The one thing we have been battling since Natalie was born is really bad reflux. Henry had a pretty good case of it when he was a baby, but given she has such a high risk for aspiration, it’s much more concerning. She’s been on various reflux meds, but the problem hasn’t really gone away. And whenever she gets sick, it seems to get an order of magnitude worse.
It was the last time she was sick that we finally decided to go see a pediatric GI to discuss options.
As a side not, she is sitting up more now, which is when the reflux tends to get better on it’s own naturally. But again, with her aspiration issues, I am not happy with the “let’s see if they grow out of it” we did with Henry.
The GI doctor said the vomiting could be reflux or it could be related to a milk or soy allergy. So in order to get the most accurate test results, he wanted to switch her to a hypoallergenic formula prior to the reflux study. Or I could got milk and soy free for at least two weeks, which he didn’t seem to think I would want to do. Clearly he doesn’t realize I love her so much more than milk.
Though the past two weeks have given me an appreciation for how prevalent milk & soy are in foods! I pretty much gave up on going out to eat and had to resort to trying things that should have never been invented (see “yogurt” above).
Thankfully, I did find a decent non-dairy creamer and I could still have my coffee!
Test day! There was a bit of a mix-up on how early they told us to be there and none of us were very happy by the time they finally called us back. And the very first thing they had to do was to put these “No-no’s” on her arms so she couldn’t manage to rip the pH probe out of her nose. She did still manage to swipe the nurse’s badge from her though. She was so excited about it, the nurse let her hang on to it for awhile.
She was also pretty excited about the “arm jails” and even tried to eat them. That’s about where the fun stopped though (also the end of pictures in the procedure room…)
The ph probe is in a NG tube that they run down the back of her throat into her esophagus and it measures how often stomach acid is traveling up her esophagus. She was not impressed with the doctor putting it in place, though she was mostly mad about being held down. She yelled enough that she wore herself out (unsurprisingly!).
Oh joy - another monitor! This one is recording her ph levels and has buttons we use if we are feeding her, laying her flat or if we see a reflux event. The nurse told me not to watch the monitor readings or it would drive me crazy. I tried to ignore it, but it was challenging!
She was not overly impressed by the arm jails after they had been on for awhile. And we didn’t realize how impossible it would be to dress her with them… We ended up putting her outfit on backwards, which made it harder to feed her, but at least she wasn’t a naked baby. ;)
Nonni took pity on the poor fussy girl and gave her extra snuggles to make up for the injustice of it all.
And after the 24 hour mark passed, she got to remove the probe and the No-No’s. I think she spent most of the day with her hands right at her face since it was no longer impossible. The things this girl has to deal with!
The results came back pretty quick and they weren’t great. While we only saw 1 visible reflux event, the monitor recorded over 230! That is a ridiculous amount and makes me feel better that I haven’t been over-stating how much of a problem it seems to be. Hopefully we get some guidance on path forward on managing it!
