Wednesday, April 25, 2012

Angry About The New Lucky

When I was pregnant people would often ask me 'So what are you hoping for a boy or a girl?'

Of course I'd give the standard line 'Oh I don't long as it's healthy'

As long as it's healthy? Such a naive and generic statement that I can now reveal carried no meaning what so ever, I hoped for something I knew nothing about.

Then when when Smidge was born tiny and sick, 'good health' took on a whole new meaning as we navigated our way through the treacherous realms of Neonatal development.

There was a lot of fear and guilt attached to the positives when parenting a baby in hospital.

For example, when Smidge took a step forward with her breathing and somebody else's baby took a step back, I would be worried for them and yet slightly relieved it wasn't us. A guilty sort of lucky is what we had.... and the new guilty lucky was frail but sweet, like the flimsiest sort of sugar paper that would fall apart in your hands.

Hearing the stories of others, I couldn't help but compare their babies progress to that of my own, so many conflicting thoughts and ideas in the face of trauma, I didn't 'feel' much at all. Oh sure, I could empathise, but essentially I was balancing probabilities, trying to determine how 'well' my Smidge was, How 'lucky' we were.

We were lucky she survived the birth as she was quite sick leading up to delivery.

We were lucky that she was only ventilated for a few days and the move on to c-pap went smoothly.

We were lucky that she didn't have PDA or brain bleeds.

We were lucky that despite the episodes of NEC she never needed bowel surgery.

We were lucky that every time they resuscitated her, she came to.

We were lucky that her vision was saved through Lazar surgery and her eyes seem fine.

We were lucky to have one another.

And this past weeks' spell in hospital was fairly lucky too.

Lucky it wasn't meningitis as the doctors had suspected, Lucky that we are home now and safe for a while at least..

Lucky that at least 90 percent of the worries that I have about Smidge on a daily basis prove to amount to nothing...

But do you know what? I don't much like the new  lucky.

The new lucky is like opening your favourite box of chocolates and discovering all the best ones are missing.
The new lucky is like putting budget ketchup on an english breakfast or walking in wellies with holes in.

Basically the new lucky looks at the old lucky and is ridiculously jealous because the old lucky it gleams and shines and the new lucky knows it is nowhere near as good.

And that's why I feel angry about the new lucky.

Monday, April 23, 2012

The Swarm

It's 5.30am and I can hear the sound of Smidge breathing behind me as I type. But she's not laying at home in her her cot, surrounded by musical chimes and soft toys, she's lying in her prison cot, in PHDU.

I remember passing the signs for this ward after Smidge was dicharged from NICU.
A little puzzled, I'd looked up at the sign swinging from the ceiling and thought 'P.H.D.U? What does that stand for?'

The realisation washing over me bought a small surge of worry, rounded off with a quick shudder at the thought of Smidge needing care like that now as a 'grown up' baby.

'Not all preemies get sick after discharge' I reassured myself, before turning my attention to more trivial thoughts.

So why are we now here then?

I like to tell myself that it's the unfortunate combination of an over protective G.P mixed with a too young children's doctor and a theatrical registrar who wanted to look to 'take the reigns'

Regular readers will know that Smidge is no stranger to the resuss area at the local A&E. Not because they rescusitate her regularly but because theres never any space anywhere else in the hospital and it's always better to have the equipment at the ready 'just in case,' isn't it?

However, yesterday's 'just in case' turned out to be, well...not so terribly misplaced it seems, as Smidge embraced many of the bedside offerings, in the way of wall unit faciities and trolly tray treatments.

The intial trip to the out of hours doctor was, as always, a precautuionary measure, and the consequental referal on to A&E, 'border line necessary' …..

Thirty minutes later we were happily chatting away to the triage nurse at A&E, when a SHO doctor popped up out of nowhere and whipped us in to rescuss before we even had a chance to ask where we were going.

They pulled out the sats probe and hooked her up to the monitors, Smidge's little heart was racing ten to the dozen, impressively exceeding 200 beats per minute with bradicardia.

Overwhelmed and tired, she quickly became dazed and confused  as she scarilly babbled mindless gibberish. The doctor checked her body for rashes before ordering a chest xray, to be carried out there and then in rescuss.

Eagerlly waiting for the reassurance talk, I mentally deposited the doctor in to the 'crap with parents box'  before gingerlly asking 'So are you worried then?'

