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.

Janurary 28, 2011

So we left and went home on Janurary 11, 2011. I was so excited yet scared to death. It took a few days, but we adjusted wonderfully! She had a few appiontments in the last 2 weeks, all showing her heart as doing wonderful. We were having a slight problem with eating, but with persistance and we know we could over come it.
My 4 year old Emily came down with a cough, to her it is not a big deal, in a 6 week old with a low immune system and half a heart this is a huge deal. Grace started to develop a cough on Monday the 24th after we were just at the heart doctor. By tuesday we were starting to worry. By wednesday morning I took her to the doctor. The doctor sent us to Flager hospital for a rsv test. The results came back that afternoon negitive. Thursday morning the cough became even worse. I drove her up to Wolsons Children Hospital Thursday, they rushed her into the emergency room once they checked her stats, they then brought her up to the ICU. Today it is Firday night and we are still in the ICU but grace looks great. We are hoping if her stats stay the same we will move to the 6th floor tomorrow with a hopefully discharge sunday or monday.
What a reality check. She can go from so strong one day to the ICu the next. Her heart is very fragial even though it is doing well. Until all 3 surgeries are completed we need to be on toes and relize that things can change at any moment.
Cerish every moment things can change in a second!

23 Days Old

Grace is doing wonderful! Sorry for the delay on new posts. We have been busy with tests and recovering! She is doing wonderful. We moved to the 6th floor, out of ICU on Monday. We are way ahead of schedule. She also started feeds on Monday. She is doing ok with it. We are definately going to get out of here ahead of schedule. She has been through so much in the last 3 weeks, but is definately a fighter!! I will update later this week. Thank you for thinking of us!

Picture of Grace at 3 weeks

Grace at 21/2 weeks