Tuesday 17th November 2015

So, to state the glaringly obvious,  I have not posted for quite some time…

As is inevitable, life has a habit of taking over, but on this World Prematurity Day I felt compelled to share  some thoughts; this is a day when my mind is naturally inclined to reflect on our experiences and pray for those still facing their own battles.  It has now been two years and 6 months to the day since Lily came home with us and I am thankful for every day. (Yes – even when she is not sleeping/driving me scatty!)

Were my experiences life defining?  No, but they were at least life affirming….they taught me to cherish every moment, not take people for granted and remember that tomorrow is not a given for any of us.

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The following is a bit of an extract cobbled together from notebook entries that I wrote during some of the time that Lily spent in hospital.  I joined this together as a more coherent piece earlier in the year for a creative writing exercise for Uni and when I re-read it, I have to say that this comes across as quite negative  – still, it’s important to document the good, bad and indifferent….This focuses less on what was going on with Lily and more where my head was – particularly in the beginning.  Reading it back, it is raw and personal and says a lot about how poor my mental health was at the time.

Bedding in…

Having spoken with N at length and finding out that he has a polar opposite view to mine on the matter, I guess that it might just be me, but the first few weeks in our new hospital-home have, at times, been tantamount to how I imagine first time offenders feel when they first go to stay in the “big-house’.

I feel like an alien who has landed on earth for the very first time. There is a large population of already colonised people in situ; going calmly about their business, holding conversations about seemingly normal things like it is just another ordinary day in metropolis and I guess – to them – the seasoned professionals, it is. They have already had time to adjust their mind-set appropriately in reaction to their new situation; but to me, this is still stressful and foreign and not like any kind of life I have ever experienced. Three doors down from where I earlier today fruitlessly attempted to express milk with a pump whose mechanical whirr will forever haunt me, lies a room full of tiny and desperately sick babies – including my own. I am a mother, my daughter is gravely ill and my mind is having some difficulty reconciling that with any kind of normality.

I keep finding myself simultaneously relived that we are, as everyone keeps telling me, “in the best place” and disgusted with myself for feeling this way. Up until five days ago, I wasn’t aware that places like this unit existed – yet now it has become my life and I am pinning all of my hopes and dreams on the fact that the technology, medicine and doctors in it will save my little girl. It feels a bit like finding out that Santa Claus really does exist then awkwardly asking him for a state of the art bike for Christmas knowing full well that we both know that I’ve spent most of my life denying his existence; why should he do me any favours?

Anyway, back to the “prison”… Privacy is a thing of the seemingly distant past. As any lady who has ever given birth in a hospital will know, there comes a time (usually just before the crowning moment) where it is necessary or rather compulsory to leave any rights to privacy and dignity at the door. Whilst I fully expected this from the perspective of physical examinations and the like, after all there’s only a limited number of ways babies can make their way into our world, what I hadn’t banked on is the constant “mental-monitoring” that I am currently finding myself subjected to. I have had a severely prematurely baby who needed life saving surgery on day two and as such I don’t think it is unreasonable to assume I am in a bit of a state of shock. I know I am being irrational here and I know that they only have a duty of care and my best interests at heart but what is really getting to me at the moment is the fact that every word I utter in the presence of a nurse, doctor, student or cleaner is being carefully summarised (sometimes incorrectly) and recorded in my patient notes. I feel like I have been robbed of my ability to have a casual and perfectly normal conversation with another adult about anything. Someone appears to have slapped a tax on free-thinking and I hate them for it.

There are so many rules and new things to remember here that I am fast tying myself in knots trying to learn and remember them all. To my knowledge, none of these rules have been openly communicated but, when I look around, I find that I’m surrounded by “inmates” both old and new who, without enquiry or hesitation, just seem to just know how things work. How do they do that?!   Somehow, in my post section haze I appear to have missed the orientation meeting! What list for instance do you need to put your name on in order to acquire a breast pump that can be used at your child’s bedside? Where do you print or obtain the fiddly barcoded stickers that need to be attached to every pot of milk? How do we get a car parking pass so we don’t have to bankrupt ourselves by using the hospital’s ridiculous-a-day car parking fee  and what are the rules (because there are many!) about visiting?? These things seem trivial and petty to me now I have written them down, but in a way, the pursuit of clarity is one of the few things that is keeping me going at the moment… I fill whole pages of note pads with endless questions about our new surroundings, the equipment and Lily’s care plan and am fast becoming a quiz master extraordinaire. Knowledge is power, or so they say and I intend to become an expert in my field.