After a hesitant start she began to say that she was a little worried in as much that she would be worried about any child with a heart rate that high, and a temperature of 40 degrees but if she was seriously worried then we would know, because she would be putting a cannulla in.

Not feeling very reassured, I briefly left the room to make some quick calls and arrangements for Mister G who was playing at a friends house.

When I re-entered the room minutes later, another doctor was in the room and wait, another nurse.

'Get the ECG leads on now please' she ordered.

'Paul, start up the fluids'

Meanwhile the other doctor began examining Smidge's tiny hands for undamaged veins, whilst another guy in red scrubs entered the room saying 'You need some help in here?'

One-day Hubby is holding onto Smidge, now wafting oxygen in her face and broad range anti biotics are the topic of dicussion.

Mummy-bot sits on the side lines looking on.

Mummy-bot is quiet knowing that they need to do their jobs.

Mummy-bot doesn't cry or get upset though because she has to be alert.

No time for foolish tears at a time such as now. What if they miss something? Make a mistake?

'It's because she's hot and distressed' I tell myself 'The drugs will work soon and she'll be fine, this is a massive over reaction, they just don't know Smidge'

'Once she is more stable we will be moving her to high dependancy' The doctor said.

'More Stable? High Dependancy?' - The ugliest sentence I have ever heard.

'Oh... are you sure that's necessary, I mean, I'm sure she just needs a little longer for the drugs to work and then she'll be fine'

' Of course, but I'd rather over monitor her than under monitor if you catch my drift?'

'Of course, and er...have you any idea when her usual consultant is going to be in?' (if you catch mine)

'Possibly tomorrow'


Because right now I could do with a very large dose of Smidge's extremely relaxed, highly experienced Paediatric consultant, who would never put those four words in to the same sentence.

Mummy-bot or not.

Disclaimer: All references to the medical professionals mentioned in this post are only intended as sanity saving measure and should not be considered a true representation of their dedication or professionalism.


Thursday, April 19, 2012

The Snooze

It's going to sound dramatic, but yesterday I took a big step.

Yesterday I took a snooze.

But not just any snooze you understand, this was a leap of faith/snuggled with smidge/monitor free type of snooze which I DARED to take for the first ever time.

Sounds crazed doesnt it? For over 16 months now, I have been to a monitor as junkie is to crack. Compelled and fixated.

Initially, the hospital wanted to discharge us without a monitor. Oh how laughed, Smidge without a monitor? (ra-ha-ha)

Reluctantly they finally agreed to help me source a small portable monitor with sensor pads. It became like additional limb until eventually, Smidge grew bigger and the attached box was starting to make her look like a 1980's battery operated tiny tears.

But thankfully, by way of good fortune, an anxiety embracing genius managed to come up with the Angel Sensor Pad, and boy I cannot tell you enough what an epic transitonary product this is for the institutionalised.

The good old Angel sensor pad lies under her cot mattress. It's super sensitive alarm system enables One-day hubby and I to slip in to a restful sleep, assaured as ever that the bleeps would awaken us, should Smidge take one of her turns.

If Smidge and I are out and about we don't need the sensor pad as she is always with in my visual/audio range, wheather she's healthy, sick asleep or awake.

I know I need to let go but it's scary, both for me and the One-day Hubby.

So yesterday, when at mid afternoon I was feeling a little sleepy I took a very big step forward. Smidge and I snuck upstairs in to the  mummy bed and I snuggled her up close, like I used to with the fabulous Mister G when he was really, really small. 

I soothed my Smidge to sleep with her favourite lullaby whilst I was stroking her hair. My eyelids began to feel heavy. Performing a quick risk assesment in my mind, I scrawled through my mental check list. Will she be too warm? Is she coming down with a cold? I anxiously questioned. 

I listened to the rhythmic sound of her breathing... It was slow, steady, peaceful. I could have a little snooze I thought, with my Smidge all snuggled. …

Setting my alarm for twenty minutes I slipped in to the dreamiest of sleeps.

And do you know what? When I awoke to see Smidge all cuddled in, I felt like a tiny bit of peace had come in to our world and brightened up our day.

Sunday, April 15, 2012

Chasing The Fear

I think people can go a number of ways after stepping off the Neonatal Rollarcoaster. They can walk and keep on walking, and never look back....

