When you give birth at twenty-five weeks, you receive a lot of frightening warnings about what might lie ahead. Developmental delays, complications, surgeries, infections – it all gets thrown out there at one point or another, because the likelihood of something bad happening is uncomfortably high. But then, probably in an attempt to temper those scary possibilities, they always mention the follow-up clinic. When babies are born early and small, they are followed long after discharge – until age six – by a great team of people who help those babies meet the developmental milestones that are so important to their growth. For us as parents, it felt like a bit of a silver lining – yes, all these bad things might be happening, but there are people who will try and help you minimize their effects. We wouldn’t just be waiting to see what the outcome would be, we would be taught how to be proactive about helping our babies. But at the same time, in many ways, it would be a six-year-long reminder that, while we may be out of the NICU, we are certainly not out of the woods.
Madeleine and Reid had their first follow-up appointment today, with the physiotherapist and neonatologist who followed them (particularly Madeleine) so closely during their hospital stay. We had heard many times already to expect that there will always be lots to work on – that even if they were doing phenomenally, you would never leave follow-up without homework. And yet, even though I knew they would find stuff, even though I knew myself what some of those things would be, I couldn’t help but feel a little sad when our appointment had finished.
Just before the babies were discharged, I worried about what it would be like to have preemies at home instead of the hospital, where it had started to feel almost like they belonged. I didn’t know how to be a “normal” mother, and in any case, I didn’t exactly have “normal” babies to take home. And then, the twins were discharged. After a day or two passed, it started to seem so strange to think of them as the same hospitalized prems we had spent months visiting every day. Everyday they appeared in our eyes to be more and more like every other full-term newborn out there. I started to forget their actual chronological age (if you ask, I will reflexively tell you that my babies are seven weeks old), started not to notice their misshapen preemie heads, or their general sprawled out floppiness. They seemed just enough like normal babies – normal, perfect little babies – to forget, just a little, what we had been through for a couple of months before.
Today, I remembered. Nothing bad was said at follow-up, there were no major issues (in fact, I do think we were told that the babies were doing great), but it was a reminder that there is still a lot to work on. The past few weeks, we have been such typical new parents – dealing with crying jags and projectile pukes and explosive poops and diaper rashes non-stop eating – that we forgot we also had to deal with atypical parent stuff, like physiotherapy exercises and rounding out heads and shunts and eye contact and lots and lots (and lots!) of tummy time to build up those weak preemie muscles. We were too busy trying to get Madeleine to smile to notice that she only likes to sleep on the side opposite to her shunt, too preoccupied admiring Reid’s head control to realize that it was stemming from his overcompensating back muscles. Again, not entirely a big deal – they are still completely amazing, thriving babies – but a reminder that they are still a little bit different, that some of the things we will have to think about aren’t things that most parents do.
We will go back in two months and hopefully will have incorporated enough of the suggestions we got today to see a bit of a difference. And then, we will inevitably have a new set of things to work on. It is difficult to consider that we might never get to a point where being a premature isn’t at least a small part of who they are (at least, not while they are still children). But I also hope that we will be able to maintain our unique parent perspective that, even with their special preemie differences, they are still whole and perfect, with no missing pieces, just as they are.