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.
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!
UPDATE:
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!
UPDATE:
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!
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