Eden, born 2005

We will never forget that day when we went to get more little black and white pictures of our little baby growing in mom. The technician was having difficulty distinguishing all the chambers of that little heart. Our baby would soon be diagnosed with multiple heart defects.

 

March 25, 2005 at 10:30 our precious little girl was born by C-section after mom went through a long 30 hours of labor. Three days later she went in for her first surgery; a BT Shunt. It was one of the longest and most emotional days we would endure. After seven hours in the operating room, we were finally able to see our little girl again. She was now hooked up to more machines and IVs than ever before. Her chest was covered with a bandage almost as big as her, with drain tubes in her chest and she was on a ventilator. Three weeks later she would finally come home.

 

On October 25th as Eden turned seven months old, she went in for her second operation, a bilateral bidirectional Glenn (she has two superior vena cavas). She went into the surgery at 7:40am, after six hours of surgery we were able to see her in her own PICU room at 2:00. She was on morphine to help with the pain and keep her sedated. Thursday at 3:45 in the afternoon they removed her from the ventilator. That night and the next day would not be fun as her pain dosage would be reduced and soon she was changed to only have Tylenol. Her chest tubes would be removed a day later along with all but one IV. By Friday night, just three nights after her surgery, Eden was smiling, eating and babbling to any visitor coming to check on her.

 

Four weeks after the bidirectional Glenn, Eden had a setback. Three was a suspected problem with the transfusion she received for her operation. Eden had a 104 degree fever for eleven days until she was finally diagnosed by the infectious disease department at CCMC. Her blood was infected with a parasite called Babesiosis. As the parasite destroyed her red blood cells, diminishing her oxygen carrying capacity, Eden became anemic, dehydrated, lethargic, achy and stopped eating. It would take two weeks for Eden to recover with hopes that there were no long term effects to her liver and spleen.

 

Eden is still in for many more visits to her cardiologist and is expected to have a third operation by the time she is three years old. She will be getting a form of an arterial and Rastelli switch.

 

Story by Eden's dad, Jim - Connecticut