Food… oh how we love food. There are entire blogs, Instagrams, and TV shows dedicated solely to food.
But most of us take eating for granted. Even me, and I have a daughter who relies on a feeding tube to eat. Sometimes I forget that Lily used to eat by mouth, and although it was always a struggle she enjoyed it. We are very thankful that she can now get tastes of things for pleasure but there is no way she could actually consume anything without choking and possibly aspirating (getting the food in her lungs). She has improved greatly over the last 2.5 years since she’s had a feeding tube, so we remain hopeful that she can someday eat by mouth again.
Before Lily got her G-tube (her type of feeding tube) I looked at it as a bad thing if she ever had to get one. I felt like as a mom I would be a failure. I wanted to prove the NICU doctor wrong. This is the same doctor who gave us her diagnosis when she was just 3 days old that she would probably never eat (along with many other things).
To our delight she did eat. However it was never an easy process. Meal times would wear us out. We would have to plan a minimum of an hour for her to eat, sometimes longer. Lily got sick in October 2013. She was sick enough that it made it even harder for her to eat. We knew then that she needed a feeding tube. Oh believe me I fought it ‘til I knew there were no other options. Even then I still felt like I was failing Lily. After watching me feed Lily for over an hour straight getting her to drink no more than 2 oz of thickened liquid Daniel (my husband and Lily’s Daddy) told me it was time and we had done all we could, I had done all I could. It took him telling me this for me to be ok with it.
Since then Lily has done amazing! She’s growing well. We had no idea she was burning so many calories just trying to eat orally. Now she has more energy and her muscles are more relaxed. Getting a feeding tube for Lily ended up being a total blessing! She still eats real food. It just has to be put through a blender, sucked up in a syringe, then goes directly in her belly through a tube.
People can need feeding tubes for all kinds of reasons. Some just have no desire to eat food or are extremely picky. (This could be brought on by other special needs like Autism or Sensory Processing Disorder. Even diseases like Cancer or ALS. ) Some, like Lily, have trouble swallowing correctly. (Which is related to her Cerebral Palsy.) Some have digestive issues or can’t tolerate a high volume of food at once. Some just can’t get enough fluids in a day due to medical or neurological reasons and need a feeding tube for hydration. There are all types of feeding tubes and ways to feed through them. Some tubes, called an NG tube, go through the nose and into the belly. This is often used on newborns or as a temporary feeding option until the person can eat on their own or have surgery to place the tube in their belly. Some use a pump for slower feeds (some continuously) others like Lily use large syringes to push the food in or some use a gravity method.
Most of the time, those with feeding tubes have other medical issues or special needs as well. Parents or caregivers always have to think ahead before we go anywhere or do anything in order to prepare. There is no going through a drive through because you’re away from home longer than you planned. You can’t just get the supplies at Walmart. They have to be specially ordered. Those who enjoyed eating, but just can’t, sometimes have trouble going to restaurants or social events with food because they would like to eat, or it’s difficult to explain to people why they aren’t eating.
Feeding tubes are a scary thing at first but we are so glad we made the move. We have more quality time because Lily now eats in under 10 mins 4 times a day instead of 1 hr 4 times a day, and thankfully she can still have pleasure feeds or very small tastes of food.
It can be rough, but through lots of friends and family who not only support but educate themselves on the basics of feeding tubes (so they aren’t scared or startled to be around them) it gets better.
And to the scared mom who feels like she is failing her child if they need a tube… YOU ARE NOT A FAILURE. Accepting that your child needs one is proof. And just remember that it doesn’t have to be permanent. Hang in there!
~From, A Tubie Mom