Saturday, February 17, 2007

May 17, 2005, I took Tiernyn (almost 3 months old) to the emergency room for a slight fever. There I was surprised to find out he had lost weight since his 2 month check up. After several tests and a chest x-ray, the doctor told me that his heart was big and we needed to go to another hospital. We got there and were sent by ambulance to the pediatric intensive care unit at another hospital. There we were told our baby had a rare heart defect, anomalous left coronary artery to pulmonary artery (ALCAPA), and he needed emergency open-heart surgery. He had surgery on the 20th. Everything seemed to be going great. Tiernyn was almost ready to go home. We decided his big brother, Taylem. could visit him on the 24th at the hospital, since he looked so much better. After attempting to feed Tiernyn, the nurse and I attempted to put him back in his bed. He began to go stiff and all the machines began beeping. Doctors and nurses rushed in, I took our oldest son out of the unit, while my husband stayed with Tiernyn. I stood in the hallway in shock and panic holding Taylem, not knowing what to do. Somebody came by and opened a consolation room. Two chaplains came in and Taylem went with a child life expert. After 15 minutes of chest compressions, Tiernyn came back. The doctors were unsure how much damage had been done to his tiny organs due to lack of oxygen. They told us to be prepared for severe mental disabilities. He had aspirated because his heart was so big it had pushed his esophagus, so when he refluxed the formula it went into his lungs. Tiernyn had another surgery to implant a feeding tube.

Twenty two days later, Tiernyn was released from the hospital. Therapists still visit Tiernyn regularly and he does not eat by mouth, but his doctors seem amazed with overall his recovery. His current heart diagnosis is endocardial fibroelastosis, scar tissue in his left ventricle and a damaged mitral valve. We know there is struggle ahead, but we feel very blessed to have our little fighter.

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