The Hunger Games of Tube Weaning Update #4

UPDATE #4:

Yikes...10 months later.  Maybe I should have just waited a year.  A lot changes when your child just eats, whereas before it was such a process to feed her.  Without the tubes, syringes, blending, freezer bags full of food, recipes, coolers wherever we went, the vomit, the button, the back up button.  A lot changes, as in you don't have to worry about ANY of that ANY longer.  It's life changing.

Until March 2020 Lydia was still getting medication through her tube until I decided to try out Zyrtec chewables.  She likes them.  Winning.  I am still playing around with iron tablets because, eww, but she's doing better with them.  We can honestly say we haven't used her tube for anything since maybe March.  It's still there because I am a rule follower and the Dr. has to tell me we passed the test before removing it. 

No food, no water, no meds for an sustained period of time, balanced diet, weight gain = passing the test...I just need to know how long sustained period of time is. 

I'll let you know after our GI appointment on the 21st of August.  Oh and I'm obsessed with taking pictures of her while she's eating....I just now realized that.  

UPDATE #3:

On October 1st we stopped blending any food for Lydia and stopped feeding her through the tube entirely.  She still takes morning and nighttime liquids through her tube with her medications.  We've stopped her vitamin d and part of her iron via the tube because she eats a chewable vitamin every night.  We've also switched a med from powder dissolved in water to a chewable tablet that she eats every night.  

Lydia continues to eat her morning and afternoon snacks and lunch at preschool.  She is eating breakfast earlier each day and sometimes before the ride to school.  She's still eating and asking for a lot of vegetables, she doesn't like fruit, and she drinks only water.  Lydia asks for Ritz crackers, shredded cheese and salami at every meal.  Last night she ate 4 oreos and I loved every minute of it as much as she did. 

Lydia's weight dropped a little more and then plateaued again after a little gain.  We're on the uphill climb again, just moving very slowly.  She is currently 27.5 pounds.  30 pounds by Christmas?  It is the holidays after all!

UPDATE #2:

On August 13th we had a check in with Dana, Lydia's dietitian.  Lydia is now eating all of her food orally except for 1 tube feeding a night after she is asleep.  She still takes liquids other than water and all medication through her gtube.

Lydia is now eating entire snacks and meals at preschool!  She's eating granola bars on the way to school and sometimes before bed.  She's found her sweet tooth and is particularly fond of mini marshmallows, mini m&ms and mini Oreos.  She eats broccoli, brussel sprouts, carrots and corn just as well as sweets.

Lydia has lost a total of 7% of her body weight and we hope it plateaus again and we don't hit 10%.

She is a rock star!

Original Post:

On July 1, 2019 we started a tube wean. Lydia is still 100% dependent on her g-tube for feedings and medicine. A tube wean means withholding 1, 2, 3 or all 4 of her tube feedings and letting her eat orally. The first week we withheld a snack, the second week a snack and lunch, and now breakfast, snack and lunch. We are only tube feeding her dinner after she's eaten dinner orally.

Lydia's oral consumption of food has gone from less than 1/8 of a teaspoon a day to at least one meal's worth of food every single day. She's learning what it means to be hungry and that eating food makes the hunger go away. She's exploring more food than ever before and is not picky.

Over the course of three weeks Lydia did lose 5% of her body weight and we will need to stop the Hunger Games if she goes beyond 10%. When she does hit 10% we will hold steady and see if she can maintain that weight for about a week before adding tube feedings back. Then she'll have to gain by eating orally and take her meds orally. She also has to go several months with absolutely zero things through the g-tube before it can be removed. She's by no means there but she has taken great strides in just three weeks.

We are so proud of her and continue to be amazed! Everything revolves around food right now so here's a bunch pictures of Lydia eating!