Did you know February 10-14 is the 10th annual Feeding Tube Awareness Week? I didn’t either until feeding tubes became a life-saving part of our journey. Why is awareness important? I think sharing our experiences helps to break down walls. Generally people are scared of things they don’t know about. I get it and I was guilty of that prior to Conner. However, I don’t want people to be scared of Conner. I don't want them to be scared of how he is fed, how he moves, how he talks…the list goes on. The only way that I know how to keep fear at bay is by openly sharing some things that most of the world doesn’t have any exposure to.
So, how ironic is it that Feeding Tube Awareness Week falls on Valentine’s Day? Food, more often than not, brings people together. Where there is a social engagement, there is food. The two go hand-in-hand. This has been a challenge for me personally with Conner’s feeding journey. Food is one of the ways I show people that I care - make cookies for a neighbor, send dinner to a friend, etc.. I don’t get to take Conner for a treat after a blood draw or a difficult therapy session. Food doesn't have the same meaning to Conner as it does to me - a work in progress for both of us.
Conner’s feeding journey is long and it has looked many different ways over the years. Instead of focusing on all of the details of each step in our journey, here are the highlights:
Conner’s tube feeding journey started the day he was born. He was born at 24 weeks (16 weeks early) which meant a long road ahead in all areas - including feeding.
Conner has used a variety of feeding tubes including: Nasogastric (NG) tube, Orogastric (OG) tube and the one we use today, gastrostomy tube (g-tube).
We were fortunate enough to bring Conner home from the NICU with no feeding tube and eating by mouth. This lasted about 8 months.
Due to side effects from a medication used to treat infantile spasms, Conner stopped eating by mouth and developed a severe oral aversion.
Conner had an NG tube placed for 3 months and ultimately received a g-tube at 18 months old.
Conner has weekly feeding therapy and we work with him daily on oral feedings.It is a slow process and feels like 2 steps forward and 1 step back, but he is getting there.
Now, how about some misconceptions about some kids with feeding tubes…I have had my fair share of comments and unsolicited advice from people that have never walked a day in my shoes.
“Just give your child a scoop of peanut butter on a spoon! It got my granddaughter eating in no time.” Oooooh, so, it’s just that easy? Noted. If it were that easy, I would buy up all of the peanut butter in the world in order for Conner to eat by mouth.
“Give them something that tastes good!” Again, not the issue. We’ve tried every flavor profile and texture I can think of with Conner. It is so much more than the flavor of the food, although eating something that tastes good is helpful.
“They will eat if they get hungry enough!” Also, not true. Feeding is a process and yes, while learning what hunger feels like is very helpful at some point during the journey, it is not the reason or the fix-all for feeding challenges.
“He doesn't look like he needs a feeding tube.” Did you know that there are literally hundreds of medical conditions that lead to tube feedings?
I could go on for days, but you get the point…eating is so much more complicated than most people give it credit for.
So, what do we feed Conner? This is a popular question. Over the years, Conner has received a variety of breast milk, formulas and blends. As soon as Conner got his g-tube, we switched to a blended diet. This means we make his food at home. We have a recipe (approved by his dietician) we use of all real foods and we blend it up in a vitamix to make it smooth enough to go through his tube. We don’t switch up his recipe because he can be sensitive to even the smallest change. We have found what works, so we are sticking to it. We recently started adding Whole Story Meals into Conner’s blend as a calorie booster. He is tolerating it very well and it adds significant calories and nutrition with very little volume.
What is an awareness blog post without some of our favorite feeding tube supplies. The items below make our day-to-day with a feeding tube exponentially easier and frankly, less messy!
Squeasy gear bottles - We use 16oz bottles for Conner’s food and 6oz bottles for water (flushes)
Squirrel store o-ring syringes - yup, you read that right, squirrel store syringes. These syringes are the absolute best option for tube feedings. They last FOREVER, clean easily and don’t stick (like ones you get from your medical supply company). We use 60 ml syringes for food and water flushes.
Travel lunch tote: this fits a bottle of food, a bottle of water, an ice pack and food and water syringes. It is the perfect way to feed on the go - out for appointments, school or traveling for intensives. There are so many options, but this one is our favorite.
Ice packs - these are what we use - fits well in the travel lunch tote and stays cold hours.
Feeding has looked so many different ways for Conner, but what is important is that he has had avenues of being fed. Nutrition equals life and I am more than grateful for the many options we have had to feed Conner. Our feeding journey will continue, I imagine for years to come. We will always strive for Conner to eat by mouth in order for him to be more independent.
