Sunday, May 2, 2010

Tube weaning: Day 2

Today was better.

Robbie woke up earlier than usual, about 7:30. I got him up and changed and then we had some snuggle time. He wanted to go play and almost immediately it because apparent he was cranky. Right away, I offered him some apple juice. That just made him angrier. MUCH angrier.

At this point I was really worried. I knew he was cranky because he was hungry and/or thirsty. But if he wouldn't even take that cue to try something, we were in trouble.

As I stood here wondering if it was hopeless, I remembered some advice from my preemie board to try warmed milk instead of cold. I was skeptical, but willing to try anything, so I warmed 2 oz of milk in the infatrainer cup (it only holds 80ml) and hoped for the best.

I got him snuggled up onto my lap the way we used to bottle feed and dripped a little milk in his mouth. Right away, he settled down and licked his lips. He looked decidedly pleased. So we kept going. While he was drinking, sip by slow, deliberate sip, Becky called to check in. She was pleased to hear things were already looking up. We were nearly buzzing on the phone, all the while Robbie is sipping milk.

And then he finished it!
I got up and warmed some more. The whole 80ml this time. And he drank all of that, too! That's 4 2/3 oz for those of you who haven't memorized the conversion. It took about 40 minutes to get all of it down, and that last 1/2 oz did seem to be a good bit more work, but he did it.

I gave him about 15 minutes to digest a little, then tried some solids. He ate about 2oz of baby food. Not a lot, but considering that his stomach now had over 6oz of volume in it, I felt pretty good. His tube feedings were 7oz of milk.

Around 11, he climbed into my lap for another snuggle, so I offered again and he drank another 1/2 oz but then started to get agitated. I was frustrated and wanted more but quickly gave myself a talk about not pushing and letting Robbie learn what he needed.

At noon, I offered both juice & milk, both of which were met with immediate anger. I quickly switched approaches and tried solids. Another 2oz. Not a lot, but it was something.

Then came nap time. He slept about 2 hours and woke up in a good mood. I gave him a few minutes to play, then just asked him if he wanted a drink. He quickly turned his head to the side and said no. (Hey, if nothing else, this experiment taught him a new word, right?) I didn't even try.

We went for solids again. This time it was chicken with gravy, which is probably his favorite meal. (Don't ask me. I think it smells like dog food, too.) and that went EXTREMELY well. Not only did he eat the whole thing, but he was self feeding! He's loved to "stir" forever. Doesn't matter if it's real stirring or pretend stirring, he likes to mix a spoon into a cup or bowl. This time he was stirring and came away with a bit of food stuck to the spoon and stuck it in his mouth. I cheered, then encouraged him to do it again. He actually complied!

Any time he'd start to resist my efforts to feed him, I'd ask him first to stir, then to "take a bite." and he'd do it. He wasn't getting a lot in his mouth from his efforts, but it was something. And if he had his mouth open, I could give him a bite from my spoon.

Shortly after feeding time, we all headed out. David's car was in the shop (insert deep sigh here.) and then we had a Derby party to attend. I had very mixed feelings about the party. I really, really wanted to go but I was so worried about what it would mean for Robbie. Would he eat at all away from home? If he got hungry or thirsty would he turn into a whining, sobbing mess and annoy all the guests? We talked to the hostess about playing it by ear and decided to go.

Fortunately it went well. Robbie was in heaven because the house set up allowed him to come inside and outside at will and he proceeded to do so approximately 437 times. The hostess of the party is an amazing cook, so we were all eating and watching the Derby. Robbie [s]stole toys from[/s] played with the other kids. After the Derby itself was over (thanks for nothin', Line Of David) one of the kids at the party who is near Robbie's age was enjoying a sippy of milk. I hoped that peer pressure might work in my favor and warmed Robbie's cup as well.

We found a chair and I gave it a shot. Much to my surprise, he was happy again! My friends at the party were so supportive. They asked if they could cheer a little, wanting to, but also not wanting to spook him. Cheering ensued. Robbie looked proud. I certainly was. He ended up drinking about 3oz before he was ready to go play again. It was awesome.

We headed home, arriving with about an hour before Robbie's bedtime. We had a little snuggle/play time and I found myself wondering if I could get him to drink just a little bit before bed. A lot of kids like to drink before settling down for the night, right? So I filled a cup with 4 oz of warmed milk and crossed my fingers.

Success again! He snuggled up into my arms and let me dribble milk into his mouth again. At this point he just seemed so content. He was cozied up in my lap and just looked happy. I remembered when I'd seen this look before. More than a year and a half ago, home from the NICU, happily eating in his mother's arms. I thought of all the months of tender moments we'd missed because feeding was a burden instead of a bond.

I knew this process would be emotional. I prepared myself for frustration, worry, and disappointment. But I hadn't expected all the retrospection and regret. I hadn't anticipated to find myself sobbing while watching my nearly 2 year old sip milk. But there I was anyway. David seemed confused. "Why are you crying? This is a good thing." I couldn't explain without crying more, so I muttered something about just being overwhelmed. He was clearly still lost, but let it drop.

He shortly started to get a little antsy, so I pulled out the big guns- I turned on Handy Manny. He instantly froze and settled in for a good time with some talking tools. All the while, he was letting me give him tiny tastes from a Playtex Sipper. In the end, it was another 3oz. (95ml, to be exact.)

I was thrilled. After his show was over and I was properly chastised for singing along with the tools (this suddenly is very unacceptable behavior) we did the bedtime routine and put him to bed. It might have taken him 87 seconds to fall asleep. It was a very busy day.

