10/23/08 - 4 Months Old!!!


Happy 4 Month Birthday Kayleigh!!!

Well, the cardiac catheter surgery is back on and it is at 7:00am tomorrow (10/24), and sorry for you early risers, but I have not seen 7:00am since we drove all through the night to Ohio for the family reunion trip. Aimee and I are night owls, so we never go to bed before 2:00am, but I think we might be going to force ourselves to go to bed early tonight. We have to be at the hospital for 6:00 - 6:30.

The reason the doctors wanted to do the catheter tomorrow is for the sole purpose of not waiting any longer incase the pressures are reactive. Meaning...If the pressures in the lungs are reactive and can be lowered by closing the VSD, then Kayleigh will soon get the pulmonary band or the complete closing of the VSD surgery done. They don't want to wait any longer incase the blood vessels in the lungs cap off which will then close the window of opportunity to bring the lung pressures down, which will then make her condition inoperable.

The cardiologist said that worst case scenario is Kayleigh's lung pressures will not come down and she will have a short termed life, maybe in to her teens and possibly in to her 20's. It would be considered pulmonary hypertension, but it is a complete different situation when a preemie has it compared to a normal gestational aged baby. Since Kayleigh was forced to grow earlier than normal, blood vessels seem to struggle the most. The eye surgery was for the same reason, the blood vessels didn't grow correctly and this is the same situation with the lungs. Let's just pray that the pressures are REACTIVE, so they can do something about it and we can recover, fix the VSD, recover again, pack up and then go home!

Today, Aimee and I were filmed at Kayleigh's bedside for a program that is going to air on Thanksgiving. It is a program to raise money for the Children's Miracle Network at Levine Children's Hospital . Right after the taping, one of the largest radio stations (Lite 102.9) in Charlotte came in and we recorded a program for a radiothon which happens here in Charlotte every year around December. For both programs, we were able to talk about Kayleigh and her amazing story. Out of all the hard work to share our story and touch someones life in a way that can give them hope or change their outlook on life, we have been completely blessed to do just that. My goal has been to save a life, but maybe it should be to "save one more life". That way, I will never reach my goal, but I will always be satisfied with the effort I have put for forth.

For those who remembered my post about the molar pregnancy and the doctors who did a skin biopsy on Kayleigh to see if that was the case. Well, we got the results back and it was in fact NOT a molar pregnancy. The results from the further testing on the placenta have not come back yet, so maybe they will find some answers in that.

Kayleigh is on a role with her weight gain though. She gained another 30 grams last night, which puts her at 1745 grams = (3lbs - 13.6oz). We need to keep that up! She has been feeding much better since they put her on "feed on demand". She took 50 mls just a little while ago and she was feeding again when we just called up there. They are also doing some blood work to get ready for the procedure tomorrow.

I am starting get nervous as the hours go on, so please pray for Kayleigh tomorrow that her procedure goes well and she recovers quick. They will put her back in the NICU until she recovers to go back to NPCN. I will be sure to update you earlier tomorrow evening when we return home. I will try not to make it as late as normal.

Thank you all for your support and please say a lot of prayers for us. We know they work and we need your help :)

God Bless,

The Freemans :)

7 comments:

Dawn said...

I love all the pictures. My Katie was 3 lbs 14 oz when she was born. She went home at 4 lbs 4 oz. We feel like a part of your family and check on you guys every night. Sending lots of prayers your way!!!

Anthony's Mommy said...

Good luck with the surgery tomorrow! I know Kayleigh will do great!

I have to ask. Anthony had 3 VSD's and he never needed surgery. But they were all small. Is Kayleighs large? Where is it located in her heart?

Kim

ERICA said...

God Bless You Kayleigh in your surgery tomorrow!! Continue to stay strong as you always have!!

God Bless you Aimee and Adam with strength!!

Erica
Mommy to 2 boys
1 who was a 31 weeker!!

Amber A said...

Saying extra prayers for Kayleigh tonight. I hope everything goes well with her surgery tomorrow.

Babyksmom05@yahoo.com

Adam and Aimee Freeman said...

Kim,

The hole has always been called a moderate size, but that is pretty significant considering Kayleigh's size. It is in the lower chambers of her heart.

The wild thing about all this, is if she didn't have the VSD, the high lung pressure could cause a lot of problems for Kayleigh. With out the hole there, the pressure would be too high considering the pressure is already at a high level. The hole is causing blood to flow through to both sides, so if the pressure is off, one side could get too much oxygenated blood or visa versa, not enough.

Right now, she is getting an equal amount causing her to be in a stable situation. Once the pressures change, they don't know what is going to happen so that is why they are doing the catheter to test whether or not, it reactive or fixed pressures. The cool thing about all this, is I am getting a hell of an education :)

Please pray that it is Reactive, so they can fix the VSD soon after and we can be done with all of this.

Thanks and God Bless,

Adam Freeman

Sarah said...

i hope all is going well with kayleighs surgery.

sending hugs and prayers to you all the way from methven, new zealand.

love
Sarah

GiGi said...

Please God help guide the hands of the surgeons and help Kayleigh to recover quickley.
She is doing your will and with the love of her family and the love of God she is sure to be a shining light. Help her to be a soldier of faith here on earth for many many years. AMEN