My preemie's turning two.. and it really is a BIG deal!
I wrote this in floods of tears the night before my newly 2 year old twins met their NICU consultant for the final time. The enormity of the previous 2 years hit me like a tonne of bricks that night, and little did I realise that it was the start of the realise of a pressure that had built up following 2 years of fertility treatment, 4 rounds of IVF, premature births, 10 weeks in special care and then bringing up twin babies for 24 months...... I had stoically held it all together but as we slowly slipped into normality, became a normal family and I realised that my kids had actually made it, suddenly I fell apart.
My health visitor likened it to post traumatic stress and whilst I'd never ever compare my experiences with anything anyone on the frontline had faced or experienced, I certainly know what she meant. It was now my time, the pressure was released and inside I was broken. There followed a visit to the doctor and many many months of support.
Yet it was this night that triggered it all off. Why should turning 2 be so significant? When I read it back I completely understand why now, and I hope any other preemie families whose lives were thrown upside down by a premature birth can identify with the feelings of relief, disbelief and gratitude at reaching such a milestone.
The first time your second birthday was mentioned was when I was first introduced to your NICU consultant and they told me you’d be under him until you were two! Two? Two years old? It was a milestone I could barely dare to dream about, never mind reach or celebrate! It was a usually normal milestone, that now as a NICU Mum seemed alien and one I couldn’t bear to think about. It was a birthday that most new Mummies wouldn’t yet be considering because they had plenty of milestones to enjoy before then. It was a birthday that I wasn’t yet considering because I was concentrating on getting you through the next hour, the next test, you taking your next breath.
At that time we were willing you to “breathe baby breathe”. The consultants and nurses, who were giving you round the clock care, promised they would do all that they could and all you had to do was take your next breath. And another, and another. And so our mini milestones went on. Hour by hour we celebrated with each one. It then stretched to day by day. We didn’t have head space to acknowledge you might one day turn two years old.
And every one of those long days in NICU was focussed on that day, that hour, that mini yet vital milestone. Never once did we dare to look forwards, to the future, to what others consider to be a normal life. We lived in the there and then and celebrated the passing of each day with you.
Two years seemed a lifetime away, such a long time away and a million miles away from where we were on that day, that long day as I sat next to your incubator, just willing you to breathe.
And breathe you did. You fought every single day for ten weeks progressing from intensive care, to high dependency, through special care and finally home. Now two years on, every single night I check on you before I go to sleep and I don’t move until I hear you breathe. Sometimes softly, sometimes snoring but there is no more comforting sound than the sound of you breathing. We might not have monitors confirming your oxygen saturation, but I know that with each precious breath you continue to fight, to grow, to live and most nights thankfully sleep.
In those early days when your fragile limbs were almost transparent, I dreamt of a day when I could finally ‘squidge’ you, squeeze you in my arms and hold you close, taking in the warmth and the smell of the soft hair on your head. And yet each time your tiny body was placed on my chest for kangaroo care, covered with wires and tubes, it was the most perfect experience and the best feeling in the world. I longed each day for those twenty minutes when I could feel your skin against mine. Now two years on, each time I gather your chubby arms and legs in my arms and squidge you against my chest, I realise how precious that feeling is. When you wriggle and giggle and I tickle your podgy little tummy, I remember that there were days when I longed to be able to do that. These days, as I breathe in the warmth from your head, I appreciate how lucky I am to be able to do it now.
I often cried as I was too scared to move you in your incubator and needed help to bathe you and dress you. Your fragility was overwhelming sometimes and even though I loved you more than anything in the whole world and wanted to help you, I often felt helpless and too afraid to touch you. Now two years on, I laugh with friends and family at your chubby little limbs, your tough nut of a head that you frequently bump and I’m never ever afraid to get hold of you. You are a powerful, strong little person and you never cease to amaze me as you get bigger and stronger in front of my eyes.
For weeks I stared at the transparent skin on your skinny arms and legs, smiling at the teeny little nappy that was all that you wore. It was so cute but when the day came that you could wear a vest I was so excited that we could start to share an experience together that most new Mums take for granted. I searched everywhere for clothes for a 3lb baby. Each night when I finally came home from visiting you, I would scour the internet for preemie websites, prepared to spend a fortune to ensure you had the cutest vests I could find. It was frustrating how limited the choice was but I loved the special clothes we found, that had special Velcro fastenings to allow for your tubes and wires. Each day I would carefully bring them home to hand wash them and dry them overnight to be able to take them back the next morning. Now two years on, I still look for the cutest clothes for you, I still want the best for you but now I love to see you in funky outfits that suit your fabulous personality. I often open your keepsake box and see those tiny 3lb outfits and I could never ever throw them away. Two years on I find it hard to believe that you were ever that tiny.
With every day in NICU we had a test and with each test came a stomach churning fear that the result would be cause for concern. Previous life experience had given me a sense of positivity and perhaps even making me blasé to tests, but NICU changed all that. Concern for babies’ health was all around us, complexities were commonplace and nothing was ever taken for granted. Problems could arise and often did. We found ourselves expecting the worst, preparing for the worst outcome. Now two years on, as you tumble, have a snotty nose, get the pox or perhaps are just crying inconsolably, I still get that same gut wrenching vice like grip in the pit of my stomach, I still expect the worst and I am still anxious about you. I know after what we went through that that fear won’t ever go away. I know that I will always worry more, expect the worst and though we have experienced and survived plenty of minor ailments and injuries just like any other family, two years on, when you hurt yourself, time always stands still for a moment.
In your first few weeks, we were all dependant on the care of your NICU nurses and doctors. The only thing I could do for you was to try to express enough milk, or “GoGo Juice” as we called it, to ensure you had all the natural nourishment you needed for each feed. You were weighed every other day and we would rejoice if you had gained an ounce or two, but then my heart would sink as I realised the amount of GoGo Juice you would need had gone up. As the nurses recalculated the ml you would now need each hour, they giggled at me whilst I sighed. Every night, as the nurses watched over you, I would be at home and get up every two hours to express. I would try my hardest to savour each drop to meet your demands, which was so difficult as you were so early and my body didn’t seem ready. I would literally run into your room each morning at 8.30am to try to get it to you before your next feed only to burst into tears to learn you had needed a top up with formula as my overnight supply had run out. Sometimes my very best wasn’t enough and that frustration broke my heart. Now, two years on, if you want milk, I happily walk to the fridge and get you all the milk you will drink. You still want a bottle at two years old and I don’t care. You can still have a bottle. You fill your boots my darling with all the milk in the world because I can provide it for you and I do so with utter joy. Two years on, it feels great to be able to fully care for you and give you all that you need.
Two years have passed since you arrived unexpectedly at just 29 weeks. You were 2lb, you were tiny and we had no idea what the future would hold. We lived minute by minute. We put all our lives into the hands of the NICU team and we had to let them guide us through the days, weeks and months until we could take you home and start to lead a normal life. Two years on, we have amazing family life, you have an amazing personality, strong body and even stronger mind.
Tomorrow we will meet our NICU consultant for your two year check. That final check and sign off that I first learned about in your first few days. As promised he has been there for you, and for me, until your second birthday. And that celebration is finally, unbelievably almost upon us. It will be a celebration for sure. A celebration of those two years, of your strength and courage, and of course of the wonder of NICU.
So when you giggled at your balloons, when I helped you blow out your candles, when I hold your chubby body in my arms and squidge you and I smell your soft hair now you are two years old, for me, my darling preemie, it really is a big deal. A much bigger deal than I, or anyone else, could ever possibly realise.
