Sarah Ruth

Our daughter was born on December 18, 2003. We did not know that she had a heart defect until the next day. We were flown to Denver were she had the Norwood at 11 days old. She did fairly well and was sent home when she was three months old.

We went back for the Glenn when she was five months old; she again did very well and came home two weeks later. She did suffer phrenic nerve damage and had a collapsed lung but compensated well. Her O2 saturations were 65% on oxygen two months later, and that just was not good enough. We moved to the Seattle area and she came off the oxygen right away.

When she was two, Sarah had a stroke that affected her left side. She recovered very well and we did not have any problems for the next few years.

On January 15, 2007 Sarah became a big sister to boy and girl twins, Jeremiah and Katie. Life really got busy. A year later on the 9th, Sarah had the Fontan. Sarah did well again and only needed chest tubes for two weeks. We were sent home after three weeks only to come back for a major infection; we then spent the next three month in and out of the hospital trying to get the infection cleared up.

We finally decided that nutrition was a problem and she needed to get a feeding tube put in. After many years of working very hard to keep her from getting one, I must say that as soon as she was getting all the calories she needed, she got better and better.

We now live in Watertown, South Dakota, and Sarah is doing better than we ever dreamed. She still has the G-Tube but we are working on getting out with in a year or so. Sarah will need a repeat Fontan when she become adult size, because she was not able to have a large enough tube. We are very grateful to the amazing doctors and nurses who took care of Sarah and continue to. We are very grateful for the Nurse who caught Sarah's heart defect when she was born. I would hate to think what would have happened if we were sent home with out knowing about her heart defect.