Tag Archives: DORV

Presenting our 15th warrior, Corbin!

Corbin’s mom, Ruth, has a very well organized blog about her pregnancy and post-pregnancy life with Corbin. I contemplated re-writing a post to include for this blog but she has written everything so perfectly that I would never dare take that away (I’m not the best writer, anyway). I am in awe of her bravery for not only writing her feelings and experiences with CHD, but for allowing me to share them here. Below are links to the stories and small excerpts from them that Ruth has posted on her beautiful blog, “The Pearl in the Oyster“.

“February 20th, 2011, I gave birth via c-section to a 6lb, 14oz little boy. Little did we know that he had serious heart defects that would require heart surgery at ten days old.
This is his story.”

Day One

“I’m wheeled down to the OR.
The staff are really friendly. I can tell they are trying to distract me by starting a conversation. I appreciate the thought, but it didn’t really help. I am VERY aware of the anesthesiologist getting the needle ready.
The first stick really stings but it works immediately. I feel a lot of pressure when the spinal goes in and feel my toes go numb in seconds.
They lay me down and start prepping my belly. Anesthesia makes me nauseous and I’m sick once.
After some big tugs and lots of pressure:
“Whaaaa!”
I, of course, start crying.
At 2:27 pm, Peanut is brought into the world. 6 pounds, 14 ounces, he is a tiny little squirt compared to my first born of 9 pounds, 4 ounces. He cries as the clean him off and wrap him up.
When I first see him, he’s really wrinkly and red. I notice he has my nose and Hubby’s eyebrows. Just like my first born….”

Days Two and Three

“Everyone tells me that heart murmurs are nothing, and not to be worried.
But I have a bad feeling about this.”

“After a couple hours, Dr, D stops by. He tells us that Peanut’s vitals are good, his blood pressure has gone down, and he and the cardiologist see nothing wrong with sending him home. He does want to see him Thursday to check his jaundice, as it is still a little high.
YAY!
So the baby is cleared, but I am not. I still have to wait on my OB to get back from Covington.”

Day Four

“”Crap” I think to myself. It’s never good when the technician won’t talk to you.
Hubby asks:
“So do you see the murmur?”
She doesn’t answer.”

Day Five

“Around 7 that evening, members from our church show up to anoint the baby with oil. I’m not sure exactly what it means (shows how often I go to church), but in a spiritual way it makes me feel better.”

Day Six

“The NICU is very quiet and dark. We walk into a room with four stations with four babies. Peanut is on the left with a doctor standing over him, running an ultrasound of his heart. She is quiet at first, consulting with her assistant.
A short while later, she motions us over and begins to explain what she is seeing.
She has a very neat Eastern European accent.”

Day Seven

“We unpack our things at “the house” then head out for dinner. I know we can eat at the house for free, but the past couple days have been so hectic we just want to get out. We get dinner at the Roadhouse. It feels good to spend time with Hubby, laughing and making fun of people like we do.
But I also feel guilt. I feel so guilty every time I laugh. Every time I smile. I tell myself “you’re not allowed to be happy! Your child is in the hospital, broken, and you are out having fun!?”
I can’t stand myself.
And in the mornings when I first wake up, I forget just for an instant, what is happening. For the tiniest nanosecond I am happy. Then it all comes back…like a slap in the face…like a knife through the heart.
I remember.
I remember why we are here. In this strange hotel. With the hospital band still around my wrist.
My son is broken.”

Days Eight and Nine

“When we get to the hospital, the nurse tells us that over night, Peanut decided he did not need his breathing tube anymore and pulled it right out!”

“At this point I start crying. But it doesn’t faze the doctor. He touches my hand, once and very lightly, then continues on explaining. I stop thinking. All I hear is: death. It’s too much. I can’t hold it in and the tears flow.”

