From the Department of "Damn Irony, How Could You Be So Fickle": Two people who've never been known to pass up a brownie are raising a girl who can't put on weight no matter how hard we try.
It'd be funny if it weren't so worrisome.
Over the past few months, Hope has fallen off her own slow-but-sure growth curve of about 2 ounces a week or 1 pound every two months. It wasn't ideal, but it remained consistent since she was in utero, allaying concerns with the knowledge that she's humming along at her own slow course.
But Hope has remained at 8 pounds, 4 ounces for three weeks and gained 1 pound in about 3 months. We stuff her with prunes, oatmeal, sweet potatoes, carrots, boring stories and silly songs. We re-institute the 4 a.m. feeding we were so relieved to forfeit.
Zippo. No matter what we do, the scale doesn't move.
We're rapidly approaching the point where intervention may be necessary. Dr. Spitenup, who is as conservative as they come, first floated the idea of a fundoplication and G-tube surgery about two weeks ago.
The procedure would close off the upper part of the stomach to thwart acids from coming back up and install a feeding tube into her stomach to allow us to continually pump her with calories while she's sleeping.
We can't say we were surprised. But we were saddened. Feeding tubes are fairly common among those with CdLS, and Hope's lack of one was a point of pride that we perhaps naively interpreted as a good sign.
But after a while, you realize your pride isn't doing her any favors. Her inability to pack on pounds no doubt further hinders her development. She still hasn't sat up, perhaps because she's not large enough. The more we feed her, the more she vomits -- helping no one except our disgusting dog, Lulu, who ranks vomit as No. 3 on her favorite foods behind soiled diapers and dirty socks.
So we've come to accept that a feeding tube not only is a good idea, but we need to start moving on it quickly for Hope's sake. It would supplement -- but not replace -- normal feeds, and countless CdlS kids have thrived with them.
When Hope was born, her Grandma Clem said we'd have to throw away our expectations. She was right, but so much of this year has also been about learning to move behind our pride to do what's best for Hope.