Feeding Tube Awareness Week 2018 Day 1

Topic: Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding.


Both of the girls have feeding tubes because they can not eat orally. They even can't handle food in their stomachs.

Both girls are fed via a GJ tube which enters their body at their stomach and has a long tube that runs into the second part of their intestines. Both kids are fed into their intestines 24 hours a day. They get formula for most of the day and for the last part of the day they get pedialyte. They need 24 hours feeds to be able to get the nutrition they need and to keep hydrated. Because they are being fed into their intestines the pump has to run at a slower rate then someone who is fed into their stomach.

There are a few reasons why the kids needs feeding tubes.

1. Their throat does not make coordinated movements. Throats should move food down in an orderly fashion where muscles move together. The girl's esophagus muscles contract and relax randomly.
2. The lower esophageal sphincter (this connects the stomach and esophagus) is supposed to open in coordination with the movements for the esophagus however for the girls it opens and closes randomly which causes stomach contents to leave the stomach when they are not supposed to (causing reflux) and causes things that are swallowed to sit on top of the sphincter when it does not open when it is supposed to.
3. Those two things combined causes food to flow in both directions in their throat, and once things are going up and down at the same time food starts to pool at the top of the throat and when they breathe the food goes down into their lungs causing them to get aspiration pnemonia.
4. Any food that does make it into the stomach stays in the stomach for a lot longer then it is supposed to (giving it more opportunities to be refluxed) When Jillian did oral trials when she was little she would vomit baby food that she has eaten 15+ hours before.
5. Your intestines are supposed to only flow one directions however for the girls there is muscle coordination issues in the intestines causing things to not move as efficiently as normal. We have had many nursing instructors in our hospital rooms while their student is giving medication to one of the girls and they always tell the students that you do not have not clamp a j tube extention because they in theory should not backflow however both girl's tubes will backflow (infact if they are not on a high enough rate then they can backflow while feeds are going in).

So for the girls there are multiple reasons why they have feeding tubes.

Without their tubes they would have pneumonia all of the time and would not be able to grow because so much of their food would be vomited.

For the girls, eating orally is not a safe option therefor we are SO thankful for their feeding tube making it so they can get nutrition to be able to grow and thrive!

Our annual feeding tube family pic

We are getting closer to NIH! Last week was kinda crazy... crazy DME situation (there are still 38 tanks of oxygen from our old DME in our entry way) and a frozen pipe (gotta love 50 bellow) plus a busted mailbox and snow. The kids and I didn't leave the house from Sunday afternoon until Friday afternoon because they don't handle cold well.

This week we are trying to do things a little different. We are trying to build a life giving week. I suck at saying when I need something. For some reason I tend to think everyone can read my mind and then get annoyed when they cant (I'm working on that!). So this week I am trying hard to be intentional about planning things for our family that will fill us up before we head to NIH so we do not go there worn out.

The feeling of stress in palpable from Brent, Jilli and I. We can all feel the huge mix of emotions we are feeling about heading to NIH. There is so many unknowns. So I am trying to keep this week as stress free as possible.

That is looking like this past weekend Brent and my dad went to a men's conference for church on Saturday and then we went to Brent's company holiday party. While the guys were at the conference mom and I took the girls luggage shopping so I could pack for the trip. Yesterday we went to church and then I went to brunch with a friend! I love brunch but rarely go out for brunch and I LOVE this friend! We also went to a little shop near the restaurant. It was nice to just look around.  Brent and the girls went and picked up a couple of things at the grocery store while I was gone and then we headed home. Tonight we have friends coming over and Wednesday we are looking at seeing friends. I also have a friend coming over tomorrow to help with my back, which has been threatening to dislocate since Saturday.

I also got most of the packing done. Brent and I still need to pack our clothes but I got a ton of the girls stuff done!

Here is to a great Feeding Tube Awareness week!

Jilli dressed all of her dolls for the cold the other day. I am working on a post right now about the differences between the American Girl doll and the Target/Walmart versions of 18in dolls. I didn't think that the dolls would have as much difference as they do

Lydia and her babies!

Jilli pretending to drive an ambulance for Lydia's baby

Lydia playing little people

The girls playing with my old Barbies at my parents

I was shopping for new grey boots because mine are no long water proof (or warm)... sadly I didn't find any in the multiple store I checked but Lydia loved sitting on the bench. She thought she was such a big girl