Thursday, March 29, 2012

Battleship Live

The first Neonatal Unit Smidge stayed on was only twelve months old. It was situated five floors up in a state of the art building.

Thirty meters along a pale blue corridor you'd find the centralised staff reception area which was encircled by a large curved desk. In the background monitors would bleep high tones of varying speeds and frequencies.

If you swiped your hand over an illuminated sensor, the doors to the intensive care would swing abruptly open. It was very cosmic. So cosmic in fact, each time I saw that large rounded desk I was half expecting captain kirk to pop up and declare the status of our space craft.

Like a space craft flying through the night skies is how I remember it....and on our journey I encountered whole new sorts of species that I never knew existed.

Aboard our ship you'd find the very accomplished. These were the consultant Neonatologists. Very much the captains they strided the hospital corridors with confidence and pace. As experts in command, they prefer to keep their communications brief and to the point. Pleasantries included short curt smiles and occasional nods of the head.

Second in command were the registrars and the SHO's. As doctors they were knowledgeable and more liberal in their communications, But their toned down uniform and hierarchical positioning meant they often came across as learners, lacking both the conspicuousness of a consultant and the elegance of a nurse.

Next were the Gliders, these were the nurses, the native breed who appeared the most adept in these realms. They moved around the craft with warmth and grace, carrying out instructions with care and precision.

Finally there were the parents, the hostages, the ones who didn't want to be there, the ones who were stuck, lost and scared. They would try desperately to expand their knowledge base at quite rapid speeds in order to find a role, a purpose in this ski -fi reality.

Bunched together the hostages would try to determine what what was going on, what was the meaning of the various terms, risks,lingo and procedures..

Their vulnerability transcended the every day structures that bind groups together.

Class,Gender, Age and Ethnicity.... It didn't matter a hoot.

We had stuff in common, Our dreams had been shattered, Our futures were uncertain and we all wanted for the exact same thing...

A safe landing.

Saturday, March 24, 2012

Happy would- be Birthday Smidge (12 months corrected today)

This time last year it was Smidge's due date. The day that, had everything gone swimmingly she would have made her entrance to this world. As it was, we were still in the hospital, her discharge had been delayed due to a late diagnosis of stage 3 retinopathy of prematurity. It was nothing that a little surgery wouldn't fix but it did mean that an extended stay was in order.

I wasn't going to let the day pass without celebrating it though, It was a massive achievement for Smidge to have reached her due date after spending one hundred and thirteen days in hospital and despite the set back I considered it a real milestone.

I dug out all the congratulations cards, (likely sent with some scepticism several months before) and hung them all around her cot space. It was looking like I might get a take home baby after all, a cheerful yet terrifying prospect that had me biting down on my bottom lip so much it actually caused me ulcers.

Today, a year on, I ask myself... Have we have moved on at all from the experience? 

Well Smidge definitely has, She is every bit the thriving baby and to see her today you might never guess the start she's had. (the head scarves help with this)

Today she plays, she crawls, she cruises, she shout's 'Get out' at our German shepherd dog, whose at least twice her size. All in all, she does everything you would expect of a baby her age and  I couldn't be more proud, or brag less often, even if you paid me.

On the emotional front it's probably fair to say I've been a bit all over the place (even without the wine) but I'm trying to see it as a natural part of the recovery process. It's taken nearly a year to get out of this 'being strong' mode, and although I've been able to talk about my experiences, it's only been the last few weeks that I've been able to embrace the emotional upset in all  it's entirety and have a good old fashioned cry. Thornton's have had more than their fair share of money out of me through out this period and my poor jeans are now begging me for mercy. 

It couldn't be a more beautiful day outside to mark the occasion that never really was, It's a day for planting flowers in the garden, Something I didn't have time for this year so I'll probably go to garden centre and pick up a little something that was grown in a plastic box that will later blossom at home...

Just like my Smidge.

Thursday, March 22, 2012

A Glossy Magazine Article? - Not This Time Matey.

Sometimes I wish I was an annoynomous blogger, that way I could be much freer with my words,I know it's hard to believe I could actually be freer, but the truth is, I hold stuff back.

At the moment 'Diary Of A Premmy Mum' is linked up to my facebook account. It publishes every post automatically which is most inconveniant when you are trying to undertake a new identity as a Secret Premmy Mum. So the new plan is, not to add any new friends to my Facebook account. Facebook account? What Facebook account?

