Meet Aly

Well, today is the day that we spice Books for Charley up a little bit!  Like I mentioned in yesterday's post, I wanted to do a little something MORE this year.  It felt so good last year for us to be able to give back to the places that did so much for our little girl, and I wanted to create an opportunity for other heart families to do the same (while at the same time spreading the word about Charley's Heart!)  For the next 3 days we will be sharing the stories of 3 kiddos that are also living with CHDs...each of them super strong, super brave and super-stinkin' adorable!

First up is our friend Aly!  I found her mom's blog very early on in our heart journey and immediately fell in love with this spunky little girl!  Hearing stories and seeing pictures of her today, one would never guess what she has been through in the past 3 years.  Last year Aly's mom, Jenny, contacted my cousin Tara to see how she could help with our Books for Charley collection efforts.  She shared our story on their blog and collected donations that allowed for the purchase of over 100 books!  Awesome.  Awesome.  Awesome.

Enough rambling from me...MEET ALY!

My husband and I had been married for 3 years when we decided that it was time to add one more to our family. On November 14, 2008 I found out we were having a baby and we were ecstatic! For some reason, I just knew I was pregnant. I bought pregnancy tests and took one everyday for 5 days. I just had this feeling. 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, registered for gifts, 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 though, 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 told she would be born with only half of a heart. We were devastated, but didn't give up. We were thrilled to find out that the University of Michigan, located a mere 2 hours from our home, was ranked 3rd in the nation for pediatric cardiac surgery. 

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. It was 7 days before I got to hold her for the first time. 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.

She had her Norwood procedure on July 6, 2009 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.  Eight 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. Fourteen 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 only 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 after only 8 days. Life for Aly is so normal. She is only on two medications and has absolutely no restrictions. Aly Jean is absolutely my hero and she amazes me every day by her strength.

I had been following the Ritchie family blog for awhile and will never forget the day I read of sweet Charlotte's passing.  As a heart mom, you are forced to deal with the mortality of your child.  You have discussions with doctors where you talk about the chances of your child dying. When my daughter was diagnosed I learned that having a baby doesn’t necessarily mean they will survive--my baby girl would have to fight to live. I have learned a new level of empathy. I didn’t know this until I found myself jarred so intensely by the passing of a sweet baby girl that was just a few weeks older than Aly right after we were discharged from her Norwood surgery.  It hits you in a way that I can never explain- As a heart mom who has sat in an ICU and watched my child be kept alive by machines and medications, I know that things can change in the blink of an eye.  The smallest hiccup and we could become a part of every parents worst nightmare- we could lose our child.  It becomes so real because you can see yourself in their shoes.  It’s terrifying and heartbreaking and unfair.  

When Charlotte passed, I was devastated.  I remembered reading Kristen’s words just the day before of what a wonderful weekend they had and how they were looking forward to a healthy summer and lots of sunshine and being so happy for them.  The scariest thing about our special heart children is that you never know what is happening.  Just because they are not showing symptoms or they get the “everything looks great” from their doctors doesn’t mean that nothing will happen to them now, in five minutes or tomorrow.  Charlotte’s passing was so sudden and unexpected and reminded me that every single second is so precious and should be appreciated.  Charlotte taught me that worrying about the future isn’t going to get me anywhere.  Being present now and enjoying life today is what it’s all about because we don’t know what tomorrow will bring.

I was honored when Kristen approached me to help her commemorate Charlotte’s angelversary this year.  I was so happy to help last year with her amazingly successful Books for Charley event.  Our friends and family really stepped up and helped us contribute and we were able to donate over 100 books!  We look forward to spreading the word about Charley at our local heart center (University of Michigan C.S. Mott Children’s Hospital) this year.  Thank you so much for allowing us to be part of such a special project.

Thank you so much Jenny for helping us with this years event...and even more so for sharing Aly's journey with us.  She is such a strong little girl and her pictures can always make me smile!  For more on Aly's story (and some entertaining "Aly-isms" from time to time) visit her website at www.alyjeansspecialheart.com.