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 :)

27 comments:

Ashley, Kyle, and Baby Boy said...

i pray hard for your little girl daily and have linked to your blog from mine!

her lips are so beautiful in these pictures! perfectly pink!!! Be Strong, Kayleigh!

Anonymous said...

WOW! Over FIVE pounds now!!! That is so awesome and she looks WONDERFUL! Her cheeks look so squeezable! I will keep praying for the pressures to come down and for her to keep putting that weight on and to grow fast!

It sounds like you had a spectacular day at the station! I will have to tune in! I'm sure you guys did GREAT!

Thanks for updating us and sharing more pictures of our cyber baby! :) I love her!

Karen
cincymomof4

Anonymous said...

Wonderful pictures!!!! She does look wonderful in them! Over 5lbs! Wow, that is fantastic. Keep growing Kayleigh and try to keep that stress level down.
With Love from Southern NH!

Jenn said...

I heard you talking about your sweet little miracle today on the radio and after I got done with my running around I sat down and read the blog from the beginning. I am praying that your little one will contiune to grow strong.

Waves of Victory said...

She DOES look AMAZING!!!! I con't believe she's over 5 ounds now! That's awsome! Kayleigh is always in my daily thoughts and prayers!!!

In Christ,
Rachel

Sarah Benedict said...

Not a day goes by that you guys and Kayleigh are not in my prayers throughout the day. I wear her bracelet all the time and that reminds me. She looks great! I can't believe how big she has gotten!

Anonymous said...

Wow! Kayleigh is over 5lbs?? That's awesome news! I can definitely see the difference in her face..she's getting chubby cheeks :-)

How's Aimee feeling? We continue to pray every day for you guys.

Karen

Anonymous said...

God please help Kayleigh to lower her pressures and to not let them be fixed.Please watch over her and help her over this last hurdle to get her home so that she can be with her loving family. Amen


She looks great! Love and miss you all of you!
Brandi in ohio

Anonymous said...

It is so good to see her little face starting to get that plumpish baby look!!!! We think of her and pray every day!!! Thank you for keeping updates for "our" baby!!! We think of you all as part of our family.

Keep the faith!!! You are strong, kayleigh will remain strong!!!

love,
the Andrews Fam

DivaDesirae said...

This was amazing!
I was there in a red shirt front row!!! From 4-7pm
I so bad wanted to walk up to yall and introduce myself! But i didn't :[
It was amazing to hear ya'lls story and made me cry!
Hope yall have a wonderful holiday!!

Unknown said...

I just found your blog and have been following Kayleigh's story which is amazing. I found your blog because I was looking through some information for a friend of mine who just had a preemie herself at 24 weeks on December 5, 2008. I have added Kayleigh to my prayer list and will also add her to the prayer list at church. She is so beautiful and looks wonderful. I am praying that her pressures come down so she can come home and be with her family. Keep faith and may God bless Kayleigh and her family.

In Christ,
Amber Hoberg
Prayers from Texas

Anonymous said...

Ive tried listening to the live feed but im not gettin anything... Ive been thru all the FAQ's and stuff... Anyone have any ideas?

Rebecca

Kimberly (Anthony's Mom) said...

Hi there Little...... OH wait a minute!! She isn't LITTLE!! Hello there full term size Kayleigh!!!! She is just blossoming! Its so beautiful to watch. She is an adorable cutie thats for sure.

Kim

Amanda-The Family News! said...

I have to say that she really does look SUPER awesome in these pics!!!! Continued prayers for you all....

Anonymous said...

We're still praying out here. I hope she can continue to grow and get past this obstacle that she has. She's such a miracle. It's amazing to think that she is still so tiny, but still fighting so hard. I'll be praying that she grows fast and furious and eases her parents' worries.

Jennifer said...

She looks awesome!! Her coloring is good and she is looking so much bigger......I want to squeeze her chubby cheeks! I think I'm starting to see a little of Amy in her. Who does you and your family think she looks like? You should post baby pictures of you and Amy to compare. Just a thought :)

Anonymous said...

What great news that she is over 5 lbs... I continue to pray for kayleigh that she gets better very soon and can be home with her family!
Katie
Baltimore, MD

Lindsay Dean said...

Awesome is right on! She looks great! We will be praying for lower pulminary pressures and for no infections to fester. Love to you all!
Suzie Dean.....Lindsay's Mommy

Lindsay Dean said...

Awesome is right on! She looks great! We will be praying for lower pulminary pressures and for no infections to fester. Love to you all!
Suzie Dean.....Lindsay's Mommy

Mel said...

Miss Kayleigh looks FABULOUS!!! Her little cheeks are filling out and I love cheeks on babies!
Continuing to pray in OK!

Colleen Gebhardt said...

I had no idea that you were going to be on the radio, but I heard it!! At first I caught the story in the middle, and I thought of you guys, not knowing it was you until I heard her name. You posted a comment on my blog about looking for prayer warriors. I have been praying for Kayleigh and following her story for a loooong time. I just don't think I ever left a comment. I think it's so sweet that the Daddy is the one doing the blogging. I am a fellow Elevator, and mother of 2. I don't know you guys, but I think your awesome, and I think Kayleigh has made leaps and bounds, and is progressing in a way that you have to KNOW that God has his hands on her, and he is revealing himself to your family, and to all of us through Kayleigh. Oh yeah-and Kayleigh is awesome, of course. I'm sure it frustrates you, but I love her little attitude. It tickles me. Maybe we will meet one day at church. I'm sure I will take care of Kayleigh in e-kidz one day. I'm looking forward to it. Take care, and blessings to your family.

JenB said...

Nice to "meet" you! I've been reading up on your little Kayleigh. I'll definitely pray! I'm in Clt too, so maybe we'll really meet one day!

Anonymous said...

Kayleigh looks awesome! Your family is in my prayers. I hope you have a wonderful Holiday season.

bri said...

Wow, congratulations on the weight gain Kayleigh... way to go honey! You look absolutely amazing. You are getting so big and so alert. I am enjoying getting to know you and stand in prayer and petition for your sweet life. I will continue praying for you and asking God to let you come home and live a full life with your mommy and daddy and brother and sister. They are doing so well and love you so much.

Blessings!

Anonymous said...

YAAAA KAYLEIGH!! I am so happy you are gaining weight! You look amazing in your pictures! Kisses to you and to your Mommy and Daddy! Keep on growing and feeling better so you can go home! :)
Marge bbc sept 08

Sarah said...

yay!

Happy Birthday Adam btw!

Oh yes and I have another encouraging story for you. . . when I went into preterm labor some friends of mine called me- they are twins and were born at 32 weeks 21 years ago. one was almost 5 pounds and the other was 3. The 3 pounder was in the NICU for a long time and had a lot of digestive track problems- but eventually they both made it home and are now lovely grown up ladies who beat the odds 21 years ago. So when I was dealing with preterm labor they called to say "Hey we were born early and we turned out just fine so no worries!"

:-)

caryn said...

I just read Aimee's post on her Facebook page, we are all praying for you. Kayleigh has proven them wrong before we are praying she does it again.
Caryn