Today, Smidge and I attended our first group under our new Alius, on a mission to get Smidge some party invites, to make up for the ones we didn't get from our Post - natal group. 

All in all it was a sucessful day, I met a couple of Mum's who seemed friendly, one even asked me to join her at another group tomorrow which is what I would call a result.

During a bit of small talk, one of the Mum's asked me how old Smidge was, I answered quite broadly, saying 'She's one' before flashing them a nice proud smile.

When they asked if I went to any other groups, I didn't mention the secret society Premature baby group I go to. Such a disclosure would only prompt more questions. Before you know it, I'll end up being the walking, talking glossy magazine article again that everyone points at before announcing how many other prem babies they know, who are, by-the-way, all fine now. * yawn *

Once the prem status is revealed, the questions follow suite and It's not that I mind answering them but what I've found is, people don't always like the answers I give, I guess I'm still learning what is 'too much information' for people and to be honest, I find it hard to empathise with their cause, so it's probably best we dont discuss what happened at all.

The only thing that could expose us now is being spotted by someone with a trained eye. Yes I'm talking about (and oh how I hate the term..) that 'prem look' that Smidge unavoidably aquired during her stay at NICU.

Lying in an incubator when you should be floating in a womb somewhere does appear to have some knock on effects. One of which is famously known as the old 'Preemie head' also referred to as the toaster effect. (Although I never quite figured out why)

The other premmy trait that came about as a result of Smidge's  prematurity was her Si-pap nose. Smidge loved her Si-pap machine (a device that supports breathing and lung development) and the mask that was so firmly strapped to her face meant her nose got a little squished, resulting in a cute button like effect.

None of these traits are obvious to anyone who hasn't known a prem baby. To me, these characteristics are all a part of her beauty and symbolise her strength. In few years time they will disappear completely, but for the intirum period, whilst trying to bag those invites, any conversation around prematurity must be avoided at all costs! With this in mind, some emergency measures have been introduced....

So, when I go to tomorrows group,on the outside, I'm going to be an every-day Mum. 

I'm going to talk about   the buy- one get- one- free offers and possibly even engage in a debate 'Huggies verses Pampers' perhaps.. 

But inside I'll be prouder than proud that I have strongest, toughest and most beautiful baby there and no woman prancing about with a matching changing bag is going to change that.

Wednesday, March 21, 2012

Too Prem To Party

As a live-in boarding school student I grew up around girls. We slept in the same dormitory,went to the same school and shared most of our weekends together. Perhaps this is why I've always enjoyed female company and love all things girly.

I guess who 'the girls' are have changed over the years, I've moved a few times and made new friends but I never forget the good times I've shared with various sets of lovely ladies at different points in time and am lucky that many of these women are still in my life today.

When I found out I was expecting Smidge I looked around for  friends who were pregnant  but not a sausage! They were all long since done with their child bearing years and I just figured I'd have to get myself some new girly friends who had babies too of around the same age.

Well I told you how that went, in this entry here, where I blogged about my experience at the post-natal group, but at the same time I knew that perhaps I was a little over sensitive, having just left hospital after a four month roller-coaster ride.

I knew as well how important it was to get out there and socialise, not just for me, but for Smidge too, to help her  learn, develop and to benefit from interacting with other babies her age.

After the initial six formal sessions, the post natal group continued to meet informally on the health visitors advice, and 'The girls' would meet for lunch every two weeks.

I went along to a few but then it was decided they would meet to go swimming, an activity that is not recommended for vulnerable babies. I did say this but they decided to make it a regular activity,until eventually they just met at the pool, how very inclusive.

Anyway, it was no great loss I thought, I'll just go to some other groups, structured ones, where I dont get asked awkward questions like 'how old is she?' and have to answer 'Oh she's twice as old as your baby, and yes, I know she's half her size'

So I started to take her to the local library because Smidge loves to sing and shake her instruments and we enjoyed many sessions there. Then one day, the post natal group started coming there. Well, fair enough I thought, not elated to see them but always polite and sociable.

But friday's  weren't the same after that as I was already feeling like an outsider but this last Friday, the worst EVER thing happened....

Well maybe not the worst ever thing, but a truly upsetting occurrence, The post natal ladies started openly talking about the first birthday parties that they were all throwing for their babies. There were three parties in total and all the babies were going to each others but Smidge was not invited.

