Written retrospectively during our recent hospital stay at the beginning of August 2012.
5th August (day 6 of being in hospital)
15:00, 5 litres of oxygen
I am tired now. Exhausted. Strung out. I can feel my bones heavy with the need to curl up but my eyes will not close and my brain will not cease. After the past week, adrenaline is still coursing through my body making me on hyper alert about everything. It is in this acute state that there are no inbetweens, only huge, looming and dramatic emotions. How did I do this in NICU for two months? How do too many families do this for longer?
Whilst Wriggles finally succumbed to an afternoon nap, I walked to the adjoining wing of the hospital. Primarily to scour the hospital shop for a belated lunch and stretch my legs but also as it holds a pull as being the wing of the NICU where Wriggles "grew up". So many intense moments, thoughts and experiences happened there, so many memories that linger like ghosts in the reception and all-night Costa Coffee franchise. Memories of daytimes buzzing with people and late nights eerie with silence, only the receptionist lonely at her information desk, the sulky coffee baristas staring into space, the odd lost drunk from A&E and smatterings of visitors like me, drifting aimlessly but with a sad purpose. People too late to have been on a happy visit.
This lunchtime, families packed the forecourt, a couple waited with their tiny new baby in a car seat, with a thin tube protruding from it probably fresh from being discharged from NICU upstairs. Finally taking their baby home at last albeit with accessories they probably never contemplated. It takes me back like yesterday. In a flash, I am there. 15th November 2010 with my baby in a car seat and oxygen tank wired up. Adele, neonatal matron and community nurse bending over to say goodbye; after all she knows my baby as well as I. Probably better. I wear a brown dress, green scarf and a cardigan my mother wore as a young woman. I have worn these this past weekend whilst rooming-in, the first nights I have ever spent with my baby. She snuffled noisily all night. I drew her acrylic cot so close to the fold-down bed they touched. I wanted, no, needed, her as close as physically possible. I ached for her to be in my bed with me, close to my skin, but lacked the confidence with her fragility and wires to whip her out close to me. I loved night feeds. Another precious moment with my baby girl. 4 hourly feeds round the clock. Tick tock, tick tock. The nurses would buzz in and out. "Getting on alright?" Better than alright, I'm finally where I belong: with my child.
Today though, is t-shirt weather. I don't feel just two years old; I feel at least 20. No one expects NICU to be an easy ride and indeed compared to many, ours was a relative breeze. But no one predicted the tumultuous years after leaving, the short bursts of horror at dreadful new admissions, the ceaseless worry about what was next: there was always a next.
At the end of the coffee queue, a father has a curly haired toddler on his hip, the child sleepily sprawled on his shoulder nestling in. A lump comes into my throat and tears prick my eyes. I long for my curly haired toddler, who is in the next wing sound asleep and still covered in wires. I had her on my shoulder but ten minutes ago curling into me, but that isn't what the pangs are suddenly for. It is for a life I imagined, seemingly snatched away. For a life free of medical intervention, a childhood of innocence. Of course, this child may have also had a rough ride, I know nothing of their lives or history, but in this split second their cherubic appearance embodies everything my little girl has missed. She bypassed naivety and has already experienced too much, too young. Maybe after this, the admissions will lessen or better still cease. But these years will never be repeated. They are lost to tears, nightmares and terror. Of course we have had blissful, happy moments and memories but they are not the ones that stay so bright. There is no point dwelling or mourning what could have been: we are lucky. I just wish we were luckier.
Back in our cubicle, Wriggles sleeps with her toy hedgehog by her side. Her fair hair fans out on the crisp white pillow, her NG tube sinking into the cotton creases. Sats: 95% on 5 litres of oxygen. Heartrate: 106. She is peaceful for now. My pyjamas hang off the buggy we innocently arrived at the doctor's in. In the little en-suite bathroom, newly washed socks swirled around in the sink with shampoo drip off the hand rails. On my pull-down bed sits a pile of confiscated Mega-Bloks from the playroom. Outside the window is the distant hum of traffic from the A167. People walking by with umbrellas.
Just another Sunday afternoon.