Thursday night, Robbie got his usual bedtime tube feeding- 7 oz of whole milk.
Normally at 12:30am, he'd get a slower drip of 26 calorie formula. That was the first thing we skipped.
He slept through the night just fine, which I expected. Woke up this morning and seemed content. I purposely skipped his morning nexium simply because that would involve giving him 1/2 ounce of water, and I wanted him thirsty.
I sent him to daycare with two Playtex sippers. One with 8 oz of milk, the other with 8 oz of apple juice. I also sent an infatrainer cup just for a different choice.
I was walking on air!
When I got free at work, I called to check in. Katie reported that he'd been playing with the cup a lot but didn't seem to be drinking, so she took the valve out. (I'd warned her that he doesn't suck, so that was probably going to need to be done.) He'd drank for a while and laughed and had a good time. Then he started playing and dumping it, so she put the valve back in.
They fed him breakfast and lunch. Each time he ate 3oz of purees. (That's pretty normal for him.) At that time, he was sleeping.
When I went to get him, she said he'd taken a few sips of juice, and drank a little more milk. I was so excited!
Then I opened the cups to see how much was gone. Almost none. I deflated.
When I got home, I measured it out. He drank right at an ounce of milk. There was just over an ounce of apple juice gone, but Katie said he really spilled a lot of that. He'd mostly played with it and maybe taken two swallows. Not much.
I offered more milk and he let me dribble a little in his mouth, but quickly started turning his head away and saying no.
I tried again at bath time (he sometimes will drink from an open cup in the bathtub) but we had more face hiding and "no!" (Though I swear it sounds more like he's saying "yeah" than "no" I know what he means.)
So he went to bed having consumed less than 1.5 ounces of liquid and 260 calories. A normal day really should have 20 oz of liquid and 1000 calories.
I wish I could say I felt more positive. I wish I didn't feel scared that this wasn't going to work. Logically, I want to say that if it doesn't, it's okay, we'll just go back to tubing like we were before. But I'm scared what it MEANS. If he fails, does that mean it will never work? Will he be a kid who has to take liquid through a tube when he's 20?
I think he'll get there with food. He's showing enough interest in flavors and self-feeding that I think some day, even if it's years from now, he'll "get" the food thing. But if he's so liquid averted that he never can take it, will he need a tube forever? I'm just scared.
It just wasn't a really good day. I overslept by a lot this morning and had to rush. Then I managed to really get my feelings hurt and end up angry over some comments made about kids with special needs and spent half the morning fighting tears.
Then the photo came from daycare and I was just so elated. To find out that it really had only been an ounce was just such a let down.
I feel so guilty that I feel let down, but I just do. He HAS to be thirsty, so why is he fighting it?
I keep thinking about the day he got his ear tubes and he drank 6oz of apple juice in about 20 minutes. He clearly CAN do it. That day he hadn't drank in about 12 hours and had been crying for an hour. He also was doped up on Ativan. I can't help but wonder how much that Ativan had to do with it. If it helped relieve his anxiety about drinking and that's why it worked.
I do believe it's mostly behavioral that he won't. But how do I combat that?
I just don't know.
Then, of course, there are so many variables. Maybe the 8oz of solid food sated him enough not to need drink. Maybe I should withhold solids for the weekend? But maybe that would be worse. Maybe he just needs a different kind of cup. Maybe he needs a different kind of juice.
I seriously have at least 6 different kinds of cups here and 5 kinds of juice. But who knows which combo might work, if any?
There is just so much unknown.
As stressful as the tube is, at least it's KNOWN. I KNOW I can get his calories in. I KNOW he's hydrated. I KNOW he'll be okay. Now, I don't.
I don't even know if I'll be okay.
I really appreciated all your comments and emails of support. Please keep them and the prayers coming. It really means a lot to me.