Feeding Tube Awareness Week: Day Two

Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

Spencer has always had a feeding tube. He started with an NG tube, a tube that went through his nose and to his stomach, when he was a day old. He had his gtube tube placed when he was a month and a day old.

Spencer has a feeding tube because he never mastered eating. Along with his suspect genetic diagnosis, SBBYS Ohdo Syndrome, he also has something called Pierre Robin Sequence (PRS). Long story short, PRS caused Spencer's jaw to stop growing at some point and caused a host of issues. He has micrograthia, otherwise known as a small jaw, cleft palate, larygamalacia, tracheamalacia, and broncheamalacia, all are abnormalities of different parts of his airway system, some stenosis (narrowing of the airway, and cranio facial muscle weakness. He never figured out how to suck, breathe, and swallow at the same time because of these issues. He took from a special bottle pretty early on, but never more than 30mls a feed (an ounce). His wicked reflux didn't help any.
We had a discussion with his feeding therapist pretty early on in the NICU, after it was clear Spencer was struggling to make progress. She said we could keep the NG, in hopes he would figure it out, or get a gtube put in surgically for the long term. Our guts (mine and Jimmy's) told us it was going to be a long road and we decided on the Gtube. This has been the best medical decision we have ever made as Spencer promptly stopped taking the bottle as soon as he came home from the hospital.
At 6 months Spence started eating solids and then winter hit. He became a snot machine. The increased mucous made it nearly impossible for him to tell there was anything in his mouth, so he stopped eating. He never ate a lot, but it kind of broke my heart when he stopped all together. We never gave up, but didn't stress him out over it.

A few months after his first birthday, I started doing a blended foods diet with Spence...essentially I put foods in a blended and feed it through his feeding tube. He stopped puking. A few months after that he started letting me put food back into his mouth. Studies have shown that kids who do a blended diet are more likely to start eating orally. Spencer still struggles with eating, but he does eat! His most recent diagnosis of sensory integration disorder is also a huge barrier in his eating, but the more progress he makes the better his eating gets.