Life with a Feeding Tube

Our youngest was born very early, at 23.5 weeks gestation (16.5 weeks early).  I've talked about this in earlier posts (see here and here) so I won't go into all the details.  One common problem among micro-preemies is problems with eating.  Full-term babies get to practice the whole suck-swallow technique in utero but preemies don't.  So they're not very good at it.  Camille had an additional problem which was kidney failure.  A side effect of kidney failure is that food tastes terrible to you and you have no appetite.  Young children with kidney failure usually end up with a feeding tube because it's really hard to get them to eat enough and especially to grow.

Here you can see the NG tube.  It was definitely not our favorite.  She would pull it out and make a huge mess.

Shortly after she got her G-tube.  We were actually feeding her too much so she's a little chubby.

 When Camille first came home from the hospital I was hopeful things would work out with her eating.  I had no idea what I was getting into but I soon found out.  Not only had I been pumping for this child 8 times a day--which I continued to do, but I was now spending hours a day trying to get her to eat.  It was one of the most challenging times of my life.  I also had 8 other children at home to take care of and I was going crazy.

Trying to get Camille to eat and gain weight turned out to be an impossible task.  Despite the hours I spent working with her, she didn't eat enough to grow.  So after about 6 weeks, we started using an NG tube.  A few months later, she got a G-tube.

On October 1st, she will have had her G-tube for 7 years.  It's both a blessing and a curse.  The G-tube leaks and the skin around the G-tube is frequently sore.  We have to frequently change the dressing around it to protect the skin.  On the other hand, it's kept her out of the hospital on countless occasions when she was sick and didn't want to eat.  It's basically kept her alive and growing well.  But we're reaching the point where she shouldn't be relying on it so much.

These pictures are all pre-transplant.  She was not really eating anything before her transplant except maybe an occasional treat.

She actually does eat.  She doesn't eat quite enough--breakfast and lunch are a big challenge trying to figure out something she will eat that's not just sugar.  She's really good about dinner.  The number one reason she still has a feeding tube is she has to have 8 cups of fluid a day and that's a lot for a 7-year-old.

With her first feeding therapist, Annie, who works in the NICU.  Everett did his Eagle project making shaping pillows for the babies in the NICU.

She LOVES chocolate.

And ice cream!

At her last kidney appointment, a few months ago, the doctor suggested that she should be able to drink more of her fluids.  So we started pushing that more and she's drinking 3-4 cups a day so far.  We're almost halfway there!  My plan is to slowly increase the amount I put in her cup until we get to the right amount.  I'm really hoping we can be done with the G-tube in a year.  It might be unrealistic but what a long way we have come!