Tuesday, March 22, 2011

Aly Jean HLHS

As told by Alys mommy, Jenny.
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.
Little did we know, that when we got this picture taken our little girl was hiding more than just
her “little girlness”. We thank god on a daily basis that our Ultrasound Tech paid such close
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 a few short hours before 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 Cardiac ICU. 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.
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 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.
As of just last week, we have scheduled her Fontan surgery for March 16. While we are not
looking forward to handing over our baby girl again, we are looking forward to having all 3
surgeries behind us. We know that life is full of surprises and there may be more surgeries in her
future, but that is not for us to worry about. We are looking forward to living life as normally as
we can and appreciating every day for what it is. We are so proud of our little girl and can’t
wait to watch her grow! Follow us at http://www.alyjeansspecialheart.com/ to see what she is up to now!


  1. Just wanted to add, Aly is having another surgery soon, please keep her and her family in your thoughts and prayers.
    Jenny, thank you so much for allowing me to share her story.

  2. I pray for Aly and wished she would get well soon. I really feel bad for her health.

  3. Ohhh....... it's really bad to know about Aly. And I am really depressed to know about her. And I really pray for god for her best of health.