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 :)
The Freemans :)