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How & what we feed Raya

I've gotten a lot of questions recently about how Raya gets fed and what she gets fed, so here it is. :)
First, the "what". About a month ago, we finished a 2 week long transition from Neocate Jr. to Peptamen Jr. Both are nutritionally complete formulas for kids with digestive problems. According to Neocate's website, "Neocate Junior is a nutritionally complete, powdered amino acid-based medical food for children ages 1-10 with cow milk allergy and other food allergy associated conditions involving gastrointestinal tract impairment.
Neocate Junior has been formulated with extra vitamins and minerals, especially for those patients with malabsorptive conditions resulting from gastrointestinal tract impairment."
We recently switched her to Peptamen Jr. because it's a peptide-based formula (which means it's a little less broken down than amino acid-based Neocate) and we wanted to see if that would help with her chronic (and very caustic/acidic) diarrhea/diaper rash problem, which it did. Here's what Peptamen Jr's website says:

"For the Nutritional Support of GI-Impaired Children Ages 1-10, Complete tube feeding or oral supplement, Balanced peptide profile to support nitrogen absorption and growth" blah, blah, blah.
Currently, Raya gets 900ml/day of formula. She gets 625ml overnight, 245 during the day, and another 30ml mixed with 7 oz of water that we put through her G tube. All of the formula goes through her J tube.

Here's how she gets fed. We'll call it Feeding Pump 101. :)
Here's her backpack with her Zevex Enteralite Infinity pump:

Yes, if the front pocket gets zipped all the way, it almost always gets kinked and then the formula doesn't flow like it's supposed to and/or the pump beeps frequently, which is annoying.

**UPDATE: When the bag design changed and we got a new backpack, we were able to start pulling the loop of tubing into the backpack and zipping the front pocket all the way so we don't do it like this anymore.

To access the buttons on the pump, we unzip the little pocket on the front. Then we try to push the buttons while holding the elastic band out of the way and trying not to accidentally push the button that clears the dose and rate on the pump or drop anything. :)

Inside the backpack is the bag we fill up with formula and usually 1-2 ice packs to keep it from spoiling, especially overnight.

To get a feed ready, we hook the tubing into the pump, pull the red plug through the button hole, and strap the pump bag into the backpack.
For Raya's overnight feeds, we have 2 options. We can either set the backpack in the corner of her crib and hope that she doesn't wake up and decide to tear everything apart (which happens frequently, especially during naptime) or we can hang it on the IV pole. The only problem with hanging it on the IV pole is that if she gets too far away from it, there's no slack in the tubing and it's a little more scary since she rolls around a lot and could get it wrapped around her neck. The solution to that problem is this:
This is a 4 foot long extension tube. Adding this makes it take forEEEEEEEVERRRRRR to prime the tubing (you have to get all the air out so you don't pump the kid's belly full of air) but it's SO nice to have extra length so that she doesn't get tangled up and pull the GJ tube out of her stomach.
Here's how things look for her overnight feed:
We take the pump out of the backpack and hook it to the IV pole for 2 reasons. One is so that it's easier to plug it in. The location of the plug on the pump makes it hard to plug it in when it's in the backpack. The second reason is because we fill the pump bag as full as we possibly can at night and put 2 ice packs in to keep it cold so there's not really room for the pump. The feed goes into her J port and we plug in her G tube drainage bag to keep fluid from building up in her stomach overnight, which contributes to her vomiting in the morning. We also hang blankets on the sides of her crib to keep her from messing with the electrical outlet that her pump plugs into and to keep her from being disturbed by all of our comings & goings since she shares our room.
For the daytime feed, I try to do as much of it as I can when she's napping but lately she's not napping much. The rest of the time when she's awake, she has to wear the backpack or else be confined to a small space or in the car, stroller, or high chair.
During the day, she gets 1 oz of formula mixed with 7 oz of water. We give her 45ml at a time into her G tube (so it goes into her stomach, not her intestine) and give it every half hour. This is to give her stomach a little exercise and hopefully help transition back to gastric feeds at some point.
So there you have it. That's how we feed Raya. :)


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