Emory (2006)

Emory is a miracle to us (of course). Despite Debbie having a sister who died from truncus arteriosus in 1969, no one thought we needed fetal testing as no one else in her family had heart problems. We had no knowledge of his heart defect until he was born. The nurse in the labor & delivery room at a community hospital was absolutely the person who "got the ball rolling" for Emory; she noticed within minutes of birth that he was breathing too hard and recommended a exam in the regular newborn nursery. Because of her excellent observation skills, Emory was seen by a pediatrician almost immediately and taken to the NICU in less than 1.5 hours from birth where he received specialized care.

Within hours, a pediatric cardiologist from Johns Hopkins came for the consult and delivered the news...and Emory was transferred that night to Hopkins. Emory was discharged after a few days. He started to go into respiratory distress and congestive heart failure within a few days...but we did not recognize the symptoms for what they were. He would go into fits of just screaming at the top of his little lungs and nothing we did would calm him down...he would fall asleep in exhaustion from the screaming, but otherwise he seemed to be eating okay, and his color looked fine. Unfortunately a phone call to the pediatric practice (that was new to us and vice versa) did not detect any urgent problems via our description over the phone, so he was not seen by the pediatrician during this period of about 5 days. A few days later, we went to Hopkins for a "routine" cardiology check up...and they rushed us to the Emergency Room. It was quite the exciting ride through the Hopkins complex - we even commandeered an elevator and made everyone get off of it!

Emory then spent the next 3 weeks in the PICU at Hopkins, during which time he had his surgery. A complete repair for the TOF was performed, and they reduced the pulmonary arteries. In his case, his pulmonary arteries were enlarged in order to get sufficient blood to the lungs, but the weight and size of the enlarged arteries were pressing on his lungs - making it harder for him to breathe, and in fact one of his lungs did not fully "inflate" during in-utero development as the arteries were taking up space that the lungs needed.

One week after surgery, we brought our 5-week old baby home. The first year was very challenging as he was very susceptible to respiratory infections, and despite our efforts to minimize his exposure to others, he was sick a lot with bronchiolitis and possibly RSV. Emory had horrible reflux and would just empty his stomach several times per day - not the normal type of spit up that babies do, but the entire stomach. We did a lot of laundry that year. When we did go somewhere, we carried extra burp cloths, clothes, etc. as we knew we'd need them. Emory christened various public places (to this day we avoid a few places on the PA turnpike as he had repeat performances there while traveling to visit family). All of these symptoms contributed to horrible sleeping patterns for him... and for us. We were exhausted to say the least.

However, we are so very thankful for our family, friends, and church members who visited at the hospital, prayed fervently for Emory, provided meals, emotional support, and especially helped us with Emory's care after he came home. God also blessed us with a wonderful child care provider who only cared for Emory as he needed to be isolated from others. (Debbie carries the health insurance for the family and had to return to work.) God provided for us in many ways that first year or so. We are also incredibly thankful to the doctors, nurses, technicians, social workers, and others at Hopkins who cared for Emory.

Every milestone is a wonderful achievement for all of us. He overcame very mild developmental delays and walked within 15 months and really caught up with his development during the 11-15 month age period. A few years ago Emory was diagnosed with asthma. That is more complicated to manage than his heart, but we have good care from specialists at Hopkins. We also worked on his sleeping habits with behavioral plans and a consult from a sleep therapist.

So now Emory is turning 6 at the end of July 2006. He is an inquisitive child who loves to read, create and do art work, he's perceptive and funny, and he is very perceptive. He loves his little sister, too, and is very protective of her. (We were not sure if we'd have another child, but we decided to go for it, and she is healthy.) Emory graduated from kindergarten this year and is ready for 1st grade this fall. He is truly a blessing from God, and we cherish every day with him.