 Can you believe it? SMIDGE WAS NOT INVITED!! Well I'll tell you what kind of a party that's going to be, A crap party, that's what!!

Well, I guess i'll take that as my cue to find some new friends at some new groups... and this time I'm not even going to mention that my Smidge was really prem because although I'm really really proud of her and how far she's come, she is now at an age where she doesn't need any special allowances and I guess I've learned that lending a bit of emotional support is just a bit too much like hard work for some Mum's.
Furthermore, once I get to these  groups and make three million new friends and one of those post natal mum's strolls in looking to widen her social network, I wont be holding back on distributing my party invites!

I know I'm being childish, unreasonable and pathetically immature, but do you know what? Today it really IS all about me.

Tuesday, March 20, 2012

Anxiety +++

When I was on the Neonatal unit I saw some very brilliant examples of good care from the various doctors and nurses. Having spent most of my adult life working in and around the social care sector, I was all the more inspired by the people I met, who took such great care of Mother's like me. In between traumatic moment's I was taking mental notes, vowing to learn from these people and become a far better/more empathetic professional when it was all over.

In my unfortunate  state everything they did seemed to be amplified. If a member of staff did something nice, it wasn't just sweet of them, it was AMAZING of them, and likewise if there was something I didn't like it was a case of HOW DARE THEY?!

I think its a combination of many different factors that prompted such extremism on my part. The hormonal changes, the fear, the joy, the absolute unknown. Needless to say it's a really emotional time and that's before you even get started on the up's and downs of your baby's health.

Those of you who have read my pregnancy story will know that one of the things I was thoroughly unhappy about whilst being an inpatient on labour ward was the idea of being branded 'anxious' by the midwives. That's right, I seethed at the jovial jottings of the labour ward nurses when they would mark my notes with comments like 'Anxiety ++ or Anxiety +++

But scowling at their scribblings was never going to be enough and I couldn't settle until I had openly declared them totally unqualified to deem me anything other than pregnant.

See to me, It felt like I was being judged, that there was an expectation for me to be coping in a way that was different to whatever it was I was doing.

And okay, yes I did ask them a few questions, Okay more than a few questions, and perhaps the same questions several times over before asking another person exactly the same thing but hey! I was five months pregnant and hemorrhaging a pint of blood at a time for goodness sake!

Anyway, my report card pregnancy notes followed me in to the Intensive Care Unit after my Smidge had been delivered. 

Overwhelmed as I was, at first I didn't want to know a thing. I couldn't take in the words of the Doctors. I was mute.Yes me, Muted by a Doctor. But sadly it didn't last for long. After a week or so I was back on top form with the questions. Question after question after question.

There was little anyone could say or do to reassure me. It was because nobody would even dare to suggest Smidge might see the week matter how much rephrasing I did!

One thing I could rely on though was the old commentary.

Anxiety +++ Anxiety ++++

Stop taking those stupid notes and tell me my babies going to be okay damn it!! Gee's I won't hold it against you if you are wrong! I will thank you for bringing me some relief.

One day, on a bit of a downer, I turned to one- day Hubby and I said to him

'Am I loosing the plot?'


'Am I loosing the plot know, dropping my marbles so to speak?'

' Don't think so, why?'

'Because they keep taking these notes, about my anxiety, I wonder if it's you know, an issue'

'No...I think you're all good' he says barely looking up from his I-phone.

'So why do they keep saying it then and writing it down?'

He looks straight at me“I don't know. Anxious is a stupid word to use in a situation  like this, if you were in the middle of a war zone, you wouldn't go up to someone and say 'You're looking a little anxious there' would you?”

A quick search on google reinforced his point.

“ A person facing a clear and present danger or a realistic fear is not usually considered to be in a state of anxiety”

Everyone copes differently I guess and for me 'coping' was believing that I was holding it together, the persistent note taking and offers for counselling tore apart my little fantasy and put me on bumpy terrain.

No, I needed to believe that how I was feeling and behaving was a totally normal reaction to the situation and entirely appropriate. Because if I didn't have that much, then I couldn't have gone in and faced each day. 

Thank you One-day Hubby for always knowing the right thing to say and for believing in me. It's what kept me sane.

Friday, March 9, 2012

Like It Never Happened

Have you seen the part in 'Back to the future' when the main character returns to his ordinary life having been transported to a different point in history?

Well it's not dissimilar to how I felt when I first came out hospital, at home in those very early weeks. It was like I'd been teleported out to an alternative reality and abruptly deposited back into real time, now with a newborn baby in tow.

