Little Hearts

Raychel, born 2002

My daughter, Raychel, was born on April 1, 2002. Even before she was born, I was told she had multiple physical and medical problems. Due to her conditions, she was born in St. Mary's Hospital in Madison, WI.

Shortly after Raychel was born, I was told she had two heart defects, VSD and PDA. Fortunately, the PDA closed up on its own, but the VSD never did and caused a condition called Double Chambered Right Ventricle (DCRV) where the muscle in the right ventricle of her heart started to thicken. Raychel's cardiologist told me she would need surgery if the muscle became too thickened.

The dreaded day came on September 12, 2007. I brought Raychel to Helen DeVos Children's Hospital and Congenital Heart Center in Grand Rapids, MI the morning of 9/10 for a cardiac catheterization that showed the muscle so thickened, it was nearly completely blocking off the right ventricle in her heart and causing it to pump at an alarming pressure of 86. She was in danger of a heart attack.

Her surgery on September 12th took approximately 5 hours and it was the longest 5 hours of my life. At about 1pm, my baby girl was brought upstairs from surgery to the PICU to recover. She was hooked up to at least 10 machines, a multitude of tubes, and had a 6-inch-long incision down her chest. She was gagging on the anesthesia and gasping to breathe on her own. She opened her eyes occasionally and looked at me while gripping my hand and crying in pain. I felt so helpless to do anything for her. I cried, seeing her in that condition.

Two days later, Raychel was released from the hospital. She was still weak, of course, and on medication, but is recovering well. Her sternum is wrapped in wire and clips to help it grow back together.

This past October, my little girl had a minor setback when she passed out twice while playing with me and her sister. She was taken to the hospital and kept overnight, hooked up to a heart monitor. The next morning the doctor performed an ECHO on her and it was found that a blood vessel leading to her heart had become dislocated as a result of her open heart surgery and was no longer in its proper location. Her doctor assured me it was nothing to be concerned about but definitely to watch. She was sent home later that day, wearing a portable heart monitor.

For now, we just take each day as it comes. Raychel has her good days and bad days, but I pray she will continue to get stronger. She is a strong little girl who has beaten everything that's been thrown in her path. I pray she will continue to beat this as well.

MAY 2012 UPDATE:
She has been doing quite well. She had her most recent ECHO 2 months ago and everything went very well. She now does not have to come back for another ECHO for 2 years unless she has any trouble. She just turned 10 years old last month, and is definitely one active little girl. She has asked questions about the scars on her chest and stomach, and I explained to her why she has them. As long as she continues to do well, she will not need any further treatment.

Story by Raychel's mom, Arica - MICHIGAN

3/25/2012
Jack, born 2011
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