|Pureed oatmeal, anyone?|
In other news, the food saga continues. One of Raya's new favorite words is "eat" and "bee-bowt" (seatbelt), both of which she says repeatedly whenever she sees her high chair. Even at 3:45 yesterday morning. She had woken us up screaming hysterically because her bed was saturated with 4 hours' worth of formula and bile thanks to the med port popping open on her extension tube. I had it taped shut nice & tightly but the extension got kinked and instead of setting off the pump alarm, the pressure popped the medicine port open, tape & all. After that, she was disoriented & obviously confused about what time it was, and would NOT go back to bed. It didn't matter what I did, she just kept crying & screaming.
Finally, since I didn't want anybody else joining us (well, besides Kaida who was already laying on the couch) I took her outside. As usual, she immediately stopped crying & laid her head on my shoulder. The unfortunate part was that even at 3:30 in the morning, it was still 86 degrees outside and was really muggy, so holding a sweaty toddler and sandwiching her fleece blanket between us was not a viable option. I thought she'd be ok when we went back in since she was calm but no, it started up again as soon as I reached for the door handle. Her high chair was sitting right next to the door so as soon as she saw it, she started reaching for it and saying, "eat! eat! bee-bowt!" (still crying, of course) so I finally gave up and put her in the chair and gave her a couple of Ritz crackers to gnaw on. Every 20 minutes or so, she'd start making her little noise to tell me she wanted more. I didn't dare go back to sleep because I didn't want her to choke on the crackers, so instead I sat on the couch from 4am-6am watching Hoarders on Netflix while she mutilated/smashed/played with/ate crackers.
At 6:00, I decided she'd had enough and hosed her off and put her back to bed. I flushed her G tube to make sure there wasn't any cracker gunk in it too. Then at 8:00 when she got up again, I drained her stomach & 45ml of yellow liquified cracker remnants came out. Delayed gastric emptying, anyone?
She's kind of gotten the hang of eating Ritz crackers (and by that I mean biting off little chunks until the entire cracker is in her mouth and then keeping her mouth closed until the saliva slowly carries it down her throat a little at a time until it's gone or mostly gone, and then repeating). The process takes her about 10-15 minutes per cracker though. At that rate, it would take her about 14 hours to consume her required 900 calories per day. Not that Ritz crackers are nutritionally complete. I guess my point is, just because she is now willing to stuff crackers in her mouth & swallow what she can, it will still take a lot of work & progress before she can eat enough to ditch the tube.
I think this whole process of teaching an exclusively tube-fed child to eat is more like climbing a whole mountain range (in dense fog) than just climbing a mountain. We just climbed Mt. Willingness-to-put-food-in-mouth and now we're on to Mt. Learning-what-to-do-with-it-next. Or at least that's what we think we're climbing next. :) That's where the fog part comes in. We think we can see where we're supposed to go next but sometimes the fog gets so thick that we can't see clearly and we wander around for a while before we make a breakthrough into a clear spot and can get back on track. (Did I mention that tangents and lame analogies are my forte'?)