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.

8 Responses to “18 months, adjusted”

  1. It is so nice to see an update. And, even though you have legitimate concerns you have such an awareness that now that you’ve called in support, I am sure she will flourish as the little person she is meant to be (which is not to say that she wouldn’t have regardless, just that the support means so much. I WISH my sister would have done the same for my now almost 6 year old nephew).

  2. It sounds like you’re doing everything you can and she’s making progress though, so that’s good. Hopefully things will continue to improve and she’ll continue to catch up. I’m sure it’s hard and worrying at times though.

  3. You absolutely did the right thing by reaching out for support! I work in early intervention with some amazing therapists and teachers (in Minnesota). If the support is free, and she is eligible, I would definitely encourage you to take the support. Remember though, as Mom, you need to make sure they understand your priorities for your little girl, which right now sounds like talking and walking. They may have some great ideas to help you with other regular routines too – like sleeping, eating, etc. Good luck to you as you work through this process!

  4. Ha — it’s funny to read the beginning after my email this morning.

    I do think you have all grown strong. Though I’m glad she’s getting that help.

  5. I think there are always the negative possibilities, but you are so ahead of the game by recognizing the problem and doing what you needed to initiate getting help. Your girls are lucky, and you are a good mom.

    As far as hesitating to write here, I get that too. But I’ve always felt pretty strongly that peoples blogs are fluid and will change just as their lives change… sometimes that means their audience will as well. I think you need to do what feels right for you. And sometimes, that means celebrating your blessings, even while mourning your losses.

  6. You are doing such an amazing job. I hope you know that, and remind yourself on a fairly regular basis. Thank you for the update – I really enjoy reading from other IF mommies about their parenting. We have just a little different view that’s not covered by the regular mommy blogs.

  7. Luna – you are so well informed and aren’t in any sort of denial. You are very well prepared. My older one had a rough birth and was a client of the regional center which gave us early intervention. I’m really grateful for that – he is still behind but all the therapists we saw at 18 months couldn’t stress the urgency for E.I. often enough. He had all his therapies in a holistic way in his three hours daily at the center. Like you I also had another child unexpectedly – he has no muscle tone issues that we know of..and looking back at my first son’s abilities at 3 months vs my second one now, there are big differences. So I know what you mean about comparisons (however unfair)

  8. […] Z turned 18 months old (adjusted age) and was not yet walking steadily or talking much, I knew it was time for an evaluation. Yet I was […]

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