Lillian and her parents live in the US. Lillian had to be ventilated right after birth. Due to her medical condition and to help her to thrive adequately, needed to be tube fed. Although all underlying medical condition became stable she did not succeed in the transition to full oral feeding. At the age of almost five months her parents decided to participate in the Netcoaching program to tube wean Lillian from her G-tube. Right from the start she accepted small amounts of infant milk and pureed food. She increased her oral intake and only ten days after her treatment start she could be weaned off her feeding tube. Lillian has been tube free and eating orally ever since
From the parents
What was your life like before you decided to sign-up for one of NoTube’s programs?
Life was untenuable before we signed up for No Tube. Our baby Lillian was born at term in respiratory distress. The need to be on a ventilator her first week of life prevented her from starting to eat like a healthy newborn. Long after her lungs were healed, she continued to be tube fed and wouldn’t nurse or take a bottle consistently or long enough to get the calories she needed. We felt we had no other choice but to get a g-tube for her and continue tube feeding her. We went to eating therapists, gastroenterologists, chiropractors, even biofeedback, but Lillian wouldn’t take anything by mouth. The doctors said she had oral aversion and gastroesphogeal reflux. They told us to expect her to be tube fed until she was 2 years old, if we were lucky. Meanwhile, our life was miserable. She was throwing up 5-10 times a day. She wasn’t gaining weight. We could barely leave the house because we were always hooked to the tube. By 4 months old, Lillian had learned to wipe her own mouth with a burp rag after vomiting and was crying through most of her tube feeds. We had to keep her upright all the time to reduce the vomiting, so she was falling behind on her gross motor skills, and I had no life other than taking care of her. It was also getting harder to keep the tube connected during feeds because of her increasing mobility and strength–too often she would disconnect the feeding tube and milk and stomach contents would spew everywhere. I didn’t feel I could leave her with other caregivers to go back to work with the situation as bad as it was. The thought of living that way another year and a half was awful. And increasingly, it didn’t feel right. Lillian didn’t seem to have a medical reason why she couldn’t eat, and this way of feeding her felt cruel and even abusive at times. We were desperate for help but none of our local doctors could recommend anything other than waiting it out. Waiting for what?
What were some of your most memorable experiences during the program?
We turned to No Tube when Lillian was 4 1/2 months old, and in under 2 weeks our baby went from eating nothing by mouth to drinking all her milk by mouth and eating purees. On the first day of the program, she stopped vomiting and started wanting to suck and use her mouth again. There were some agonizing times while we waited for Lillian to accept eating, but No Tube always had helpful suggestions and responded to our communications within 12 hours or less typically
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
When I worried about Lillian getting enough calories, they reassured me about what her biological needs were. And sure enough, she regained all the weight she lost during her wean shortly after she started eating orally. When I reported early signs of dehydration at one point during the process, they quickly gave instructions that got her back on track. I always felt her health was in good hands.
How has your life changed since you participated in the program?
We are thankful every day that we did the program. It was the best money we ever spent. To see an end to our sweet little baby’s suffering is priceless. She is 10 months old now, and is “normal.” She is happy, thriving, eating, growing, and loves to get out and see the world. I was able to return to work, and we feel that we have our life and our baby back.
What’s the most awesome thing that has happened with your little one since completing the program?
Seeing Lillian enjoying eating is so wonderful. She’ll try anything, and when she eats meals with us, she says “mmmm.” She has learned to ask for her bottle using sign language. I’m still amazed to see her drinking her bottle like she’s done it all her life because we had doctors tell us it was something she would probably never be able to do.