They can walk and look back fleetingly with a shudder of fear.

Or they can walk and they can talk.

You might have guessed that I'm the latter. I'm a stroller, a walker and a talker.

I've stayed close to the other passengers, the ones that didn't quicken their pace.

I've listened to their fears and worried about their worries. I've drank tea, (too much tea) Ive bereaved, blogged, bantered and blamed.

I've immersed myself back into a world that I did not understand, I've re-lived what happened with my feet touching the ground. Ive needed to do that, needed to understand and process and what has happened to my family.

But there comes a point when I have to ask myself am I doing myself more harm than good?

Of course, it is always wonderful to find someone else who understands where you've been, what you've been through. There were times when I felt truly alone during the NICU, and my virtual and non-virtual friends have been a great source of support to me since then in helping me to come to terms with that.

But what I'm mindful of now, is letting the experience hold me back. Enabling it to consume me, to over shadow the good things that have happened. For example the fact that Smidge is here, alive and cuter than cute.

If I'm being totally honest, I think I've been scared. Scared to stop and enjoy everything that is, for fear that everything that was will come crashing down around me.

But do you know, Smidge and I have rather enjoyed going out under our alias identity as a non-premmy family and its made me understand the cyclic-le nature of the pattern that I'm in.

I can't promise I won't blog about the NICU, I'm not there yet.

What I'm saying is, I need to start thinking about moving on....

Tuesday, April 10, 2012

A Year Ago Tomorrow - I Stepped Off.

A nervous gulp, Everythings new.
panic, tension, a tear or two.

A sudden shift forward, theres no going back,
glitchy motions along the track.

Momentum is building, a nervous fright,
We're plunging down into darkened light.

I see the fear in their faces,hear their screams and cries
As they brave the up's and downs and close their frightened eyes.

They cling to those beside them, their faces fraught and scared,
They don't know what to do, No, they wern't prepared....

A cart or two ahead of them, unsure of what awaits,
I did not know the future, I could not hit the breaks.

The peaks and dips not clear at all, there was no place to hide.
We sat still and we waited for the forces to subside.

And then finally came the slowing..the light of skies outside,
we carefully remove our seatbelts and step up out of the ride.

My legs are feeling wobbly I walk slowly at first,
I stare back in disbelief. are we really over the worst?

I look back at their faces, we share a disconcerted look,
no one else knows where we've been or the courage that it took.

Wednesday, April 4, 2012

One Of Those Days.

Ever get the impression that you are not in charge? Because that is the very distinct impression I got when I found myself singing 'Wheels on the Bus' at ten past five this morning. Smidge's new waking up time. Yeah. Good call Smidge!

The day proceeded to go down hill as this sleep deprived mummy tried to negotiate her way to the very essential caffeine supply during those early hours.

In all my keenness, I foolishly put a far-too-moblie Smidge down on the kitchen floor and watched her tip over the dog's water bowl before my very eyes, creating a large puddle like effect for me to clean up. Nice.

'Pop her in the living room' I naively thought,opening up her toy box to expose the many items of plastic tac for her careful consideration...

Silly me again.

Not two minutes later I return and she is mid way through a fling fest. Yes I'm talking about the neatly folded laundry pile that was no more.

The cheekiest gummy grin emerges on her face to reveal two protruding tooshy-pegs.. Clearly she is over joyed. A sea of baby vests, jumpers and trousers surround her as she sits there, prouder than proud.

The clock strikes nine and suddenly I remember we have a play date in town with a new Mummy friend of mine, Must make a good impression.

Oh dear! all my clothes seem to old, too small or too snotted over. Finally I settle for a skirt I once paid too much money for and a top that partially disguised my unsightly shape.

Loading Smidge in to the car I am mortified to discover She has taken up the secret hobby of curing ham in her car seat, disgusting.

After finally finding car parking space in town, I step out of the vehicle. It's cold, subzero temperatures in fact and I am exposing two pasty white legs one of which has a large purple bruise on. very attractive.

I arrive at the cafe ten minutes early, and I get a text on my phone saying 'Sorry I'm going to be fifteen minutes late, I couldn't leave the house and the baby has thrown up all over me. Must be one of those days'

One of those days indeed.

Sunday, April 1, 2012