Tuesday, May 26, 2009

May 26th, 2009

Wow! I figured out something else! I thought that I had to delete my previous posts in order to write a new one. Ah Ha moment! 

First thing today, I need to send special thanks to Josh Hurst and all of his fellow students at Putnam City North High School. Josh helped me to get this prayer group moving and it looks like much of the student body at his school has joined. This must be a VERY special group of kids, I wish that I could meet all of you. As an educator, you all hold a very special place in my heart! 

Chloe is stable. Yesterday, the respiratory team began trials again which allow them to take Chloe off of the ventilator for two hours twice a day. I was there for the first two hours and she did very well. They will lengthen this time as she continues to show them that she can tolerate it. She continues to breathe very fast, which seems to be her 'normal' and that is being taken into account. Her feeding seems a bit more complicated. She pulled the feeding tube out again a few days ago, but this did allow the docs to place it where they wanted it to be in the stomach. She is not being fed with the continuous drip anymore, but every hour and a half, more like a baby would be fed, with a larger amount of food getting into her tummy at one time. There is still some reflux into and out of the nose at times, so that is being monitored. It seems like I am there a lot when that happens and I always sort of panic. She needs to have everything suctioned immediately so that there is no aspiration into the trach and lungs, so that really brings a feeling of anxiety. Yesterday I yelled for the nurse, by the time she got to us, I had the suction tube in my hand, but hadn't remembered how to use it! It is all just a bit intimidating to me. So, the feedings will be increased as much as the tummy allows. Otherwise, Chloe is growing and just being more and more dear to our hearts each minute. The hearing test has yet to be completed, but yesterday we were having a big rainstorm and as Jennie and I were standing by Chloe's bedside, a huge thunderclap practically shook the building. Chloe acted startled and we were absolutely convinced she had heard it. She also wakes up when we arrive and tends to stay awake for long periods when there is someone in the room. Being so alert, she seems to listen to all that is said, she MUST be hearing! So, those ear canals must be functioning, which is a Godsend! I still do not understand what they will do with this situation. They will eventually fashion her ears, but I have no idea how that will effect the pseudo ears on her face and the functionality of those canals. Time will tell. She has grown 1/2 an inch and with the gaining and losing of ounces here and there, now weighs one pound more than her birth weight! 6 lbs. 11 ounces! Progress is being made, and I am absolutely certain that the power of prayer is at work. My mood is certainly more hopeful than in my last update, I think that prayer and support from so many people is lifting me up. I will be forever grateful to each and every one of you! I finally had the opportunity to just SHOW Jennie this page yesterday. She was so amazed and grateful for all the love and good wishes that people are showering on this family. We thank God for all of you! Lovingly, Nancy

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