Finding answers

Our littlest one (ironically, the oldest of our triplets) finally made it to 11 pounds. It was last month, on the girls’ first birthday.

Little Lily was diagnosed with Intrauterine Growth Retardation (IUGR) at seventeen weeks gestation. This isn’t a disease; it’s basically just a description of the fact that, for some unknown reason, she was far smaller than she should have been. The perinatologist didn’t expect her to live, but Lily is a fighter. Eleven weeks later, she was born small for gestational age (SGA). At one pound and two ounces, she was less than half her sisters’ weights. We’ve struggled with getting her weight up all year, even during the three months she was in the hospital. She’s made progress, but not enough. Sometimes she fights the bottle. Often she doesn’t fight, but merely smiles instead of eating.

The pediatrician and the pediatric gastroenterologist have a lot of ideas. Until now, we’ve assumed it was reflux. But it could be gastritis. Or an allergy. For the most part, the plan has been to see if it fixes itself. So far the plan hasn’t been working exceptionally well. Her development is impressive for such a tiny baby who was in the hospital for so long, but without better weight gain we fear that her development will start to suffer soon.

This puts me in an awkward spot, because I generally trust doctors; I see many people on forums and blogs who have “studied” at Google Med School and seem to think they know more than their doctors. I don’t want to be that person. We have good doctors, knowledgeable doctors who are experts in their fields, and no amount of book-reading or internet-surfing is going to give me their knowledge.

But of course I still do it. Because when you get frustrated enough for long enough, and when the experts aren’t giving you any answers at all, you start thinking that maybe you’ll happen to find that one piece of information that will make everything click. And a few days ago, I felt like that was happening. I found the website for the Child Growth Foundation. If you have a child with a growth problem, you should definitely take a look at the CGF’s site. They have excellent resources, including many informative booklets in PDF form. I read their booklet on Intrauterine Growth Retardation, and I have a lot more questions for our doctor now.

The booklet describes many things that we go through with Lily. The fact that she is still so far below the third percentile on the growth charts that she looks to be in the negative numbers. The fact that she will sometimes eat cereal or meat or fruit for several days, and then she will refuse for a few days. The fact that she seems completely uninterested in food, even if she hasn’t eaten in hours. Even her mood swings were covered.

The booklet didn’t explain how to “cure” these problems, but it described them. It described them as being a part of having a child with extreme IUGR whose weight doesn’t catch up. It offered some advice; for example, IUGR babies tend to have low blood sugar, which can cause the crankiness.

After a year of trying to figure out the source of Lily’s issues, the source might be the one thing that was obvious from the beginning: she is really tiny, and always has been. It might be that we have been striving for the wrong goal; we’ve sought to cure some unrelated source of her problems, but perhaps we should have been concentrating on how to best manage them.

I’m hopeful that this new information will help us. But I’m still going to discuss it with our doctor, because as I said, I trust the doctor above all else, even a very professional-looking booklet from the Internet. And I think that’s for the best.