Tuesday, August 12, 2008


While we didn’t know much about babies, we figured Elena was a little different, but we weren’t sure if that was just “a preemie thing”, or if she was just late, or if she was fine but different, or if she actually wasn’t fine. Here’s the short list:
Volume. Elena barely made sound—didn’t babble, didn’t coo, didn’t cry—hardly ever, and certainly wasn’t anything remotely close to colicky. People who would come to visit would say “oh, wow, she’s such a good baby”, which we’d wonder why she was so incredibly quiet. I refer to these months as her Mute Period. She did turn when I made sound—or, I thought she did, but I couldn’t be sure. She was tested for deafness when she was XX months old. She has one tone missing in one ear—which means she hears as well as you or I. For whatever reason, she just didn’t make sound, really.
Vision. Elena’s eyes were always “off”. At first, I wasn’t sure if this was a big deal, but as she got older week by week, it was obvious she was cross-eyed. They call this congenital (born with) strabismus (crossed eyes). It was pretty bad, her eyes looked “pegged in”. Her pediatrician immediately noticed—but didn’t tell us, at first, that congenital strabismus is a hallmark of neurological problems. He waited to see how she was progressing in other areas—which was fine, b/c I probably wasn’t ready for more bad news, and in any case specialists would have waited a couple more months, too.
Eating. Elena was NEVER a good eater. Her best bottle-fed moments were maybe 6-8 ounces of breast milk at a time. She has never, even now, voraciously eaten any type of food. She also rarely spit up. In retrospect, maybe I wasn’t vigorous enough in getting her to eat. Her doctors thought she was growing okay, she wasn’t “failing to thrive” or anything, but she was definitely not gaining weight like other babies. Appetite/size was sort of chalked up to “well, you’re small, and your husband is small, so maybe she’s just small” type of thing.
Movement. I now know that babies, even tiny ones, do a certain amount of “writhing”. Elena never did this. She wasn’t necessarily a “noodle”, or a stiff board, but in general she’d just sit there in her bouncy seat. She didn’t move her arms a ton, but she did move them, and she definitely moved her hands more than her feet. She did kick her feet, but not much, and she tended to do them together, symmetrically. She certainly didn’t bring her legs to her stomach much (like a reverse crunch), or twist her midsection. She rolled over early, due to the strength of her “back arch”—we learned (much much later) that back arching, like she would do, is common with spastic CP.
Constipation. Elena was constipated from day 1. Even on a diet of breast milk, she had very irregular bowel movements. At one time (still, only on breast milk) she had gone 5 days without one. The nurse was not concerned—she said it was normal for babies to “have bowel movements from 4x/day to once every 8 days”. I was appauled—what kind of range was THAT?! I tried mixing juice, prune juice, and corn syrup in her breast milk, and nothing worked. She’d eventually have what we called “a blowout”. I knew we’d have to do something about this, but figured Breast Milk Is Best, so we were doing the right thing. See Breastfeeding a Preemie.
Anemia. At E’s pediatrician (I forgot which month checkup), they did a routine iron test. Elena tested so low they thought there was no way it could be correct. She was severely anemic—which could have accounted for her lack of energy/hunger/movement. She was immediately put on an iron supplement—and even though iron uptake is normally very fast, checkups week after week still had her testing very low. We started suspecting a problem with her chelating iron/heme in her blood. The test results proved normal, despite the low numbers. She was on the iron supplement for nearly a year. Needless to say, taking iron tends to lead to constipation—a problem we already had.

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