Monday, November 13, 2006

April 12, 2005 I received the surprise of my life. At nearly 40 years old, I was expecting a baby. Now, I already have had 5, so you'd think I would recognize the signs! But, my husband Tim and I were just totally shocked by this news.
Because our older son had CHD and my advanced maternal age, I was sent for a level 2 ultrasound. I had prepared myself for something chromosomal, like Down's Syndrome. I just had that gut feeling. Even though we had an older son born with complex heart defects, we never dreamed we would receive that news again. We were told that his CHD was "spontaneous".
As I was watching my unborn baby on the screen, I sensed the change in the air. It was taking a long time. Tim went out to sit in the waiting area. The tech came back and took some more pictures. I could see that little heart. It looked different. I had been through these ultrasounds with three other children with healthy hearts. And then I knew...
The tech asked if I wanted her to find Tim. I told her no. I wanted to protect him, I guess.
The doctor came in and told me that my baby boy had several heart defects, among other things. He talked about chromosomal problems and advised termination, then asked to at least do an amniocentesis. I agreed to do that so we could know exactly what to expect.
Tim and I sat in the parking lot and cried like babies. Transposition of the great arteries, ASD, VSD, Pulmonary stenosis, possibly others. Other problems were also seen.
We cried out to God and our church family. They held us up every step of the way. (And continue to do so!)
We returned a week later and learned that the FISH amnio results were normal. We met the cardiologist and had a fetal echo. His diagnosis was Loop or corrected transposition of the great arteries, ASD, VSD, Pulmonary stenosis, Coarctation of the aorta.
That diagnosis changed over the weeks. It was a real roller coaster ride. The full amnio results were normal. We rejoiced that we were looking at *just* heart defects.
December 6, 2005, Elijah entered the world, pink and screaming. He was rushed to NICU for a PICC line. He left the hospital 4 days later without needing any assistance. He was held up for two days because of rising bilirubin levels.
His official diagnosis at birth was Corrected transposition of the great arteries, Double outlet right ventricle, ASD, VSD, PS w/sub PS, Hypoplastic right ventricle.
His ventricles were switched, both main arteries appeared to come from one ventricle, a hole between the ventricles, a hold between the atrial chambers, a smaller than normal pulmonary valve with blockage below the valve, and a smaller than normal right ventricle (on the left side).
Eli later developed tachycardia problems. That is now controlled by medicine.
His first surgery was scheduled for May 2006. The plan was to close the VSD, and repair the sub pulmonary stenosis. At his pre-surgery echo, we discovered that the VSD had closed on its own. This totally changed his diagnosis!
His new diagnosis: L-TGA, ASD, Sub PS, HRV. Doctors could now see that the VSD and the positioning of Eli's main arteries made for a tough diagnosis. The Double outlet was not a double outlet after all and his PS/subPS was listed as mild.
Eli's surgery was canceled. He sees his cardiologist every 3 months now.
We do not know what the future holds for Eli. All we can do now is wait and watch. EKGs and echocardiograms are normal and always will be for him.
Someone recently asked me if I could even remember what life was like before Eli. I guess I could if I tried...but I really don't want to!
Eli was perfectly, wonderfully made by the Creator. In HIS eyes, Eli is perfect!

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