Feeding Tube Awareness week

Today marks the beginning of Feeding Tube Awareness week. I had no idea what a feeding tube was until 4 years ago when Ashlyn received her first of what would become a long journey of several ng tubes followed many years later by more permanent g-tube.

I thought that only the sickest of people, like cancer patients. were the only people to ever have to use one, and never thought of my daughter being sick enough to ever require something so invasive, but she did. She was diagnosed with Crohn's disease in 2011 and her case has been extreme as she is not able to absorb nutrition from food. That first ng tube was a blessing in disguise as it saved her life, but it was also the starting point of something that would come to define how she would be able to survive and live life to the fullest.

To make a long story short, the only times that Ashlyn has been able to grow and flourish were due to her tube. She has not had any food of any kind in a year and she has thrived because of this; she has gained over 30 pounds. It is odd to any outsiders because seriously- who does not eat?! It is what sustains life. Ashlyn eats, but it is in a different way; she relies upon a highly specialized medical formula to provide her with everything she needs to survive and thrive and thrive she does! It is so difficult for people to comprehend, and I know that if I didn't live it day in and day out I would have trouble trying to comprehend it, but it works and my girl is all the better for it. In fact, she is better in every way imaginable because of it. I know deep in  my heart that if she did not have this medical intervention that she would not be alive today.

ƒThere are myriad medical conditions which impair a person’s ability to eat or drink enough to sustain life, grow, and thrive. ƒTube feeding allows for proper nutrition and hydration while:

• Children grow out of their condition/Adults recover from a procedure 
• Children and Adults grow stronger for medical procedures 
• Children and Adults battle their disease 
• Children and Adults find safe foods to eat 
• Children learn that food doesn’t have to hurt them 
•  Children and Adults learn how to swallow/eat safely ƒ 
• Tube feeding is a life-saving and life-sustaining medical intervention. ƒ Tube feeding can be used as a supplement for Children and Adults who cannot eat on their own. ƒ Parents of tube-fed children are often thought of as not trying hard enough to feed their children, when often they have tried everything. The most basic of instincts is to eat and to feed your child. When a child is tube fed, parents often feel like failures for not being able to nourish their child. Moreover, medical complications can be a challenge to navigate, making it even harder on parents. 

It is not easier to have a child who is dependent upon getting all their nutrition via medical formula a tube. I cannot count the number of times i have left the grocery store in tears because I had no idea what I was going to feed my child. I felt like a failure. I am thankful to have had the support of a nutritionist who came to our home weekly to assist in our struggle. Many are not as fortunate as we are. 

Ashlyn has not eaten food in over a year and there is no talk of her starting solids again in the near future. I know that her feeding tube (g-tube) is probably going to be her sole source of nutrition for many years to come. She may never be able to live without one,  and that's OK. She is alive. That is all that matters to us. It is an incredibly emotional journey that we live daily. There is no getting away from it not even for a minute.

The next time you see someone with a feeding tube- don't be quick to judge. Show some empathy and compassion. It is not an easy road. While we are four years into it, there isn't a day that goes by that I wish  I could "just feed her" and she would be "OK". This is a journey that I never would have imaged we would be walking, but we are blessed none the less. She may never be able to survive without the assist of a feeding tube and as heartbreaking as that is, all that matters is that my baby girl is alive. Her feeding tube has led to a "thriving and normal" life (among other medical interventions such as chemo medications to control her IBD) and I am beyond blessed and thankful for it. <3 nbsp="">

Her beautiful smile speaks volumes. :)