The Importance Of Tube Feeding Comfort

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When children leave the hospital with feeding tubes, parents are not handed manuals on how to feed them. I hear stories of people only receiving a caloric total to try to meet every day and seldom is there a set plan in place for how to achieve that. Parents are put under an enormous amount of pressure to try to reach that set goal. Often times, babies have gone weeks or months with improper nutrition, so parents are excited to finally be able to feed them what they need. Having a feeding tube makes it appear to be an easy way to give your children the healthy nutrition they deserve. Seldom do doctors teach the importance of listening to their bodies.

My daughter has been tube fed since she was four months old. Eight months of tube feeding was done through an ng- tube and for the past five years, she has had a g- tube. One thing I have found to be true about children with feeding tubes is that they learn their bodies very well, and we should respect that about them. I suppose my daughter learned to be in tune with her body at such a young age simply due to all of the gastrointestinal discomfort she experienced throughout her entire life. It has made her very sensitive internally, and she has learned to manage her eating and drinking based upon how she feels. After learning just how important it is to maintain tube feeding comfort, I have tried my very best every day to respect my daughter's body and feed her when she is ready and stop when she says to stop. 

I think some children with feeding tubes can feel extremely helpless in a way, because having a tube there does give easy access to the stomach. I try to communicate with medical staff that just because there is a tube in my daughter's stomach does not give anyone the permission to feed her when she is in pain, or unable to tolerate it at the moment.

We recently had an inpatient hospital stay where I had to advocate for her. She was having a cyclic vomiting episode and I was unable to hydrate her at home. She needed an I.V., medicine, and stomach rest. There were several incidents where the nurses tried to tube feed my daughter while she was curled up in a ball, nauseated. She was not even able to tolerate the feeling of my hand gently rubbing her back. As the nurse walked toward my daughter with the extension tubing to connect her to a tube feed, she completely had a meltdown. I do not blame her in the least. She cried to me, " Momma, why would they tube feed me when I'm gonna throw up?" To me, it was common sense that you would not have an oral fed child drink/ eat while attempting to hold back vomit, so why would you try to make a tube fed child eat under the same circumstance?

Of course I advocated for her and did not allow the tube feeds to go in, but part of me felt very angry. Why do people assume that just because a child has a feeding tube that they can feed them against the child's will? I never once saw an oral eater being awoken at 12 am in the hospital to drink a can of formula while they were nauseated. Standing up for my daughter during those days strengthened our mealtime relationship because I honored her body and did not allow her to feel unnecessary pain.

After we were discharged, my daughter was still emotionally upset with everything that had occurred and I called the hospital to express my concerns and make sure it never happens to another child again. It did have a tremendous impact on my daughter and she "tested" me several times once we came home. She asked for tube feeds earlier than normal and asked me to stop tube feeds during a meal. I respected her body by following her wishes and in return, she started eating orally again very quickly after this last illness. Had I not stood up for her in the hospital, I do not think she would have returned to oral eating as quickly.

I realized that in the past, when I did not know any better and we did not listen to her body as we should have, she would have huge setbacks in oral eating with every illness. Sometimes it would take weeks or months for her to trust again with food. After years of never pressuring her to eat or drink and only offering it, she began to trust with food and with tube feeds. She developed a healthy relationship with food. When her body feels good, she eats. She stops eating when she is full or unwell. She asks me to stop tube feeds when she is full and I respect her.

The reason we do not see huge setbacks in eating now with illnesses is because my daughter eats orally because she loves food. She does not eat to please me, but in the past she did. She does not eat for a reward; she eats because the food tastes good to her and feels good to her once it is digested. This progress came only from respecting her body during tube feeds. If a child is not comfortable with tube feedings, there will never be a desire to eat orally. There is absolutely a connection between comfortable tube feeds and oral eating. It is essential to develop a healthy tube feeding schedule, which meets emotional as well as physical needs.

One of the biggest gifts you can give your children is the ability to emphasize with what their bodies are feeling and to teach them to respect what they feel. This can be achieved in so many ways. Whether your child is fed with a pump or bolus tube feeds, listen to what they say or how their bodies respond to the tube feed. If they grab their stomach or ask you to stop, just stop. Communicate to them that you are thankful they can tell you how they feel. Stopping a tube feed is ok and it does not mean you can't come back to it later, it only gives their bodies the break it needs. Wait five or ten minutes or maybe a half hour and see if the pause in tube feeding helps to maintain comfort.

It is important that we not only teach our children to listen to their bodies, but that we show them that we honor and respect their bodies as well. For a variety of helpful tools and resources that will empower you to be a strong voice for your child, make sure to visit the Feeding Matters resource page.