Feeding Tube Awareness Week Day SIX

     Awareness Week Topic of the Day: What do you want clinicians to know about the day-to-day life with a feeding tube?

First time parents rely a lot on their doctor’s advice.  They don’t know that they have to be an advocate for their struggling child. But once the parent realizes they do need to advocate for their child, they are considered to be “difficult.” We are not; we only want what’s best.  I want them to realize that when a child gets a feeding tube for the first time, the parents or care givers have done a lot of research but still don’t know everything!  It takes a lot of time to get use to the tube (whether NG or G), and to learn how to use it.  I was really unhappy that, when my daughter got her NG tube, they made me reinsert it the next day!  I still am.  It’s torturous to babies to have it inserted, and there was nothing wrong with the tube, they just wanted to make sure I could do it.  It’s not like I didn’t want to learn to do it, I just really didn’t want to put my daughter through that again, so soon!  So I would prefer that when a baby gets an NG Tube, they stay at the hospital only long enough to make sure it’s working and to get on a good feeding schedule.  Then maybe a week later, go to the GI Dr. and have them help you learn how to put it back in.  I want Clinicians to know that parents haven’t done this before, so just because it’s easy for you, doesn’t mean it’s easy for us.  I probably called the GI nurse once or twice a day concerning Whitney’s tube and feeding schedule. I want them to realize that the NG tube is only for a short period of time...not 9months.  NG causes aversions to get worse!  So for the G-tube, I read up on it more and found a great resource, feeding tube awareness website, to help me with all my questions and concerns about it. We finally got on. I still called the doctors a lot though, after we got home from the hospital.  But the GI doctor really didn’t understand why she wasn’t gaining weight and wanted Whitney to have either a Nissen fundoplication or a GJ tube!  All she really needed was more calories! Those two options basically force them to keep the formula down, even when they can’t handle it.  And he would only give us two options for formula and Whitney didn’t tolerate either!  I called them every day saying she was throwing up the formula and she even lost weight on it.  I’ve cried so many times because I didn’t know how to help my daughter gain weight.  That’s why I couldn’t wait to do a Blenderized Diet.  Although the GI doc didn’t really care for us to do that.  But doing it is so much better for Whitney and she is gaining really good weight.  Clinicians should know that it’s difficult giving medications to our babies several times a day, every day.  It makes me sad that my baby depends on these meds to not be in pain.  And some Dr.’s or therapist just ramble on about all that they know, and never really listen to the parent’s needs. Any ways, that’s it pretty much it on what I want clinicians to know about the day to day life with a feeding tube. It’s not easy, but worth it.