The people at the local shop didn't seem surprised to see me pushing a pram,even though I hadn't been obviously expecting before I delivered my premature baby.

The mothers at the baby group, talked and communicated with me like I was one of them, and it was as though the whole live/die NICU thing never even happened.

It was really confusing.

It was like a roast dinner with out gravy, all the components were there but the very thing that binds it all together was missing, and in the case of Smidge, everything that had sustained her for last four months was missing.

Gone were the monitors and charts.

Gone were the full blood counts and transfusions.

Gone were the surgical assessments, hospital transfers and suitcases packed with incubactor sheets and little premmy must-haves.

I was a normal Mum.

And as a normal Mum I was expected to talk about normal Mum things. Was I was sleeping during the day time as the old 'birth to five' guide suggests? Did I go to antenatal classes? Did I find Mother care expensive? Had I heard of the Boots buy two get one free baby event?


No, no, no and no.

I was, essentially, different to everybody else. Whilst they were browsing mothercare looking through latest range of cot bumpers,I was pacing the hospital corridors wondering if they had successfully fitted the latest long line so Smidge could receive the vital nutrients and antibiotics that she needed to fight, grow and develop.

I felt so very removed I think, and very alone. Surrounded as I was by these new Mothers, to me, they were nothing more than a bunch of infection risks with matching prams and changing bags.

It wasn't that the other Mum's were unaware of what had happened, The group leader had promptly told the other Mum's that Smidge was by far the oldest baby there, and at a mere four and half pounds she was every bit the contrast of her younger full term peers.

But such a disclosure did nothing to help the situation. Any conversation regarding intensive care had my fellow friends shuffling around in their changing bags awkwardly or striking up a conversation with the person to their left.

Another classic response to me sharing my experience/birth story would be for others to try to make it better.

'Oh but she's fine now' or 'But hasn't she done well' were very typical responses.

The rational side of me knew that people are just trying to be encouraging but the part of me that felt so very robbed felt angry. Angry that I had been cheated out of so much already and now people just wanted me to forget it, move on like it never even happened.

Because through my eyes, an experience like this, it wasn't going to just disappear like you would expect from a day shopping in mother care.

Three months of intensive care treatment is not just going to eradicate itself from my memory as though it was of no real significance.

This is what made me feel like a square peg in a round hole.

And even though,through some miracle, the baby born to me at twenty five weeks gestation is perfect in every single way, It doesn't take away what she's been through. What any of us have been through. 

And in writing here about my own experience of social isolation, I hope it helps people to see that it is not always as straight forward as shutting the door and refusing to talk to others, and, that recognizing the difficult time a family has when a child is born too sick, too small or too soon, goes a long way in helping them feel they have found support and understanding.

Monday, March 5, 2012

Cot Side Chatting

When I first started visiting Smidge on the NICU in the early days, I thought a time would come where I would be able to sit down with a doctor and have a good old chin wag about Smidge and how she was generally progressing.

I kept asking One-day Hubby 'When will we get an appointment?'

'What for?' he'd say.

'You know to talk about detail'

'Well the doctors are here all the time, you can talk to them whenever you like.'

But for me, chatting with doctors at the cot side was like bird watching at the fairground, it just didn't make any sense.

With so much invested in her getting better, I wanted to know everything there was to know. Because for some strange and ridiculous reason, still unbeknown to me now, I thought this would be helpful.

But where as the flashing red lights and monitor alarms would send my heart plummeting, The doctors would only briefly cast their eyes upon Smidge's numbers, then, confident the nurses had everything in hand our conversation would resume. 
Only now, for me, the words.. they wouldn't make any sense - I was back in hyper alert mode, one ear to the Doctor and the other to the monitor.

This two way attentional processing meant I had to by pass the details (which would have stretched my intellectual ability, even at the best of times) Instead I tuned in to the rhythm and the tone, my ears pricking up at the use of important key words such as 'worried,' 'pleased' or 'reasonably well'

Even with the responsibility of engaging in these two auditory processes, I still has to make sure I heard something nice to over-analyse ponder over later on when I was at home and monitor free. My task was to make sure the doctor didn't leave our convo with out dropping in at least one of my favourite key words or NICU lines.
This sometimes involved a bit of repetition on my part and some stylish rephrasing on theirs but hey, we'd get there in the end.

Some of my favourite one liners..