Ashley was born with a coarchtation, which means her arch was narrow at the top. In addition, her arch came off the wrong side of the heart. In the first surgery, they opened up the aorta, and grafted in material, making the archway a little larger. She still suffers from a narrow arch today, but was never strong enough to attempt another repair.
Ashley also had a large VSD, ventricular septal defect, or hole between her ventricles. In her heart, her ventricles are in reverse position. Her right ventricle is on the left side and the left ventricle is on the right side. The left ventricle, on the right side, was hypoplastic, meaning it was underdeveloped and small.
She also had a small mitral valve. That valve became a big problem in this surgery, as did the small ventricle. She also had a transposition of the great vessels. That means the two major vessels that carry blood away from the heart, the aorta and the pulmonary artery, are switched or transposed. Thus, her lungs would be in danger of flooding with blood. That is where the pulmonary banding came into play. They placed the band to restrict blood flow to the lungs.
Additionally, Ashley had an interrupted inferior vena cava. The blood from the lower half of her body reached the heart, but through an intricate network of strange vessels. They still to this day, can't explain fully how her blood flows to her heart from the lower part of her body.
So given all this, the plan was to place a patch between the two ventricles. The surgeon did not want to fix the transposition of the great vessels, but would leave them like the were. I can't recall now why that was not attempted. But I still remember how worried the surgeon was going in to this surgery. With Ashley's strange blood flow and small ventricle and mitral valve, he had no idea if creating a four-chambered heart would even work. He told us he would do his best to follow the plan. We all prayed for days for this wonderful surgeon. I trusted him with all my heart to do what was best for our little angel.
The surgery began, and there was a nurse that came back and forth between the OR and the waiting room to keep us informed. Things seemed to be going well, and then all of the sudden, the nurse came into the waiting room and took all of us to a separate room, where we were told after the patch was placed, and Ashley was weaned off the bypass machine, she had crashed on them. Her blood would not flow across the mitral valve and into the ventricle below. We were told Ashley would most likely never come out of the operating room alive. I remember crying and crying, Jason holding me. We were all in tears, and not a word was spoken. But everyone prayed! We prayed like we have never prayed before. But you know, I didn't ask for Ashley's life to be spared. I knew at that point, her life was in Heavenly Father's hands. I prayed that no matter what happened, we would be able to accept His will for our daughter.
Not more than an hour after we had such dark news, our wonderful cardiologist came into the room. When she heard how scary things were in the OR, she scrubbed up and went into the room to be with Ashley. She even had a broken ankle at the time and was on crutches! We so love Dr. Etheridge. She has always, and continues to this day, to go above and beyond for our angel. It was not an accident so many years ago, we were given her as our cardiologist.
Anyway, she came into the room and told us, "I don't know what you are doing in this room, but whatever it is, it is working." She told us the surgeon had torn off the patch, and had performed a Glenn procedure on Ashley. The Glenn procedure is when they take the superior vena cava and sew it directly into the pulmonary artery. Thus, the blood, from the top half of the body, can bypass the heart and go directly to the lungs. The procedure is normally done when one of the two ventricles cannot pump blood effectively, as was the case with Ashley. Her blood was able to bypass her little ventricle. Her other ventricle then became the ventricle that pumped blood around her body. In addition, a hole was created between the atriums.
More than 10 hours after her surgery began, she was taken out of the OR. But, she started bleeding through one of her chest tubes and had to be taken back into surgery. They stopped the bleeding, thankfully, and two more painful and long hours following, we were finally taken into the pediatric intensive care unit to see her. She looked awful!! I remember not even recognizing her! Her face was horribly swollen from all the fluids given during surgery. Because her heart was so big following surgery, they were unable to close her chest. She had a huge dressing across her entire chest. And of course, tubes everywhere! Neck line, art-line, IV's, catheter, ventilator, internal pacing wires, four chest tubes, tube in the nose to keep the stomach drained.......it went on and on. They kept her paralyzed, because her chest was open, so she couldn't move or blink or anything. But she was alive! At least for one more day, and we couldn't have been more grateful!
Ok, more to come! I am so tired right now and Ashley needs me! Have a good night!
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