hold her hand but it does give me that piece of history to hold on to.

A Year

What a funny old day. After a fairly standard Sunday morning at home, a game of Peekaboo got rather out of control resulting in Wriggles having a coughing fit following manic laughter which resulted in vomiting blood. Oh dear. And so off to a&e we trundled on the advice of NHS Direct. I was all for sitting it out but apparently these things can be serious....spoilsport.

It was bizarre walking into the emergency department. It is one I am unfortunately on good terms with, having made numerous trips over the last ten months with a sick baby (this makes her sound like an invalid It isn't true; she may require frequent prodding by the paediatric team but she is far from an ailing waif. It takes all my drama skills to convince people I am not fibbing when they ask what we did at the weekend and my reply is going to hospital). It is also where I was deposited shortly after I had given birth, although I had never given this a second thought on previous visits. It must be the recent anniversary, by which I mean first birthday, that made this connection. 

This time we had a relatively quick whizz through. By the time we saw a doctor, I had possibly the world's cheeriest baby happily trying to take home the stethoscope and eat a cardboard bedpan. Although in two minds, we have been released home, on the condition I watch her like a hawk even more than usual. Forget eyes in the back of my head, I need them side, centre and up my legs! It is most likely a burst blood vessel in the oesophegus probably connected to reflux episodes. Phew.

The most annoying thing was when you have to go through all the medical history and recount the birth story. At just over twelve months, apart from being 12 weeks premature, how she was born seems far less relevant. I don't discount her NICU experience will more than likely influence doctors concern or lack of, but her first minutes? More than anything it is a raw nerve as her birth ellicits a mix of emotions for me. Lashings of regret for her prematurity and having to fight when she should have been cosy, remorse over the mess I created for my precious first born, sorrow for what she (and I) went through and a very, very deep shame and humiliation for the circumstances of being the One Who Didn't Know. I am all too aware I was hospital gossip for a while-on one of Wriggles' chesty admissions I met a nurse who excitably exclaimed when taking notes "It's you!!!!". No, not a long lost friend-it turned out her friend, who's housemate's cousin or suchlike was working on one the wards I passed through on the birth night, had been intruiged by the drama of the story and it had been the staffroom tale of the month for weeks. So much for laying low and coming to terms with it!

It is hard to believe it is now over a year-something that I will probably return to again and again. As I watched Wriggles charm the pants off the medical team, I thought again how incredibly lucky we are. Recounting all the gruesome details of birth-PICU reminded me that my poor baby has had to work much harder than the average baby. Not that she looks like a 'poor baby'; the invalid was happily trying to pull out the consultant's arm hair.....