Thursday, January 15, 2009

Knock On Wood

My peanut is doing AMAZING lately! I am knocking on some serious wood right now, but she is just doing great. Her feeding rate has never been able to go over 50 cc's an hour without serious retching and screaming. We have tried every few months to pump her even to 55 cc's and hour, with no luck.

Finally the GI mentioned that perhaps she doesn't like the Beneprotein. So we took it out. No retching! No screaming! No throwing up! Tried adding it back in, BOOM. Back to the yuck. So we stopped, and as I blogged about we went through the challenge of trying to figure out how to get protein in her. We knew then that she still doesn't tolerate dairy (Beneprotein is a whey protein). She didn't tolerate soy protein powder either, it had the same results. I finally found some Brown Rice Protein at Mother's Market. She tolerates it!! It doesn't dissolve enough to go through the feeding pump though, so she gets it in one of her hydration boluses in the daytime. But no retching, screaming, or puking!

I gave it about a month, and then tried bumping up her feeding rate to 55 cc's. She did fine for a week! Up to 60, 65, 70 - still fine! I bumped her to 75 cc's and hour, and she's been there for two weeks now. Sleeping fine, no retching, no screaming, no puking! HOLY COW!!! So knock on wood, it seems that the protein was to blame for the feeding problems and NOT the rate itself!

The only problem now is that we only have 500 cc feed bags for her pump, so we have to remember to wake up at midnight or so and refill the bag.

My goal was always for her to NOT be hooked up to the feeding pump during the day. For her to only be hooked up at bedtime and then run overnight. We are THERE now! She gets hooked up at 7pm when she goes to bed, and is unhooked when she wakes up. WOW WOW WOW!!

We added in some extra hydration boluses during the day, because she can't go more than 3 hours without fluids due to her metabolic disorder. So she gets Pedialyte all day, and then her formula overnight.

I am EXCSTATIC!!! I only hope that this continues. As I said, knocking on some serious wood here!

For any of you dealing with feeding issues, are you using Beneprotein? From researching it more, a lot of kids don't tolerate it. Interesting to know, after she's been miserable on it for two years!

9 comments:

Jessica mommy to Alex/ RTS said...

I will knowck on wood for you! Im so glad you have figured this out!

The VW's said...

What a blessing! I'm so happy to hear that she is doing so well!

Denise said...

Wow, what a great break through!!! Knocking on wood with you!!!

angie said...

Go Peanut...and go Mama for figuring it out:).

angie said...

Go Peanut...and go Mama for figuring it out:).

shan said...

Awesome news! That is wonderful that she's taking feeds so much better and happier/more content all around! Yippee Peanut:) This made me smile, thank you for sharing!!!

Keri and Jason said...

Hooray for Peanut! This has to be such a big relief off your shoulders. Logan is bolus fed only and we used to have a lot of problems with him gagging and retching too. Over the past two plus years, we have managed to work out the kinks. Glad you have too!

BTW, I've given you a blog award. Come and snatch it.

Keri and Jason said...
This comment has been removed by the author.
Kristi said...

Glad this has been figured out for Miss Peanut! :)
Gracie doesn't tolerate those concentrated protein or fat products either.
Hip Hip Hooray for Peanut's comfy tummy!
Kristi