11/13/08 - Light 102.9 Radiothon Success!!!

The "Our Kids Come First" radiothon with Light 102.9 has been nothing short of a miracle for Kayleigh and all the other children. What they have been doing for Levine Children's Hospital is amazing and we are truly blessed to be in such a wonderful place. Thank you so much Jen, Jim, Phil, Lindsay, Kirstin and Mark!! WE LOVE YOU ALL!!!

Here are a few photos of our day. Some of you may have heard just me talking around 3:30 or so, but that was not planned. I was actually in the room taking photos, waiting for our full family air time, but Jen (from Light 102.9) wanted me to talk ASAP for a quick segment. I had no choice to get on the air and for those who know me, I get really nervous to where I shut down when I have too much time to think about speaking in front of people. I am so glad I was put right on the spot and had no chance to worry myself sick. It also made it easy for our long live session which was around 4:30. They interviewed Aimee, Brandon and I for a good 10 minutes. Allyson was too nervous to get on the air, so they gave her headphones to listen to it live. It was a complete success and if you listen to the live feed (CLICK HERE), you will catch it again. They will play it every few hours.

(L to R) Phil, Grandma, Jen, Me, Brandon, Aimee, Ally, & Papa "G"

Kayleigh has been doing pretty good. She was making little baby (cooing) sounds yesterday, which was so darn cute!!! She is currently weighing (5 pounds - 3.9 ounces). That is really great progress with her weight, so we can only pray that she keeps it up. Growth is very important right now. She is on full feeds (40mls) and it tolerating it very well!

On another note, The cardiologist did another echocargiodgram yesterday and it showed that Kayleigh's pressures are still high. Right now, her pressures are measuring around 68. When Kayleigh was having a hypertensive episode at it's worst and needs to be heavily sedated, her pressures are in the 80's. You and I might have pulmonary pressures somewhere in the teens, so that can give you an idea of where Kayleigh stands at this point. The scary thing is, when she had her echo over a week ago, her pressures were still around 68. That is not a good sign because the last thing we need is her pressures to become fixed in the 60's and not ever be able to drop below that. She could always be on the verge of a pulmonary hypertensive bout that could take her life. Doctors aren't 100% positive, but they feel that growth and time (w/o any infections) are the only cure for her situation. We need to pray and get those pressures down as much as possible, and hope she doesn't get any kind of infection that sends her in to a downward spiral.

Lately, she has still been getting irritated and the nurses have to give her a sedative to calm her down, but some days are better than others. I am guessing the Reglan didn't make a difference afterall. Last night, she got really irritated again, but was able to be calmed down without medication. They have increased her oxygen to 6 liters at 90% and she is still on the cannula. Her NO2 is at 15ppm, her Prosticyclin is at 15 (20 is max) and she is still on Viagra, which all of those are to help keep her from spiraling out of control in to a hypertensive episode. Remember, once those pressures become "fixed," she can be in serious trouble. Please pray as hard as you can for her to get better! We want our little girl healthy and at home.

Here are some photos of our sweet Kayleigh that we have taken over the past couple days :)

Doesn't she look so awesome?!?!

God Bless,

The Freemans :)