9/3/08 - AMAZING!!!!
First off, let me tell you about Kayleigh before I go in to what was so amazing that happened today. AHHH, I can't wait to tell you!!!
Okay, first off, Kayleigh had a much better day than her last few days. She was no where near as irritated as she was which only means that whatever was bothering her is slowly dissipating (HOPEFULLY). She met with the PT (Physical Therapist) today and she said Kayleigh looked great and she was not grumpy when she stretched her arms and legs out for her workout. The PT comes once a week to give Kayleigh a workout to make sure her range of motion is good and there isn't any physical complications.
Kayleigh also started her feeds with the Neocate and at first she was having some aspirates, but she had none when we were there for her 3 o'clock cares. She took all 3 mls with no problem at all. Let's now hope those 3 mls find their way out of the body without any issues this time around. Being that they use the Neocate as a last case scenario because it is expensive, I don't know what else they would do if this doesn't work. Cross your fingers and say your prayers.
I got to hold Kayleigh for almost two hours today and she was perfect the whole time. She got a little grumpy towards the end, but it was time to do her cares. I am guessing she is getting used to waking up every three hours for cares. We were so happy to see that she was relaxed and sleeping peacefully. We changed her diaper and she pooped a little, but almost peed all over Cynthia. Kayleigh also held her temperature very well when she was out.
OKAY!!! Are you ready for some awesome news???? If you have been following our story from the beginning, you would have learned that quite a few doctors agreed that Kayleigh would not make it to term. She had too many issues that pointed to an outcome of her not surviving much longer. This was a ten week battle to gain enough weight for viability. When we got the news from one doctor who told us not to change our normal living schedule because it is inevitable that Kayleigh would die, we decided to get a second opinion. The second doctor we spoke to hit us with the same news, but had much better bedside manner. We were still given a very very small chance, but they knew we weren't giving up without a fight. That doctor emailed Aimee and I this morning to ask how Kayleigh was doing. We were so excited that the doctor contacted us, even with his busy schedule to ask how our little girl was doing. That right there shows a lot about a person. (Here is the exciting part) As you know, Aimee and I want to share our story with anyone and everyone to give them the same hope that we were given by so many of you, well...He is speaking at a medical conference tomorrow and wants to share Kayleigh's story with many other doctors to give others hope. He wants to inspire people that no matter how bad a situation looks, it is important to have hope. HOW AWESOME IS THAT???? Below is his email that just makes all of this hard work, stress, anxiety and insanity worth while.
I am so glad things are well.
I hope things go well with the genetics doctor.
I look forward to meeting Kayleigh and seeing the 2 of you in the near future.
Tomorrow I am speaking in a Medical Ethics conference and I am hoping that you might allow me to share some of your story (without names, of course). Although it is a conference about end of life care, I get to talk about care at beginning of life! . . . and HOPE. . . especially when things look worrisome. I think your story would be inspiring and would emphasize the importance of hope. . .
If you prefer not, I certainly will respect that.
See you in the near future,
That is exactly how I want to glorify God with the situation He has given us. I want nothing more than to spread the word so others will have hope, and that is exactly what has been happening. I have had so many people share their stories on how Kayleigh has made a change in their lives and now I can reach out and touch the lives of doctors who at first hand that can give their patients hope. Beyond all of my triumphs in my life, helping other people make a change for the better in their lives has been the most gratifying of them all. I feel like God has used Kayleigh in my life to help others find hope and that is exactly what I am going to do.
Thank you all for your prayers, words of encouragement and just plain being there for us.
The Freemans :)