Our feeding journey began when Oliver was born. He was diagnosed with Coarctation of the Aorta at 24 weeks gestation and we knew he’d be facing heart surgery within the first 2 weeks of life. As a precaution and because the doctors couldn't besure if circulation to his digestive tract was compromised, they didn't allow him to eat until after his heart was repaired. He had his surgery at 12 days old and was finally extubated 3 days post op. After he was extubated, we learned that one of his vocal chords was paralyzed and that he had pretty severe laryngomalacia. Two more setbacks to feeding. They placed an NG tube, and we began working with OT while in the hospital. We were discharged with an NG tube when Oliver was 7 weeks old. His laryngomalacia was surgically repaired when he was 2 months old, and his vocal chord paresis resolved itself shortly after. There was absolutely no follow up and no check ins from his medical team to see how he was doing or how we were coping with the NG tube. When Oliver was 4 months old, we were tired of the NG tube and requested a G tube.
We had regular visits with the GI doctor and dietician about reflux but no help or guidance on how to get off the tube. We had home visits from speech, OT and another dietician to “learn” how to eat, but yet again, no support or guidance on weaning.
I learned about the Growing Independent Eaters Facebook page from another mom on a gtube support page. I started following the page, reading others posts, and gathering information. Around Oliver’s first birthday, my husband and I realized that if we wanted to get off the tube we would have to seek help outside of our GI and ECI teams. We ran the idea of a hunger based wean past our pediatrician and cardiologist and they were both in full support, but didn’t have the knowledge to facilitate our wean.
It was with both nervousness and excitement that we filled out the intake form and waited for a reply. Within an hour, I received an email from Elisabeth with positive feedback that Oliver seemed like a good candidate for their program. We underwent the assessment process next.
My first phone call with Olga was at night after everyone had gone to bed. I was sitting on the floor in the laundry room (so I wouldn’t wake anyone up!) and it truly felt like I was talking to an old friend. I was talking to someone who had a child who’d had a feeding tube. Someone who understood my fears and had walked in my shoes. I remember hanging up the phone and waking my husband up to tell him how excited I was about our conversation and that we had finally found someone who understood!
We stressed about weaning! We were convinced it would be impossible and the hardest thing we had ever had to do as parents. We worried over spending the money and being right back where we started. But we decided we had to try.
We started our wean on July 15, 2017 with our 30% calorie reduction. Our child who had a severe oral aversion and vomited after every meal completely changed! He started putting things in his mouth and letting us brush his teeth and he stopped vomiting! Come to find out Oliver didn’t have reflux; we were overfeeding him. We moved though our wean fairly quickly as Oliver started showing tremendous interest in food. He was tasting and trying everything we offered him, and he started saying “no” when we would try to feed him through his tube. On August 15th, one month after we started weaning, I gave Oliver his last ever tube feeding. I couldn’t believe that something we stressed over so much was actually one of the easiest things we have undertaken. We celebrated Thanksgiving 2017 by having his tube removed.
Looking back on everything now, I wish we had taken the plunge and contacted GIE sooner. They created a plan, walked us through our wean step-by-step, were a shoulder to lean on and an ear to listen. When we had a question, answers were quick but thorough. When I wanted to completely rework the plan, I had a new one the next day. I really and truly thought weaning was a dream and something we wouldn’t be able to accomplish, but with the help of Olga, Becky, Kathryn and Elisabeth our little boy has a relationship with food that we never dreamed was possible!”