Monday, January 30, 2012

A&E and the live-die goggles.

“I've been through Many things in my life, Some of which actually happened”
                                                                                                Mark Twain.


This is a quote I hold dear during these winter months in the face of Winter illness. Words such as these become weird source of comfort when I find myself in situations like I was in yesterday, down at ye old A&E.

And oh, how we love our Sunday family outings there, there's nothing like vending machine coffee and trip to ressus to perpetuate your anxiety levels at the end of a long week.

Beyond the patterned curtains lay great photo opportunities, who needs a cardboard cut out of a theme park icon when you can be photographed with a burns victim or a guy with a cone stuck to his head? No one can accuse us of not leading a full life that's for sure...

I just wish that when visiting this domain I could leave my live/die goggles at home. I choose not to bring them but each time they find me, nestling themselves snugly on the end of my nose, impacting on all my perceptions, against my greater will.

And once those goggles are out, a flea bite becomes meningitis, a head ache a brain tumour. Oh the pity I feel for the medical professionals when my goggles are around.

It doesn't help when, following a triage assessment, we get put on the on the resuscitation bay.

'We're putting you there so she can have a one to one nurse, it's because we're very busy and don't have any room else where'

Well why us? why are we getting the one to one nurse?'

'Because of her history'

'But you just said it was because there's no room anywhere else....it's because of that right? Because of the space issue... right? You're not worried about her are you? Why are you putting her on a saturation's monitor like that...you just checked her sat's. They were good weren’t they?

'You've done the right thing bringing her in and now we want to monitor her'

'What constantly? She was never constantly monitored the last time we were here, does that mean she's sicker this time than she was last time? oh goodness, this time I thought she was at the no- need- to -worry level, we're here for antibiotics..that's all, antibiotics and the 'we're happy if you're happy' talk. That's why we're here!

“I'd personally be happy if you wanted to wait in the waiting room with her, We thought you'd prefer it in here, that's all”

Okay. Good. I'm glad you'd be happy for me to sit in the waiting room.

- no I don't actually want to sit there, but good that I can if I want to. Good that we are well enough. I like it when you say these things...

The paediatrician comes in. her temperature is at 39.1.

 '39.1? That's 102! That's high. I'm worried. Should I be worried?'

 'I'm actually more worried about you than her'

Phew, it's just the goggles thing, she doesn't like my goggles, I can live with that, still I'd better apologise.

'I'm sorry you know...er, it's um...I ...don't like the bleeps they cause me to feel scared you know'

'Please, don't apologise'








I just did. Kinda.



After an hour or so in resus and seven hours in majors...finally we get the 'we're happy if you're happy' talk, and we make our weary way home.

Slamming the car door I carry my Smidge up the stairs, I take of my goggles and I'm tired.

So tired I can't even face a glass of white wine..that's how tired I am.

Even though I only wear these goggles occasionally now, they still ware me down somewhat, you know...
















Tuesday, January 24, 2012

Attachment, Fear and the Neonate - Please Mind The Gap.

Many moons ago, when I was going to be a  * somebody * I studied Psychology at university. I became a keen follower of Bowlby who devised the attachment theory. I think I liked Bowlby's theory because it enabled me to blame any personal flaws or relationship difficulties I had on my mother's nurturing style. This was most convenient and served me well for years, until of course I had my own children, then I started to think his theory was WAY overrated.


Naturally when it became evident that Smidge and I were to be separated at birth, I was worried that the invasive procedures, necessary to save her life would impact on her ability to engage with me and others on a social and emotional level.

This is because according to Bowlby, a child's later social and emotional relationships stem from the mother's (or care-givers) ability to provide consistent and good quality care from birth and throughout the early years.

Anyway, I decided to ask one of the paediatric consultants about premature babies and attachment, to see if I could find out more.

'Actually, what we find is, it's the parent's who have the difficulty attaching themselves, rather than the babies' I was informed.

'What utter codswallop!', I thought, Imagine not attaching yourself to your own baby?! That certainly won't be me! And I toddled off thinking, if that really is the only issue here then I've  got no reason to worry at all.

Fast forward three and half months...

I'm sat in the Neonatal Unit waiting to be called in to a discharge planning meeting, Smidge had just had her last blood transfusion the week before, the result of a 'funny turn' that caused her to go her to go all floppy.

