Saturday, May 1, 2010

Tube Weaning: Day 1

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.

Later morning, I got a text from daycare with the message "Someone is drinking" with the photo you see.

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.



Stacie said...

Oh Trish! How did I miss this? I am sending love and strength your way...I know this has to be so stressful for you. Just keep taking things one day at a time and whatever you do, stay away from those damn what ifs!

I have my fingers crossed for you guys!

Shannon said...

Aw Trish, that sounds like a sucky day. I'm really sorry. You're doing great and I agree with Stacie, take it one day at a time. He'll get there, even if it is on "Robbie Time". I know he's seeing lots of different people, are there any child psychiatrists specializing in stuff like this he could see? Maybe he needs to be on some anti-anxiety med for a while to help him get over it?

Deep Thinker said...

For it being the first day, I think it's great that he tried. It's not gonna all happen overnight. He has to get used to the feeling of the liquids, right?

Laura said...

Hang in there! Cheer him on for even touching it to his lips. Every sip is wonderful and praise him for it. You can do this, he can do this. ((HUGS)) I know how scary this is, just a little more time.

Maureen said...

An ounce of milk is a lot more than what he has been doing. And even playing with it in his mouth is a good thing. You even said this would not be easy, so just one day at a time.

Have you tried straws? Neither of my boys liked sippy cups much for a long time. As in neither of them would use them until closer to 2. Both learned straws (with initially putting in milkshakes/smoothies, something thick that we could sip to the top then give it to them... with wide short straws so there was not a whole lot of sucking that needed to be done) around their first birthday. The only exception with sippy cups that they did early on was the Nuby sippy cups were the first one both of my kids mastered, mainly because you can bite them instead of sip on them.

Good luck! I have my doubts that Robbie will want to be taking a feeding pump to school during middle school if he can drink out of a cup (even if he doesn't like to). He would have to be one really strong willed kid to choose a feeding pump over a cup (particularly with the peer pressure I'm sure he would get). If he did get his liquids through the tube during high school, at least you wouldn't to worry about alcohol parties if you have him leave his tube supplies at home ;-)

Adriane said...

I'm so so sorry. One day at a time is a good motto though it doesn't help things today. I am thinking about you guys this weekend.

The Blatchford Family said...

Good luck Trish & Robbie!

I am thinking that I am going to have to do a weekend of bottle-weaning with Lincoln. He refuses to drink more than an ounce or so from a sippy/straw cup, and will only drink from a bottle while falling asleep. It is so frustating! And I can only imagine how much worse it would be dealing with a tube & pump. You have all my thoughts & prayers with you this weekend!

Lissa said...

Hi, I've never posted, but I have been reading. I had problems with my son to get him to drink his bottles when he was a baby, it was a daily struggle. One thing that I finally figured out when he kept rejecting the sippy cups was to use the Rubbermaid plastic juice boxes. They have a straw, but if you squeeze the box, the liquid will come out of the straw. Anyway, that was the only thing he used to a long time.

I wish you luck all the way from Canada!

Anthony and Ashleys Mommy said...

Just wanted to say Anthony could never drink with cups that had valves in them. I tried a few different sippy cups and the ones he had the best success were with the cheap disposable plastic cups. These Even when we switched to straw cups down the road I had to take the valve out. He would sometimes get some drink on the floor but he was drinking. =-)

Good luck! I think you and robbie are doing an awesome job!

Searching said...

Yay Robbie!!! How exciting to have gotten to this step! Yes, it is a LONG and HARD road, but he is slowly tiptoeing down it. Yes, kids can take a very long time to get from all tube to no tube. Yes, they CAN do it, in their own time. Yes, it sucks and it tough and horrible on the mommies. Yes, some do need it longer than others. Yes, they CAN go to school with it in. Yes, they can be "normal" and eat (or don't) at school and get tube feeds at home. You well know how diff babies are. But he's getting there. He doesn't have a severe oral aversion where he refuses ANYTHING in his mouth, which is GOOD! I'm so proud of him! Can't wait to catch up on the rest of his accomplishments. Hang in there!!!

Tasha said...

((HUG)) Prayers for sure.

You can do this. I know you can. Robbie can do this. I know he can.

At least give yourself three days to try it.

Tracy said...

((hugs)) and lots of prayers

I hope Robbie "gets food" sooner rather than later. He will get it though!

You're a great mom and he's lucky to have you. Love you!

oleyfriends said...

I saw your blog and wanted to tell you we have a few resources for parents trying to wean their kids from tube feeding that might be helpful for you.

Go to:
and scroll down to the wean from tube feedings section --it's at the bottom.

Best of luck! It won't be an easy process, but it will be rewarding.

Warm regards,

Roslyn Dahl
Oley Foundation Staff

Beth said...

I recently found this great website all about kids who won't eat, feeding tubes, and all kinds of treatment options. It's a great resource and really helped me with my daughter.