Arriving in Charleston

Lilly and me arrived in Charleston Tuesday night around 10 o'clock. Charlie and his mom soon followed and arrived around 11. When we got to the hospital, the nurses took Lilly to PCICU and set up everything. PCICU is an intensive care unit for children with heart problems. In the meantime, Charlie and I, along with friends and family waited until we were able to go back and see her. When we were able to me and Charlie rushed back to see her. She was bundled up in one of her favorite blankets with her pacifier in her mouth looking very content. The nurses took blood for a genetics test and other blood work. All levels came back within normal ranges, but we will not receive the genetics test for about 2 weeks. When the doctor came to see us the same night, he explained that Lilly has something called Truncus Arteriosus or that is what he first thought by looking at the echo cardiogram. He also said that a lot of times it is genetic or may be caused randomly.

My cousin Beth gave me a handout of what Truncus Arteriosus is so I'll give you a simple, brief explanation. When a baby is developing in the womb, his or her heart begins as one large blood vessel and eventually separates into two, the aorta and the pulmonary artery. In Lilly's case, this did not happen, therefore, she was born with a common arterial trunk. Since she does not have a separate aorta and pulmonary artery, her oxygenated and deoxygenated blood mixes. This is where it gets confusing so try to follow. The aorta should carry oxygenated blood from the heart to the body and the pulmonary artery should carry deoxygenated blood to the lungs. The one large artery is mixing both types of blood and using only one single valve. So instead of having 4 valves like you and me, Lilly only has 3. With this her aorta also goes to the right instead of the left like our hearts, but this is not a problem that they are worried about. In conjunction with the shared trunk, a part of the wall between the left and right ventricles is missing (a hole in her heart). The hole is what enables the one artery to receive both oxygenated and deoxygenated blood. Because the blood is mixing, her oxygen levels decrease. Lilly's main problem is that she has more blood being pumped to her lungs than to her body. In order to partially fix this problem before surgery and to keep fluid off of her lungs, she was given a small dosage of Lasix, which helps in fluid retention. I have also read that there are three types of Truncus Arteriosus, but I yet to know which type Lilly has. After a long night, we left Lilly and tried to get some sleep. I think this was the hardest night because it was one of the firsts for me when Lilly was not by my side and I did not get up to feed her. The one thing that helped me through this was knowing that God would give me the strength and we would see her in the morning. So although Lilly may have a hole in her heart, there is much love that is being poured in to fill the gaps.