Not all fearless formula feeders use bottles. There are a significant number of you out there who are the proud parents of tube-fed kids, and I recently realized that I’ve been embarrassingly mute about this method of feeding. That changes today.
In honor of Feeding Tube Awareness Week, I’m so pleased to introduce Traci Nagy, who runs a tremendous resource for tube-feeding parents, the Feeding Tube Awareness Foundation. Check out her website or visit the foundation over on their Facebook page. And to all you tube-feeding parents out there, I want you to know that you are the very definition of fearless. As Traci says, it isn’t an easy road, and you have all my respect, admiration and support.
My name is Traci and I am a Fearless Formula Feeder, except I feed formula in a very different way. My three and a half year old son, Lucas, has been tube fed since he was two months old.
I was planning on breast feeding. I had a pump, I took a class, and I was ready to have those wonderful bonding moments with my son. But, my son had trouble eating from the beginning. I had a raging sinus infection and fever when my water broke at 38 weeks during a coughing fit. Lucas wasn’t really ready to come out, so after 19 hours and some distress, an emergency c-section was performed.
He was in the NICU for observation due to noisy breathing and was on an IV only for the first 24 hours because of my fever. When we tried feeding he couldn’t coordinate a suck. Initially, I thought it was due to his more traumatic birth. The lactation consultant was adamant we work this out. There was a lot of pressure over the three days were in the hospital and he was able to eat. I was a failure for not being able to get my child to latch on. Lucas was jaundiced, so we had to move to formula supplements immediately.
After days of trying to breast feed, Lucas wasn’t getting it and gave up trying and “embraced” bottle feeding. This wasn’t any more successful. I was pumping and I hated it. I didn’t seem to ever get to past foremilk no matter how much I pumped. I felt like a defective cow. Moreover, feeding him was pretty stressful. He bobbed and weaved, avoiding the bottle at every pass. By the time my son was a month old he was swatting a bottle out of my hand (even more impressive now that we know he has very poor vision and low muscle tone). He only drank small amounts, cried a lot, projectile vomited and slept very poorly. Reflux was an understatement.
I moved completely to formula in his second month. I couldn’t keep the pumping up. We spent the day moving from one bottle to the next with him drinking an ounce or two. It was exhausting. Then he started turning blue. A trip in the ambulance and a few hospital stays, Lucas was the proud owner of a feeding tube that ran through his nose into his stomach. At this point, he was failure to thrive. We learned that some milk/formula had been going into his lungs, his throat collapsed when he breathed (laryngomalacia) and he had trouble breathing and eating at the same time. Also, his stomach wasn’t emptying as it should.
Let’s just say at this point, I couldn’t care less about breast feeding. Any guilt that I may have had was replaced by worry about what was wrong with my son. However, from the day I started tube feeding, I felt an enormous sense of relief. It was such a struggle to get him to eat anything, and certainly not enough for him to live, let alone develop and grow. With tube feeding, Lucas was finally able to get the nutrition and hydration he needed, even if I wasn’t the one providing it.
After a year and a half, dozens of specialists and tests, Lucas was diagnosed with a rare chromosome disorder. He is missing 6 genes out of the ~30,000 genes we have. As a result he has low muscle tone, particularly from his mouth to his stomach. He had no coordinated muscle movements to push food though his stomach, so for 2 years we had a feeding tube that went directly into his intestines. However, as he grows, his muscles get stronger and things improve.
I know this all sounds scary. I am not going to lie to you. Tube feeding isn’t an easy road to take, it is a last resort. We tried like hell to get him to eat before and after the tube. However, as it became very clear that medical reasons were going to require tube feeding for a longer period of time, we embraced it as another way to eat. I am just so thankful that the technology exists now. If he was born when I was, he most certainly would not have survived.
Since the beginning, Lucas has been able to eat orally and he does every day. However, his stomach can only handle small amounts at a time. We have a small feeding pump and backpack he can wear. His feeding pump doles out small amounts of formula at a time so that his stomach can manage it. He pump feeds 15-16 hours a day now.
Today, Lucas is a thriving preschooler who gets more than 90% of his nutrition from an elemental formula through his feeding tube (which now goes directly into his stomach from a button on his tummy). He goes to school, he runs, climbs and plays. He looks like, and is, a healthy kid because he gets proper nutrition.
The most important thing is that your child is well fed and hydrated. That they get the calories, vitamins and minerals they need grow, develop, thrive and live.
In 2010, I founded Feeding Tube Awareness Foundation, a parent organization dedicated to sharing pragmatic information about tube feeding and raising positive awareness so that tube feeding families get the support they need.