Annie's Story: Part Two - Annie's Life

No one has ever explained to us how Annie's predicted catastrophic heart defect was non-existent at birth. We were told that she might live for only 10 minutes. However, Annie was born full term, 7 pounds, with Apgar scores of 8 and 9 out of 10.  Her tone, reflexes and power were noted to be normal. She sucked on a pacifier like any baby. She was transferred to the Children's Hospital for observation and remained there for the first 6 weeks of her life. Her blood sugar was very low and she needed to be on an extremely high calorie diet. She was never hungry, of course, and so her milk needed to be given to her via an NG tube. (nasal gastric tube )

Annie received excellent supportive care at the hospital. The nurses were all very professional and compassionate. My husband and I never left Annie’s side, night or day, and we grew to know many of the nurses well.

During one week of that time, a visiting physician became  involved in Annie’s care because our primary physician was on holiday. She ordered a consultation from a pulmonologist (lung specialist) because of Annie’s unusual breathing patterns and the fact that the oxygen saturation numbers on the monitor were so volatile.The pulmonologist told us that he feared that Annie had a rare and fatal condition with her trachea called tracheostenosis. He said there was a surgery for it but it was very horrible with a high mortality rate for children who were not fragile like Annie.We would not choose to undertake a surgery with such a bleak prognosis. Our thoughts over the next hour focused on how our baby would die from this. How would we provide comfort care for a slow death that could best be described a gradual suffocation? 

Within hours, two physicians arrived at separate times to soundly refute the suspicions. One of them said, "We are allowed to disagree you know, and I disagree" Well, this was good news! Our trusted primary physician returned and he was not too concerned about the suspicion but said he’d keep an eye on it.

Annie came home at last. Taking care of Annie was not easy. Her lungs were somewhat premature and she needed the very smallest amount of oxygen (100cc). As apnea (when you stop breathing) is common with her condition, at night we had her attached to an oxygen saturation monitor and slept with one eye open.My husband took an indefinite leave from work. This effort took both of us. We knew the first year (if we were lucky enough to have a first year) would be a challenge.

Part 3: Annie's Death