Saturday, June 4, 2011

Grace has had two great days! She has been happier in her quiet room and has been requiring so much less sedation than she had been before. She is tolerating her feeds, she is up to 7cc per hour! Her goal will be 33. She just looks so good. She had her MRI yesterday and we found out that she does have some atrophies on her Cerebellum, or spots where the cells have been lost. She has another spot on one part of her brain in the Caudate nucleous, called an infarct or where her there was a lack of oxygen to that part. She also has fluid built up in the ventricles of her brain.Her head circumference is also only in the 2nd percentile.  So what does all of this mean? Well they don't really know, she could simply develop at a slower rate than her peers, she could have Cerebal Palsy, she could not be able to keep her balance, she could have a very hard time walking or with coordination. They really can't tell at this point, she will just have to be watched carefully. Now, reading all the things online about all of this makes it seem bad, makes it seem like there's not alot of hope for her to not need a ton of intervention in that area. but somehow I am hopeful. Somehow I feel at peace that she is going to be ok, that these brain issues are not going to define her life or even give her any trouble. Im not sure why I feel that way but right now I am not horribly worried about it. It was however brought up,again,  whether I had had an ultrasound during pregnancy, since her head circumference was small at birth as well. The Neurologist wondered if her brain had looked fine at the time of my ultrasound. I wonder if it really did. I should take a nickel for each time in the last 2 months I've been asked if I had an ultrasound. Apparently the only thing the tech got right was that I was having a girl.
But on to a lighter subject. Grace is doing very well witht he vent weaning and today the words "extubation" and " possibly as early as monday" were used in the same sentence!!! So pray, pray hard that she has a stellar weekend and we truly can extubate next week. That woud be just wonderful and I think she would be a happier girl without that darn ET tube! They are also hoping to come down ever so slowly on her sedation, which can be a hard thing, so pray that when they do start that, she tolerates it well and does not have any setbacks due to the stress of it on her body.
I had a few weeks where I was upset that she wasn't making as much progress as we would have liked, or that in comparrison to other CDH babies she was so far behind where they were but ya know, I had to look at it differently. The way I chose to look at it, was that even though she wasn't making the leaps and bounds they were or that we would have hoped for at this point, she is making them for her. 50% of CDH babies do not survive, 50% percent! That's alot of babies, and Grace has fought with everything she has to not be part of that statistic, even though she was truly bad enough to be. So maybe she's still so far from being "normal" but she is beating the odds in amazing ways. She has come so far and will continue to beat the odds and amaze everyone she meets.


  1. Heather CowellJune 04, 2011 8:47 AM

    I am so glad she is doing alittle better that girl is amazing!! You and Adam stay strong and we love you guys and we continue to pray for her...

  2. I hope you don't mind that I've included Grace's blog on our own blog as one of the "Blogs we Love".

    Wishing Grace all the best in her next goal this Monday.

  3. Great news to hear that Grace has been doing a bit better. I'm praying for you all!