2003 Journal Links

So far experience has taught me that people who meet Archie tend to fall into two categories: they either treat him as an average, run-of-the-mill baby, or they regard him as a baby whose entire identity is defined by that fact that he has Down syndrome. Those people who fall in the latter category are always quick to tell me that this specific behavior of Archie's, or that particular physical feature unique to the baby, is contributed entirely to Archie's extra twenty-first chromosome. "Babies with Down syndrome have a hard time doing this," they'll say. "Babies like this can't do that," they'll explain.

Archie's nurse who came to examine him Thursday afternoon fit into the second category. Or, rather, she did until this visit. Archie studied the nurse's face as she listened to his heart and lungs, as she took his temperature. He blinked his blue eyes as if he were flirting with her. As the baby batted his long eyelashes, the nurse's icy exterior melted away. "Hey," she said to the little man. "How are you? You're really cute, aren't you?"

The nurse was even nicer after she weighed Archie. "He gained three and a half ounces," she reported. "That's a great weight gain for one week. I'm really happy with that." And then the nurse opened herself up to me, to Archie. As she took the baby's blood pressure, the nurse told me about another baby she takes care of, a little girl with Down syndrome who also had heart surgery in Charleston. "But that little girl has a feeding tube," she offered. "Most babies who have Down syndrome and went through everything he did do," she said, gesturing toward Archie.

"I know," I said, nodding. "I guess we just got lucky."

Lucky, yes, but Archie's battle to gain weight is a daily source of anxiety in our household. My husband and I are always searching for a way to make the baby's feeds easier, more efficient. Last weekend John visited Baby Superstore to find bottles and nipples to replace the deteriorating collection we brought home from the hospital. Pulling from his coat pocket a sample from home, John went about the business of comparing it to each designer "feeding system" on the store's wall full of bottles and nipples. John bought several items belonging to the two systems most closely resembling the nipples and bottles Archie has come to favor. He brought the items home, carrying them under his arm like a prize.

Two days later Archie's grandmother went to the hospital and pushed the button of the NICU's intercom. "This is Archie's grandmother," she explained. "Can I come in and talk to someone about buying some nipples?" She left several minutes later with a full trash bag, acquired at no charge.

"The lady who gave me the nipples said that she remembered Archie. She was happy to hear he's doing well," my mom reported. "And, you know, she told me that a lot of the babies who go home from the NICU prefer the hospital nipples. She said to come back when we needed more."

I think I'll dedicate the baby's weight gain this week to the kindness of old friends who choose to consider the little man just an average, run-of-the-mill baby.