Feeding Tube Awareness

A little about feeding tubes....

Every family has a different and unique story about why their child needs a feeding tube.  Some have had difficult beginnings, some start having difficulties later in life.  Most families have some idea as to why their child can't/doesn't/won't/isn't able to eat and others have no medical idea.  We don't compare anyone's situation and only try to offer help and support.   

I've made a lot of new friends over the past couple years here in California.  I've done a lot of explaining and sharing of Whitney's story.  So I thought I would expound a little on feeding tubes here on this blog.  I'm not great with words or putting my ideas together super nicely so hopefully this comes out okay!  

 By now, everyone knows that Whitney has a feeding tube.  She's depended on one for all most all of her life now.  It's hard to understand why a child refuses to eat to the point of starvation.  Every kid loves to eat right!? Just feed her ice cream, then she will eat!?  Well, no, it's not even close to being that simple. Eating it self is a very complicated process.  Healthy babies know how to eat when they are first born, it's a reflex to suck.  A couple weeks later it becomes a learned activity.  And then they are always learning how to eat and are making major milestones in that area.  

But Whitney wasn't able to eat when she was born, in fact, she couldn't even breath on her own.  Whitney was never able to learn how to eat when she was a newborn.  Whitney didn't even get to drink from a bottle when she got formula/breast milk for the first time. Most of the time, her stomach would be upset and she would vomit... a lot in the hospital.  She was extubated and soon fed her first bottle around a month old.  With her lung and heart problems, she breathed too fast and it was difficult for her to coordinate her suck, swallow, and breath motions.  With her stomach and intestine issues, she threw up almost every meal. 

We were able to take her home, fully bottle fed.  But at home, she would scream at the bottle.  Even though we took her to the ER, and then several doctor appointments and therapists, her reflux went untreated for a couple months.  But she was already vomiting almost every meal and would only eat okay if she was mostly asleep.  She was losing too much weight and not happy.  Whitney associated pain with anything near or in her mouth since birth.  It's not fun to have tubes in your throat or to have stomach aches and vomit all the time.  She needed to get a feeding tube to survive and thrive.  

The feeding tube awareness foundation is the most amazing and helpful resource for families and friends.  So I'm going to post a bunch of links to there website.  

First off, there's a new booklet they put together called What You Need to Know Now.  It's really amazing, and it features Whitney's picture on the front with her friends!  There's a section about feeding tubes that goes into more details.  There's great information for family and friends who know someone with a feeding tube and it tells them what to do and what not to do.  FTA has a big page of resources that are very helpful to tube feeding families.   They even have a some fun page which I think is the best!  Sometimes, you just gotta laugh! 

Every child and family experiences tube feedings differently, there are many different kinds of tubes, formulas, medicines, and diagnosis.  It's not a one size fits all.  Which is also why it's extremely important to spread awareness.  Some children are never medically safe to eat food with their mouth, others can't get over the fear and anxiety that eating causes.  I really like CHOC's inpatient feeding program, because they seem to really understand oral aversions and feeding difficulties.  They make sure the child is medically safe and able to eat food with their mouth first.  They have six or seven different specialist (and a few different people with in that specialty) working with the child and parent all day, everyday.  They are experienced and successful. 

Remember, don't ask me when Whitney is coming off the feeding tube, we just don't know. Now I wish there was more information about weaning children off the feeding tube.  But remember that every child with a feeding tube has their own personal experience, trying to wean them off is even more personalized and difficult.  Even though I have other friends with tube feed kids and I love them and am very grateful for them, it still seems a very lonely journey sometimes.