Published: Monday, December 07 2015 04:25
Our sweet Grace was born two days after her due day on November 15, 2001. After much ado with her heart rate dropping due to the umbilical cord being wrapped around her neck, she arrived with a loud cry! I'll never forget as the nurse handed me my sweet baby girl and reassuringly said, "Look at her she's pink and healthy". Little did we know our Grace would show signs of distress at her two week check-up with labored breathing, a heart murmur, and a coloboma in her left eye. We were immediately sent to Emanuel hospital in Portland, Oregon where we were rushed into ICU as Grace's coloring looked much more blue than pink. Later that day, it was determined after running many tests that Grace had a Congenital Diaphragmatic Hernia.
Looking at the x-ray with the surgeon, my husband and I felt somewhat relieved that it wasn't more serious. After all people get hernias everyday and have surgery and then are just fine- or so we mistakenly thought. You see, we had no idea how serious CDH is and further, had no idea the problems that seem to follow these little ones long after their initial hernia repair.
Grace was one of the lucky ones. She sailed through the surgery and was out of ICU and off oxygen just days after her operation. The surgery had gone very well and we were home in less than one week. What a relief to have it behind us and I, her mother, felt she would thrive at home. The difficulty began with feeding her. She would fall asleep within the first five minutes of nursing, had difficulty gaining weight, and it started to appear as if she was uncomfortable as she would squirm and arch her back.
We were referred by our pediatrician's office to a developmental pediatrician. She observed Grace nursing and suggested a NG tube because she felt she wasn't strong enough after surgery to do it herself. She wouldn't take a bottle so there was no other way of increasing her calories. We were very hesitant to pursue this, but it was becoming apparent that she needed some type of supplementation and we felt that if she put on some weight she might be strong enough to nurse on her own. Grace had the NG tube for about six weeks. We tried to remove it once but she had difficulty gaining weight. She started to arch more during her feeding and spit or vomit frequently. To our surprise, the developmental pediatrician seemed to have no explanation for this and instead referred us to a gastroenterologist for a gastrostomy tube (G-tube).