Our Friday Noorwood clinic appointment couldn't come sooner...and we weren't going to sugar-coat a thing.
However, the cardialogist and nurse didn't need to hear it from us to realize we needed to make changes. Jonah weighed in at 8.4 ounces, which was the same weight as the week before. In fact, Jonah had only gained 1 ounce since being discharged from the hospital 2 weeks ago. Considering he's supposed to gain 2 ounces every day, we were failing. All the crying, lack of sleep and throwing up was wasting all the calories we were feeding him.
The doc was quick to explain that GI issues and acid reflux are the biggest challenges post-Norwood, but there were a couple things we could try.
- Stop the Reglan. Reglan (or metoclopramide) is used to help Jonah's digestive system speed up the process. Metoclopramide increases muscle contractions in the upper digestive tract, speeding up the rate at which the stomach empties into the intestines. The idea is this helps with nausea and reflux, but it could also be a cause of his stomach cramping.
- Continuous feeding. Ideally, they want him to feel hungry and full sensations, but the shrinking and stretching of his stomach could also be causing his stomach discomfort. By continuous feeds, Jonah's stomach wouldn't have to work as hard during each feeding, essentially giving his digestive system more of a break. Although Jonah would need to be connected to a pump 24 hours a day, this was welcome news for parents who weren't sure how many more "gavage" feedings they could administer to a screaming baby.
So we left the Noorwood clinic, skipped the afternoon Reglan dose, and Jonah slept for the next 4 hours straight! Since coming off the Reglan and getting the continuous feeds, he has been much more content and peaceful. The throw-ups and stomach discomfort has decreased, and everyone is getting a little more sleep. Also because he's overall more relaxed, Jonah seems to be getting better with the pacifier and is even tolerating the bottle being presented at times. It all couldn't have come at a better time. We were able to attend his cousin Nola's 1st birthday party and hang out all weekend without the anxiety of Jonah's distress and discomfort. Not to mention he's much more adorable and sweet when he's not screaming his head off. We're praying this trend continues.
Hope everyone enjoyed the Labor Day weekend as much as we did!