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.


Sunday, February 3, 2013

Day 4: Meet Isabelle and Alyssa

Isabelle and Alyssa were both the third child born to their mommies and daddies...both born with a heart defect and both have changed the world.  Please take a moment to learn more about their fight.  


On December 8, 2012 we found out we were expecting Number three. We were so excited and had been trying to complete our family. With great hopes and aspirations I began my pregnancy full of joy, knowing that this was to be my last. We scheduled our appointments and eagerly awaited the day when we would find out whether our new addition was a boy or a girl.
On March 5, 2012 at our 17 week ultrasound, our baby was diagnosed with HLHS. We were told that without surgical intervention, our baby would not live. I can still hear the doctor who said those words to me. I cried tears I never knew I had. We were politely escorted out the back door after a quick amnio was done. We left without knowing what we were having. All I knew was whatever we were having may not survive.
What is hyploplastic left heart syndrome? Did I not eat enough vegetables? Exercise long enough? Take enough folic acid? We ended up in our future cardiologists office the next day and I was reassured that nothing I did made this happen. Her little heart just didn’t form the way it was supposed to. I remember the drawing looked like a cayenne pepper. The next day I found out were expecting another girl.
Isabelle Faith was born on August 1 at the Brigham and Women’s hospital in Boston. We tried to have a natural childbirth but she wasn’t having any part of it so I ended up with another c-section. When I heard her cry for the first time, tears ran down my cheeks and I whispered “You yell, yell as loud as you can!” She was beautiful. I got to hold her for a few minutes and then they took her to the NICU. She was scheduled to head over to Children’s shortly thereafter. I saw her before she was wheeled over, and she looked so beautiful I just wanted to hold her again. My arms ached and the tears just kept coming. I started to pump in preparation for when she could eat.
I carried her to the OR for her Norwood. The anesthesiologist asked me if I felt strong. I thought he meant physically. I cried all the way down, my husband crying with me as we handed her over to Dr. Emani. A little over 4 hours later, he came out with a smile and told us how well she did. He also told us that her aortic arch was the smallest one he had ever seen in his career. Very pleased, we anxiously waited until we could go in to see her. We were in the ICU for a few days, on the floor by day 5 and we went home a week or so after that.
Interstage was marked by hospital stays and feeding issues. We went home without an NG tube, had one put in at the end of September, took it out in October and we were back at Children’s before Halloween. After 4 months of feeding hell we were referred to a GI specialist who reassured me that no, I wasn’t crazy and yes, these cardiac babies are tough eaters for good reason.
A G tube was placed right before Christmas and then we waited as plans for the Glenn began to unfold. January 14 would be the day, with a cath a few days before. She sailed through her Glenn with some headaches and a little congestion. We were very happy to see Interstage go, and we are looking forward to seeing where we land next.
Isabelle is a happy, smiley baby who is full of love and a joy of life. She truly enjoys being with us and I am so grateful we have been blessed with her. 


Our story is one of heartache, but also of profound love.  Love for one of the most special gifts ever given to us.  That special gift was named Alyssa Lorraine Kuonen.  She was named after her great grandma Lorraine who passed away while I was still pregnant with Alyssa.  In fact, it was the day of Grandma Lorraine's visitation that we found out Alyssa had a heart defect.  It was May 31, 2012 and I was 21 weeks and 1 day pregnant.  We already knew we were having a girl b/c of a prior ultrasound, but this time we brought older brother and sister along to see their baby sister.  We were already having a level 2 ultrasound so they could examine her heart b/c my husband's sister was born with Down Syndrome and a hole in her heart.  We had these done with our other two kiddos as well.  But like any parent that has received bad news about their unborn baby, we were unprepared for the news we received that day.  My husband caught on right away that something was wrong with Alyssa's heart, but I was oblivious and just answering the ultrasound techs questions like it was routine.  After spending over an hour on the ultrasound table and seeing two ultrasound techs, we then met with our OB who broke the news to us.  Our baby had a heart defect, but b/c of how she was laying and not being able to see a clear picture of her heart, they just weren't sure how severe it was.  From what they could see they thought possibly a hole in the middle of the heart between the chambers with lots of calcification.  They referred us to see a pediatric cardiologist but we had to wait a couple weeks before that appointment b/c he wanted me to be a little further along so that he could get a clearer picture of Alyssa's heart.  Our world was turned upside down on June 15, 2012.  I was 23 weeks and 2 days pregnant.  We met with the pediatric cardiologist and after a long time laying on my back while he performed a fetal echocardiogram on our daughter's heart, we received a diagnosis that would forever change our lives.  Our daughter's heart defect was nothing like described at our OB's office.  With better technology and a clearer picture of our daughter's heart, we were handed the diagnosis of Hypoplastic Left Heart Syndrome.  Our sweet baby only had half a heart.  The left side of her heart was severely underdeveloped and not functioning.  I believe the cardiologists words were, "this is one of 2 of the worst heart defects a child can have."  We were faced with the hard reality that without a series of 3 open heart surgeries before the age of 5, our daughter would not survive.  And even with the surgeries, the long term future of children with HLHS is unknown since the surgeries have only been around for a little over 20 years.  

Our precious baby girl was born on October 4, 2012.  She was absolutely beautiful and she showed all the doctor's that she had a set of lungs on her.  After holding her for a few brief minutes, she was wisked away to the NICU with Daddy right behind her.  Alyssa's Norwood operation was scheduled for October 8th.  The Norwood operation is the most complicated and risky of the 3 staged surgeries.  On the morning of the 8th, we handed our sweet baby girl off to the nurses and doctors and prayed she'd have a successful surgery.  Sadly, the Norwood had to be aborted due to the surgeon finding additional heart anomalies once inside her chest.  The surgeon and cardiologist then came out to see us to let us know that they wanted to send Alyssa to the cath lab to do a cardiac cath in order to get a clear picture of just how her heart was functioning.  The surgeon's words were "we have never seen this defect before and I feel so bad b/c I don't know what to do." He said that he would need to go to the reference books to find out what the best course of action would be in regards to repairing her heart.  Not exactly what you hope to hear from the cardiothoracic surgeon that is operating on your child.  Alyssa was then taken to the cath lab and made it through the cath procedure only for her body to start crashing shortly after that.  The full story on what happened to her sweet baby during this time can be seen on our blog.  Alyssa went into cardiac arrest and was placed on ECMO life support.  We knew that night that the outlook was not good and they were not seeing the results that they wanted to see.  We went to bed that night with heavy hearts afraid of what the next day would bring, but hoping and praying for a miracle.  On October 9th, which was also our 8th wedding anniversary, we were advised that there was nothing more they could do for our sweet Alyssa.  Her organs were shutting down, she was showing no signs of life and our sweet baby was letting go.  Alyssa was unhooked from ECMO and placed in my arms, where she passed away at the same hour and minute of her birth, 1:40pm.  She was exactly 5 days old.  

We will carry her memory with us forever and continue to share her story in a hope that it will someday make a difference in the life of another heart family.  And equally as important, that it will raise awareness for the #1 cause of infant deaths in the United States.  Once a heart family, always a heart family.  Please consider supporting CHD research, there is no cure for this horrible disease and it claims the lives of to many innocent children each year.  You don't think anything like this could ever happen to your family, until it does.  Then your world is changed forever.  To hear a more detailed account of Alyssa's journey and to learn about the many more heart defects and congenital defects our sweet girl had, please visit our blog at 

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