Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Wednesday, February 27, 2013

Day 27: Meet Aly and Violet!!

Day 27 you will meet Ms. Aly and Ms. Violet.  Both little girls beat the odds and are living beautiful lives with mended hearts.  SUPER CUTIE ALERT!!! 


MEET ALY!!!






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 every day 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, 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 attention and caught that something just wasn’t right with the heart.

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.

Isn't she beautiful?!

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 visit 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. 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 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.

March of 2010 we returned to the University of Michigan for the Fontan, the final stage of the anticipated surgeries.  Aly’s surgery went very smoothly and after staying a few extra days to deal with some post operative drainage, we were on our way home 8 days after surgery.  




This picture was Aly, 10 days post Fontan.


The last two years have been amazing since Aly’s Fontan.  She has lived her life like any heart healthy toddler would, other than taking medication twice a day.  She has really thrived- she has been to Disney World, to the beach, camping, loves to swim, started preschool, started ballet and tap class…. I could go on and on.  Aly is my hero- she has endured more in three and a half years than most will in a lifetime. She is the strongest little girl I know and motivates and inspires me on a daily basis.  She lives her life despite her heart defect, not consumed by, and that is more than we could have every hoped and dreamed for her.  Feel free to follow along with Aly and her adventures at www.alyjeansspecialheart.com



“Once you choose hope, anything is possible.” Christopher Reeves



MEET VIOLET!!!



I found out I was pregnant in November 2011 at just 6 weeks. We were nervous because I had just had a miscarriage at the end of September and had two before that in 9 months. I went to the doctor to be put on progesterone and a baby aspirin. I had found out I have a clotting disorder (Factor II) so I was being seen by a perinaologist. 
Everything was going well and at the nuchal scan, her fold measured 2.7mm, which was on the higher end of normal. Coupled with my blood work, I had a 1 in 2mil chance for the main three trisomies. Fast forward 7 weeks to my anatomy scan.
We had found out we were expecting a little girl at 16 weeks and named her Violet Reese. We were excited to see her again and we thought it might be the last time seeing her before her birth. Boy were we wrong.
The doctor came in and immediately started looking at her heart slides. I felt a bit weird about it, but brushed it off. About five minutes later, my world came crashing down.
They took us to a conference room and mentioned things like "heterotaxy" "DiGeorge Syndrome" "Trisomy 18" and "termination". Needless to say we were heart broken. Our little girl was going to be born with a broken heart. It was never on our radar so we were blind sided.
The rest of my pregnancy was filled with lots of appointments, amnio, fear, but most importantly, joy. We were not going to give up on her.
She continued to grow perfectly and prove the doctors wrong. I was scheduled for a c section due to her breech presentation on July 10, 2012. From the get go, she was telling the doctors to kiss her butt. She was born at a healthy 6lbs 15oz and scored two 9s on her APGAR tests. She was wheeled away and in that flash, I saw a fighter who was going to beat the odds.
Her formal diagnosis is: ASD, VSD, hypoplastic right pulmonary artery, hypoplastic right lung, PAPVR on the right side and those veins are hypoplastic, Dextrocardia, and an interrupted IVC. She has Heterotaxy and Scimitar Syndrome. 


She spent 6 days in the NICU and never needed any intervention. At two weeks old, she was admitted for congestive heart failure and was placed on two medications. She stayed another six days and we went home for about four weeks.
She was admitted again on August 26th and got discharged on October 17th. During that time, she had two surgeries. She had a PA band placed on September 4th. During that surgery, her left vocal cord was damaged. She had a swallow study done and they found a trace amount of aspiration. We moved with a G tube and Nissen Fundo on September 26th. 
Since her discharge, she has been healthy and avoided any re-admissions  She has gained nearly 7 pounds in four months. Because of this growth, her repair is tentatively scheduled for the spring (it was supposed to be in July). Violet is currently in PT due to a delay of almost two months physically. She will be starting ST soon because she has stopped taking a bottle.
We have been extremely lucky with her health during this winter and count our blessings every day. She just had her 7 month 'birthday' on the 10th, one that we did not know if she would make it to. Violet is truly the greatest thing that has ever happened to us. Of course, I do have my down moments, but being around a child who has been through so much already and still laughs every day, how could I not smile? =)




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