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“This is Corbin, just hours before his first heart surgery. We got to the NICU two hours early so that we could hold him till the OR team got there. He slept so good, he was snoring. I love that memory. ♥” (from The Corbin Story Facebook page)

Surgery Day

“Before the surgery, Hubby and I came over to the NICU at 6:30 so we would be able to hold Peanut one last time. He still had a breathing tube and dozens of wires, but as long as we sat close to his bed, we could hold him. He had come off of isolation the day before so we didn’t have to wear gowns.
It was heavenly holding my baby. Once I got him situated, he was in bliss. He slept so soundly for the two hours I got to hold him; the nurses were laughing at him. He was sprawled out with one arm hanging off to the side and was snoring. They told me he hadn’t been sleeping well the past two days and he was bound to be exhausted.
No one can do it like mama.
I loved it, I could have sat there all day staring at him. He was so peaceful, breathing calmly, snoring slightly. It was perfect.”

Post-Surgery, the next few days

“I am keeping a journal so I can take notes during rounds and conversations with doctors. God knows I would never be able to remember all these medical terms on my own.
Dr. Rh, the Ped. Cardiologist, looks like Santa. He is short and round with a long beard that he likes to stroke when he is in a deep thought. Then there is Dr. M, his Intensivist (specializes in critically ill patients), Julie the Ped. Nurse Practitioner, and Dr. P, another Ped. Cardiologist.
The doctors ramble off all his numbers and stats for the night, what kind of meds he is on, and their plan for the day.
I write down quotes so I can pass them along. But only the good ones.
“ventilates great”
“stats are good for a mixer” (mixer meaning that the two holes in his heart are mixing the blood)
“better today then when he came in”
Rounds are fun! (only when the news is good of course).”

Here, Corbin’s mom explains the several severe CHDs that her son was born with: two ASDs and VSDs, Double Outlet Right Ventricle (DORV), Atrial Tachycardia, Prolonged QT, Williams Syndrome… The Diagnosis

Here is a section where Ruth includes more great explanations and more details about the several CHDs that Corbin was born with…Corbin’s Heart Defects

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“This is what Corbin’s room looked like immediately after surgery. There are two monitors keeping track of his stats, an oxygen tank, a ventilator, and 15 medicine dispensers. I wrote in my blog that it looked like the deck of a space ship. Amazing isn’t it?” (from The Corbin Story Facebook page)

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(from The Corbin Story Facebook page: “Sadly, I don’t have a picture of all 4 of us 😦 the bottom right is the only pic of I have of both the boys together and the top is the only one of my hubby and I with Corbin. I hate, hate that I don’t have more.”

The Talk

“So I knew this talk would come. I could tell by the way the doctor was looking at me that he was going to tell me there is a chance my child won’t make it. That I need to make the decision, that in the event his heart stops beating, do I want them to try and save him or let his disease take its course.
I don’t know the answer.
I don’t know what I want them to do or how I feel about it. I am still processing this and still trying to figure out my feelings.
I’m not saying this is the end of the road. I’m not saying Peanut is on his death bed. I’m just saying there is a chance that he may not make it.”

From Two, to One….

I was going to put an excerpt here, but I just couldn’t. Please click the above link…and read….

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Corbin Walker Caruthers February 20th – May 17th 2011

Once a warrior, always a warrior.

Here is Corbin’s handsome big brother:

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“He was too young to realize he had lost a brother and I am thankful for that but we do tell him about Corbin and include him in everyday talk.”

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“Wow. Just wow. My hubby surprised me with the most thoughtful and amazing gift, made by a woman he works with. I cried when I read the quote ♥” (This was an incredible Christmas present given to the family.)

Now, Corbin and his family save the lives of many other babies born in this country. His mom works tirelessly to promote Congenital Heart Defect awareness and for pulxe oximestry use in every newborn to help detect a possible underlying heart condition. She is such a strong advocate, that she and Corbin, along with her supporters who saw the reason to march forward, passed a law in Corbin’s home state of West Virginia. A law appropriately called, Corbin’s Law. Now, every newborn is screened for critical heart defects in Corbin’s home state. Corbin is saving lives one day at a time.

