Sam 2 lbs. 1 oz.
James 2 lbs. 4 oz.
Sam and James were born ten weeks early, Sam weighing 2 lbs 1 oz, and James weighing 2 lbs 4 oz. Along with being extremely small, their lungs were severely underdeveloped and James had some serious heart problems. As soon as they were born, they were admitted into the NICU where they had breathing tubes placed in their mouths and down their throats, and feeding tubes through their noses down into their stomachs. Having had a very complicated pregnancy, we knew that our boys would have a rough start. We thought that they might have to spend the first couple of months of their lives in the hospital, but we had no idea how hard things were really going to be.
Six months later we were finally able to take our boys home. They both came home on oxygen and still had feeding tubes. Because they were on oxygen for such a long time, they really didn't have a chance to even try taking a bottle. They also had a lot of negative experiences with tubes going down their throats which caused them to not want anything near their mouths. After about a month of being home, they still had not made progress with eating. At this point they had NG tubes, which go down the nose and into the stomach. They would sometimes grab them and pull them out of their noses. We would then have to reinsert the tube ourselves, which was very painful for them and not fun for us as parents.
Soon we decided that having G tubes would be less heartache for all of us. A G tube is a surgically placed small plastic piece that opens, similar to the stopper on a beach ball, and has a balloon that is filled with water on the inside of the stomach wall to hold it in place. The port on top opens and connects to a tube through which formula is given. We were expecting to feed them this way for maybe six months to a year, with hopes that they would be eating on their own soon.
From then on we had once or twice a week visits from feeding therapists in our home, and two to three times daily practicing with them sitting in a high chair, taking bites from a spoon, sipping water, etc. Although intentions were good, the stress that it caused me as a parent, and the pressure that the boys felt, only created more issues and worsened their aversion to food. After about two and a half years of trying several different methods and having very little progress, we feel that it is time for them to move on to the next step, which is an intensive tube weaning program.
A lot of people ask, "Why now? Can't you just wait until they're older and you can reason with them about why they need to eat?" I really wish it were that simple! Sam and James will turn three in a couple of weeks, and are at a very critical stage of development in their lives. Studies have shown that prolonged tube use can interfere with the development of self-regulation, motor skills, and healthy family dynamics. The longer oral intake is delayed, the more unhealthy patterns are developed.
Family dynamics are very important to life-long eating habits, and each negative mealtime experience that occurs as a result of tube-dependency can further damage family relationships as well as the child's relationship to food. Early healthy relationships with food and healthy family mealtimes are key in the prevention of obesity and related health problems. Like most parents, we simply want what is best for our children. We want them to have the experiences that all children deserve, and not be excluded from so many activities where food is involved.
There is also a lot of pain and discomfort that come from being tube fed. There are a number of side effects including reflux (heartburn), vomiting, site infections, skin irritations, increased medical visits, and poor volume tolerance. We have a very strict feeding schedule that we follow everyday in order to make sure they are being fed enough so they can stay hydrated and grow. They are fed five times a day, which makes a total of about two and a half hours per day of being connected to a feeding pump. That is a long time for any toddler to have to sit still, and a lot of time that they could be having more meaningful experiences.
There are only a few places in the US that do intensive tube weaning programs, and none of them are in Utah. After doing some research, we have decided on a clinic called Spectrum Pediatrics, located in Virginia. They have a very successful 10 day tube weaning program, and we are lucky enough to be having one of their therapists come to our home, rather than us having to travel to Virginia. The therapy will begin March 20th, and we are so excited to finally be able to move forward and see our amazing little boys start having positive experiences with eating.
Sam and James have come so far from where they started, as very tiny and sick premature babies. They are truly miracles and are so smart, funny, and just all around amazing. I feel incredibly blessed to be their mom, and to have the opportunity to be on this great journey with them. It won't be easy, but it will be so worth it. I will continue to post updates on their progress as the therapy begins. Our family is extremely grateful for your support.
A lot of people ask, "Why now? Can't you just wait until they're older and you can reason with them about why they need to eat?" I really wish it were that simple! Sam and James will turn three in a couple of weeks, and are at a very critical stage of development in their lives. Studies have shown that prolonged tube use can interfere with the development of self-regulation, motor skills, and healthy family dynamics. The longer oral intake is delayed, the more unhealthy patterns are developed.
James, 2 1/2 yrs old
Sam, 2 1/2 yrs old
There is also a lot of pain and discomfort that come from being tube fed. There are a number of side effects including reflux (heartburn), vomiting, site infections, skin irritations, increased medical visits, and poor volume tolerance. We have a very strict feeding schedule that we follow everyday in order to make sure they are being fed enough so they can stay hydrated and grow. They are fed five times a day, which makes a total of about two and a half hours per day of being connected to a feeding pump. That is a long time for any toddler to have to sit still, and a lot of time that they could be having more meaningful experiences.
There are only a few places in the US that do intensive tube weaning programs, and none of them are in Utah. After doing some research, we have decided on a clinic called Spectrum Pediatrics, located in Virginia. They have a very successful 10 day tube weaning program, and we are lucky enough to be having one of their therapists come to our home, rather than us having to travel to Virginia. The therapy will begin March 20th, and we are so excited to finally be able to move forward and see our amazing little boys start having positive experiences with eating.
Sam and James have come so far from where they started, as very tiny and sick premature babies. They are truly miracles and are so smart, funny, and just all around amazing. I feel incredibly blessed to be their mom, and to have the opportunity to be on this great journey with them. It won't be easy, but it will be so worth it. I will continue to post updates on their progress as the therapy begins. Our family is extremely grateful for your support.
