Ruby lost more fluid over night. She is skinnier than we have seen her in a long long time. Her Dr. said that she was skinny enough to have her surgery if she were to do it while she is on ECMO. They want to see how her lung will function before they make that decision. Doing the surgery on comes with risks and we tust Dr. H to make the proper decision. Really the surgery is the least of our worries. We still have the hypertension and shunting monsters to deal with. We are finally getting to a point where we can see if being on ECMO has helped either of those things. We have long road to go to stability, but we are slowly but surely on our way. I always tell my runners you can't worry about mile 13 while you're running mile 3. Take each mile as it comes. I guess it's about time I start practicing what I preach :)
They switched to the high frequency oscillating ventilator this morning to help her lungs open up. The plan for today is the same as yesterday, get skinny and open up that right lung. They are also continuing the antibiotics for another week just to be sure.
Grandpa is here for a couple days to see Ruby. Hopefully she will continue to improve and show him how tough she is.
We'll post some pictures this afternoon. Ruby really is giving Valerie Bertinelli a run for her money.
Keep going little girl! We
Keep going little girl! We are praying so hard for your family & it's wonderful to hear she's loosing the fluid! We'll continue to pray for pee!!
With Love
Mike & Beth
You know they are knocking
You know they are knocking Sharon Stone and Linsey Lohan for getting too skinny- but it looks perfect on sweet Ruby!
I'm so excited to hear the
I'm so excited to hear the great news! Ruby is amazing! When I was at CHOP on Tuesday I gave the CHERUBS poster to one of the ladies at the desk in the NICU. I hope she gave it to someone that will put it up somewhere. Have you seen it around? I really hope it will attract CDH parents to CHERUBS if they don't know about it. I'm looking forward to more great updates on Ruby!
Karla
Braden's Mom
Great news! We'll keep
Great news! We'll keep praying for Ruby. She a tough little gal. Hope she shows off a lot for grandpa. Hang in there guys.
Yay! Nice, work team Ruby!
Yay! Nice, work team Ruby! Can't wait to see new "skinny" Ruby pictures. Love and hugs form IA.
Yeah!! Hi Chris, Holly and
Yeah!! Hi Chris, Holly and Supermodel Ruby, We're thrilled to hear the good news! We continue to send prayers and now we'll think "skinny" thoughts for Ruby. All our best from DMi to ya'll.
Oh happy, skinny, day! Ruby
Oh happy, skinny, day! Ruby looks as beautiful as ever. :) Keep fighting!
- Jenn
We are so so thankful and
We are so so thankful and praising God for good news!! Give Grandpa Jimmy a big hug from the Power Family. Tell him our Church family at Broadway is really missing him. We have moniters in the church building in the auditorium and in the entry foyer...and Ruby's picture and an update are always on it. We are praying as a whole church family and individually for Ruby. We are thinking of you all daily, hoping and praying for God's mercy and richest blessings on precious Ruby and her precious parents and extended family. I like your running analogy, keep reminding yourself that when you need endurance. I'm going to remember that when I face those hard times in life, too...1 mile at a time. :)
Love,
Julie Power and family
PS. (I'm Tye Power's wife and he is the preacher at Ruby's grandparents Church.)
What a great news. Yay Ruby!
What a great news. Yay Ruby!
Natalie
GREAT NEWS!!! Good for Miss
GREAT NEWS!!!
Good for Miss Ruby, she's such a fighter. As Aisling would say - "(Shunting and hypertension) Monsters go away!"
Can't wait to see more pictures, she's just beautiful.
Love,
Tami, Chuck, and Aisling
Oh, that's wonderful
Oh, that's wonderful news!!!
You guys are such an inspiration. Every single day.
Lots of love,
Missy, Larry and Anthony
We like good news! Our
We like good news! Our prayers are that everything will continue on the uphill track.
Mark & Roberta
Holly-I can tell you are
Holly-I can tell you are feeling better about everything due to the Valerie rip! HA! So glad to hear she is still moving forward. Love you 3, Sarah
Such good news! Keep it up,
Such good news!
Keep it up, Ruby!
Thinking of all of you. I hope you continue to have a good day.
love,
Kate
yippee for fluid loss! one
yippee for fluid loss! one step at a time Ruby.
we're constantly sending good Texas vibes your way, they might be slow cuz of the nasty humidity and smoke down here, but they are strong and will get to ya soon!
hugs
--kim
I agree with y'all -
I agree with y'all - Pulmonary Hypertension is such an ugly, ugly monster. However, from your post, it sounds like she's progressing so well and "is going to show" Pulmonary Hypertension and the shunting she's going to do well in spite of them.
Thanks for the pictures and the updates!
Leigh Creekbaum
mom to Grayton RCDH, 5-9-08 to 6-22-08
Hi Holly, This is Jennie
Hi Holly,
This is Jennie from the pool. I am praying for you, Chris and your beautiful little Ruby Hope! Anne P. gave us an update in the locker room this am and I couldn't wait to see your website. What a precious child. Stay strong and know that we are thinking about you and sending lovies from the RW pool.
We are thinking about you
We are thinking about you guys all the time. Keep up the good work Ruby! Hang in there Chris and Holly! There is lots going on in the backyard for you guys to hear and enjoy.
All the best, Marilyn