"Kyla, just calm down and go with the flow already!"
TA DA! It was an easy one to figure out after all.
Yesterday, she ate at 11am, 3pm, 8pm, and 12am. This morning she had 4 ounces at 7am and 8 ounces at 11:20am. See? We're flowing. It will take a bit for it to solidify into somewhat of a normal routine, but as long as she is getting what she needs daily, the rest doesn't matter much. But you might be wondering, "Hey! Wasn't this whole tube thing just supposed to be supplemental anyway?"
You are correct! It was supposed to be supplemental! However, I think we underestimated just HOW MUCH KayTar dislikes eating and drinking. As much relief as we feel now that we know she is getting what she needs, I think it pales in comparison to the relief KayTar feels now that she is free from the work of eating and drinking.
The bottle has gone bye-bye. We weren't sure how it was going to happen, really. We didn't have a plan at all. In fact, the day we got home from the hospital, she asked for one and we gave it to her. She took a sip, handed it back and said, "NO!" And that was the last time she had a drink from the bottle. There was one day a week or so later where she caught sight of one and DEMANDED it, but I said, "Sorry, we're done with bottles!" and handed her a cup of Pediasure instead. She got mad and cried a little, then she rubbed her blanket on her face, calmed down and never asked for one again. She did not drink the Pediasure, though. We are offering sippy cups, open cups, straw cups...but she's not really into it, regardless of what they are filled with. She has a few sips per day and that is all really. Fair enough, kiddo.
As far as food goes, well, that hasn't changed much. Over the course of the day yesterday, she had two chicken nuggets, which was BY FAR the most food she's had in the 14 days since her surgery. She takes a bite of something when the desire for a bit of flavor overrides the general disdain for putting food into her mouth, I think. She might ask for a little bag of chips, but she takes one and leaves the rest. Or she says, "Mmmm! Nuggets! I love nuggets!" but she is perfectly happy only taking a little nibble from one. I'm going to go out on a limb and say, once again, that we made the right call with the tube business.
One day maybe, one glorious day, she'll decide eating is okay...she'll learn to enjoy it on her own terms. This tube will give her that freedom, we think. It separates the terrible chore from what might become enjoyment; a little of this flavor, a smidgen of that texture, the mouthwatering sensation from a delicious aroma. Most people don't understand this, I know. Some people might even think we've done her a disservice by separating the two, how will she ever eat on her own if she doesn't HAVE TO do it? But for KayTar, who somehow lacks the internal drive, the HAVE TO isn't a motivator, it never has been...we are hoping that one day, the WANT TO will take over.
Think about yourself for a moment, why do you eat? Sure, you eat because you feel hunger...but what do you choose to eat when you feel that hunger? Foods you ENJOY. If it was lunchtime and someone plopped some boiled bull testicles down in front of you, would you chow down or would you politely decline? This is how KayTar feels about eating, usually. We might as well be offering boiled testicles, rather than chicken and fries. But maybe, if you were really hungry, STARVING, you'd go ahead and eat...just to survive. But KayTar, she doesn't seem to feel that hunger, that starvation. The only way we knew she was having hypoglycemic spells was the dizziness. She never gave any other the indication. By the time my blood sugar dips so low that I'm dizzy, I am ravenous....not KayTar, though. The thought of food, getting it on her hands, letting it touch her lips, her tongue, her teeth...the thought of chewing and swallowing...it literally turns her stomach. She used to gag and vomit during almost every meal. We've come a long way from that, she is more assertive, she protects herself better, and she has even started to enjoy some things over time...but at the heart of it, she still feels that way about eating in general. It is an experience she prefers to avoid. And so our hope is this, that one day she might discover the joy of food, of eating...and after that, the nutrition will follow. In the meantime, though, we will continue to give her what we know she needs and we have no doubts that we've made the best decision possible for her.
PS: Sometimes when I discuss this stuff, I feel like I'm speaking a foreign language. Eating, the enjoyment and necessity of it, is so natural and ingrained for most of us that understanding how KayTar feels about all of it doesn't quite compute. We have industries built around humans and their great love of food, vast and varied cuisines, gastronomy even...our world revolves around mealtime. We have lunch breaks, family dinners. We go out to eat with others for companionship, for business. We invite people to our homes and cook for them, we have barbecues in the backyard. Holidays revolve around special meals, sitting around a large table and eating together. Food is a pillar in our culture. It is so contrary to think there are adults or children who don't adhere to these norms. When I talk about this, people often think more along the lines of picky preschooler asserting her independence, which makes the whole tube thing seem kind of insane. This is not that. I wrote this in hopes that is will make it all a little less difficult to understand from the outside.
Feeding disorders: When every meal is a scene from Fear Factor, but you never win $50,000.