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:
Since Averi's appetite came back after cycle 3, I decided to start experimenting with flavors and textures to see if I could trick her into drinking EleCare. Things that didn't work: mixing a little formula with baby food, adding extracts like mint, vanilla, lemon, and almond, adding apple juice, thickening with homemade thickener that is less creamy, adding instant potatoes to flavor and thicken, thickening apple juice with all options listed...the list goes on and on.
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!
So we watered it down, thickened it, mixed it with baby food, put it in the honey bear, and spoon fed it to Averi. The outcome wasn't always good, especially with the grape, but after several meals of getting her used to the same flavor, I was able to convince Averi to drink 2 oz of thickened tropical fruit formula mixed with a 3.5 oz container of bananas from the honey bear! She didn't hold it on her own and she pushed it away several times but she eventually drank the entire 5.5 oz!
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!!!
3 comments:
good luck! and that is sincere, not sarcastic. I wish the best in getting rid of that annoying mouse. He's definitely be around for too long.
YEAH!!!!!
I am so happy for you. Progress is progress.
Man, drinking EleCare sounds like cruel and unusual punishment.
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