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The Corbin Story Fund- a non-profit fund where donations used help fund educational material, an educational class, and projects around the community. Please visit this page and support!

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The Corbin Story. Spreading CHD awareness and pulse ox screening information every day.

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He’s saving lives.

Presenting our 13th warrior, Keely!

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Look at this beautiful warrior! Her mom, Emily, has been so incredibly gracious to share her story with us here at Queen of Hearts. And we could not be more lucky. Once I immediately connected with her mom and saw the photos of Keely smiling, I couldn’t stop smiling! Infectious I tell you! I still am partial..but all CHD warriors are extra beautiful. Keely just proves that. Please read Keely’s story as told by her mom, Emily:

“Our daughter Keely was born with a numerous amount of complex Congenital Heart Defects (CHD) which effects 1 in 100 babies born. She was born with Hypoplastic Left Heart Syndrome (HLHS, meaning she has a single ventricle and most the structures on the left side of her heart are very small or underdeveloped), Pulmonary Valve Stenosis (blood is allowed to flow into the pulmonary artery but not back into the right ventricle), Ventricular Septal Defect (VSD, means not enough blood pumps from the heart into the aorta), Double Outlet Right Ventricle (DORV, meaning her aorta rises from her right ventricle instead of her left ventricle which is the normal chamber that pumps blood to the body) and a complete blockage of the AV canal. Keely also has 2 Superior Vena Cavas instead of one.

Keely was also born with “Heterotaxy Syndrome” which is a rare birth defect which involves the heart and other organs. The beginning of the word- hetero means “different” and the end- taxy means “arrangement.” In some cases of Heterotaxy Syndrome, the spleen may not work correctly or may be missing entirely. In Keely’s case, her stomach and liver were developed on the right side and she was born without a spleen. The doctors say that Heterotaxy Syndrome is what may have caused our daughter’s “unique heart.”

The doctors said that Keely will have to undergo about a minimum of 2 Open Heart Surgeries. The first Open Heart Surgery is called the “Bilateral Bidirectional Glenn Procedure” which repairs the top half of her heart and was done on March 19, 2012. The second Open Heart Surgery is called the “Fontan Procedure” which will repair the bottom half of her heart and is to be done around the time she is 2 or 3 years old.”

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Keep rocking that gorgeous smile girlfriend! You are a true warrior!

Presenting our 10th warrior, Alexia!

I connected with Alexia a few years ago through Facebook and blogging. You can read her updates at her blog “Life”. There are lots of things to love about Alexia. One of the biggest things that I love about her is her ability to connect with fellow CHD parents, letting them know that it’s okay to let your child live their life. Through Alexia, I’ve learned that it’s okay for me to let Natalie run, play, skip, jump, and wrestle her brother. Life allows her to do that, despite a heart condition. I cherish my own child’s abilities more than anything because of learning this through her. Alexia is very inspiring. She’s smart, pretty, and very unique. Like all adult survivors of congenital heart disease, Alexia is not defined by her CHDs. She has been a critical part of keeping me sane with Natalie’s diagnosis. She is selfless and full of Life. Here is her story:

“I was born December 29th,1985 at 2:35 am. I was born by C-section at 42 weeks gestation. It wasn’t until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSDs and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done.

Screen shot 2013-02-10 at 1.32.09 PMAt six months old I had the Blalock-Taussing shunt put in.
When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. It was decided that I was an excellent candidate for the repair and that was the surgery I had done in August of 1990. In 1998 I had emergency open heart surgery to replace my aortic valve. I had a very rough recovery period.
In June 2005 I was told by my cardiologist that I would need a second Aortic Valve replacement. I was starting to experience symptoms that were indicative of heart failure. The doctors wanted to do the surgery right away because my right ventricular function was still really good. In the weeks that followed it was decided that we would go with a mechanical valve this time.
Monday July 11th,2005 I arrived at the hospital at 5:30am and by 7:30am I was ready and waiting to get going. The following Tuesday, just 8 days after surgery I was released.
I have had minor issues since then but have not been hospitalized for them. I have a full life with a close family and great friends. I am getting ready to launch my own photography business and I look forward to helping people capture their memories with photographs.”

