One of the biggest challenges of having preemies, one which no one warns you about or explains to you, is that your newborn can be a newborn for a long time.
When you arrive home from hospital, for us that was at 33 days actual 35 weeks corrected gestational age, you think that your baby will catch up in a couple of months. We always assumed and assumed is key here as there was no guidance or advice, that our boys would simply be two months behind a ‘regular’ baby and within a year it would all level out. WRONG.
It’s important to say at this point that all preemies develop at different rates and I guess that’s why no guidance is provided when you’re discharged. Some meet milestones easily, others never meet those milestones, it’s a massively unique journey but for many the developmental impact of premature birth does last long into the future. Despite it being an unpredictable and unique journey I really believe that ‘forewarned is forearmed’ and some examples of what could be ahead can only help prepare parents.
The first of these two photographs was taken when the twins were four months old and the second when they were eight months. At four months the boys had just started to have what I would class as considerable awake periods in the day, before this they slept all day like newborn babies. They were becoming curious about the world around them and so began the challenge of elevating them in their pram so they could soak in the sights and sounds. Sitting a baby up who was the size of most newborns with the same amount of head control and neck strength in a way which was safe and comfortable, whilst still giving them a good view of the world, was tricky. At the same time the fun but tricky job of weaning began. They were tiny but hungry. Three meals a day served in bouncy chairs (much to the health visitors disgust) as they couldn’t sit in high chairs.
By eight months what they really wanted to be doing was crawling around eating things they shouldn’t, banging cupboards open and closed and irritating their big brother. In reality they still weren’t able to sit up unaided. Days were spent at home crating ‘nests’ with a gazillion pillows and putting as many toys as possible within arm’s reach. I’d leave the room and boom, one would face plant the floor and the tears and frustration would erupt. Standard highchairs were a no no making trips to softplay for my eldest tricky and stressful. How could I prop up two babies so they could play and entertain and toddler, alone. The boys didn’t want to be confined to a bouncy chair or nest, they wanted to be free, but their boddies just hadn’t reached the stage their minds had.
At twelve months they finally learnt to sit, the relief for them and me was overwhelming. The crying and moaning was replaced with happy little chappies, for a while that is. Crawling eluded them for a further six months, with their bodies continuing to lag behind. When most babies their age were running around they were left stationary watching the fun from the side lines. The frustration they felt clouded each and every day, it wasn’t their fault, it wasn’t mine, but at the time it was one of the most difficult situations I’ve endured as a parent. Their frustration almost broke me.
No sooner had they learnt to crawl than walking became their new frustration. At the time it felt like it may never happen. The questions crept into our minds “what if they never walk?” “what if they never catch up?”. For us they finally mastered walking just before their second birthdays, for others this day never comes. Our attention turned to speaking and fine motor skills and although they have come on leaps and bounds, at four and a half and on the cusp of starting school, our attention still rests on language, behaviour and the knowledge that things may always take that little bit longer. Challenges that we don’t even foresee at this moment in time may arise once the rigours of school commence. The lasting effects of being a preemie may still reappear.
What’s my point? I don’t write this to frighten new preemie parents, every child is different and every journey unique. I write it to hopefully offer a reference, a story which can help others know its normal for development to be delayed and for the effects of premature birth to last long into the future. I write this because I don’t think it’s right for any parent to leave NICU believing and assuming what we did, all this lack of information did was feed worry and fear that there was something wrong with our babies. We spent the first 18 months getting our hopes up only to have them dashed when yet another milestone was missed then missed again at corrected age.
It’s taken four and a half years for me to learn that there is no way of correcting or adjusting, there isn’t always a rule of thumb or an expectation which you can cling to. Every preemie does it in their own way in their own time. It’s also taken me four and a half years to know how to trust my instincts and to champion my children’s needs. For some preemies they will experience severe delays, they may not ever reach their milestones, it is rare but it happens. If parents are trusted with the full picture, not to scare them but prepare them and educate them then they will be empowered from the very beginning to monitor and act when they feel concerned.
They will understand that ‘catching up’ doesn’t always mean their baby will one day be a ‘regular’ baby. That ‘normal’ timescales for them may be totally different than they ever expected. That things may be hard, when their baby is frustrated and they feel helpless to change things for them. That they might feel irrationally guilty for the situation when there is no fault to be claimed. That being a preemie can be part of who your baby is for many years and that they may worry about what could come next with every big life milestone.
If parents are warned they are prepared, maybe their journey won’t be like ours, but maybe it will and my god I would have given my right arm to have known four years ago what I know now. So that’s why I write this, that’s why I share. I hope you never relate, I hope milestones come and go as expected, but just in case you ever need it I hope our story helps you know you aren’t alone.