All though by this point Smidge had started to learn to breast feed, I wasn't pushing her as nearly as hard as I could have. The reason? I knew the minute breastfeeding was fully established, We'd be asked to leave the hospital and I was terrified! After four months of being around medical professionals, I was institutionalised. I didn't feel nearly qualified enough to take on the task of caring for her by myself.

A head pokes itself around the door.

'Are you ready then?'

oh no...oh no..they want to talk about the going home thing.Yay...its good...it's good...its the*GoInG hOmE * thing, I'm er....happy, yes, that's the right emotion.
Home? HOME? No we can't go home! what if she needs a transfusion and I don't notice,? What if her stomach gets distended from milk intolerance, how will we xray her? Is it safe not to have a full blood count for nearly two weeks? Think, think quickly think, a reason, a convincing reason to stay a bit longer...

As I took a seat in the meeting room it quickly transpired that my plotting for an extended hospital stay was a complete non starter. The ward Matron smiled at me across the the room before announcing (in no uncertain terms) that Smidge will in fact be coming home at the very latest, next Thursday'

    * Gulp*



Us three months later



















Sunday, January 15, 2012

Hospital Transfers – Weigh less, Worth less?

Another dimension of Neonatal services that I learned all about during Smidge's hospital stint, was the incredulous hospital transfer system, Yes I learned all about what it feels like to have your babies' right to a hospital bed put to the bottom of the pile time and time again.

Happily oblivious to the financial restraints of the NHS, I had no idea it was every day practice to ferry vulnerable and sick babies up and down the country so they (and others) can access the care that they need.

In total, Smidge was transferred five times. What with hospitals these days all being providers of different levels of care, she was like goldilocks with the Porridge, always trying to find the hospital that was 'just right' for her.

By the time she was discharged, she'd completed a tour of the South West, putting in guest appearances at no less than four separate Intensive Care Units.

Each time a transfer was suggested, I would lovingly pack her a little suit case, with over sized nappies, her very own laundry bag and neatly stacked piles of freshly ironed incubator sheets, washed in her favourite detergent..Fairy non bio.

These sheets served multiple purposes for me. Not only was it nice for Smidge to have some level of continuity of care, but it made me feel like I was her Mum.

Another important function that the sheets served, to my way of thinking, was that they passed on subliminal messages to the nurses who were soon to become her carers.

These were the nurses at the other end of the transfers, the nurses I did not yet know and did not yet trust. These were the nurses who had never met my Smidge before, so I had to make a few things clear, through the suitcase of course.

The messages I sent were:

a) Smidge might need your medical support but she certainly doesn’t need your stupid sheets.

b) Smidge is a loved and cared for baby and anyone who comes in to contact with her better do the same.

c)There are routines and standards in place which must be adhered to, and now, you must find out from me, (Boss lady) what they are.

I think these reflections highlight the stressful nature of hospital transfers and the difficulty that I personally had moving to new environments.

Having said that I don't mean to come across as ungrateful, because as it's been pointed out to me many times before, just a few years ago, babies as premature as Smidge wouldn’t have been entitled to any help at all. But none the less, I cannot ignore the fact that vulnerable babies like her are having their lives put at further risk due to the financial restraints of the NHS.

You see, of the five hospital transfers that Smidge endured, Two were put in place not to ensure she received the right care level of care, but to make way for higher need, sicker or more local babies. That;s right, she was booted out, evicted, at less than 2lb in weight ..with feeding barely having been established.

A hospital transfer will take it's toll on any low birth weight baby, and sadly in Smidge' s case, it was all too much too soon and she ended up being referred to yet another surgical unit, once again hours from home. Of course by that point, the 'messages' were getting less and less subliminal by the day.

Any way, all of these marvellous issues and more are highlighted in the fabulous BLISS publication 'Weigh less, Worth less?' which makes a very interesting read, if, like me you've done the rounds!

Thursday, January 12, 2012

You're the Mummy!

People take for granted the experience of going into hospital, having a baby and then coming home soon after, they really do! Okay..so all new parents have to humour the midwife/ health visitor for a period of time but once they realise you’re not a maternal failure or an incompetent idiot, a sort of mutual ditching occurs and all that's left to do is put in the occasional appearance at the baby clinic.

