April 1997

Tyler was born on Monday April 14th, 1997 at 5:29 pm. He was 8 pounds 14 ounces and 20.5 inches long (fortunately a large baby!). For the first hour or so, he demonstrated his powerful lung capability and his redhead attitude. He then began to get into his life. Looking around the room, checking his environment, and wanting food. At 5:30 am on Wednesday, Marilyn (the wonderful night nurse at the time) noticed his color was not as good as she would want. He was 36 hours old. She wheeled him down to the NICU (Neonatal Intensive Care Unit) and our problems began. At first they thought it might be an infection that was an issue, but could be treated with antibiotics. After an hour or so, that seemed to not be the case. The second thought was a blocked artery that could be repaired with a relatively straightforward surgery. They stabilized him, then transported him to Children's Hospital in San Diego. They were then able to run an echo-cardiogram on him to get a clear picture of his heart. Unfortunately, this showed that the artery was not blocked, he actually had no left ventricle (called a hypoplastic left heart). Our options at that time were:

• Do nothing and let him pass away.

• Perform a rather risky operation with a good quality of life if successful.

• Try for an infant heart transplant (if we could ever find one) with a fair to poor quality of life.

Since there was apparently no other organ damage in his body, we opted for choice two. The operation is called a Norwood Procedure. Several sites exist on the Internet describing this heart defect, as well as the Norwood Procedure. Some are:

• Left Heart Matters

• Kansas University

• Children's Health Care System

• University of Minnesota

The operation started at 10:00 am on Monday April 21st. It lasted 9 hours. It was performed by Dr. Rick Mainwaring at Children's. I cannot say enough nice things about this man. He spent three hours with us before the procedure explaining the entire process, what might go wrong, and what we could expect. He made us feel as comfortable as he could. Once Tyler was wheeled back, the waiting began. The worst period was supposed to be the 12 hours after the procedure. Both Dr. Mainwaring and our Neonatologist, Dr. Dudell, stayed by the bed all night monitoring his progress. Dr. Dudell has also proven to be a tremendous person, as well as all of the Neonatal ICU nursing staff. One very special nurse has been Beth. She has shown great knowledge and patience with both Tyler and us. He has had a few small setbacks, just enough to keep us worrying, but his recovery has been very good. One setback was a narrowing of the distal aorta. He will be having a small operation (small is relative I guess) in about 4 weeks. This is a balloon angioplasty to enlarge this part of his aorta.

Currently, Tyler is doing very well. I am writing this on Thursday May 8th. There is a good chance that he will be able to come home before Mothers Day on Sunday! What a great present that will be for Donna and myself. He is eating well and breathing on his own.

He will be on several oral medications that Donna and I will need to administer over the next few months. Assuming all continues to go well, he will have the second procedure at age 5-6 months.