Tuesday, February 7, 2012

Faces of CHD: Aly's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. Thank you to all of the families who have allowed me to share their stories with you. These are the faces of CHD.

Day1: The Story of Aly Jean Lincoln...

My husband and I had been married for 3 years when we decided it was time to add one more to the family. On November 14, 2008 I found out we were having a baby! We were ecstatic! For some reason, I just knew I was pregnant. I bought pregnancy tests and took one everyday for 5 days before that. I just had this feeling~ I knew we were pregnant. Finally, I got a positive one! (2 actually - one for back up :) ) For the next 6 months we blissfully planned for the arrival of our baby. We painted a nursery, we registered for gifts, we picked out a crib... the fun stuff. :) At our 20 week ultrasound, the tech was really struggling to get a good view of the heart. She kept saying, "I can see it, I just can't get a good picture of it." She didn't seem concerned, she just kept laughing that we had a stubborn little baby who wouldn't move the way she needed her to. We laughed right along with her and didn't think twice about it. Never once did it cross my mind something might not be right.

On May 9, 2009 I went for my level 2 ultrasound to get a closer look. I wasn't nervous at all. Again, it never crossed my mind something might not be right. Our world came crashing down that day.

Our daughter was diagnosed with Hypoplastic Left Heart Syndrome at 30 weeks gestation. We were devastated but we didn't give up. We were thrilled to find out that the University of Michigan was ranked 3rd in the nation for treating this CHD and was located a mere 2 hours from home. Our daughter, Aly was born at U of M on June 30, 2009.

She scored 8 out of 9 on her APGAR tests and did very well on the days leading up to her first surgery. Aly was born via C-Section so I was unable to see her until she was over 24 hours old.

It was 7 days before I got to hold her. And even when I did I wasn’t really “holding” her. I was holding blankets and tubes and wires with a little tiny baby in the middle of it all.

This picture was taken just moments before she was taken to the operating room for her first open heart surgery.
She had her Norwood procedure on July 6, 2009. She survived surgery and did really well until they got back up to the Pediatric Cardio-Thoracic Unit. She had a rough patch that evening of trying to get stabilized but pulled through.

Underneath that heart shaped gauze is a yellow membrane that was covering her chest. We could look through the membrane and actually see her heart. Her chest was left open for 4 days following surgery.
8 days later, she went back into the OR for a shunt revision. The shunt that had been placed in her tiny heart was narrowing at one end and had to be shortened. 14 days later, we brought our baby girl home for the very first time.

We struggled with feeding and gaining weight, as many heart babies do, but we made it to her Hemi-Fontan procedure on December 4, 2009. Aly did unbelievably well and we were home 5 days later.

In March of 2011, Aly had her final of the staged surgeries, the Fontan. She showed us, yet again, how amazing she was and we were home 8 days later. Life for Aly is so normal. She is only on two medications and has absolutely no restrictions. In fact, we just got back from our first trip to Disney World, where Aly rode every single ride at least once and was still running around the park, happy as can be. Aly Jean is absolutely my hero and she amazes me every day by her strength.

Follow us at www.alyjeansspecialheart.com to see what she is up to now!
Here’s Aly last week at Disney World enjoying her first Mickey Mouse Ice Cream bar…. For breakfast.