Our littlest bullfrog doesn't do things conventionally... so why should eating be any different. For the past nine months he has required enteral feedings to survive. He had a NG tube placed last September but was later switched to a gastronomy tube (G-tube) because he can't eat food and refuses to take in his formula orally. Our little guy is on continuous feeds for 22 hours a day, which requires us to refill his formula every four hours around the clock.
The idea that your child needs external resources to thrive is difficult to digest and can be very stressful at first. We were just kind of thrust into this new life and given very little instruction on how to navigate through it. Although, I was given a brief lesson on how to run our pump during our discharge, my sleep deprived overwhelmed mind was less than focused. So when an IV pole (which required setup) and a bag full of supplies finally arrived at my door at 11:00 at night I was feeling slightly defeated to say the least!
I have created a video, which explains the basic steps of setting up an enteral feed. I hope this information will become a resource for others that are trying to feel their way through this process.
Just remember you are not alone and things will get easier as you become acclimated to this new way of feeding your little one.
1 Peter 5:7 Casting all your anxieties on him, because he cares for you.
|Life With An NG Tube|