Another dreaded post. This is such a frustrating battle we have with Joel! The kid is amazing, I won't forget to add that. For a child who was intubated for the first 2+ months of his life, and then trached, it is almost unbelievable to me that he has near zero oral aversion. He puts everything in his mouth like a normal baby would. Unfortunately, his gag-reflex is on overdrive. I've wrote about this struggle before.
We have made progress, just not big progress. Our G.I. doc is now allowing us to feed Joel three times a day by mouth. That means that three times a day, we feed Joel some sort of stage 2 baby food, and he takes a few bites, and gags and throws up. :( I'm REALLY hoping that after his trach comes out this situation will improve some, but after reading what I have about traches, it doesn't sound like the trach itself should affect eating. It may just be from being intubated for so long, with the combination of the reflux that he has.
We've also come along in his tube feeds. He's still on J feeds (meaning food goes directly into his sm. intestines,) but we've added bolus feeds to his gastric. THIS IS HUGE! If he can keep from throwing up his G-feeds, we can advance to all gastric feeds. The risk here is aspirating, because having a trach increases that risk.....really, the bottom line here is that respiratory and feeding conflict with each other. Hurry up trach, GET OUT!
So right now, Joel's at 30mls,(that's one ounce) of formula in his tummy, once a day. If he can keep that down without puking for a week, it increases to that amount twice a day. Be praying! XO