I have a particular interest in this report becase eight months ago I developed pre-eclampsia any my baby was born by caesarian section 7 weeks early at 3lb 6oz. My son had received corticosteroids to develop his lungs before birth, he was kept warm in a sterile incubator, fed through a drip at first and then an ng tube, carefully monitored, he was cared for and called precious by nurses and doctors who had the time, money and space to look after him and now I have a happy, healthy, cheeky baby boy.
As you read about my son I'd like you to think about the 255 babies born the same minute as him (rough figure from 2007). Of those 255 babies around 25 would have been premature. The majority would have been born in the third world, with little help or support, they would have been born to a mother who loved them, just as much as I love my son. But her love alone wouldn't have been enough. In about half those cases her baby, if born at 33 weeks like mine, would have died because of where she lived. This isn't fair. Every baby deserves an equal chance.
Introducing Isaac - The NICU Days
Isaac is 8 months old, he has 6 teeth and a strong bite, he's learning to crawl and is obsessed with cables and television remotes. Today, as part of a response to this report, I want to introduce you my little man, Isaac. This morning I worry about how to pry dried weetabix off his hi-chair (and face) and if he should be chewing on that cushion. These are such small, everyday worries,not all families are this lucky.Isaac was born on August 27th 2011, a Saturday afternoon that I remember very little of. I'd been in hospital for a week already, and the consultant decided that it was time for him to born. She didn't want to wait for a tipping point, for an emergency, we were both stable and she wanted us to stay that way. I remember shaking a lot after they'd got the spinal in, it was almost an out of body experience, but the theatre staff were all so fantastic and my husband distracted me from the oddness of it all by playing 20 questions. I remember laughing at him, because I'd asked if the animal was found in England and he's said yes. It wasn't, it was a Beaver.
There was a moment of stillness in me as my son was born, I found out later it was 3.56pm, it doesn't feel like the word born fits still, emerged perhaps...But the fact remains that my tiny, wrinkled boy let out a cry, and then another reedy but full of life. I was allowed a glimpse over the curtain at his little face, swathed in blue, I wish I'd had a camera, and a free hand! He was so small and he sounded like a kitten. He was breathing on his own, and there wasn't the panicked rush I was warned could happen.
The first real glance of him was the picture above, the unit takes them for women in situations like mine and for 18 hours - a whole evening, night and morning after it was all I could cling to. He didn't seem real, I still felt pregnant, I could still feel him kick. I don't think anything, not even being able to visit the unit before hand (thanks to Pauline who leads the wonderful Kingston Hospital's Born To Soon ) prepared me for seeing my little spaceman in his rocket ship. I was led past the blue room which I knew was low dependency, the departure lounge where babies who are nearly ready to go home grow and learn to feed. Past the pink unit, which was intensive care, the scary place where the most tiny, ill and fragile babies were cocooned and taken in my wheelchair to high dependency care, the green room.
He was in the green room for 8 days, those were the really isolating days, I felt like I was in my own bubble. Just like he was in his, I was scared of my own son, scared of hurting him, of the wires attached to him, of his tiny limbs and bony little bum. I learnt to care for him, to change his tiny nappies and wash him. I learnt to feed him and I got to know him and realised how proud of him I was, how much I loved him and his quiet alertness, he didn't make a fuss like the other babies. He was the baby turtle from Finding Nemo, my little Squirt. From the outset he gained weight, 30grams, then 90grams...Slow, steady gains. My tiny little boy, who became Isaac on day 3 of his life, was showing me how to live - how to go with the flow, to just worry about the things that mattered.
Our journey in NICU was mostly filled with highs, with growth and success, from incubator to heated cot within a week, then into a normal cot in another week. I was still struggling to come to terms with it, and for the first 8 days I was still a patient as they tried to get my blood pressure under control. I loved the night most, being able to sit quietly without the rush. In those quiet moment I could watch him sleep, could recognise him from the baby in my scan photo, I grew to love him for what he was, not for the baby I'd been expecting in 7 weeks, Trying to accept my new normal and my perfect baby son.
Some days I was really upset, at silly things - the nurse not waiting for me to carry out one of his cares, because I was delayed by needing a blood test was one of the silly moments that nearly overwhelmed me. The chance to touch him, to hold him came with those cares and whilst it wasn't said, we were discouraged from fussing with the babies too much. I know why, I understand, but it always hurt a little, to sit there and just watch them. I read to him, I sang to him and I watched each breath, trying not the watch the monitors but they became the back-beat to our first weeks together.
We struggled to breast feed, neither of us got the hang of it and the bottle tired him out less. I look back and wondered if I should have fought this more...I ended up expressing for three months before I couldn't any more and will always have a regret that I didn't get more support in the unit, but it's a small regret that pales into the gratitude for the hours of meaningless conversation and support I got from the nurses, and a few of the team that I particularly bonded with. I wish I'd felt more in control, more able to be his advocate, parents were discouraged from being there for doctors rounds, and I think I only spoke to one doctor the entire time we were there. I suppose it's because everything went so well, but even so I didn' t know his care plan, I didn't know about Tommy's or Bliss, I felt voiceless and I didn't know what expectations to have.
Our journey was swift, compared to many other parents I got to know and I learnt to be humble with my pride, to always appreciate it a little more. To thank god in amongst my prayers. Going home happened rather quickly, on the Monday the little man couldn't manage to drink all his bottles without falling asleep, he was still having 1 out of 3 as a tube feed (where they syringe milk down the nasal gastric tube in his nose) but by the Wednesday the tube was gone and he managed every feed for 24 hours...That was it, the last tick box, suddenly life was scary again. I roomed in on Wednesday September 10th 2011 and then on the 11th the routine and security of the NICU was gone, and it was just me, my husband and an institutionalised baby who was still a tiny 4lb 4oz. In the next post I'll talk about what happened next.
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