Wednesday, November 7, 2007
Good day with an asterisk
Hope is a week old today. Eight days ago, we were at Big Boy for a final meal before this grand journey. Between bites of Mo's favorite -- the Slim Jim -- we assured ourselves, "We can do this."
That's good advice today. It isn't easy. When Hope was an abstraction in the womb, Mo felt some control over caring for her. Now that our little one is her own being, the protection instinct is overwhelming. And when we can't, it's heartbreaking.
Last night was a bad reminder that progress in the NICU doesn't always move in a straight line. After a good day, Hope threw up, choked on her vomit, couldn't resume her breathing and needed doctors to pump air into her lungs with a bag.
It occurred about 20 minutes after a particularly slow feed, and her blunderbuss father blames himself for putting her back to bed too soon after she mowed down her food. She is, after all, a Kurth and Feighan, so one day the managers of taco buffets may cower in her presence.
We hope that's all it was. The doctors didn't seem concerned enough to change treatment (that we know of) and figure it's just something to watch. But it's excruciating. After we left the hospital about 10:30 p.m., we lay in bed, awaking every three hours around the time of her feedings, willing the phone not to ring.
It didn't, but feeding may be issue. Little Hope already has made us proud by quadrupling her daily dosage of mother's milk since Saturday, but she's still getting the hang of this simultaneous breathe-suck-swallow thing. Sometimes, she falls asleep mid-feed. Other times, she forgets to breathe. Give the kid a break. It's only been four days.
Kids with CDLS have trouble with reflux, though, so it's cause for concern. Early Tuesday, nurses put a feeding tube down her nose as a fall-back option in case she's reluctant to take the bottle. That upset me and her -- Hope ripped it the tube when her Grandma Clem held her -- but we need to embrace whatever will help her.
The shame of it all was the episode occurred during a particularly good day. So wise ol' Mo is considering it a good day with an asterisk. And that's the right approach in the NICU, where progress is often measured in weeks not days.
By that yardstick, it's been a wonder week for Hope. She was born. She endured a bunch of tests and passed them all. Her stutter breath is improving. She's becoming a pacifier sucking champ. She's feeding. She's bonding big-time with Mom and seems to tolerate her father, too.