So I am a bit late (life has been quite hectic around here lately), but February 10th marked the beginning of Feeding Tube Awareness Week. I have seen several posts on my social media platforms and support groups that I follow for Jackson's medical conditions, but I figured that many in our support network may not be fully aware of feeding tubes in general and how it affects (i.e. saves) Jackson's life more specifically.
Feeding tubes are simply an alternative means to provide nutrients to the body when one is unable to feed orally or experiences challenges with consuming a sufficient amount of calories. There are several reasons as to why an individual would benefit from a feeding tube. For Jackson specifically, he was born prematurely and experienced chronic respiratory issues that did not allow him to attempt to drink a bottle orally for the first time until he was approximately 2 months old. He was intubated (using an assisted breathing machine device with a tube down his throat) for several weeks, and so feeding tubes have been a part of his life since the beginning for nutritional purposes. Due to Jackson's traumatic brain injury (hydrocephalus), he suffered neurological damage and was labeled as "failure to thrive," and doctors questioned his ability to successfully learn how to orally feed.
Most may not realize, but learning to drink from a bottle is hard work, especially for preemies! Just like with everything in his life, Jackson had to slowly learn the skills of breathing, sucking and swallowing, which did not come innately to him like most babies due to his neurological challenges. But as we know, our little boy is a FIGHTER, so he gradually got the hang of it! Unfortunately, he still tired out quickly and was not able to consume sufficient volumes to be safely sent home from the NICU.
Jackson's Neonatologists (NICU physicians) encouraged us to consider having a gastronomy tube (g-tube) surgically placed to allow him to be fed breastmilk, formula, etc. directly from a feeding pump, through a connection port in the skin, and into the stomach. He previously had a nasogastric (NG) tube that is fed through the nose, down the throat and into the stomach, but he was constantly pulling it out of his nose almost daily. Doctors felt that this wasn't a sufficient long-term solution and kept pressing for the g-tube surgery. This would be our "ticket" home after spending 3.5 months in the NICU. Putting Jack through a 2nd surgery at only 3 months old was one of the hardest decisions that we had to make as parents, but ultimately, it was one of the best we have made thus far regarding his health.
Our goal was to keep the g-tube as a "short term" feeding option, so with the help of GI specialists, dietitians and speech/feeding therapists, we were able to eventually wean Jackson off his feeding tube and transition to primarily bottle feeding throughout the day. Since he is considered to be on the smaller end of the growth curve due to prematurity, we were still instructed to utilize his g-tube and feeding pump overnight (via continuous feedings) to provide him with additional calories necessary to gain weight.
We still have Jackson's feeding tube today, and because of his cancer-related symptoms, we now use it multiple times throughout the day to feed Jack due to his more intense and consistent loss of appetite. This has been a huge lifesaver, mainly because this allows us to keep him hydrated and from suffering major caloric deficits - which in turn keeps him out of the hospital unnecessarily. We were told by medical staff that many cancer patients end up having to utilize some form of feeding tube or undergo g-tube surgery in order to receive proper nutrients during treatment. Jackson also is prescribed with several medications for his cancer treatment, so we can even administer his medications via g-tube, which really comes in handy with a toddler who is prone to oral aversions.
I am not sure how long the g-tube will be in our lives, but we are willing to keep it around as long as Jack needs it. I hope this was helpful information for you, and I am sending my love to all the families out there who experience and understand the feeding tube lifestyle first-hand.
