In Gainsville for Transplant

So where do I start? Umm Lets go back two days. We were going to do a proceedure to tell weather we were going to have surgery or a transplant. They came in on Tuesday and said that they did not want to do the procedure becuase it involed putting her to sleep and they were worried she would not come out of it. So the plan became on Tuesday to move to Gainsville on Wednesday. We were then told that night that they already have 5 kids waiting for hearts in Gainsville, that our chances of getting a heart any time soon would not be large, and that we could start up the paper work and labs in Jax and stay there till a heart arrived unless her situation got worse. Well that night that is exactly what happen. She kept destating all night. Then at 6am I fed her a bottle and she destated only this time we could not get her to recover.
This is when all the craziness began. The room quickly became full of doctors, nurse's, and surgeons, trying to figure out what would be the best plan. At one point we were doing surgery, the next moving to gainsville. They finally got her somewhat stable by 10am after going back and forth for 4 hours.
They wanted to go by helicpoter because they wanted her to get there as quickly as possilbe. Of course we were have a huge strom with tornado watches. They did not want to wait till the next day to transport. The doctor on the floor called in the on call doctor and he dedided he was going to leave and take the ride with Grace in the abulance with the parimedics in case anything happen along the way.
Thank god, she made it fine to Gainsville. I was not allowed to ride in the back with her. So I decided to follow in my car so I would have transportation. I stopped home first to give Emily a kiss and hug. Then off to Gainsville. When I arrived Grace had already been there for two hours. She was still not stable, so they made me wait another hour before they came to get me.
The into the confrence room we went. Our conversation was about the transplants. They expressed how they do do mechincal hearts here, but it was not a option for Grace. Disappointment one! They then went on to explain how critical she actually is. Also how they have so many kids here waiting for hearts. Graces blood type is a O, they also have two other kids here that are O and need the same size heart. They did say though it comes down alot to the antibodies that the kids have delevoped and that besides blood type and size, it doesn't matter how long a kid has been here if they look like they will fit the heart better than another they are the one that will get the heart. They did continue on also to say how alot of parnents don't always continue on when it comes to a transplant because, they don't want to deal with waiting for a heart, then the fact it may be rejected in the first few months. They have children that are in there 20's with the same heart. But if you go by the books the heart should last 5 to 10 years, and you can only get 2 hearts in your life. The parents can't bear to come back and go through this again so soon. There is also if the heart fails, when they bring her back it could cause serve brain damage.  They asked us the question, if her heart fails do they want us to resesatae her? I was shocked to hear this question? Give up now? We made that decsion at 6 months pregnet, that if we were going to do this we were going the whole way no matter what. I told them that thaat was not a option. We wanted everything possible to be done that could be done.
We put the breathing tube in today along with a few other proceedures, with the goal in mind to stablize her. These were all risky, but once again Grace, is amazing and desipte some small details came through with flying colors.
So know the hardest part. Obvesily she could turn at any point, and also there are other problems that can come when you wait in a bed unconsecces for a heart for months, but if we can get through this, we just need to pray for a heart.
Kirk and I gave blood and did our test's today, and the process has been started.
All we can ask is to pray! Pray! Pray! It is all a waiting game now.

One more Day till we know the out come

So one more day till we know the outcome. Grace will go in on Wednesday morning at 8a.m. to have her test done to check to see how much damage was done. In a normal baby this is a standard proceedure.. The doctors came in today to talk about the risks. Since her heart is so weak the is a high chance that her heart will fail through this procedure. When you put a baby under it changes there blood pressures and levels, this is something that her heart may not tolerate. It all hit me today. I have not cried at all. I relize what is going on it just seemed like it was a dream. How did we even get here? After they left today reality set in. I could lose my baby. I know she is stong and has the will to live. Along with everyones prayers. I just didn't relize how much the odds are against her. At this point they are leaning towards a transplant because her heart is not showing any improvement. The decsion will not be final till after the test on Wednesday. I feel helpless there is nothing I can do for her but love her.  I am asking everyone to please please pray for my baby. She needs all the help she can.

Heart Attack

On Thursday 3/24/2011 in early afternoon, I left to go to work for a few hours after spending a great morning with Grace. Kirk called in a panic to come home that the baby was white and been throwing up. I checked her levels when I got home and they were down. We drove her to the emergency room and she was admitted imendately. They told us that her heart was failing but could not explain why. They started tests imediately. By Firday night they had come to the conculsion, that Grace had a Heart attack Thursday afternoon.
We could not believe what they were telling us. I know that we were told that this could happen, but a baby, having a heart attack? We knew something was wrong but were shocked to hear this.
Grace is stable know. The worry know is to see how much damage was done to the heart during the heart attack. The heart is still very swollen at this point. Grace will have a cafe test done on Wednesday. The results from this test will hopefully give us a accurate number of how much damage has been done. At that point they will make the decsion weather to move foward with surgery early next week, or if there was to much damage done. Grace will be transported to Gainsville and put on a transplant waiting list.
We definately don't want to go the transplant way. We are praying that surgery will be able to be done, and will work. A transplant is very risky, besides the fact that she can only wait so long for a heart, and it is not easy to get a heart for a nine pound baby.
So please everyone pray that we will be able to move foward with surgery instead of a transplant. I will update soon to keep you all posted.

Heading back!

Sorry this image is a little blurry, but wanted to update you with my beatiful baby! She is doing well. She started simling alot in the past few weeks. She is really such a happy baby!

We went on Monday to see Doctor Lacy. Grace's oxygen level has dropped. We are not sure exactly why at this point. We are scheduled to have a test done on April 8, 2011 which will hopefully detrime this. After this test we will schedule for surgery some time in the next two to three weeks after. We are expecting to have at least two more surgery's anyway. I guess it was just a shock for it to be so soon. And I guess it is becuase they do not know why. They don't think that she has out grow it yet at this point. They are just unsure. After the 8th we will have more answers.

I know she will be fine. She is strong and such a little fighter. 

Will update soon.