Gracelyn's Story: Grace at 5 years old

Our Story

Jeff and Andee were married in 2003. We were both born and raised in Utah. We have three sweet children. During a 23 week check up with our second child, the baby was diagnosed with Pulmonary Stenosis, a heart defect. She was born on December 16, 2009 when the doctors discovered she actually had Pulmonary Atresia, Tricuspid Atresia and Atrial Ectopic Tachycardia. After she was born she stayed at Primary Children's Medical Center for three weeks. During that time she had a BT Shunt and stent placed in her heart.

On June 4, 2010, Gracelyn received her Glenn shunt. During that time they removed her BT shunt and stent. She is doing great! The next step will be the Fontan procedure some time after she turns two.

We intend for this blog to keep family and friends aware of what's going on as our story progresses. We have learned so much and found strength from the blogs and websites of those that have previously gone through this that we want to share our story for those who will unfortunately face this as well, as there is currently no cure for Congenital Heart Disease. We are grateful for all the prayers on our behalf.

UPDATE: July 2013: Gracelyn was scheduled to have her Fontan this summer. Doctors feel like she is doing so great it can be postponed until next summer. We have recently contacted the Children's Hospital of Boston for second opinion. They believe they have an alternative to the Fontan. In September we will head to Boston to see what they can do for her.

UPDATE: April 2015- Gracelyn had her Fontan surgery on April 27, 2015. She flew through the procedure and recovery. It didn't happen immediately, but by day two she was a beautiful shade of pink.

Friday, April 17, 2015

Grace at 5 years old

I've used Gracelyn's blog as a place to journal major events. It's so hard to remember all the little details when so much is going on. This personal and sacred space has become a place where I can go back and remember exactly what took place and when Grace is older she can understand just where she has been and how far she has come. With four children now, it is hard to keep up. No MAJOR events have taken place in some time, but there some things I wanted to share. They may not seem like a big deal, but sometimes the little milestones are such a big deal for a heart kid. Grace was able to start her second year of preschool in September. Her little sister is in the same preschool, but in the younger class. It has been so fun to have them together. She has begun to read and write and is quite the mathmatician.

She is no longer our middle child. In September she became one of my big kids, when we delivered a THIRD little girl. Grace adores her and is my biggest helper. I couldn't get through my days without her help. We made it to the 5th anniversary of her first open heart surgery. Each year we deliver a gift to Primary Children's hospital on that date. This year our message was to find "Joy in the Journey."

We have stayed very active in our support group. Intermountain Healing Hearts. We are so grateful to have them all. The past few years I have had the chance to design the shirts for our annual "Walk for healing hearts."

Grace loves to laugh and loves it when people laugh at her and tell her she is funny.

There are so many things she gets to do that would be so normal to many, but at one point we questioned that she would ever be able to do.

She spends many of her weekends in the summer camping.

Each year she takes a trip to Lake Powell.

She LOVES to swim. It is so relaxing to her. I often find her floating on her back with her eyes closed.

She has to keep up with her brother who is three years older than her. Whatever he does, she has to as well.

She likes to be involved in whatever I am doing. She is by my side in all my "projects," as she calls them.

Grace is part of a group called Hopekids. Each month they provide dozens of activities for kids with life threatening diseases. Each year a group puts on a princess party called the Hope Ball. It is one of her favorite activities. She gets to dress up like a princesss, go to a castle and dance with the all the Disney princesses.