Thursday, August 23, 2012

The Loneliness Of NICU.

It's strange because you can have the most well meaning of nurses looking after your baby, You can have the very best of doctors  leading their care, You can have the most supportive family in the whole world and yet  still you can feel so incredibly alone when you have a  baby in intensive care.

The issues that caused me to feel isolated were things I didn't want anyone else to know about, they were deeply personal to me and even the slightest suggestion that others' had cottoned on to 'the inner me' had me flaring up inside with anger and resentment.

The problem that I had was, there were two sides to this  Premmy Mum. There was the side that went in to the NICU each day and put on a performance. The performance that  everything was good, fine and dandy. The side that sat along side the incubator trying to find words for a foetus that couldn't be touched, couldn't be held,couldn't be heard.

Then there was the secret Mummy that was heartbroken. Heartbroken because what she had wasn't what she had planned, yet she knew she was lucky to have a baby that was hanging on in there fighting for her little life.

And this Mother, the heartbroken one, could not bare the idea that she would be perceived as unbonded, disconnected or uncaring. Because she wanted that baby to live so much. Nothing in her life was more important or more crucial than that very thing.

So when, after a week a nurse held up a small premature baby nappy and asked me if I wanted to change Smidge, I was deeply hurt and offended.

'I don't need to change a nappy to connect with my child' Said the Heartbroken Mama with in.

'I'll change a million nappies when I get out of this place, and I'll sing to her, and I'll rock her and do all of the things we can't do here and we won't need you, bossing us about or leading the way, not now and certainly not then'

But the NICU Mum Smiled politely. 'You do it' she said sweetly.

The nurse nodded her head with understanding. She thought I'd declined because I didn't want to be involved, that I wasn't 'ready' to care for  Smidge.

I was ready.

I never stopped being ready.

I wasn't ready for 'being allowed'

I wasn't ready for 'being permitted'

But always,always I wanted to do my personal best for her.

But when staff came in with all their guidance and schedules, I didn't feel I was doing my best. I didn't feel I was being a Mother at all.

Which is one of the reasons I think this publication by Bliss is so important.

This booklet explains everything to Parents. In a nutshell, it tells them how they can learn to read their baby's cue's so that they, the parents may make informed decisions about  how to interact with their babies, when they might 'like' to be touched or handled.

And because this publication is written as though it is coming is from the  baby, it is disarming, endearing and empowering to Mum's in this situation.

I think these should beside every incubator as standard.

Eighteen Months down the line and four NICU's later, I think a great deal about what I was encouraged to do as a parent. There is no doubt at all that leading  the care of your baby helps the bonding process and affects the attachment relationship.

But NICU's vary hugely in their approach to how this is managed. Some unit's are very 'precious' over the babies with nurses leading the care in all instances. Bizarrely it was being in the two level 4 surgical units that enabled me to get more involved with Smidge, which was ironic because it was then when she was at her most unstable.

I'll never forget walking in to the surgical unit after Smidge was transferred. There was a big notification up on the wall. It read:


It was music to my ears. Finally I could choose! Finally I could start being a Mother.

So If the sickest babies in the country can be cared for by their own parents.. Why can't all unit's commit to the same principles?

Monday, August 20, 2012

Waft Play

Well readers, It has to be said that the summer months have been kind to us so far.The absence of hospital admissions and lack of weirdly convulsing offspring has not gone unnoticed and what better way to celebrate this healthy breakthrough than a trip to the local germ fest soft play centre?

Yes you heard me right, I said soft play centre and check out this pic, it's my Smidge looking at a real boy.

Until this latest attack of 'must-try-and-be-normal', Smidge was starting to believe that other children only exist in two forms.

2D (story books) or 3D (on screen animated), So this here Premmy Mum has had to take emergency measures in order to restore some sense of normality.

How it happened:

I awoke one morning to the chirpy sounds of  Smidge lobbing soft objects out of the cot (presumably to provoke some sort of motion from yours truly) and suddenly and without warning this weird thing washed over me..

It wasn't emotion (good god no..) It was more like a thought process with the potential to lead to positive outcomes.

