Tag Archives: pride

Presenting our 22nd warrior, Natalie!

Being pregnant with Natalie was actually pretty awesome. The nausea was still all day long, but compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along. This probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don’t switch if you don’t have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be “top notch” (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I also was using Medicaid and I can only guess that the doctor didn’t want to “overuse” it. I had to pretty much beg for an ultrasound since I hadn’t had one yet, so at 26 weeks I finally found out that Natalie was a “she”. During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her “so I hear the scans weren’t clear enough at the ultrasound” and she stated that everything was perfectly fine.

Nowadays, I know to never even take a doctor’s word as the final word when I feel uncomfortable with the answer. But at the time, I just let it slide, even though I felt frustrated, but I just knew that everything was probably..well..fine with Natalie.
The pregnancy went to full term and I had to evict Natalie by scheduled induction on April 21st, 2007- the same day as her daddy’s birthday.
The labor was fast and furious and she was born 3 1/2 -4 hours after labor was induced. She was also born with a clean bill of health and nice and pink. Apgar scores both 9, we were so ecstatic. A healthy baby girl born April 21st, 2007 at 8 lbs even and 21 inches long. Even taller than her big brother. Ha!

Every thought about our unclear sonogram photos went totally out the window. The nurses and doctors all heard Natalie’s murmur pretty soon after the birth, but we were told not to really worry because it’s so common to be born with a murmur that closes up quickly. Right before our 24 hour discharge from the hospital, the nurse who checked Natalie out said the murmur was gone and we were given the discharge papers. Home here we come! We got home and right that evening, my mom in law noticed how purple Natalie’s feet were. I was so deliriously tired that I shrugged it off as nothing serious, that “well, she has really fair skin like her daddy”. We never noticed much of the “purple spells” again so our overly exhausted brains didn’t think much of it. We followed up with our regular pediatrician for the usual few day old checkup and sure enough, our doctor heard the heart murmur loud and clear. Our doctor couldn’t believe no one caught it before we left for home a few days ago. The murmur never went away. Getting a bit concerned, our doctor gives us a referral to go and see a heart specialist at Johns Hopkins Children’s Center.

May 8th, 2007….
we were in the pediatric cardiologist’s office. Natalie’s oxygen saturation was 90%, but her weight and color were normal. At the time, I didn’t know much about the pulse ox numbers and how it worked, but now I know why they rushed to get her into the room to have her heart scanned. They knew something wasn’t right- 90% is not normal.
While scanning her heart during the echocardiogram, the doctor walks into the cramped room about 20 minutes into the test and heavily stares at the screen for a moment. He then sits down next to the tech and says “hmm..Natalie you’re even trickier than I thought”. He went from kind of concerned to really concerned. I’m sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ, drinking from her bottle. The echo had to be at least an hour.
A little bit after getting settled into the exam room, the cardiologist walks in, really stern face, sits down with me and tells me how sick Natalie is. He explains all of these medical terms..but my ears aren’t letting much of it in… neither were my eyes because the tears kept me from seeing his diagrams.. finally the tears fell so I could see the diagram he took some time to draw: something to show me exactly how Natalie’s heart looked. He explained how she wasn’t born with a right ventricle, that it wasn’t functioning at all. That she has a VSD and an ASD but those 2 defects typically came with the defect of Tricuspid Atresia and that her ASD (Atrial Septal Defect) was actually helping to keep her alive. It was so much to take in.
I was so scared to hear more, but I knew I had to hear him talk. Truth is, I wanted him to stop talking. He let me cry and even left the room for a little bit to let me cry it out. Poor James and my mom in law were sitting in the room, too. I was holding Natalie and giving her a bottle and just was in such denial that she was sick. I kept repeating that she didn’t look sick- even her fingers and feet looked nice and pink.
From the time that Natalie was diagnosed to the time that she had her 1st of a few surgeries, the doctors at Hopkins and our pediatrician all kept a really (really) close eye on Natalie. We went in for weigh-ins and pulse ox checks a few days a week at the pediatrician’s office and almost weekly at Hopkins Hospital. We spent almost everyday at a doctor’s office. My husband and I studied the anatomy of the heart and I tried my best to figure out exactly how a Tricuspid Atresia defect functioned. As a new “heart mom” I wanted to be the expert at everything- all the way from diagrams down to exactly what to expect when she’s an adult. I was terrified of having more horrible surprises. I guess that was part of my grieving process- grieving the loss of a perfectly healthy baby girl.
Even with Natalie’s cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny for a little while and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt.

The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we “beefed” Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. What a relief to have a nice chunky, big-cheeked baby girl.