By the end of the days, he'd taken 11.4 oz of milk and 6.5 oz of baby food. (And a few cheez-its, but who's counting?) That gave him 406 calories for the day. He needs more than double that to thrive on, but for today, it was enough to survive on, both for his body and my fortitude.



Mrs. V said...

Woo-HOO!!!!!!!!!!! I'm cheering for both of you! Great news! :-)

Brian said...
This comment has been removed by the author.
kcoleman said...

I've never posted, but read often. We've been weaning from the tube for several months now. At first, he wouldn't take a sippy but would take a bottle. I hated to give my 18 month old a bottle, but it was better than the tube. Now he's taking a sippy fine.
We also heat up milk. He seems to really hate it cold. We just switched from EleCare to Pediasure. What about trying the Pediasure since it has more calories? Just an idea.
Our surgeon said we needed to go 3-6 months w/out using the tube for feeding or venting. (after reading your story with having the g-tube removed and then inserted, we're not in a huge hurry to pull it.) We have gone since March 10th, and have suffered a little weight loss. It's fine, just another bump in the road.
We first started weaning months ago. We would do oral feeds during the day, which was mostly formula, but turned into more and more food. We would supplement at night with tube feeds.
Since March 10th we've been 100% oral.
You'll get there.

Tracy said...

Yay! Can you hear me cheering all the way from Florida?

I have a HUGE smile on my face. That is absolutely awesome. Good for you and good for Robbie.

And that picture...what a cozy little guy snuggling with his momma.
You both look like a little bit of heaven.

Adriane said...

Great news!!!!!!

Laura said...

OMGOMGOMGOMG!!! It's working Trish! He's doing it!?!??!! WOwowowowowow! I'm so excited. Keep up the excellent work, GO ROBBIE GO!

Ivory said...

WAHOO!!!! What a great day, I hope today continues the trend!!

The Blatchford Family said...

This is just wonderful news!!

We give Lincoln half & half instead of whole milk, because it is 40cal/oz instead of something like 16cal/oz or whatever it is that whole milk has. We started out just adding a few oz of half & half to whole milk to get him used to it. But now he drinks it straight up. One 8oz bottle is 320cal!

I know at this point you probably don't want to change anything and risk messing with the success you are having, but I just thought I would put that out there. Lincoln is a terrible eater, and his bottles of half & half are the only way we would ever meet our calorie goals.

Good luck with day #3! :)

The Quarke Family said...

Oh my goodness, that sounds like huge progress in such a short space of time ... Not that I know anything about this, but I have a feeling it's your (seemingly endless) patience that will make the difference, the not-forcing, and respecting his 'No!' and not pushing him.

You must be so proud of both of you. Good luck as you go on with this.

Alex said...

Thats fantastic!!! You're so strong Momma and Robbie is amazing. Keep up the GREAT work.

Tasha said...

WOOOO!!! That rocks! Good job dude!

Maureen said...

Yea Robbie!

Have you had the fortune (or misfortune depending on your point of view) of watching "Mighty Machine" DVDs. They are directed at an older audience than Robbie, but both of my boys LOVE any type of machine and have been mesmerized by them from a young age. Essentially, it is various motorized vehicles (trucks, snow plows, boats, fire engines, planes, tractors) talking to you in these really bad fake voices telling you what they do. Each vehicle has its own personality.

My kids love drinking half and half or heavy cream just for the sake of drinking it. I don't particularly encourage this as it really is not well rounded in the type of calories it provides.

S said...

Great job Robbie!!! Keep it up. I'm so happy for you Trish!

Azaera said...

That's amazing!! Way to go Robbie!! And Trish of course too. Good work.

Trish said...

Maureen, no, I think I've missed that treasure. I don't think I'll seek it out. I'm pretty picky about the shows I can tolerate.
Robbie also likes Yo Gabba Gabba, but I seriously can't take it. I'm such a mean momma!

Quarke Family,
Thanks for the huge laugh. I seriously just guffawed at "endless patience." I swear I'm reading this to my husband later. Anyone who knows me that I'm pretty much the least patient person in history.
I sometimes joke that I prayed for patience so God gave me a preemie. I honestly have no choice. Pushing only leads to him shutting down. I know because I have been impatient and tried to push. Lessons learned the hard way.

To the various suggestions of increased calories, I have a few ideas on that. I might even try adding a scoop of formula to his bottles and see if he'll take that. That's less volume, more calories and more nutrition.
If he objects to the flavor, I will try some cream with his milk.
If that doesn't work. well.. I might cry. *LOL*

Anonymous said...

Trish i'm overjoyed for you!! its SUCH fantastic progress. I've read your blog for years...we were pregnant and due at same time. My child has had pretty severe reflux too (but not as badly as poor robbie) and we've also had lots of feeding oh man it requires patience doesn't it. you're doing so well. i just can't believe how much liquid he's had already. i shall be holding my breath and cheering you on. oh and i totally understand you crying. i would feel exactly the same. all those lost moments. lets hope you have lots of peaceful feeding times ahead. love mel x

The Quarke Family said...

:) Glad I made you laugh! Well ... you've learned it then, which is much of a muchness, you still seem to be doing a fantastic job. Sounds like yesterday went great too, fingers crossed for daycare!

Searching said...

YAY Robbie!!! That is fantastic progress already!!! :) :) :) Yay for mommy too!!!