What is Chloe's heart condition?

  What exactly is wrong with Chloe's heart? 4 things actually. Her heart condition is called Tetrology of Fallot with Pulmonary Atresia. 
  We had no idea about her having a heart problem until she was born. The pregnancy was very healthy but when she was born, she was very very blue. Instead of getting immediate skin to skin like the hospital promised, my baby was taken away to the little bed in the same room. More and more nurses and doctors rushed in to try to help her. I kept asking if she was ok and nobody answered me. Finally a nurse said, "were just trying to pink her up a bit." Later, my mom told me that she was looking at Chloe's oxygen saturations and they were so low and not picking up at all. Chloe was then rushed to the NICU and I was left with no answers. I wasn't even sure if she was going to survive. Hours later Kody and I were finally able to see her. I couldn't even see her really though, there were so many wires, monitors, and she was so swollen she couldn't open her eyes. Later that day we met with the head of cardiology of two different hospitals. We were given a choice of which hospital to have her transferred to. They explained to us exactly what was wrong with Chloe. I never fully understood until a couple months later because it is a very complex condition with long words. 
  So what is Tetrology of Fallot with Pulmonary Atresia?

This is a really good video that helped me better understand Chloe. The only difference is Chloe has Pulmonary Atresia instead of stenosis. This means she has a complete blockage instead of it being very thick. Right now Chloe has the BT shunt along with two stents as described in the video. Now we are waiting on her full repair. 
  The reason we want her to have her repair so badly is because the temporary fix isn't enough. With the BT shunt, Chloe is not allowed to cry. When she cries, everything tenses up and there is no blood flowing though that shunt. Try not letting a baby cry! Her normal oxygen saturations are 75%-85% with these temporary fixes, even lower when she cries or is sick. A normal persons oxygen saturations should be 99%-100%. After Chloe's full repair, even when she cries, her saturations will be as a normal persons. We will be able to live life a bit more normally. After her repair we can turn in our pulse ox machine and oxygen to the DME company. Until then, she is very high risk. We were given this by our hospital.

I hope this answered some questions about TOF (Tetrology of Fallot) and you can understand Chloe a little bit better. 

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