This blog chronicles my family’s journey weaning our five month old baby Lillian from her feeding tube.
A few days before Lillian turned five months old, my husband Dave and I have made a big decision on her behalf. After watching her struggle with her feeding tube—daily vomiting, poor weight gain, and poor quality of life being hooked to the tube all the time—we began searching for answers. It had become painful to watch her cry in discomfort toward the end of her tube feeds like we were forcing more food into her than she could handle. It was sad that as our little girl was becoming increasingly curious about the world around her, she was stuck at home hooked to her feeding pump all the time. I was growing depressed being on what felt like house arrest, but I didn’t feel like I could leave Lillian to go through such struggles without me. Then came a trip to the emergency room because she was vomiting up blood. Her gastroenterologist told us blood in her vomit was something we could come to expect. It was becoming increasingly clear–the feeding tube was causing an untenable situation for Lillian and our family.
After talking to a co-worker who was able to wean her son from his feeding tube, I started investigating online and found a tube weaning approach that has been used successfully in Graz, Austria for three decades. The theory is that while feeding tubes are life saving at the time babies and children have them placed, children often become dependent on them and continue using them long after they could otherwise eat orally. Because the feeding tube is providing the child’s nutrition, they don’t have the motivation to eat. Furthermore, because the feeding tube induces vomiting and discomfort, it perpetuates the problem by causing aversions to eating. They believe the motivation of feeling hungry is a necessary part of the weaning progress. That theory made perfect sense with what we were seeing in Lillian—she started out life on a ventilator (and therefore a feeding tube) after a difficult birth, but she is now a healthy baby who should be able to eat. And while she made a little progress after over three months of feeding therapy, eating was just a game to her, and she seemed to see no reason to keep at it once she grew tired of it (which was very quickly). And on days when she had been throwing up a lot, she didn’t want anything in her mouth gagging her more.
We found a company based in Austria that was founded by the health practitioners behind the approach used successfully at the university hospital there for three decades. The company offers online netcoaching to help families wean their children from feeding tubes. They walk parents through the process with daily interactions and support. They have a 90% success rate and average 2-3 months for children to be fully weaned. There wasn’t anything comparable in the Seattle area that Lillian was eligible for. She either had to be older and/or taking some food by mouth. Her gastroenterologist told us he would consider it a “win” if she was off the tube by her second birthday. Dave and I didn’t feel Lillian should have to wait that long given the delays it would mean for her eating skills and other development, the potential stunting of her growth, and the prolonged discomfort she’s have to go through.
About Dave, Lillian, and I
My name is Leah, and I live with my husband Dave, and our daughter Lillian and Redmond, Washington. My husband Dave and I are both working professionals, although I took a leave from my job to care for Lillian. Lillian is our first child, and we had both wanted a child for a long time when she came along, so she is especially precious to us.
I had a healthy pregnancy with Lillian until the end, when I started having increasingly strong contractions but couldn’t seem to go into labor. By the time I finally went into labor at almost 42 weeks along, Lillian and I were both exhausted from two weeks of prodromal labor that culminated in two days of non-stop strong contractions before I finally went into active labor.
Lillian was born in respiratory distress and was intubated with a ventilator on her first day of life. She was on breathing support for two weeks, during which time she had a nasogastric feeding tube. Then after two weeks, her lungs were healthy and it was time to learn to eat. She had some early success and we thought we’d be taking her home imminently, but then she started showing symptoms of GERD and her oral feeding volumes dwindled to almost nothing. Dave and I decided to get a g-tube for her so we could take her home from the hospital and continue helping her learn to eat on her own timeframe. Instead, she stopped eating altogether and her GERD worsened. When we started her wean, she was taking nothing by mouth; had official diagnoses of oral aversion, GERD, and failure to thrive; and was in the eighth percentile for weight (she was born in the seventieth percentile). At almost five months, she weighed just 12 lbs. 10 oz.–the weight of your average three month old.