Gracelyn's Story: Morning of Day 2

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.

Tuesday, April 28, 2015

Morning of Day 2

Gracelyn is doing SO great. I went down for shift change at 6:30am this morning. I was in shock. My sweet girl looked so different. She had rosy cheeks and bright pink lips. She looks beautiful. I am so excited to show her her lips! She had a good night. She slept well. She hung on to her bear Uncle Jared and Aunt Amber brought her all night. She is less sleepy this morning. Line after line are being removed. She is talking to us and telling us what she does and doesn't like. :) She is able to drink now. She doesn't want anything but "VERY cold ice water." She has wonderful nurses they are talking great care of her. Right now she is on one on one care. It's very comforting and makes it easy for us to step out to get fresh air. They moved her to a different room. We are in room 13 now. Grandma Hales and Camee came to visit. Camee and I were able to get her head up enough to comb through her hair and get her hair in a pony and headband. That made her happy. They recently took the arterial lines out of her neck and left arm. Because of that, they want her super still for two hours and then we hope to have her up sitting up. We've tried keeping her distracted and comfy by playing music through her ipod.

My daughter is so beautiful. Inside and out. I can honestly say that I have never met anyone sweeter than Grace. She is being so kind to everyone, despite the pain they are putting her though. Everyone is eating her up.