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Now that you have read Alexia’s story, please visit her Facebook page right away!

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Go send some love!

She has also created a Carepage that her mom will help update starting tomorrow. There are updates pre-surgery right now, so feel free to sign up and follow Alexia’s heart health. She’s having a catheter ablation on Monday to help ease, hopefully, erase her arrhythmias. Please send love and support for Alexia. It’s been 7 1/2 years since her last heart surgery, so as you can only imagine, it’s a good reason to want this catheterization over with and have it be successful.

Presenting our 7th warrior, Logan!

I can’t think of any better way but to kick-start CHD Awareness Week than with one of our most favorite (and handsome) survivors, Mister Logan. Our children are the same age, both started kindergarten this school year, and it’s hard to not feel the connection, let me tell you. Stefenie in quite incredible herself. I’ve gotten a wealth of information from her through the CHD journeys we share. Logan is super smart and super brave and now you can read about a real life super hero, thanks to his mom:

“Our lives were shattered with the utter of four little words, ‘I hear a murmur.’ As our pediatrician looked up from our two week old son and began to explain how I needed to take Logan down the hallway for a few tests I found myself in complete shock. In total disbelief that this was even happening I felt numb. I simply followed orders and walked down the hallway with my mom to get Logan an EKG and chest x-ray.

What was supposed to be a happy day filled with our new baby boy’s two week well child checkup, a photo session with our three year old and his baby brother and fun time with Grandma quickly turned into every parent’s worst nightmare. When the tests were complete we returned to the office to await the results. Making the phone call to my husband who was at work was not only emotional but very difficult.

In a matter of minutes your life can change forever.

Three days later we found ourselves sitting in an exam room at the Children’s Hospital, an hour and a half away from our home, reeling from the news we had just been handed. We received confirmation that something was indeed wrong with our baby’s heart but what we thought was just a Ventricular Septal Defect turned out to be much more severe. Our precious little guy not only had a VSD but he also had D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a Right Aortic Arch. All of which were killing him. His oxygen saturations at the time of his diagnosis were in the 60’s and he was in heart failure. He required immediate intervention in the pediatric cath lab to save his life. Those final moments that I rocked him before they took him into the cath lab were the most agonizing moments of my life. I was devastated by his diagnosis, fearful of the unknown and terrified of losing him.

After many tears and several hours later he came out of the cath lab and was placed in the NICU. For the next three days we were thrust into what seemed like a foreign land with a foreign language. We had to learn medical terminology, take CPR, understand Logan’s new cares and come to grips with everything his future would entail. It was overwhelming emotionally, physically and mentally. Yet we were so unbelievably thankful to have our baby boy still with us.

We were able to take Logan home for two weeks before it was time for his first heart surgery.

When Logan was five weeks old he had his first heart surgery, the BT Shunt. Handing my baby over again to the arms of strangers was incredibly hard. I was a wreck the entire time he was in surgery and praying that he would make it out. Several hours later he did and seeing him for the first time after surgery was quite traumatic. They show you pictures in a book prior to surgery to try to help you to cope with all of the things you are going to see post op but it doesn’t even come close to what it is actually going to be like. The many, many machines pumping lifesaving mediations through his body, the ventilator helping him breath, the shocking scar running down his chest, the constant beeping of monitors, chest tubes protruding from his chest, and his little lifeless body laying there unable to move or open those big brown eyes. It was absolute torture not being able to pick him up and swaddle him in my arms.

