After weeks of trying, we finally got in Friday to see a pediatric gastroenterologist to address Hope's spitting up, acid reflux, so-so-feeding and begin the process of evaluating her sucking-swallowing-digesting system.
It's a big deal for CdLS kids. Many are on feeding tubes. Malrotated bowels causing blockage, other problems or death are a concern.
Hope's a bit ahead of the curve. She sucks like a champ, but often falls asleep or runs out of energy halfway through feeding. She can be sloppy. We still need to hold her upright for a half-hour after every feed to avoid throw-ups. At eight feedings a day that also take about a half hour each, you start talking about real time after a while. She's been on Prevacid for nearly three weeks. The acid reflux drug has prompted some improvement, but it's no panacea.
We weren't expecting a cure-all from the doctor, whom we'll call Dr. Spitenup, and the appointment proceeded something like this.
Dr. Spitenup: Describe her spitups. Is there blood? Mucus? Would you say her poops are more creamy or slimy? On a sliding scale of sliminess, what number would you give them? What percentage of the day does she stiffen like a board? When she cries mid-feeding, it is a cry of pain, communication or empathy for a world gone wrong? Is she a happy baby? What percentage of the day would you say she is happy? Have you noticed a difference from the Prevacid? What percentage? Would you say 20 percent? No. How about 44? When she spits up, does it come out of her mouth or nose? Nose, huh? That's unusual. Onto her bowel movements ...
Us: Ah. Um. Err. Uh.
Him: OK, let's go over all this. Normal, normal, normal, normal, normal, not-so-normal but nothing to worry about, normal, normal, normal. Even if she had major problems, we wouldn't do much until she is 2. See you in three weeks.
Us: Um. OK.
Hey, normal is good. We'll take it, but we're not quite sure we trust the good doctor's system of ordering no tests and evaluating Hope based on us picking numbers out of thin air. We're not sure what to expect in three weeks: If we say Hope cries 25 percent of the time during feedings rather than 30 does that mean his treatment is working? How is that anything but arbitrary?
Warned that Spitenup was unorthodox but good, we left the appointment feeling 36 percent relieved, 18 percent amused and 46 percent bewildered.