This week is feeding tube awareness week. I have written a few times about my daughter’s G-Tube, but this month being her third year having it, I wanted to write about it some more and hopefully bring more awareness to what a feeding tube is and why it’s so important.
Having a child with a G-Tube means so much more than “My child eats differently than other children.” Nearly all children with feeding tubes have sensory issues, have had multiple hospitalizations, surgeries, behavioral aversions, invasive testing, far too many doctor appointments, and generally not being able to interact with their environment like other children do.
Many children with feeding tubes often have a tube because of complex medical issues. The irony is that many children with feeding tubes do not look sick. Many conditions that can require tube feeding aren’t things you can see. However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it may take a lot to keep our kids looking and feeling healthy.
Many parents of children on feeding tubes have experienced negativity, inappropriate comments, and poor behavior from family, friends, and even strangers. Please know our child doesn’t have a feeding tube because we are lazy or because the doctors didn’t know what they were doing. They have it because for them it is a need and more importantly a life-saving need.
* The paragraph above is from TubeFeedingAwareness.org but is re-written in my own words. Please visit their site for more information!
See also: Special Needs: Why a Feeding Tube?
It’s hard not knowing why our daughter has to have her G-Tube. It’s hard not having a name or specific diagnosis to tell us why. But the fact is we may never know the reason why. And while it’s hard knowing that she may have this for a very long time or even forever, it’s comforting to know that this feeding tube is my daughter’s lifeline. It keeps her healthy, it keeps her growing, and it keeps her alive.
A Day in the Life: What it’s Like Being a Mom to a Child Who has a G-Tube
While each child will be different and have different feeding schedules, here is a look at what our daily life is like.
In the morning, after she first gets up, it’s time to give Liz her meds and then connect her feed. Sometimes she’s okay with this, other times she’s upset that we have to mess with her so much.
Before we start her tube feeding, we have to change out the old bag to a brand new one. We have to do this every day to prevent bacteria build up from old formula.
I saved all of her baby bottles so that we could continue to measure her G-Tube formula. I don’t have a good way of measuring it out otherwise and the bottles make it very easy!
Once the formula has been poured into the bag, it’s time to prime it through the bag. The goal is to make sure there are no air bubbles in the line so as to not make her tummy feel sick or gassy.
Next, we connect the extension to the G-Tube in her stomach. It has to be lined up just right in order for the extension to fit and then be locked into place.
In order to be able to get her tube feeding, Elizabeth has to wear a backpack with all the equipment in it. This allows her to run and play and still get the nutrition she needs.
Because the tubing is so long, the backpack also gives us a way to coil it safely so she doesn’t trip on it.
Drawing up meds is a daily occurrence. There is a special port just to push meds through so we don’t have to take everything else apart. Her feeding pump is paused while we push meds through.
After she has been given the medicine, we have to flush the tube with water. This pushes the medicine into her stomach and prevents the tube from being clogged.
We go through A LOT of syringes! We are constantly soaking, washing, or opening news ones to be used.
Even potty training doesn’t stop for a tube feeding!
Because she has a history of being failure to thrive, we do weekly weight checks to make sure that she is continuing to gain or at least maintain her weight.
While Elizabeth is playing, her home health nurse draws up the rest of her medicines for the day.
During the week Elizabeth has many appointments with many different specialists and therapists. These appointments may be 10 minutes away or over an hour away depending on what we have going on and who she needs to see.
Once we’re back from our appointments, Elizabeth will take a nap or have quiet time. Anytime she is asleep she has to have oxygen on to help with her sleep apnea and periodic breathing.
During her nap and even at bedtime, her feeding tube will still run. We have an IV pole that it hangs on so that it can continue to run even when she’s asleep.
Despite her many obstacles, Elizabeth leads a lifestyle typical to any toddler. She loves princesses and superheroes, dancing and singing to her favorite music, and most of all playing with her older brother, Adam. She is a very happy girl, and she reminds me every day what it means to be strong and courageous!
See also: Dear Mom of a New Tubie
What about YOU? Does your child have a G-Tube? Do you know someone who has a G-Tube? Support them today, by sharing this!