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Feeding Tube Awareness Week: A Day in the Life of a Tubie Mama

I Am a “Tubie” Mom

My son has a feeding tube, which makes me a “tubie” mom. Feeding him through a feeding tube has saved his life.

I am a proud “tubie” mom.

My son’s swallowing muscles are weak which puts him at greater risk for aspiration when swallowing. He was hospitalized for two weeks for being failure to thrive and had his feeding tube placed at 4 weeks old. He had been breastfed up to that point.

Taking care of my son no longer requires nursing bras, covers, or pads. Feeding now requires tubing, a pump, and precise calculations. Life is not quite what I expected. And I am still getting used to doing things differently with my son than I did with my daughter.

The Pros and Cons of Having a Child on a Feeding Tube

Despite the fact that a feeding tube is not my first choice of method to feed my son, it is not without its benefits. My son sleeps through the night because he gets to eat all night. Awesome, right??? He is on something called a continuous night feed. This allows the formula to slowly drip throughout the night so the pump doesn’t beep at us ALL NIGHT LONG. Medicines are much easier to give him because he has a medicine port on his tubes. He doesn’t taste it and can’t refuse it. Win for this mom!

We can also feed him in the car while driving. As long as my errands don’t require me to get out of the car very much, I can get a lot done while he is on a feed. With all my son’s medical needs, I am so glad that he sleeps and his feeds are fairly convenient.

As you would expect, there are definitely some cons to having my son on a feeding tube. Since he is hooked up to tubes a good portion of the day, it is difficult to hold him in certain positions. The tubes can be annoying and cumbersome. And getting tangled in his tubes is a frequent occurrence.

Because he is not in charge of when he eats, he doesn’t always show signs of hunger. We have to remember to hook him up at certain times. If we miss something, everything is recalculated. Cleaning the equipment, making sure there is no air in the tubes, and hooking him up to the pump all take extra time. Overall, there is just a lot more “stuff” to think about on a daily basis.

Feeding Tube Mishaps

As with any machine, crazy and unfortunate things can happen. Pumps don’t usually malfunction, but if you don’t remember to program them just right, things can go haywire. Most moms with a child on a feeding tube will tell you that one or more of these mishaps have happened to them:

  • Feeding the floor, car seat, or crib because you forgot to connect the tube to your child
  • Missing a feed or starting a feed late because you didn’t push the right button (makes for a very unhappy baby)
  • Feeding your child too much or too little because you calculated wrong
  • Tubes go bad and you end up feeding your child’s clothes
  • Forgetting the feed pump somewhere and panicking (How will I feed my child?!?!)

Feeding tube mishaps are obnoxious but can be very funny in hindsight. I have learned to laugh at myself when these mishaps happen. Because happen they do… and fairly often. If I didn’t see the humor in these instances, I would instead be crying buckets of tears over spilled milk (literally). And that wouldn’t be helpful to anyone.

The ONE Thing to Never Tell a “Tubie” Mom

There are many things you should never say to a pregnant woman, a single woman, or a mom with lots of children. And there is one thing you should never say to a mom with a child on a feeding tube.

“Oh, this is just a phase. Your child will grow out of it and will be eating all kinds of food before you know it.”

This is a very well-meaning comment. I understand that it is meant to encourage me and help me see the light at the end of the tunnel. But you shouldn’t say it because it may not be true for some children on feeding tubes.

Some children do not grow out of it. Some children have chronic conditions that will never allow them to safely eat on their own. There are many adults who have had feeding tubes since childhood. It keeps them alive and allows them to lead healthy lives. So it is best to give a listening ear, be interested in learning more about feeding tubes, and offer help. These are the ways you can serve and love on a “tubie” mom.

A feeding tube is definitely not what I wished for my son. But I am so grateful that this medical device is keeping him alive and helping him thrive. I do not know if or when my son will come off of his feeding tube. It is something I pray for every day. Yet there are blessings amidst the unexpected journeys we must take.

The friends that have come alongside us and loved us have been a blessing to my family. The help and encouragement I have received keep me going every day. My husband, my daughter and I are growing in compassion for people with disabilities and special needs. My heart overflows with joy just being with my son and seeing him improve every day.

Indeed, the blessings have come.

 

 

 

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