When I go on and on about Kayleigh and how close to death she was two weeks ago, there is only so much detail someone can describe to implant that image in someones mind of how scary that situation was. But, to show the people first hand what it was like to see her in such a rough state compared to what she looks like today, will make you rejoice in the Lord that He has performed a miracle in our little girl.
You will notice in this first video a huge difference in Kayleigh appearance, but not only that, you will notice the difference in the atmosphere itself. She is swollen beyond recognition, but it is noisy from her machines beeping, there are two nurse working at once, and she has wires and lines coming out from everywhere. Only to compare it to something else will give you the true definition of her progress.
This video from yesterday is the complete opposite. Think about all the same things I mentioned above, mainly appearance and noise level and you will see the difference in what a short two weeks has made. If you have never been in this situation before, just think about the stress level from the first video and the stress relief on this one. It is so amazing and wonderful to see her so comfortable and enjoying a nice big finger desert.
This was another video that I took today just prior to the doctor's second attempt to extubate the vent tube. Kayleigh was just about to go to bed too, but it is so awesome to see her so calm and relaxed. Of course this video was taken a few minutes after we changed her diaper in which she was quite irritated during her pooping process. ha! :) I wish I was allowed to take a nap after every time I went to the bathroom.
Sorry if the videos come across dark, but there is only so much light we like to keep on in the NICU. Kayleigh needs peace an quiet so she can sleep and grow. It is so hard to visit her though and not want to touch or kiss her as it will wake her up. It is amazing how much her heart rate changes when she is sleeping and when she is awake. That extra 20-30 beats per minute because she is excited to see us can cause her to lose weight.
After the second failed attempt today to extubate her, the doctors have decided to give her some steroids (Decadron) to help reduce the inflammation in her airways. That may be the best way to get her off the vent as soon as possible. Saturday is going to be the next attempt, so pray that her airway gets the treatment or recovery time it needs to come off that vent.
Besides the troubles with the vent, Kayleigh is doing fantastic. Her oxygen is around room air (21%) and her pressures settings are almost at their lowest settings. I didn't think you could go much lower than she was before, but I was wrong. Her feeds were increased to 12ml's/hr and tolerating it very well. Since she hasn't been growing a whole lot in the past week, they decided to fortify her milk with Similac Special Care, so she can get 27 calories. Hopefully she will continue to tolerate that as we know how her past has been with fortifier.
The Nitric Oxide was lowered to 10ppm today and Kayleigh is still doing amazing. That goes to show that her pressures may very well be "REACTIVE" still. How amazing would that be if they were??? It would be a true miracle that she has gone through such a rough patch and still come out on top with reactive pulmonary pressures. If we can continue to move Kayleigh in the right direction, she will beat this challenge fair and square and go home a champion! What a tough little cookie!Does anyone know a good hair restoration or hair coloring for men? (jk) Actually, with all this stress from this crazy roller coaster, I am shocked that I am not completely bald by now. Although my oldest brother swears that "Bald is Beautiful." Maybe on him, but I have taken a straight razor to my head for baseball before and it isn't pretty! The clippers I have cut it short enough because it's receding, but I am not going to go any further than that.
I am loving this Twitter thing! It is great to update for you all through out the day so I don't have to post every single night. I know a lot of people get text messages when I update, so I don't want to flood you all with too many messages, but If anyone has any suggestions as to what else they would like to hear about, let me know.
Like I say day in and day out, our goal with this blog is to touch lives. So everyone has homework tonight and that is to tell one person the glory of God through Kayleigh's Story. Pass them along to see what the power of prayer can really do. If you haven't grabbed on of Kayleigh's Button on the tool bar to the right, do so and add it to your blog, website or message board for others to see. Let's all do God's will and touch the lives of others in one way or another. Maybe we can change this world one person at a time because we all know that our future is in the hands of these children. If one person can hug their child closer at night and love them unconditionally, just think of the difference it can make in their child's future.
There is no greater feeling than to love or be loved!
The Freemans :)