Logan spent the next 31 days in the hospital suffering many complications and setbacks along the way. He had focal seizures, bloody stools later determined to be caused by a protein allergy, breathing difficulties and a severe oral aversion that led to needing a feeding tube. Being away from our three year old son, Wyatt, for so long was hard on all of us. He came to visit on the weekends but it was so upsetting to him and us every time he had to leave. All we wanted was to be together again and once Logan was stable enough we did.

Logan was still very sick when he came home. He was on many heart medications, had severe acid reflux, a severe oral aversion and a feeding tube. We spent a lot of time the next eight months going to see our pediatrician and traveling for cardiology follow-ups.

When Logan was ten months old he had his second heart surgery, the Rastelli. This time around we were more prepared and took the speed bumps along the way post op a little better. His recovery time was much shorter despite developing a cyst behind his vocal chord that required laser removal so he could breath, trouble coming off of milrinone and a mystery infection. During the Rastelli surgeons replaced his severely stenotic pulmonary artery with a synthetic conduit. Since the conduit would not grow with him we were told to be prepared for more surgery in the future to replace it as he grows.

Brining him home from this surgery was such a huge celebration for us. It was the first time were going to be able to take him out in public, attend family gatherings and just feel like a somewhat normal family again. Six months later, however, we were quickly reminded that the world of Congenital Heart Defects can be unfair. We learned at a routine cardiology checkup that Logan’s conduit had a huge bulge in it and he was going to need a chest CT Scan to determine how serious it was. When the results came back it was confirmed that Logan needed an immediate cath to see if they could perform an intervention to buy him a little more time before he needed surgery again. We were devastated because we had originally been told to not expect surgery for a few years, not months later. Thankfully the trip to the cath lab was a success and it bought us some time.

Logan endured his third heart surgery when he was three years old to replace his conduit and remove a muscular growth from his right ventricular outflow tract. This surgery was one of the hardest for me personally. It was very different from handing over my baby that I barely knew. This was my sweet little boy who kissed me, hugged me, shared with me his sunny little personality and was the light of my life. The thought of having that ripped away from me was agonizing. But Logan once again pulled through his surgery and recovery despite suffering a surgical complication known as Dressler’s Syndrome which causes fluid to develop around the heart along with other symptoms.

Since then Logan has grown into a vibrant free-spirited six year old little boy who lives each day to the fullest. He is sweet, silly and funny. Looking at him now you would have no idea all of the things he has been through the past six years. He started kindergarten this year and has been busy making friends, something he has wanted for so long.

Every person in our family has been changed by this journey. While it has not always been easy and will continue to be something we have to battle every day in the future as Logan will require more surgeries,we wouldn’t trade it for anything. It has made us who we are, brought us all closer and taught us so much about what is really important in life.

We are incredibly thankful for each day we have been given because we know how close we came to losing everything. At the time of Logan’s birth it was not routine practice to receive a 20 week ultrasound in my OBGYN’s office to screen for heart defects. It was also not routine practice to have a newborn baby screened for heart defects before leaving the hospital using a pulse ox. Not a day goes by that I don’t think of how things could have turned out so differently because our baby came home undiagnosed with life threatening congenital heart defects. Thankfully due to the efforts of so many amazing heart moms this will one day no longer happen. Legislation has happened or is currently in the works in many states to make pulse ox screening mandatory on every single newborn. It is a wonderful feeling to know that one day no family will ever have to find out about their child’s heart condition until it is too late.

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Our family had the amazing opportunity to be filmed for a documentary on congenital heart defects called The Heart of the Matter that was produced by TMK Production and The Children’s Heart Foundation. It made its televised debut on PBS stations across the United States last summer. If you have yet to see it you can watch a trailer for the movie by visiting http://www.congenitalheartdocumentary.com/

To learn more about Logan’s journey and to follow our family’s story visit our blog at http://www.whenlifehandsyouabrokenheart.blogspot.com.”

Stefenie also has a Facebook page created for her blog. Please visit and show support and love for this incredible young man and his family.