Most parents, especially first-time parents, will at some point find themselves confronting developmental milestones and the much dreaded growth charts. Even term parents find themselves neurotically vexed by the specter of developmental delays. But for preterm parents, these growth and development observables are, let’s say, consuming–but also not.
When a preterm infant leaves the hospital, she has an actual age (based on her date of birth) and an adjusted age (based on her original due date). Developmentally, the infant is much closer to her adjusted age, which is to say, when she leaves the hospital, she is for all intents and purposes a newborn with newborn needs: late night feedings, neck support, back to sleep, etc. By the time she’s ready for kindergarten, she’ll have caught up to her actual age (usually, but not always).
When we brought our daughter home from the hospital, there was a three-month gap between her actual age and her adjusted age. What’s more, our developmental therapist’s office tacked on an additional month to her adjusted age, so there was a four-month gap between her actual age and adjusted age when we went in for milestone evaluations.
Early on, our medical team used our daughter’s adjusted age to measure her developmental progress. If she tested at or slightly below her adjusted age, she was right on track; if she tested closer to her actual age, she exceeded expectations.
Her growth, too, was plotted along two different percentile graphs–one for the averages her actual age, one for her adjusted age. In the first few months after homecoming, she was a really, really small baby. Her weight clocked in well below the standard percentile chart…for her actual age. For her adjusted age, she was a happy ten percent. Still incredibly small, but a small we could all work with since her growth curve was much steeper than that of a typical term baby.
Maybe because we had the benefit of this age-gap, I never felt anxious about milestone checkups. In many ways, the span between actual age and adjusted age felt like a safety net which would catch real-delays, if there were any, and I took comfort from that. For my daughter, “normal development ” was not so much a checklist, but a range. And this range helped us better gauge her normal.
Even now, I feel maybe a smidge sorry for term parents who obsess about milestones, but that’s about it–a smidge. I feel sorry for them, because growth and development is often presented as a calendar thing, a sort of checklist of normalcy. It’s not, so it shouldn’t be presented that way. But for us, this was a hard lesson we had to experience from the get-go.
Our charge nurse put it best, as she escorted my husband on a tour of the NICU: there would be good days and bad days–celebrate the big moments, but don’t count the actual days. It was good advice in general, but especially meaningful in the context of the NICU, where a good growing day could be followed by a bad brady day. We learned how to follow our daughter’s lead and take one day at a time–and most of her milestones just sort of fell into place.