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.
Wednesday, January 5, 2011
Delivering Care Packages to PCMC
The morning of December 23 we had the opportunity help deliver the care packages that were assembled on Gracelyn's birthday for the heart patients at PCMC. This was the time that had been scheduled for us to bring them down. Coincidentally it was the anniversary of Gracelyn's first heart surgery. Even the exact time. It was very therapeutic to say the least. We were told we could just drop them off at the front door, but that didn't seem very fun. Jeff and I walked up to the Cardiac Intensive Care Unit (this is where the children are that have just had surgery) and told them what we had. They were ecstatic. They told us to bring them up. We took a bunch of them there and we were then directed to take them to the floor where the rest of the healing and sick heart patients were at. On this floor Jeff and I and the young man whose eagle project this was, had the chance to hand them directly to the families and introduce them to Gracelyn. She is a great testimony to these parents of the sick newborns of where there baby could be in a year. She looks so healthy and strong. The father of the last child we gave a basket to began to cry. Of course so did I. I knew where he was at and I know how bad it hurts. I left feeling even more grateful. More importantly we went to PCMC and left. :) I am so grateful my family and I had the chance to be a part of something so GREAT! Thank you again Brian! We will never forget this! After we finished delivering the packages we had lunch in the cafeteria. It just seemed fitting. This time we brought Gracelyn with us. :)
I love it! We need to come up with something WONDERFUL for next year, we should work on it together! It really made last christmas that much more special! I'm sad i did nothing this year. Start brain storming...
So neat. What a special project...thanks for letting us be a part of it. It is amazing to think of where you were a year ago and to see how far Grace has come.
"Believe in Miracles" She is a miracle and so so cute! Love ya.
".....Heaven's kindness will never depart from you, regardless of what happens......Bad days come to an end, faith always triumphs, and heavenly promises are always kept."
--Jeffrey R. Holland--
"Life is hard, but life is simple. Get on the path and never, ever give up. You never give up. You just keep on going. You don’t quit, and you will make it."-Lawrence E. Corbridge
"A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty." -Winston Churchill
I love it! We need to come up with something WONDERFUL for next year, we should work on it together! It really made last christmas that much more special! I'm sad i did nothing this year. Start brain storming...
ReplyDeleteIts me, Mindi.. sorry :)
ReplyDeleteSo neat. What a special project...thanks for letting us be a part of it. It is amazing to think of where you were a year ago and to see how far Grace has come.
ReplyDelete"Believe in Miracles" She is a miracle and so so cute! Love ya.