(last of a few photos without her chest scars)

She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie’s scheduled heart surgery. Right after they finished, the cath doctor pulls aside in the hallway by the cath lab and tells us “well..we can’t wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change.” My husband’s jaw dropped. I remember how gray Natalie’s skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the mid 70s. It was time. If she wasn’t going to have surgery very soon, she was going to die.

On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle and focus on her upper extremities. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100% of the time with the Fontan.

 

It was a textbook case to the Hopkins medical team and it was a true miracle to us. I remember the advanced students (they called them “fellows”) who visited the PICU and each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!
By Friday, October 5th, 2007 Natalie left for home! Her surgery went perfect and her body responded perfectly to the surgery. She was sore, but the incision (scaring the crap out of me, I can’t lie) was the only most difficult part of the physical care. I was so scared to do something wrong. And hearing Natalie cry from the pain… no mom or dad wants to see their baby in real, uncomfortable pain like that. But within a week of being home, Natalie was showing tons of signs that she was handling it more easily and she was feeling more comfortable.
From the time we brought her home until 2009, we just enjoyed her. She was able to do physical therapy and Natalie finally started walking around 22 months. Her energy, everyone could tell, was pretty good! At one point during Natalie’s recovery, her cardiologist said “Natalie’s body was made for this”. It had seemed that Natalie’s body was created to cope with the lack of her other ventricle.
In April of 2009 Natalie turned 2, we moved to Colorado from Maryland. Hopkins gave us the all clear that she should be able to handle higher altitude, particularly in the lower areas, like Denver. We were told that she probably wouldn’t need her 2nd open heart surgery- The Fontan completion, until around the age of 4 or 5. We had more time to just enjoy Natalie.
The move went well, we quickly found a great new pediatrician to help us keep an eye on Natalie’s health. During the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was trying to be active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children’s Hospital of Denver in mid-September for a sedated echocardiogram. That’s when they threw a huge curve ball at us- they decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!
We had a heart catheterization scheduled for October 8th, 2009. This was a way to prepare the heart team at Children’s: to really get a closer look at her heart and past surgery.
We had another curve ball- the heart team found 3 collateral veins that had to be closed off right away. These veins grew at some point over the year or so to overcompensate for the insufficient blood flow. But instead of helping Natalie they decreased her blood flow, which is why she was getting so tired all of the time. After a night stay in the hospital, Natalie recovered well enough to go home and rest. About a week later, Natalie’s energy was THROUGH THE ROOF. She was like a totally different kid. She was jumping and running and being a crazy 2 year old. Her collateral veins were closed off with platinum so there’s always a running joke now how expensive Natalie’s insides are. The only thing missing now are diamonds, which if Natalie could have demanded diamonds she would have.

On the early morning hours of Tuesday, January 12th, 2010, we brought Natalie back to Children’s for her Fontan operation. We were so very lucky to enjoy her through Halloween, Thanksgiving, Hanukkah, New Years, but now it was time to get back down to business.
(Fontan Completion with fenestration)
Her body was ready for this operation even if us parents were not. Other than some extra “oozing” as the surgical team calls it, Natalie’s transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to “finish off” what her heart and lungs needed.
We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit “freaked out” with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too.

By Monday night on January 18th Natalie was strong enough we were all HOME. Those are 4 beautiful letters. She did need continuous oxygen for a while, but we were prepared.
Natalie recovered beautifully. It was, once again, a text book case. We were all so thrilled. Within about a week of coming home, it was so hard to get Natalie to take it easy. Her energy level was pretty great and it became tricky to keep her from hitting her incision. But her incision healed beautifully. There were even moments we were given the green light to let her have a break from the continuous O2. As you can imagine, that was like heaven to Natalie.
We used the oxygen therapy until about April and we didn’t look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week).
Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 5 year old. She’ll be turning six in 2 months! She asks about her scars once in a while and tells us that her tummy and chest scars are “cool”. She has just started to deal with comments from other children in her class and she’s learning how to deal with that. She’s also begun to ask “why me”? concerning her special heart. That’s a really tough question to answer.
To date, Natalie has about 9 visible scars from her surgeries- her “zipper” (she loves it when I call it that), chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She attends full day kindergarten, loves horses, LOVES art, My Little Pony, and  has had a Make a Wish trip to Disney World. She’s the kid, out of the 2 we have, that we’ll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker. Watch out world! Here comes your present day Shirley Temple! : ) (that comment comes from a resident at a nursing home I used to work at that called Natalie “Shirley Temple”.)
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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 5th warrior, Janelle!

