Gabe is our first and only child. He was born October 19, 2000. We weren't expecting him until Nov. 13! He surprised us one beautiful fall morning. Though he was nearly a month early, he weighed 7 lbs. 5 oz. We chose not to find out Gabe's gender before he was born, but I had been convinced throughout my pregnancy that we were having a girl; I was shocked to hear, "It's a boy!" He was beautiful and perfect, with a full head of sandy brown hair. They detected a murmur shortly after he was born. I wasn't too worried; I have an "innocent" murmur that I never outgrew as does my mom. Gabe's doctor set up an appointment with a pediatric cardiologist for a couple weeks down the line, just to have things checked out. We live in a small town and there's really only one pediatric cardiologist that serves our whole area and he is two hours away from us.

Feeding Gabe was a struggle from the beginning. A good case of jaundice masked the true reason for his feeding difficulties. When he was two weeks old Gabe stopped eating altogether. I got this horrible feeling in the pit of my stomach. After a short visit our pediatrician sent us directly to the pediatric cardiologist two hours away.

Following his examination the cardiologist uttered a statement we will never forget: "Your son is in heart failure." I get shivers typing it. Gabe was diagnosed with a severe coarctation of the aorta and a ventricular septal defect. Down the line we learned of a few other defects, but this was enough for now.

Gabe was whisked to the NICU. We had arrived at the hospital with a beautiful, albeit slightly orange, little baby wrapped in a blue fleece snowflake blanket. The next time we saw him he had on nothing but a diaper, was on a vent, and had lines coming out from his legs and arms.

A few hours later a medical team from C.S. Mott Children's Hospital in Ann Arbor flew up to get us. Within an hour we were in Ann Arbor, nine hours from home. What a surreal day.

Our families came from out of state to be with us. After five days of stabilization, Gabe was ready for surgery. On November 8, Dr. Edward Bove repaired Gabe's coarc and patched his VSD and an ASD we hadn't known about. During his surgery, all the TV channels were consumed with the Florida election returns. It would be weeks before we actually had a president! We didn't care much; our newborn, only son was fighting for his life.

And what a fight he gave! He came out of surgery well (in spite of some substantial post-op bleeding). A week to the day after his surgery we were discharged home. We can't say enough about the staff at Mott and about the wonderful Ronald McDonald House in Ann Arbor. They, along with our incredibly supportive families, made sure that all our needs were met.

As we had been warned, Gabe became a new baby once we got home. He actually woke up during the night to be fed - no more setting the alarm! His muffled cries (hoarse from the vent) were the most wonderful sounds we had ever heard.

Now, Gabe is nearly six months old. He weighs 17 pounds. He has recovered beautifully, with no complications so far. However, as time has gone on and he has had a couple of follow-ups with our local pc, new problems have come into the picture. He has a couple of problematic valves that may need replacing. His coarc could recur. This has been one of the more difficult adjustments, I guess. We were led to (or did we just want to?) believe that once Gabe had his surgery he would be "fixed" and we could move on with our lives.

We realize more every day that he will never be "fixed." That he is a child with CHD. That we will never get over the worry that every cold may turn into a major respiratory event. That we will always panic when he has a day when he doesn't eat well. That each cough will always have us on pins and needles. That we will never stop checking on him many times during the night to make sure he is still breathing.

But we have come to accept Gabe for who he is. We believe he was meant to be the way that he is, and that we were chosen to be his parents. What an honor. We still wonder "why us?" But we thank God that Gabe's defects are as straight-forward as they are. Our hearts go out to all the parents and CHD children that have much tougher roads than we.

The heart problems are always at the forefront. But now, five months after his surgery, we are enjoying Gabe as a pretty "normal" baby. He is a joy and a delight. We now know a love we never knew existed. I think it's even a tad bit stronger because of the heart problems. Gabe is a bright, sweet, unique, blessed gift. And we are eternally grateful he was entrusted to our care.

Update (December 12, 2001)

Gabe turned one in October and is doing beautifully. He has grown well and is now walking! At our last pc visit in November he got an excellent report. His coarc, ASD, and VSD repairs are all holding well. No signs whatsoever of re-coarctation.

Since his surgeries as a newborn, two main areas of concern have remained: his bicuspid aortic valve and his stenotic mitral valve. His aortic valve has no insufficiency whatsoever, and his mitral valve still has only mild to moderate stenosis and appears to be growing with his body. His blood pressure (a concern for all coarctation kids) is only slightly elevated, and he is off ALL heart meds!

We will continue to see the pc every six months for echos mostly to monitor his mitral valve. Otherwise, Gabe has been very healthy and weighs almost 25 pounds. He is a bright, active, loving, amazing baby. We continue to feel blessed every day that he has come to be with us.