Gracelyn's Story: 10 ounces in ONE week!

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.

Monday, January 25, 2010

10 ounces in ONE week!

We had another very positive doctors appointment this week. As I have mentioned before, Gracelyn is on a diet of breast milk mixed with a high calorie formula. The doctors were concerned about her putting on weight. At her first appointment with our pediatrician she was in the tenth percentile on her weight. Our doctor wanted her to come back the following week having gained 7 ounces, she gained 3. He sent her home for another week wanting her to gain an ounce a day, when she was weighed this week she had gained 10 ounces. The doctor was really happy, he said she had gained too much. He decided to let me nurse her and see how she did. YEAH! I was amazed, after 5 weeks of bottle feeding she adjusted to nursing right away. We were also able to cancel our speech therapy appointment because of all of her progress over the last few weeks. So for me, no more pump, at least for this week. Let's hope she does well and continues to gain the weight the doctors want her to.