18 months, adjusted

I suppose it’s no surprise that I’ve found it so difficult to write about my girls here. What once began as a blog about infertility and loss sort of shifted to adoption, parenting and openness, then morphed into unexpected high-risk pregnancy and life with a preemie and now as an older mama of two amazing children with their own individual stories, which I try not to share here.

Like our girls, I suppose this blog has its own unique story, too.

It’s not that I don’t want to write about my kids, really. While I know that some passing through on their journey might find it difficult to read about parenting — I know I did, at times — I’ve always known that I needed this space to process my thoughts and experiences, and I’ve tried to be sensitive. It’s partly that I’ve tried to respect my family’s privacy by not sharing too much, especially the parts that are not mine alone. Plus I have a far too neglected family blog at which I can share stories and photos for loved ones, though I haven’t updated it in ages (because I’m a bad blogger). And let’s face it, I’m pretty exhausted from caring for a high-needs infant and very energetic preschooler at age 43 (almost 44!), while trying to make room for a few hours of work when I can get it.

Sometimes though, it’s because I can’t find the words. Or I’m not ready to utter them. Or I haven’t yet processed the thoughts to articulate the words and commit them to writing.

Today Baby Z is 18 months old, according to her adjusted age; she is actually closer to 20 months, given her birth date. I still balk when someone asks how old she is, not knowing whether to explain the fact of her size or abilities for her age. Sometimes when I share her actual age I add “she’s small” or  “she was early” and sometimes I don’t. Eventually I won’t feel the need to.

Like her big sister, Baby Z is an amazing light force in our family. Her eyes smile when she’s happy, her laughter is infectious, she is affectionate and adored by all who meet her. I can’t even explain how this experience has affected me — i.e., this privilege of having a second child after giving up all hope of a sibling for Jaye, and a chance to do it again. It is beyond measure, how blessed I feel to have this baby in our lives.

Yet she is also what we’d call a “high-needs” baby. She has never been a good sleeper, though thankfully she wakes less often now than before. While she is now on the charts for size, she has never been a great eater, to the point where she begs for snacks after meals, refuses to eat foods that touch each other, and wakes hungry in the middle of the night. Her cries are more like urgent demands and can be tough to soothe. If her routine is upset, so is she. She is super sensitive to different touches and textures (see also picky eater). And oh, is she stubborn. Not that we expected anything different, under the circumstances. This last trait she shares with big sister too.

As can be expected with a preemie, she has experienced some developmental delays. While we’ve been extremely fortunate that she hasn’t had major issues with lungs or eyes or other conditions common to prematurity, some delays have posed certain challenges. She was slow to roll and sit and didn’t crawl until nearly a year. Her crawl is really more of a “scoot” and has been for about 8 months. So while her muscle tone seems OK, her core is underdeveloped which impacts her ability to stand or walk for any length of time. Only now at nearly 20 months has she really started trying to walk, and she’d rather scoot as she can move quickly that way. And while I do love holding this baby — and I do love how long she’s been a “baby” — it really is time for her to start getting around on her own better. Her lack of mobility has fostered a strong dependence.

Her speech too has been delayed. Unlike big sister who had a substantial vocabulary and was forming sentences by this age — not that comparison is valid, given that each child is different and they don’t even share genetics — little sister barely has a handful of words and she doesn’t really use them. She mainly communicates using a few signs, by pointing and vocalizing, and by crying and screaming. Her reception and comprehension are just fine. She understands a lot. But her expressive abilities are limited which causes frustration for everyone.

While I’d been worried about the lack of progress, I told myself there would be no real cause for concern until she turned 18 months. Some doctors said she should be caught up by one year, others said two. So I went with 18 months, a milestone age for walking and talking. And yes, I know some kids don’t talk until age two, but given her history I was concerned and early intervention is best. So, 18 months. But which 18 months? Actual or adjusted?

Our girls have twin cousins who were born just days before Z. Our niece also had a high-risk pregnancy and we texted and chatted during our bedrest. We each delivered by c-section just three days apart. Her twin girls, born at nearly 37 weeks gestation, were bigger than Baby Z at birth (who was born at 33w3d). These girls have been walking since 9-10 months, which is literally half of their short lives. I know that’s early, but still. We had the pleasure of spending the girls’ 18 month birthdays together, the first time all four girls met in person. We had a blast, yet it was interesting to note the stark differences in the babies. When we came home I was resolved to get Z the support she needed and after her 18 month check-up I made some calls. The result: four appointments in a one-month period including three evaluations (speech, PT and neurological) and an assessment by a wonderful local agency that would provide services at no cost if she qualifies based on the extent of her delays.

Already I’m relieved that she has made so much progress walking since that first phone call and evaluation. She seems stronger every day and better able to take those first confident steps. The physical therapist gave us some tips to strengthen her weaker side, as well. We haven’t had as much progress on the language front, however. On one hand she seems sort of stalled in her ability to sign and speak and I was concerned about regression. Yet she continues to learn new words every day and her comprehension is remarkable. And we’re getting good tips from the therapists, even though we’re only in the evaluation stage.

I would like to believe that Baby Z is merely experiencing a normal delay, that she will get support and catch up and eventually be just fine. Yet I know there is a possibility for some long-term effects or some more insidious problem. Either way, she is an incredibly resilient child, not surprisingly. And I suppose we’ve grown pretty strong too.

So there it is. I imagine we’ll know more soon. Time will tell.

~ by luna on April 17, 2013.