I bet you all thought I disappeared. Well, I haven’t disappeared, but life sure is busy! I barely remember how to do this bloggy thing, but I have a few things I’ve been wanting to share and finally found a moment to sit down to write a post.
First of all, we finally found a fantastic, pre-packaged organic formula. It’s called Liquid Hope, and it’s ingredients are remarkably very similar to what I was making as a homemade blenderized formula. Jenna seems to tolerate it very well, and having a packaged formula when you’re on-the-go is a lifesaver.
We also found a way to minimize pump alarms in the night due to the thicker homemade or Liquid Hope formulas. We use a Zevex Enteralite Infinity pump and bag sets, and we found that where we seemed to be having trouble with clogging was at a certain spot on the looped clip part that goes inside the pump. If you take a close look at the loop, you’ll see a raised image of a drop. If you pull that rubbery, teal tubing off of the plastic post, you’ll see something that looks like this:
We take a pair of scissors and snip off that very end piece (which looks sort of like a hat sitting on top of 2 posts with a very small space between them where feeds get clogged – we clip at the base of those 2 small posts) so that it looks like this:
Then, we simply reposition the rubber tubing over the post, and we’re good to go. The result is MUCH fewer alarms in the night. Now, when we have pump alarms, they’re usually from Jenna rolling over onto the tubing or kinking it in some way. It’s a little hard to avoid that completely, but if any of you come up with a way, please let me know!
It’s good to note that snipping this piece results in free-flowing formula, so when you fill the bag, make sure that either the cap is on the end of the tube, or the loop is clipped into the pump, or else you’ll have formula quickly running out the end of the tube. We’ve been snipping off this piece now for months, and we haven’t experienced any problems.
Finally, we’re looking at a variety of ways to rehab Jenna’s gut after two serious bouts of trouble this year. In February, her entire gut shut down from a suspected virus that resulted in hospitalization for gastroparesis and an ileus. This past month, she started having repeated vomiting and diarrhea with increasing frequency that was determined to be the result of bacterial overgrowth. The suspicion is that this was a remnant of her illness in February – some “bad bacteria” held on where they don’t belong and began happily multiplying until her system was overwhelmed. So. We’re doing everything we can to get her back to optimal gut health. We’ve added L-Glutamine as a supplement at the prompting of her Naturopath. I’ve been doing a lot of research and have found supporting evidence for it’s beneficial use for various gut issues. This article is a great summary of many existing studies. You can scroll through to see information on specific disorders and diseases, and check out the bibliography for a huge list of specific research in different areas. We’re also exploring the beneficial use of donor breast milk via g-tube, since research shows that “the oligosaccharides in human breast milk are considered the prototypic prebiotics” (page S84) and offer many protective factors for the gut. And, because she’s lost 10 pounds since her hospitalization in February, we’re desperately trying to get her to gain weight and are currently adding Scandishake to her formula as a calorie boost. It might not be the most natural solution, but desperate times call for desperate measures.
Peace & blessings to all.