Tiny Eddie

One Month Old

Growing for Surgery

The Night before Heart Surgery

Hours after Heart Surgery

Coming Home

Shortly after coming home, with his big sister

August, 2007

November, 2007

January, 2008

Lil' Eddie was born 11 week early and weighed 3lbs 5.1oz and was 15.5 inches long. Shortly after birth we where told he had a heart murmur and would have a routine echocardiogram done. Later we where told that he had a coarctation of the aorta, and a couple holes in his heart. He would require open heart surgery they told us.

While Eddie was in the NICU genetic testing was done. Two very rare genetic abnormalities where found which put up a red flag for heart surgery. Genetic doctors said he would not live a normal life and that he would never recover from heart surgery. By request of the heart surgeons he would have to weight 3000 grams before they would do anything. While Eddie stayed in the NICU to grow, he was given drugs so that is PDA would stay open and the blood would bypass his coarctation. Babies don't survive to long this way they told us, but Eddie kept on going. After what seems like an eternity he was finally transferred to Atlanta, Ga on April 8th, 2007. While in Atlanta a genetic counselor tried to convince us for 5 days not to have heart surgery and offered comfort care. She said our son would not survive his heart surgery and he would not come off the ventilator. We stood our ground, and a surgeon finally agreed to do surgery. On April 13th they did coarctation repair and placed a pulmonary artery band. The VSD's would be left lone to see if they would close on there own. Eddie did recover from his surgery, days faster than anyone thought he would.

Finally on April 25th, 2007 our son came home with us after 95 days in the NICU.

Months later during another routine echocardiogram it was found that he had MVS, and a BAV.

October 2007 Update

This is what is going on in Eddie's Heart:

• Coarctation of Aorta repair: no residual
• VSD: 2 moderate-large 1 small
• Mitral Valve Stenosis: mild 6-mm ltq
• Bicuspid Aortic Valve: mild narrowing 12-mm ltq
• Pulmonary Artery Band: tight 100-mm ltq

January 2008 Update

Eddie's cardiologist is amazed at how well he is doing. He says it is rare to see babies doing so well with his heart conditions. Eddie's medical file is being sent up to Atlanta to be reviewed once again by his heart surgeon for possible repair of the VSDs. We will not know until the end of the month what they have to say.