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, February 16, 2010
TWO Months
It is hardto believe that two months have gone by already. So much has happened is such a small amount of time. At two months old today, Gracelyn is growing and doing great. She is such a beautiful baby! I am amazed at how well she is healing. Her scar looks wonderful! The bottom half has already begun to turn clear after only seven weeks. I have had a really hard time with her scar. Actually, the truth is I have hated it. It is hard to see such a perfect tiny little newborn body scared so badly. I realize it is her mortal body, I realize one day she will receive a perfect complete body. I have been told it over and over again and I know it is true. It just isn't something you want to see on your new baby, but it beats the alternative. It is a constant reminder of what she has had to go through, what lies ahead in the future and just how fragile her life is. It's ALSO a reminder that miracles really do happen. For that reason alone, I guess it has begun to grow on me and I have learned to accept it. To look at Gracelyn now, at two months old, you would see a perfect newborn baby. She looks so healthy. Though her heart problems will always be with her, she is finally becoming so much more than just "sick broken hearted Gracelyn." She is Gracelyn that loves her brother and allows him to give her all the "attention" he wants. She is Gracelyn that smiles at the sound of her daddy's voice. She is Gracelyn that knows exactly when her mom walks into a room. She is Gracelyn that loves to go for rides. She is Gracelyn that can't go far from her binki. She is, and will always be, Gracelyn that is living proof that God exists and loves us. She is Gracelyn that has added so much to our small family that words can't express.
At her TWO month well child visit she was: Height: 21" 12% Weight: 9 pounds 2 ounces 12% Head: 24% Sats: 90%
At two months old Gracelyn: -LOVES when her brother holds her -Coos -Smiles at the sound of her dad's voice -Loves her binki -Loves to be bathed -Hates to be naked -Sleeps 6-7 hours at a time at night -Loves to be held -Still wears newborn size clothes -Loves to ride in the car -Is only on two medications -Still has a piece a gortex in her heart keeping her alive -Heart still sounds like a washing machine
Though they have been tough, we are so grateful for these first two months we have had Gracelyn in our lives. She truly is a blessing. She has taught us to grow in ways we never though we would have to or could. We love you baby Grace!
".....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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