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, September 25, 2009
Goodbye Machel and a Congratualtions Paul!
Tuesday was a sad day for me. I had an appt. with Machel and apparently I won't be seeing her anymore. I will be going to a Perinatologist at McKay to keep track of Grace and I until after she is delivered. I will be seeing Dr. Andres who is said to be one of the best. He travels back and forth from the U and McKay from what I understand. We will be going to see him on Tuesday, September 15 and will learn more then. I am so sad that Machel won't be taking care of us anymore, but there is a good chance that Dr. Andres will be the doctor who will deliver her and it will be great to know him before hand. I don't think we will be getting so see many ultrasounds anymore that show much more than her heart. So, here is one of the last looks at her before she comes. I love these profile pictures. She is so happy and content now, she has no idea that she is sick and has a heart that isn't quite perfect.
On a VERY exciting note, Paul Cardall, who is a local Utah musician, finally received his heart transplant after being on the waiting list for nearly 400 days. A few months back we attended a benefit concert for him in Salt Lake. Who knew that this would become a little more personal than it was then. He also was born with CHD, including what Gracelyn has, along with other problems. He has recently become very ill and has made Primary's his permanent home. I've been so worried to see on the news or his blog (http://mytricuspidatresia.blogspot.com/) that he had passed away. I was SO happy today to get a call from my mom that his heart finally came and that he is doing so well. It is hard to be so happy for him knowing that this happiness for his family came at another's family expense, but what greater gift and sacrifice. I pray God will bless both of these families.
".....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
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