Ethan's "heart" story - this is long!

Ethan was born on Sept 28, 2005 and weighed 9lb. 0oz. The delivery went great and we praised God for giving us another healthy baby. Ethan's pediatrician heard a heart murmur, but told us that that was pretty common and that she would monitor it. Ethan had no other signs that would suggest that anything more serious was going on. We took him home and thought all was well.

When Ethan was 6 days old, I woke him up around 4pm to feed him and he was pretty fussy and didn't want to eat. I tried to calm him down, but nothing was working and then I realized that he was breathing very rapidly. I knew that newborns commonly have irregular breathing, and I didn't want to be a paranoid mom, but I knew something was wrong. I called and talked to the pediatric nurse, told her Ethan was taking 15 breaths in 10 seconds and she told me to take him to Urgent Care at Children's Mercy South, that maybe he had a cold or something.

All five of us piled into the van. The trip to urgent care was pretty scary. Ethan started looking very pale and acted like he was struggling to breath. The nurse at the check-in desk listened to Ethan right away and they immediately took us all back. They kept moving us to different exam rooms until finally we were in a huge room. The doctor was asking me question after question, trying to figure out what was going on. The room filled up with so many people and we were asked to move to an "observation" room, where we were out of the way and could not hear what was going on, but could see everything. That was pretty terrifying. Every couple of minutes, a nurse would come and explain what was going on. She told us to call someone to come and pick Abigail and Isaac up.

Ethan was put on a ventilator because it was just too much for his little body to breath on its own. The doctor did all sorts of tests and came and told us that he suspected that something was wrong with Ethan's heart and that he needed to be transferred to the PICU (pediatric intensive care unit) at Children's Mercy Hospital downtown. The transport team came to take Ethan downtown. They put him in an incubator, still on the ventilator. They told us that we coudn't come in the ambulance with him and they also told us not to try and follow them because they would be going fast with all lights and sirens. They let us touch him before they left. It was all so unreal, standing there, watching the ambulance all lit up and sirens blaring, taking our little boy with them. The nurses who showed Brice and I the way out were crying - I am pretty sure they thought that Ethan wouldn't live. He was so sick.

Ethan arrived at the PICU code blue. A chaplain met Brice and I in the waiting room. She told us that the hospital had paged her. We didn't want to talk to her, we just wanted to know what was going on with Ethan. It seemed like we waited forever by the time the cardiologist came out to talk to us. It was about 11pm. He sat down and the first thing he said was that Ethan had been born with a serious heart defect. How do you respond to something like that? He had done an echocardiogram and it showed that the left side of Ethan's heart was small and underdeveloped. The defect was called Hypoplastic Left Heart Syndrome. He explained that this defect is not correctable and that a series of 3 surgeries would be needed to re-route the flow of blood through the right side, leaving the left side unused. We were in shock.

He took us back into the PICU to see Ethan. He had his own room and was laying in a little bed with machines all around him and tubes everywhere. We just sat there, looking at him. The attending doctor came by and asked us if we understood the seriousness of Ethan's condition and we told him that we did. It is an understatment to say that that was a long night.

The next morning, the cardiologist told us that they might have some better news about Ethan's diagnosis, but that they were still looking at additional test results and that he would come by later in the day. That gave us some hope.

We talked to the cardiologist again that afternoon and he explained that after studying Ethan's echo results some more and and doing what he called "fancy math", they had changed Ethan's diagnosis to Coarctation of the Aorta (narrow aortic artery), along with aortic valve stenosis, mitral valve stenosis, and a VSD (hole in the heart). This was a drastic change in diagnosis and much more positive in the long run for Ethan because this was a fixable defect. Praise God!

So, when Ethan was 13 days old, he had open heart surgery. The surgeon slit open Ethan's aortic artery and sewed in a human tissue "patch" in order to widen it and allow blood to flow through it. The surgery went well and Ethan came through it with flying colors. The next several days were challenging, but Ethan did well. He was weaned off of the ventilator and all the meds. It was very difficult to see him in pain. He caught back on to eating pretty quickly. And amazingly, we took him home 5 days after surgery! I cried the whole way home because there was a point where I didn't think that we would ever be able to bring him home again. The doctors and nurses told us several times how fortunate Ethan was to have such observant parents because just a few more hours and he would have died from heart failure. Ethan is a living example of God's grace in our lives.

Ethan's first year was pretty up and down. When he was two months old, he had to have his first heart catheterization and balloon to re-widen his aortic artery. At five months, his aortic artery re-narrowed again and he had to have his second heart cath and balloon. He has remained pretty stable since then, but over the last few months, his blood pressure has been creeping up and this is the main reason that his cardiologist wants Ethan to have this third heart cath. The main purpose of this cath is to get pictures of his heart.