Thats it... Optimism.

Anyway, this optimism tried to convince me that soft play would be okay.. especially if we got to the centre early, before any germ ridden children put in an appearance.

Seizing the moment and packing a bag in record time, we arrived a little before 9am, Why, the doors had even opened.

Cool, only one granny standing outside with her apparently chicken-poccless/ non spluttering grand children.We go over and wait in the queue.

We are stood  there for a minute or two before Granny initiates some small talk,which is fine but then she utters the most disheartening sentence...

'Great offer isn't it?'

'Offer?'  I say, with a paranoid sceptical look on my face.

'Buy one get one free if you're in before 10.00am' says Granny.


The place will be swamped. More kids, more germs. Damn that buy one get one free offer.

Bit it's too late to back out now. An excited Smidge is already peering through the glass door exclaiming 'Ball!' 'Ball!' ..over and over again.

So we enter the germ fest, anti bacterial wipes on hand, a defeated look on my face as I  reluctantly accept that the  possibility of wiping down 2000 balls is looking less and less achievable.

Smidge wonder's fourth and it's not long before shes in her complete element, climbing,tumbling, throwing balls and babbling excitedly, all the time reminding me repeatedly that there are balls.

Ten minutes in and I'm thinking 'well..she gets so much out it, look at her little face *oh the Joy* etc..etc..'

But then I smell something.

Then I get the waft.

It can not be. I tell myself.

But low and behold, I appear to have mopped up someone else's vomit with my jeans! Scooping Smidge up,I speedily vacate the premises to drive home and get changed. It's only then that I realise that we left her shoes behind.

'What were the chances of that happening?' said one day Hubby.

Pretty high actually.


Wednesday, August 15, 2012


I've always been a bit a bit slow  meeting life's vital milestones on my journey into adult hood. The parents were always on my case...

At fifteen it was 'When are you going to get a job Leanna?' 

At twenty  'When are you going to get a drivers licence?' 

and from twenty five 'When are you going to buy your own house?' 

So I got the job, (or had the job I should say ) I sluggishly passed the driving test aged a feeble twenty five and all that is left before I consider myself well and truly en-drenched in Babylon is the mortgage.

Well one-day Hubby and I have always been lucky to have a rather nice, very big and virtually secluded *rented* home. We sort of fell on our feet you see, about five years ago, when a friend was moving out of her totally amazing house. She didn't have to tell us twice, we moved in the following month and we have had over five happy years here.

There's been chickens, There's been plums, there's been puppies and there's been bloody awful central heating that you couldn't turn off if you tried... and of course, there's been Smidge! 

But Babylon will wait no longer.

Babylon beckons to the materialist with in. So this here Premmy Mum has been scouring the markets, looking for a home for the family and me.

I've met a few estate agents... A funny breed arn't they? And in general I've found this house shopping malarkie really brings out my bi-polar side.

 It goes like this...

I see a house. I look at the photo's.I like it.

I consider the area, the pros the cons, I look at the photos again.

Quick!...a creative vision is coming! gets on the Ikea website without delay! living room inspiration takes centre stage on the screen..creative vision confirmed.

It's all worked out. 

I know where I'm putting the sofa. 

The one I'm going to buy from dfs because although slightly more expensive, it will last longer than the one from ikea so overall will work out to be better value etc etc *enters manic phrase simulating Stacey from Eastender's*

Goes to sleep dreaming of decor schemes, goes to sleep plagued with thoughts about weather shabby chic is tacky or not...!?

Wakes up in the morning, phones up agent... 'I want that house on the website!'

'Well can I take your details madam?'

'No! I don't want to bore myself silly listening to the sound of my own voice telling yet another agent my details, nor do I wan't 400 emails a day or voice mail box full of crap...All I want is that house!....'

'Can I have that house?

'Which house?'

'House listing number 4356,  on your website!'

'Oh no madam...that's under offer I'm afraid..can I interest you in this other property, a one bedroom flat in a popular residential area....?'

*Sigh* Back to the drawing board.

