Proud

Today, Wriggles was seen by our physio to be fitted for her new pink Piedro boots. After being very wary at first and hiding in me crying (I think the poor sausage associates people touching her feet with blood tests; they are rather pricked with tiny scars) she soon warmed up to them and was proudly kicking her feet about. As well as trying to exercises to help her cruising, our lovely physio and myself reflected on the past year that she has been working with us. She looked undoubtedly proud and told us that Wriggles was one of the children she had worked with who had made one of the biggest leaps in development; music to my ears when I know we still have further to go!

When Jemma started working with us after our previous physio went on maternity leave, Wriggles was approaching a year old and couldn't yet sit unsupported or roll over. Her lower limbs intermittently stiffened and then went very floppy, and we knew cerebral palsy (albeit, fairly mild) amongst other neurological diagnoses, was looming in their minds. It's not that this isn't the case anymore; it's just that Wriggles has surpassed the expectations of just how well she has done and now it is beside the point if in the past she has suffered a specific 'injury'. In under a year, she has learnt to sit, crawl, bear weight supported, roll over in both directions and cruise. Although I was told that there was no reason she wouldn't learn any of these things in time, we were also told that there were no promises, no guarantees and we would have to play the waiting game. Yes, it was likely she would eventually walk but by which means or in what time scale, no one knew. She still isn't walking, but she is able to pull to stand and is confident in cruising now and the physiotherapy and orthotics team are satisfied it may take as little as Piedro boots and time to get her to the next level. Everyone who has worked with her, and continues to, takes pride in how far she has come and what a comical little character she now is as opposed to a helpless jerky baby that came home with me, 21 months ago.

a year ago - "I'm really trying, honest!"

So many people think that a premature baby "just" needs to grow to term when they should have been born, leave the hospital and put on some weight and that is that. Job done, prematurity over, scars left behind. And yes, for a few babies that is the case. They can be carried out of NICU and bar a few development checks, never set foot in hospital again. And then there are those who have a very complicated journey to those who have a slightly complicated journey. Those who stay in hospital for months to come moving from NICU to paediatric care before discharge, those who go home with additional support and community care, those who the future looks rosy until something crops up, those that leave but keep coming back...so many variations. For many, prematurity doesn't end when you leave neonatal, the location just changes. The parents live with memories, labels, words, medical jargon they never understood before but do know, living with uncertainty as they wonder if something that cropped up before will rear it's head again in the future. Even as our little babies develop, we wonder like all mums, is she doing that right, is it on time, is that normal? teamed with the added knowledge of prematurity and statistical after effects.

Of course, our journey is far from over; from being resolved. But it is such a boost to hear that my little star has defied what doctors thought she might achieve. I remember the day after her birth, when one of the neonatal doctors came to speak to me. No promises, he said. The next 48 hours are critical for her immediate survival, let alone future. There is no telling what she may be able to do, or not do. And then as she grew older and the admissions started coming thick and fast, her notes tripling in size and the gulf of development inching wider. But then, slowly, she grabbed. She sat (and fell down). Then sat again. She rolled over by accident. Then rolled over on purpose. She started crouching on all fours. She started making 'bunny-hop' movements. Then she toppled over and crawled. Then one day out the blue, she heaved herself up. And I know, one day, whether in weeks or months, she will take wobbly steps. 

Oh baby girl, how far you have come!