Ruby is still progressing slowly but steadily. We've been warned to expect set backs, still. The weaning of the narcotics can be rough road, but so far things are going well. Her morphine and versed are still pretty high, but they are chipping away at them. They have lowered her nitric oxide to 2ppm. We still have not had another ECHO. It will need to happen before they take her completely off the nitric. It's beginning to look like that might happen in the next couple days. Her ventilator settings have been weaned again, also. Her rate is currently at 25 and they are going to lower her to 20 today. Her oxygen is at 21%, which is awesome. Hopefully we can continue to wean the ventilator support. No one is mentioning extubation just yet, but we are slowly but surely getting there.
Her feeding is going well. She is handling the 15 ml every 3 hours well enough. She did spit up a little bit yesterday and some of the remnants in her stomach were slightly green, but the Doctors decided to "feed through it". Yes we know babies spit up, but not all babies have had their intestines manipulated as much as Ruby. She didn't have any problems over night, so hopefully she will continue to increase her feeds and digest them. She has been pooping like crazy which is a good sign that things are working like they should. Feeding is usually one of the biggest long term issues CDH babies have. We are still trying to get her to take the pacifier and will probably be easier once she extubated. We will most likely have some oral aversion issues to deal with since she has intubated for so long.
We are trying to get her used to turning her head to the right. Due to being on ECMO she's not used to looking to the right. We are trying to approach her from the right to get her used to looking that direction. She is finally starting to look down, while on ECMO she had to look at everyone upside down due to the her position on the bed. Just yesterday we notices she was looking down instead of up all the time.
Ruby is running her own race and she'll let us know when she's ready for the next milestone.
I am sure you have great
I am sure you have great therapists giving you all this information, but some things that helped Carter after ECMO were putting his toys on his right side and at the foot of his bed (things you can hang from the crib/isolette). You can also make sure you always stand on her right side or at her feet to encourage her to look in that direction and get rid of what we called "ECMO Neck." Please make sure they are dong some type of oral therapy on her to help with the oral aversion. We didn't insist on this being done soon and now we're dealing with our own set of problems as a result.
I'm so glad to see that she's doing well. Tolerating food is a big deal!! Way to go Ruby :)
http://bradandkellie.blogspot.com
I have been following little
I have been following little Ruby since her birth and am thrilled to see that she is successfully off ECMO and has had her surgery. I have a 16 year old daughter who was born with an undiagnosed CDH and spent 21 days on ECMO at Presbyterian Hospital in Dallas in 1993. From one Texan to another...Keep it up Ruby!
What a tough cookie! So glad
What a tough cookie! So glad to hear that things are moving in the right direction. Keep positive thoughts and move on Ruby time. Hugs and prayers to you all!
The Miles family
So glad to hear that Ruby is
So glad to hear that Ruby is doing well. Keep the good news coming little one, you're doing great!
Glad to hear Ruby is making
Glad to hear Ruby is making so much progress :) I knew she could do it!
Hooray for progress! Baby
Hooray for progress! Baby steps are still steps in the right direction. We are still rooting for Ruby everyday! Best wishes to all three of you as you continue to get to know each other a little more each day! Thanks for the pictures and keeping us updated.
Hey Ruby-Way to keep up the
Hey Ruby-Way to keep up the good work. Beau, Luke, and Cash can't wait to smother you with kisses and hugs. Keep working at it baby girl. Lots of love, The Buehlers
I love that Ruby keeps
I love that Ruby keeps improving!!! She is handling everything so well you guys. I hope she keeps having those good days. Praying for Miss Ruby!!
Much love, Tracy - Ian's mom
The good news is awesome to
The good news is awesome to hear. Keep up the good work Ruby! Holly and Chris, we're thinking of you all here in Austin.
Slow and steady wins the
Slow and steady wins the race. :)
All our love from the 'Lou, constantly thinking about you three.
Love,
Tami, Chuck and Aisling
Glad to hear Ruby is doing
Glad to hear Ruby is doing well... Keep up the great work precious girl!
Yay, Ruby! Love the
Yay, Ruby! Love the progress. Chris, Holly, and Ruby we are thinking of you here in Austin!
I know Julie and Jimmy
I know Julie and Jimmy through my mother-in-law and have kept up with Ruby through her. I found out about your website right after you moved and I check on Ruby first thing in the morning and right before bed. (During the day too!) Her progress is heartwarming, so many people you don't know are praying for your little girl. Love your updates. Billye Usrey