Here is an update I wrote for some friends a few months back.....
Many of you who have been around for a while will probably remember the scary journey my daughter, Rinley, took us on when she was born 4 years ago.
She was born with a congenital heart defect known as Ebstein’s Anomaly which affects her tricuspid valve. We were immediately care flighted to Texas Children’s Hospital (TCH) in Houston where they were able to stabilize her, diagnose her condition and get her the treatment she needed for the short term. Thanks to the prayers of many and the grace of God, she has been doing very well for her condition and immediate surgery was postponed. We have been weaned down to two TCH visits a year and this year down to one day of appointments and testing. After every visit, our TCH Cardiologist sends her test results to the Cardiologist Team at the Mayo Clinic in Rochester, MN, where the experts on this condition re-evaluate and monitor her condition. Her condition is considered a rare congenital heart defect and the Mayo Clinic is one of the only hospitals in the U.S. that perform the surgical procedure she needs. The procedure is called the Cone Procedure.
Rinley’s appointment in September was uneventful and went off as normal. We didn’t hear anything back from “up North” as we usually do but we just figured everything was status quo. As it turns out, the surgeon had been out of the country. When he and the Cardiologist Team conferred, they decided it was time for Rinley’s surgery. It felt like I had been gut shot when the news came. We always knew at some point in her future that open heart surgery would be needed, but we thought we had a couple more years to prepare.
Now the time is near and we are sitting in a hotel in Rochester,MN. after a long day of testing. We are meeting with the doctors again tomorrow and the open heart surgery is Friday. We could sure use your prayers and some extra love sent our way over the next few days. I'll update when I can.
God has had his hand on her and our family since before she was born. We continue to depend on our faith and his strength to get us through each obstacle along this journey. We truly believe God will provide what is needed and heal her in his time.
Many of you who have been around for a while will probably remember the scary journey my daughter, Rinley, took us on when she was born 4 years ago.
She was born with a congenital heart defect known as Ebstein’s Anomaly which affects her tricuspid valve. We were immediately care flighted to Texas Children’s Hospital (TCH) in Houston where they were able to stabilize her, diagnose her condition and get her the treatment she needed for the short term. Thanks to the prayers of many and the grace of God, she has been doing very well for her condition and immediate surgery was postponed. We have been weaned down to two TCH visits a year and this year down to one day of appointments and testing. After every visit, our TCH Cardiologist sends her test results to the Cardiologist Team at the Mayo Clinic in Rochester, MN, where the experts on this condition re-evaluate and monitor her condition. Her condition is considered a rare congenital heart defect and the Mayo Clinic is one of the only hospitals in the U.S. that perform the surgical procedure she needs. The procedure is called the Cone Procedure.
Rinley’s appointment in September was uneventful and went off as normal. We didn’t hear anything back from “up North” as we usually do but we just figured everything was status quo. As it turns out, the surgeon had been out of the country. When he and the Cardiologist Team conferred, they decided it was time for Rinley’s surgery. It felt like I had been gut shot when the news came. We always knew at some point in her future that open heart surgery would be needed, but we thought we had a couple more years to prepare.
Now the time is near and we are sitting in a hotel in Rochester,MN. after a long day of testing. We are meeting with the doctors again tomorrow and the open heart surgery is Friday. We could sure use your prayers and some extra love sent our way over the next few days. I'll update when I can.
God has had his hand on her and our family since before she was born. We continue to depend on our faith and his strength to get us through each obstacle along this journey. We truly believe God will provide what is needed and heal her in his time.
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