Saturday, June 25, 2011

Wow the week flew by! The princess is doing well! Early in the week, Grace's dr's decided that they wanted to switch her oxygen from high flow with a blender to off the wall regular canulas at 2 liters. I was not so sure how this was going to go, since she was desatting quite a bit still when upset and was able to recover by being turned back up to 5 liters. Well really I shouldn't have been worried. She is doing awesome on 2 liters! When resting her sats are about 99 and 100 and when she gets upset, sometimes she doesn't desat at all, and when she does it's not awfully low and she comes back up quickly and easily! She is doing so great!
She had Physical Therapy on Weds, and she wasn't too happy but she did well, she has alot we need to work on with her to get her closer to where she should be.
When Grace used to cry she sounded so sad and pitiful and to me it sounded like crying was an awful lot of work and painful for her. Now her cry is strong, you can hear her from the door when you walk in, over the phone and she does not act like it bothers her! Her nurse said yesterday, "wow what a set of lungs she has". Amazing words to be spoken about a baby with CDH! 

Grace had her hearing screen this week too, and she PASSED! Great news! Babies who are on ECMO and intubated for so long are at risk for hearing loss, but as of now she is good! Now, this doesn't mean she won't develop it at some point so she will need to be followed and has another hearing test scheduled for 6 months away. We have our first outpatient appointment scheduled. Even though it's in 6 months and obviously she would be home in 6 months it was super exciting to schedule it!
Grace is continuing to wean sedation very well, she should be off of her drips completely in a week or so unless she tells us otherwise. She is not requiring much breakthrough at all either.
And a small thing, but today she got to have her pre pulse oximiter taken off! She had her pulse ox measured pre and post, one on her hand one on her foot previously and now we just have to measure her post! Her hands are free. They also are going to try to feed her by mouth this week hopefully. Honestly not sure why we are going straight to a bottle when she cannot suck. I have been asking to have someone come work with her to get her to suck and learn how to use her mouth and keep being told "oh thats a good idea we can do that" I have been trying to help her, but really I don't know what Im doing! So I really do not think it's going to actually happen that she will be able to feed by mouth but you never know.
She is doing so well!
Please pray that she will continue to do well
pray that we can get her transitioned from her Flolan to teh Bosentan without issue
Pray that she can learn to use her mouth and that her stomach will tolerate it, right now her stomach seems to be moving, she's had her g tube clamped for a few days with very minimal retching and no distention.
We are finally steadily moving along in the right direction!


  1. Hooray! I am so happy to read of such great progress from Miss Grace!!!! I am so proud of her and very happy for her family. I will pray for her (and you!). We continue to deal with worrying about feeding with Clara. We are a family of BIG eaters so it is a little strange to be praying for weight GAIN! Tell Grace that I said to keep up the good work!
    Mary Ann in North Carolina
    Clara's (CDH 3.23.11) grandmother

  2. Wonderful to hear the news. Hope Grace continues on such a positive path and we are always praying for you.

    Greg, Leslie, Cole and Baby Reed

  3. Miranda,

    I would love to be able to get your email address so I can "pick" your brain about all my questions. I will be in Ann Arbor on July 7th for more tests: another fetal MRI, fetal ECHO, and so on. On that day they will also set-up the induction date which they think will be on August 4th. Thanks so much:)


  4. This post and pictures make my weekend!! She's so cute!!

  5. Leslie, It's
    Please feel free to ask anything and everything you'd like:)
    We will still be around on July 7th, I wish we were that close to home, but not quite yet! So maybe we can meet up, but if not, have Jeannie bring you by to see the princess:)