"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.
It sounds like your world and hers have gotten a ton easier! Is this something she will overcome with age? Like, will she ever reach an age where maturity will allow her to recognize it's time to eat something, even without hunger?
I can't imagine living like that! I love to cook AND eat... Maybe someday Kaytar will discover that she loves cooking, and the eating will follow??
I'm so glad that this surgery has taken such a great weight off your shoulders. At least you know now that she is getting what she needs- and she doesn't have to GAG to get it!
You did the right thing. She now gets to eat just for the pure pleasure of it.
And boiled testicles sounds revolting.
I am so happy each time I read one of these posts!
Yes, you did do the right thing! Look how much happier everyone is! :) I am thrilled to read everyone is happy and healthy. You are an awesome Mom Kyla.
Again, I am thrilled for your family!
You are doing an amazing service to other mothers who will struggle alone until they find this blog.
You did the right thing; there's no other way to look at it. And, like you say, I hope it gives her the time she needs to start to want to eat for herself.
You describe it all so perfectly that I really do get it. Partly because of my own kid and mostly because you just explain it so well.
I'm glad you keep getting affirmation after affirmation that you guys did the right thing with this. Her weight and growth is gonna take off, huh?!
Boiled calf testicles are called Rocky Mountain Oysters here. Mmmm. NOT!
I so understand all this. L., who is EIGHT, hardly eats at all, as you know, and is revolted by food, too. A feeding tube isn't an option for him at his age, but oh, how I long to know he's been adequately fed--sometimes I wonder if we'll ever see that, but we'll plow away at it.
I hope KayTar will learn to integrate the two. Good for you for intervening so early
That is, by far, the best definition of feeding disorders I have ever heard. I have no idea what it is like but that gives me a huge clue.
My child never feels hunger because it doesn't connect. The whole brain-stomach I'm hungry nerve is broken. I'm so happy that Kaytar is getting the nurtrition she needs without the pressure..on both of you. Glad to hear she is feeling better!!! And thank you for educating ppl that would otherwise not understand.
Fear factor: that's a very compelling analogy. Wow.
The bull testicle thing really illustrates the issue well.
Reading this made me curious if her spells have been linked in any way to hypoglycemia? I know there is probably way more to it, but it made me wonder if there were some connection.
So glad you all got the tube and is getting the nutrients she needs to keep her body strong. And hoping one day the WANT TO kicks in.
This was excellent, Kyla. I feel like I already "got it", but when I hear it all over again, it totally reaffirms that you did the right thing.
I'm so glad this burden has been lifted from all of you. I hope there comes a day when she enjoys food, even if it is on her own terms.
What a relief that you don't have to agonize about getting her to eat and drink now. And what a relief for her not to have to eat when she can't stomach it! (That was a great explanation.)
Here's hoping that KayTar can learn to love food some day!
we keep telling Julia that in this family we love to eat. but I know you are right.
we are just mean.
it must be like being pregnant right? That is the ONLY time I cannot eat.
Oh, I totally get this Kyla. I get it because you've been so open and articulate all along with describing your girl and her difficulties with food, but I also get it because my E is a lot like Aliki's L. Not a day passes that I don't worry about his nutrition.
Good for you ALL for making this decision. I know it was agonizing, but it's so overwhelmingly clear that you guys made the best move for that little beauty.
It's interesting, isn't it, this cultural attachment to food and eating. And KayTar will still be participating in family rituals that include food, so hopefully over time she'll come to find enjoyment in it.
you SHOULD win $50,000, though. you deserve it!
this was a good post, and it did help me understand better (not that I was judging you before or anything)
You're so right, that an aversion to eating is inconceivable to most people. Opening that slice of her life to us gave me a world of understanding.
Food for posting! I wish I knew more/enough about cynophobia to post about it——I'm almost certain that it's genetic, given that it's traveled at least 3 generations in my family (and severely affects my daughter).
I love to cook and I love to eat and I love to feed other people. However, I have (mild) sensory issues and a LOT of food textures revolt me and I can't eat them without gagging and almost vomiting. I'm very very picky about what I eat and what new foods I try. I really hope that Kaytar will learn to separate the hideous chore of shoving gag-inducing foods into her mouth and the joy of taste and good texture, and learn to feed herself for joy and pleasure. Which is what every meal should be, in addition to fueling the body. You know, fuel for the soul as well! It absolutely sounds like you've made the right call concerning the gtube, in so many different ways.
I think the tube was a perfect solution for KayTar. If she ever decides to eat, great. But for the first time in her sweet little life, she's got some freedom. There isn't a battle between mom, bottle, and little girl.
Freedom is never really free, right?
complicated little beast......
and you totally made the right decision
I wish everyone would read this! Really. There are so many kids who, not necessarily to the extreme that K does, have sensory issues associated with eating. Instead of helping them, their parents decide the kid is being willful and difficult. It really breaks my heart. I was a terrible eater as a child and I was made to feel like an awful child because of it. K is so fortunate to have you, who understands, and was able to make the right decision for her and your family.
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