Here is sweet Alyssa's story: Thank you for allowing Alyssa to be a part of this. It means a lot to our family.
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 atwww.ourhopefulhearts.blogs
Alyssa's Mommy- Ashley Reynolds Kuonen
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February 3rd Heart Warrior: Xavier Smith, son to Jessica Mnedoza.
Xavier's story as told by Jessica: I am a single mother my son Xavier Smith was born with a broken heart. I was not aware anything was wrong with him according to my obgyn everything was going as it was suppose to.
He was born August 11th 2012 got released August 13th 2012 from the hospital and I ended up taking him back to the ER on August 14th 2012 because he was not eating anything anymore by mouth at first I was told something was wrong with his lungs they kept checking his oxygen and couldn't believe the numbers they were getting they kept getting different machines hoping one would show better number but it didn't happened they finally realized something was really wrong.
Being we live in a really small town they got ahold of another hospital when they mentioned everything going on they knew right away what was wrong with my son they immediately started bagging him by hand for over 2 hours until they got the transport team and helicopter to us.
He was diagnosed with HLHS. Had his Norwood procedure on August 21st 2012, and his Glen on November 27th 2012. He is doing great now and I am so blessed and thankful to have him here.
**thank you for sharing Jessica. I'm not going to lie.. This was hard for me to read because my Lily was born the same day and seeing that date made my heart stop.. then seeing the same diagnosis.. that he's had his second surgery.. I can't help but think of my Lily.. I'm so glad that Xavier is doing so well- I'll just never understand why my Lily couldn't be one of the many survivors. Much love!!**
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❤Heart Awareness❤ Meet our February 4th Heart Angel: Kennedy Fallyn. ❤ Daughter to Cassie Thomas-Fuller. Born on 7/5/12 and became an angel at just 22 days old on 7/27/12.
Kennedy was born on 7/5/12 @ 3:28 p.m. She was born with a Congenital Heart Defect (CHD) called
Hypoplastic Left Heart Syndrome (HLHS) and Mitral valve Stenosis.
She had open heart surgery just 3 days after being born.
She had good and bad days but sadly, on July 27, 2012... Just 22 days after being born... Kennedy was called back to heaven. She caught NEC(renal faliure), Which is an infection of the intestines.
Kennedy was a very content beautiful baby and she never really cried. She smiled A LOT. Kennedy was 1 of 100 children that are born with a CHD.
For more of our story
http://
What do you know about Congenital Heart Disease? Did you know...
Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
Sadly.. Lily Grace, Kennedy, and so many other innocent children are one of those babies that did not live to see their first birthday! ❤❤
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