To answer today’s Feeding Tube Awareness question: Why do you/does your child have the feeding tube they have now? Today, we highlight the medical conditions that can require tube feeding.
There are so many different reasons why children or adults rely on Feeding Tubes. Whitney K. was born Congenital Diaphragmatic Hernia. (Not all CDH babies require feeding tubes) There are so many different types of this birth defect. Whitney was missing 75% of her right side diaphragm. The cause/reason is unknown. So her liver and intestines developed in her chest causing her lungs to be severely under-developed and pushing her heart to the left. When she was born she was given a 20% chance to survive. She was intubated immediately (breathing machine). She was put on the ECMO (heart and lung bypass) machine at one day old. After 6 days she was able to have the CDH repair surgery. She continued to require a breathing tube for a whole month. Then it was time to try the bottle. She could only manage 5-10 ml's at a time and was always spitting that up. Basically, Whitney was unable to learn out to eat, because the first weeks of life, eating is an instinct, but after that, it’s a learned behavior. After a month of working on bottle feeds in the NICU, she was able to go home at 56 days old! She came home on oxygen. When she was home she would scream every time we tried to feed her. No matter how comfortable she was, when that bottle came out, she screamed. And vomited. About three months of Failure to Thrive, she needed the NG tube. Whitney learned that eating was painful, too many bad experiences. She had severe oral aversions (due to the NICU), dysphasia, GERD, and aspirated. I could only feed her when she was asleep and even then she didn't have the stamina to drink a full bottle. The nutritionist told us we couldn't leave the hospital until she was gaining weight on the NG tube. I would feed her a bottle 3 times a day and she could only drink about 2-4oz at a time. Even with the formula being 30cal/oz, it wasn’t enough. Plus she vomited so much with the tube. Nine months with the NG tube and still trying to get her to eat by mouth, she needed the G-tube, a more permanent tube. She still vomits with the g-tube. Now working with 3 different therapists, Whitney is gaining some skills with eating solids. Like drinking water from a spoon. (She never did take a bottle!) Until Miss Whit is able to eat all her calories sufficiently by mouth, then she will be tube free! But we do not know when that will be! Could be months, could be years!! But for now, she is thriving and surviving because of her feeding tube. It's a love hate relationship with the feeding tube, but I'm truly grateful for it.
CDH Awareness
Newborn Whitney, Day of Life One, on ECMO Machine
In hospital getting the NG tube 5 months old
In hospital getting the G-tube
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