Reagan's Heart

This is where it became scary.

When the nurse was doing the post-birth exam, he noticed a murmur in the heart. We were not completely shocked by this, because Ann had heard a murmur during one her visits, using the ultrasound machine. She was concerned about it enough to insist that Jennifer get it checked out by a doctor immediately, which she did the very next day. They were able to hear it too, but they said it wasn't anything to be concerned about, lots of people have slight murmurs. We would have been a bit more concerned about it, but on subsequent ultrasound check-ups, they were no longer able to hear any murmur. So anyway, the nurse let us know that he would listen again after he bathed him, and did some more checks of his vital signs, after we had a little bit of family time alone with Reagan.

Reagan was taken to the nursery to get cleaned up and checked out more thoroughly, which gave us a chance to rest a little and eat a little. Again, we weren't very worried, since we knew that plenty of people live with heart murmurs without any noticeable difference in their lives, and based on the ultrasounds during the pregnancy, it seemed that it came and went. As the day went on, I was getting a bit more restless, because it seemed they were keeping him longer than I thought it should take to check him out, so I tracked down the nurse to see what was going on. He informed me that he had recommended that the neonatologist on staff at Gateway, from Vanderbilt Children's hospital, do an echocardiogram on Reagan, before clearing him. I was fine with this, never can be too careful you know, so I went back to our post-partum room. Shortly thereafter, the neonatologist came to see us to let us know what he had found. He let us know up front that he was not a cardiologist, so he was not an expert in this area, but he knew enough to be concerned about what he found, thus he called the cardiologists at Vanderbilt. He felt that Reagan, in addition to the murmur, had severe aortic stenosis. The doctors at Vandy concurred, so they were sending an ambulance to bring him down to the NICU at the children's hospital for further tests by experts in cardiology.

This is where I truly recognize God's intervention, and can't understand if anyone else doesn't. If we had gone through with the planned home birth, we would not have found out about his problems for who knows how long. If Jennifer had known her back spasms were actually contractions, she would have called Ann to come deliver the baby, rather than going to the ER, thinking they were just going to make us wait around before sending us home. I'm so thankful that Carlos, the nurse, insisted that the doctor do the echo on Reagan. I also feel truly blessed to live in a time and place that has such amazing medical technology to help us.

We stayed the night in Gateway, while they took our baby to Vandy, because Jennifer couldn't be medically released until the next morning. As soon as the doctor released her, we headed to Nashville. When we got to the children's hospital, we found our boy in the NICU. It was incredibly heart-wrenching to see him with so many wires and tubes on and in him. He was handling everything well though, and looked super sweet. almost as soon as we arrived, one of the residents in the NICU came to explain his situation.

They had done another echocardiogram when he had arrived and were able to confirm the doctor's conclusion. He did have aortic stenosis, along with a bicuspid aortic valve. They were also trying to rule out a coarctation of the aorta, but could not do so until his PDA valve closed up more significantly. The PDA is a valve that is used in utero and closes within a few days after birth. A coarctation is simply a dimple in the aorta which narrows the artery, limiting bloodflow to the body. The stenosis is a narrowing of the artery just past the valve opening from the left chamber of the heart, but Reagan's stenosis is a little worse than the average one because the artery is also thicker than it should be. The bicuspid valve isn't very serious, many people have them into adulthood without ever knowing about it. The bicuspid valve just means that he only has 2 leaflets operating the valve, rather than the usual 3, thus making it impossible for the valve to open and close all the way, which creates the "murmur". Both the potential coarctation and the stenosis would need surgical correction to be fixed, and very soon, and they were assuming if he were going to have surgery, they would take care of the bicuspid valve as well, since they'd already be in there. The surgical plan would all depend on whether there actually was a coarctation or not, and that could not be done until the PDA closed enough to see the aorta clearly, on an echocardiogram.

They were finally able to determine that there was no coarctation, so they could develop their treatment plan now. When the possible coarctation was in play, they had talked about doing surgery within the first couple of weeks, but when they ruled that out, they had a simpler and more expedited plan. They decided the best way to attack the problem would be to use a catheter, going through a return vein from the leg to the heart, and inflate a small balloon in the narrowed part of the aorta. This would serve 2 purposes. The first was to expand the aorta at the narrowing, allowing for more bloodflow. The second purpose was the part that had the higher risk. By inflating the aorta so close to the valve opening they could create a controlled tear of the bicuspid valve, which would allow it to be opened a little bit more. It still wouldn't close all the way, but it would help to keep the blood from backflowing into the left chamber of the heart. They had to be extremely careful throughout the whole procedure because the catheter was actually larger than the vein it would be going through, risking rupture, and if they picked the wrong size balloon to expand in the aorta, it would cause extreme blood leakage in the heart. The doctor who would be doing the procedure went over all of the risk/reward info with us, and we agreed that it was the best plan. Doing a full-fledged surgery would be much riskier considering Reagan's age and size, so even though it's most likely going to come down to a surgery anyway, we felt it was better to wait on that if at all possible. The doctor then knelt in prayer with us in Reagan's room, which was very much appreciated.

The procedure ended up taking a little over 2 hours and was a complete success. The next hurdle to overcome would be to get him to the point where he could feed from the breast milk that Jennifer had been so dutifully pumping. First he had to recover enough from the operation to have the breathing tube removed from his throat, which happened Friday morning. Next they needed to do another echo on him to be sure the PDA valve had closed enough to not risk infection to his intestines. That was done Friday evening. So finally he was ready to take a bit of milk from his mama. I, unfortunately, had to leave Friday night before the feeding, but Jennifer was able to be there for it.

He is making very good progress Jennifer tells me. They were able to take the UVC and AVC lines out of his belly earlier today, which were keeping us from being able to pick him up and hold him. Jennifer is now getting to hold him and breastfeed him finally, and if everything continues to go well, he's on track to come home early next week.

I can only thank our Heavenly Father for so many blessings, and thank all of our wonderful family and friends for the outpouring of blessings and encouragement. We love you all and appreciate you so much.