Wednesday, May 5, 2010

Tube Weaning: Day 5

Total regression.

He didn't drink a single drop today. Not 1 ml. He ate 10.5 oz of baby food, several crackers, a couple of puffs and licked the juice of some ravioli off a spoon. Less than 300 calories.

I ended up tubing him 20oz of formula at bedtime. (It's still going.)

I don't know what to say. Daycare said he just wasn't interested. Every time they offered, he'd push the cup away. They tried some peer pressure by having him watch the other kids drinking. He didn't care. He wanted nothing to do with the cup.

Home was no different. I tried giving him some tastes of different juices by dipping my finger and rubbing his lips. He let me do that until he realized what I was doing, then freaked out again.

I made a sippy of grape juice, a baby bottle of water and an infatrainer of water and put them on the end table. He carried the sippy cup around for a while. He shook it and sprayed grape juice everywhere. I just let him go. (And washed the floors later.) He grabbed the baby bottle and came to my lap and snuggled. You'd have thought he came to have the bottle, but he just wanted to play with it. I took it and pretended to drink from it and he'd snatch it away, but never did he put the nipple in his mouth.

I don't know what to think or how to feel. If you pick a negative emotion from the dictionary, it's a good bet I'm feeling it. I'm sad, frustrated, angry and worried. I'm confused. I'm lost.

I can see him making gains with solids. He's more willing to try new flavors. Tonight he was excited to have a new set of metal silverware and spent a lot of time chopping at his ravioli, scooping it, stabbing it. Then putting the utensil in his mouth. He never got a bite of ravioli itself, but he certainly got a taste of the sauce and just kept going.

He loves cheez-its. Tonight David and I were just talking about crackers, Robbie heard the word and ran to the cabinet where they are kept and pointed and whined until I got up to get him one. You'd think all those crackers would make him thirsty.

At one point he found a snack bag of puffs and brought it to me, wanting it opened. As soon as I complied, he dug his hand in, grabbed one and popped it in his mouth immediately. He seemed surprised it wasn't as yummy as a cheez-it, but ate it anyway. Came back for more later.

But he is totally liquid averse. And I have no idea what to do about it.

For now, I've decided we will not actively encourage drinking for a bit. A cup or bottle will be available at ALL times. Just within his sight. But no asking if he wants a drink. No attempting to give him a sip. We will get nowhere while he is still squealing in protest every time he sees you holding a drink.

I do think that I'm going to continue to ONLY tube him at night. It's not ideal, but even if I have to give him all 20oz of hydration at night, and can use that to get enough calories to sustain him in, MAYBE he'd still be hungry & thirsty enough during the day to be motivated? I don't know. There is a theory that any kid on a continuous feed even at night won't feel normal hunger & thirst signals.

But where do I draw the line? Yes, when I let him go 2 days with nothing in him, he drank a few ounces. But not enough to live on. But when I added just enough to keep his body functioning, he decided that was enough not to have to do anything.

I'm willing to be patient, but I honestly don't know if I'm doing the right things to set him on the path to success.

I knew this was going to be difficult. I knew it was going to be harder on me than him. I knew it wasn't going to happen overnight. I did not anticipate the depths of despair I would experience. If it helps him, it's 100% worth it. I just wish I had a crystal ball to tell me that.

--Trish

8 comments:

Mrs.Spit said...

Aww Trish, I'm so sorry. I wish I had better answers.

Anonymous said...

I'm sorry its not going quite as well as you planned...i heard somewhere it takes 2 weeks to create a habit - hang in there! Hugs to you and your sweet boy!

Patti B.

kcoleman said...

I'm sorry Trish.
We went (well, still going) through a lot of the same things. I think these kids are the exception to the whole "2 weeks to create a habit" thing. We have done the same things you are doing now, and overtime it seems to have worked. We also would put a bottle out and we just left it on the floor in the living room. He finally started coming over to it and drinking from it. Then eventually we moved to a cup. We hit a huge brick wall at one point where he would not eat anything (milk or solids) because he knew if he held out, he would get the tube at night. And after a while, that stubbornness came to an end and every day he would eat/drink a little more and we would tube less at night. It hasn’t been an easy battle, but one that is getting easier. We still have small battles but we’re getting there.
Robbie has had such a tough time, and so have you and David.
I’m sorry I have no words of advice, only encouragement and it will get better. Hang in there.

Anthony and Ashleys Mommy said...

i'm so sorry. I'm not going to offer advice cause Anthony never had feeding issues. But i know a fellow mom blogger whose daughter had major feeding issues http://lizmccarthy.blogspot.com

her daughter is now eating pretty normally. she had her in therapy for eating. i can't remember the actual name of the therapy she got for her but i'm sure she could tell you more. It was more then OT.I can't remember if you had tried this for robbie or not. But i know how it feels when you see your child struggling with something so major (in my case its my sons ability to speak) and how you will try anything to help!

Kim

ggop said...

So sorry this is going worse than expected on day 5. All this change must be hard on Robbie too. I completely get your frustration and tears. Hoping he slowly increases his fluid intake in coming weeks.

Alex said...

I'm sorry you're feeling down. Its got to be so hard to be doing whats best for your child for his future but be unsure about how its playing out now. I think not forcing the drinking offers is a great idea. Let him think its his idea.

I'm still gaining such inspiration from you and when my son ate grilled cheese, cheese quesadilla, and trail mix nuts and raisins yesterday(all foods he's refused to eat before) I silently thanked you again for your strong resolve. It really has given me the strength to stay strong and insist on him eating whats offered.

I think regression is normal especially given Robbie's history and just continue to be strong. So many of us are sending positive thoughts your way. It feels like forever probably but it really has just been a short time since you started.

Tracy said...

It's definitely not an easy path that you and Robbie are on.

I'm pulling for you and praying that things improve over time and you have the strength and grace to get through it. I know you can do it and Robbie can do it too! It's having the hope that things will get better and easier that is so difficult to hold on to.

Love you!

Tasha said...

((HUG)) I think he is trying to see how far he can push you. You mentioned he didn't want you to have the bottle, so he knows what it is for and that it is his. He's just refusing to drink it. ((HUG))