Tuesday, August 7, 2012

Anxiety And Feedback - A Very Fine Line

I don't know about anyone else, but when Smidge was going through NICU it felt to me like there was a very fine line between making a point known and being perceived as 'not coping'.

See if you're anything like me, then you'll like to take a view on things, particularly on the care of your own  child, After all, that's what being a parent is all about isn't it?

But what if being a parent, if looking after your child (or taking a view on their care) feels like a risk? A risk that you'll insult someone, upset them or turn the old apple cart... so to speak.

And does speaking up about things  make you even more vulnerable at an already hideous time?

This, to my way of thinking, is one of the many spins on parenting that one-day hubby and I were not prepared for, one of the many obstacles we had to over come when trying to care for our Smidge.

Little things.

Things like staff going from one baby to another and not washing their hands, or giving  Smidge milk that had not been warmed. Comments about how anxious I looked,  Or how much less-anxious I looked - they irked me, and practically eVeRyThInG  highlighted my lack of control, my inability to move forward in my role as Mum.

Mentioning these things though, actually speaking up, was like seeing a train pulling into a station at quiet rural location. It lets out a loud, long predictable screech and everyone turns their attention  to that particular area as the microphone announces 'The train has arrived at platform one'

Or in my case 'The Mother at bay six has made herself known'

Followed by 'Please be careful when entering bay six'

Of course this is all about how it felt. How seriously staff take parental concern and to what extent parents are deposited in to the 'stressed out parent box' I couldn't actually say, and it would be unfair to say that any concerns I had were not addressed in the most humane way possible.

 But actually speaking up? actually taking that step...when they were looking after my baby..

 that was the hard part.

Sunday, August 5, 2012

You Know Her Best Mum

When I was handed my BFT (Big Fat Termie) all those years ago, I didn't know it, but immediately I became an expert mummy. I knew him you see, better than anyone else, he'd been growing inside me, wriggling around. For months I'd monitored his movements, felt him growing big, healthy and strong.

He was placed on my chest with in seconds of delivery, and there he was before me, a slightly blue, prune like bubba with a darling little face staring up at mine.

He was a colicky little fellow, wanted attention constantly. He was rocked, patted and pushed but over all I had no concerns about his health, why he was a baby, my baby, so surely I would know if he became sick, needed help or medical support.

Like all new mum's I worried a little. Worried when I laid him down to sleep at night and I would check on him regularly, but if he was awake, active, grouchy or wriggly I was happy with that, I  trusted my instincts totally.I fully believed that I would know if there was any problem.

Eleven years on and little Smidge was born, being under a general anaesthetic at the time I was oblivious to her state of well being. I was by far not the first to meet my little girl, in fact, other parents visiting the NICU laid eyes on her long before I did.

When I caught glimpse of her lying in the incubator, her face the size of a tiny jaffa cake,the wires and tubes in all their abundance concealing her tiny body, I felt like I didn't 'know' very much really.

As time went by, I got to know what the various machines were telling me, but I didn't 'know' her, not as I wanted to know her.

Do you know what it's like to have your relationship with your own child almost completely defined by a monitor?

"Oh.... you touched her and she desaturated to 62" The monitor would laugh.

"She doesn't like that........ she doesn't like you."

But hang in there mummy because she might, (and it really is a might) live to like you one day.

So that was the very early days.

And of course, in the days and weeks that followed, the nurses showed us how we could care, sometimes.

Sometimes we could change her nappy.

Sometimes we could wipe her tiny mouth with a little patch of gauze.

And sometimes, on very special days, when everyone agreed and when the monitors said so..

We could have a cuddle.

In between these rare moments, there were charts,teams,transfusions,alarms, pressures,masks,prongs,evaluations,medications,investigations,transfers,more doctors, more teams, more treatment plans,more monitors,wires,tubes,devices..

and then would come the old neonatal catch phrase..

'You know her best Mum...what do you think?'

No, I really don't know her best.

'How does she seem to you?'

She seems like a very sick baby. a very sick very small baby..who has always been very small and very sick.

Will she 'like' me soon?