What we found out at Children's Mercy.

As soon as we got to Ema's bedside at the Children's Mercy NICU, we were given a wealth of information about her condition. Everyday we learn a little bit more about what's affecting her. I will try to explain what is going on as best as I can so everyone can understand.

Em's Congenital Heart Defect (CHD) is a particular type known as an Interrupted Aortic Arch (IAA). The aorta is the big artery coming out of the left ventricle (one of the four chambers of the heart), and it is responsible for carrying oxygen rich blood to the body. The aorta has three branches before going down to supply the lower part of the body with blood. Those three branches are located on an arch as the aorta begins to head downward. Below is a picture of a normally formed heart (left) compared to an IAA heart (right).

One question that we had initially was why didn't anyone notice Ema's special heart sooner than Saturday night when we took her to the ER? The answer to that is is kind of complicated, at least to those who are familiar with the anatomy of an adult heart. Below is a diagram of a fetal heart.

The area that is labeled "ductus arteriosus" is present in fetal babies, but if you refer back to the previous image, it is absent in normally formed adult hearts. A few days after a baby is born, the ductus arteriosus closes and normal aorta function continues. With Ema, the ductus arteriosus is the only thing supplying blood to the lower parts of her body. As with normal babies, that ductus closed a few days after birth, which was some time Saturday evening when we got her home. Before that, her heart problems were undetectable.

Right now, Ema is on medication that keeps the ductus arteriosus open. Every other problem Ema is experiencing right now is stemming from the period of time when the ductus was closed. Each of her IVs contains medications to remedy and normalize all of her bodily chemicals and blood gas levels.

Another defect with Ema's heart is the "hole" that the cardiologists told us about in Wichita. They explained the hole to us a little bit more thoroughly in Kansas City. Again, if you look back up to the first image, you'll notice that in between the  right ventricle (RV) and left ventricle (LV), there is a wall, called the ventricular septum. That is where Ema's hole is. Her heart looks a lot like the image below.

In Ema's heart, that septum has a pretty large hole in it. Right now, this is kind of a good thing, actually. The area of blue in the diagram is blood that doesn't have oxygen in it, because it just entered the heart after passing through the body. The red area is blood that has just come back from the lungs, so it's nice and full of oxygen. Because the blood that is going to Ema's lower half is coming out of the pulmonary artery, the only way it gets oxygenated blood is when it passes through the hole in her ventricular septum. However, when the doctors do surgery, they will need to patch this up.

Doctors are keeping her healthy and allowing her to recover until she is strong enough for surgery. At the same time, doctors are also trying to screen to figure out exactly what caused the heart defect. We should have a pretty good idea this Friday what we can expect of the next several weeks. We do know that Ema will be in Kansas City for at least 4-6 weeks.

I should leave you with some happier news. When we left the hospital last night, Ema's eyes were open ans she was wiggling around quite a bit. She grabbed my finger and held it for several minutes. This was the first time we had seen our little girl's eyes since Saturday, so it was very nice for us.