In honor of Feeding Tube Awareness Week, I am posting a bunch of photos showing how we have adapted to feeding Natalie with it. It's been a learning process that sometimes involves repurposed equipment, but I feel like we mostly have this down!
We love her feeding tube and the amazing tubie community that has taught us so many tricks along the way!
First day and she had an NG tube. We didn't know why she couldn't eat, but she clearly couldn't. She needed such a tiny amount of milk for each meal that it could fit in that small syringe!
Oh the Joey. That's the feeding pump (Kangaroo Joey) we ended up with once she got her Mic-Key g-tube button. I swear I would hear it's alarm sounds in my dreams…
It went everywhere with us. I learned to get creative when we weren't near an IV pole to hang out.
I tried gravity feeding with this fancy clamp made for holding baby bottles. It didn't work well at all for syringes and ended up in a closet.
Months later we finally got the back-ordered backpack for the Joey. This little puppy went with us on many trips! He was invaluable on the plane rides to Seattle!
We finally get to add food to her diet! Sorta...
That first syringe had about 3mls of food and it still felt monumental!
You can also see where the tubing from the Joey connected to her feeding tube extension (on the right). There were a few exhausted nights I would forget to take the protective cap off the tubing and ended up feeding her bed instead of her.
Also you can see the cords in the background…. this kid had soooooo many cords.
One particular hospital visit she needed to be fed and we were stuck in the ER with no pump. After waiting way too long to get a pump, I crawled up in bed with her and fed her a 10ml syringe worth of milk at a time. One of the nurses felt so bad about the effort, but it's not like I had anything else I needed to do!
One of the last photos with the Joey! When we moved to Houston, the medical supply company couldn't get with it and get us her supplies. I had an extra months worth in the closet and made it my goal to stop using the pump by then. (DME suppliers - a constant thorn in my side!)
Also we didn't have our stuff, so I made a makeshift pump holder with the windowsill and a giant command hook. I was so proud of myself!
So what did we use instead of a pump? Giant syringes! We had been using them some for her added food, but I switched to mixing food and milk together and syringe pushing it all. Also, the syringes that the DME company provides are so bad, they are impossible to push after a few uses and we got 5 per month. When using them for 4 meals a day, that math doesn't work.
Turns out the feeding community has identified the most amazing syringes that last for months with no issues. And they are made for feeding squirrels... That's right - squirrel syringes are better than people ones.
This fun bottle is usually what we keep her food in before drawing it into the syringe. Smart me didn't pack the syringe one day. Turns out you can go straight from the bottle to the extension - though it's incredibly hard to squeeze it in when it's a thick meal!
Speaking of which, more calories needed meant a thicker blend of food. I ended up giving myself some pretty bad hand & wrist pain for my effort. And then I discovered this amazing syringe pump. The medical ones are thousands of dollars and not covered by insurance. This one was less than $300 and for liability reasons "Not for clinical use on humans". It is amazing and has been a game changer for feeding the little one while making dinner. My BFF for sure!