But whilst the vast majority of Mother's appear to move seamlessly from the role of 'Pregnant Woman' to 'Mother of Child' there are thousands of woman just like me who experience a different sort of shift. Yes, I'm talking about the shift from 'Mum-to be' to 'Hospital visitor.'

In the early months, following Smidge's birth, I'd enter the intensive care unit each day to find her lying in the incubator, her features not yet apparent for all the paraphernalia covering her face.

Beside her would be a dedicated guard nurse, overseeing her care. 

Sitting down beside her, I would brace myself for the inevitable progress download before asking if it would be okay for me to touch her today.

That was the start of our bond, but rather than it being an intimate and all encompassing experience that excludes all else, it was a nurse led, risk assessed, machine supported, supervised encounter with V.I.P viewing opportunities.

Even the lightest of touches would throw Smidge in to a state of utter distress, she'd refuse to breathe,set the alarms off and prompt all sorts of unwanted attention. Hardly the sort of reception I had in mind when I envisaged our early relationship blossoming.

Anyway, because of instances like this, nurses play an important role in facilitating the interaction between parent and baby. This of course makes it seem like they are the boss of your baby, a most curious dynamic that I blogged about in my December post 'Im the Mummy'

However as time moves on in the Intensive Care Unit, so do the babies and as they become more stable and Parents become more relaxed, the nurses become all together more liberal about the level of parental involvement. It is at about this time that a second shift seems to occur , the shift from 'Hospital visitor' to 'Mum with baby'

But this does not always come across as a natural and seamless transition, and in cases like mine you can turn up one day and all of a sudden it's like you're expected to be the Mummy!

Yes..no longer do you have to ask permission for a cuddle it seems, you suddenly get a sense that you are now permitted to make ground breaking decisions like weather to change a nappy or wait for it..a cot sheet.

But since the issue of maternal redundancy/role theft is one that is brushed under the carpet, the change in expectations is not always put to you in plain English.

Once you have decoded the unspoken word, one must act quickly to prevent judgement. For if one does not seize the opportunity to do ones maternal best at all times then one is putting ones self at risk of being deemed 'unbonded' or negatively affected by the NICU experience.

I'll never forget, one day, about eight weeks after Smidges birth, The nurse looking after her took me down the corridor and pointed to a wall that had pictures on it  illustrating 'Kangaroo care' ( holding your baby skin to skin on your chest) She started to talk to me about all the benefits, like I'd never bloody heard of it!

'Are you trying to tell me I should take her out of the incubator for some Kangaroo care?' I said, frankly.

'I'm not here to tell you what to do', she said 'Only you can decide that'

So that night I went home and I mulled over our conversation, and concluded that I felt quite offended. It seemed to me that the tables had only just turned on me, and now, after I had longed to take the lead on her care for so long, It was being implied that I wasn't meeting her needs and I was really hurt!

See for me, bonding with my baby wasn't about what I did or didn't do, It was about being the one who decides what to do for the best. It was about taking on the role of nurturer, and nurturing how I wanted to nurture and a little bit of space, to work out how I was going to go about it certainly wouldn't have gone remiss!

What about you? did you have any issues with role reversal when parenting in the NICU? I'd love to hear...







Friday, January 6, 2012

New Years Resolutions Reviewed.

1.Say at least one positive thing a day.
2.Insert Batteries in to Wii fit Balance board.
3.Make family walks on Sunday's a priority.
4.More than one glass of wine a day is unacceptable. Except on fridays. Saturdays...and Sundays.
5.Hot chocolate instead of actual chocolate is okay, as long as its cadburies highlights at 40 cal per cup.
6.Work harder at accepting people for who they are and not who I want them to be. basically, let go of idealism, it only pi**e* me off.
7.Do tea and crafts,don't do wine and facebook.
8.Hold more dinner Parties, be sociable.
9.Set up rota and evenly distribute anxiety related baby health queries between health visitor, Devon doctors and A&E.
10.Eat more sensibly.
11.Purchase Riverford farm grocery shopping Bag, made from organic hemp.
12.Overcome bat/bird phobia and strive towards cleaning out the attic, if not put the ladder away once and for all.