I have been putting off doing this post because I wanted to wait until I had the solution and I could boast a little. Apparently it's not going to be as easy and quick as I had hoped and you are going to have to take the journey with me instead of just seeing the results. (Isn't that how everything works with this cute little lady?)
I might have mentioned it before, but in case you missed it - Averi's G-Tube is the bane of my existence! I HATE it! I continually have the wheels turning in the back of my head trying to figure out how we can get rid of it.
Averi is spoon feeding like a pro now so the only thing we use her tube for is liquid intake. Here's what I've figured out through lots of experimentation:
- EleCare tastes like crap! I once had a nurse ask me to smell her formula because she thought it was spoiled - it was just fine.
- Because of Averi's crazy list of allergies, she has to drink a hypoallergenic formula for nutrition.
- The only reason babies drink any kind of formula is because they have never tasted anything else and don't know any better. Averi knows better. She has tasted many different foods - all of which taste better than poop, which tastes better than EleCare.
- Averi is perfectly capable of self feeding through a straw. If I fill her honey bear with baby sweet potatoes I can literally walk away and she will hold it, drink it with several consecutive swallows at a time, and be sad when it is gone. This proves that it is what's inside the bear that is the problem and not the straw. Case in point:
Finally, in desperation, I went to the nutritionist for help. Yes, you read that correctly, I sought out the nutritionist for advice. She said she understood what I was trying to do and that she would do some research to see if she could find a solution. I wished her a sarcastic 'good luck.'
Then, a miracle happened! She returned with samples of a hypoallergenic drink called EO28 Splash that comes in juice boxes and fun flavors like tropical fruit, grape, and orange-pineapple! (Why I haven't heard of it before is beyond me.) Of course they don't carry it at the hospital and we would have to order it through our home health care company and pay all the costs even while we are at the hospital, but I was willing to try ANYTHING!
I hope you're noticing my exclamation point usage! This is such a big deal!!! We still have a long way to go before she's drinking 4-5 oz of straight formula at each meal, but I think we might have found the beginning of the solution. 'Good-bye Mickey' here we come!!!