We are pleased to introduce to you Miss Janelle. Or Princess Janelle. I like both. They both have a great ring to them. Amanda is Janelle’s mom and I have to tell you, these two ladies melt my heart. With every heart family I have connected with online in the huge world of CHDs, there is a distinct connection that I’ve been fortunate to make. My most favorite part about knowing this family is that Janelle and Natalie are very similar in so many ways. They both, for some reason or another, seem to thrive with the defects that they were born with. Janelle is tall (the size of at least a 6 year old and she’s not even 5 yet!) and she has amazing energy and keeps her family busy. Could you ever ask for anything better? Here is Janelle’s story as told by her mommy, Amanda:

“Our bouncy baby girl, Janelle Makenna, was born on March 31, 2008. She was full term, 8 pounds, 4 ounces, 19 3/4 inches long. Janelle scored a 9 on the APGAR. She would have gone home as a healthy baby girl had we not known the truth. She was diagnosed with a Double Inlet Left Ventricle 4 months before she was born during a routine ultrasound. She was diagnosed with four other heart defects after birth. She also has Transposition of the Great Arteries, Aortic Stenosis, Small Aorta and Coarctation of the Aorta. Her first open heart surgery (Norwood) was at a week old. Her second open heart surgery (Glenn) was at 4 months, 4 days old. The third surgery (Fontan) was at 37 months old. Janelle is a patient of Le Bonheur Childrens in Memphis, TN and UAB in Birmingham, AL She is currently seeing a cardiologist every 6 months. Her current medications are a baby aspirin every other day along with a daily Enalapril. She loves school and has many friends. Her activities include karate and gymnastics.”

Look at this beautiful kiddo:

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Janelle at 1 month old. Beautiful baby girl!

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Check her out at 6 months old! OH so adorable.

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18 months old and on the move!

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Look at how quickly she’s growing!

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Janelle at her most recent. Isn’t she amazing?

Janelle is 1 in 100. But she’s also one in a million for being so special.

Presenting our 4th warrior, Kylie!

In December 2011, while on Natalie’s Wish Trip, we had the awesome pleasure of meeting (in person!) a really amazing family in Orlando. I had connected with Tiffany, Kylie’s mom, about 2-3 years prior online and it’s one of those connections that will last a lifetime. Because this family is so similar to my own. Still unique and different, but there was something majorly similar in both of our families lives- CHD and more specifically, a diagnosis of Tricuspid Atresia with our two daughters. Kylie is one incredible warrior.
Here is Princess Kylie’s story as told by her mom, Tiffany:
“I was pregnant with my second child. Already having the boy I had dreamed of, this time I was hoping for a girl and at my routine 20 week ultrasound, my dreams came true! Being my second pregnancy I thought I was an old pro. The tech didn’t even have to tell me what the sex was, I already knew and was more excited than words can express. I’ve always heard moms telling their stories and saying “the ultrasound took longer than expected” or “they had a strange look on their face and kept going over and over again” but that didn’t seem to happen. I was sent home in the best mood. Calling family and friends and spreading the news that baby GIRL Kylie was on her way and well. Until I got an alarming call from my doctor’s office. I was told that something had been found during my ultrasound with Kylie but they wouldn’t say what. I rushed to my OBs office only to be told that her heart wasn’t quite right. I had no clue what this meant. I had a perfectly healthy child at home. How does this happen? Why me? Its got to be a mistake.
I was sent over for another ultrasound, this time at the hospital. Several doctors were there going over and over the pictures on the screen. That day, I learned that Kylie’s heart was missing its other half. This is all NEW news to us. I don’t think any parent can imagine it can happen to them until it actually happens!
I had so many ultrasounds, tests, blood drawn, everything imaginable and there was no real reason for why it happened. There was no family history and I had been to EVERY prenatal appointment. This was the first day of the rest of our lives being parents to a child with a CHD.
The one thing that sticks in my mind is that we were actually given the option to ‘terminate’ the pregnancy. AT 20 WEEKS ALONG!! Could you imagine?!? Of course, it was never an option we would even consider. So for 4 more long months we would wait to meet our daughter that “may not survive”.
I was routinely seen by a cardiologist and he kept us as up to date as possible. To this day, he has been pretty spot on with Kylie’s heart and we cannot thank him enough. We were told that she would probably get to go home with us within her first week of life. After a few ups and downs, she was! We brought her home at 7 days old. She got to learn to eat and grow. Something that’s very important for a CHDer: weight. Being that she was born at 37 weeks she was on the smaller side at 6lbs 2oz but that didn’t stop her.
At 20 days old we had to return to the hospital for what would be one of the scariest days as a parent, her first open heart surgery. Every heart surgery is different. Kylie’s first was something called the pulmonary artery band procedure. This would make the blood flow at a rate that her tiny heart could handle until it was time for her next staged operation. She came out well for such a young patient and heart-wise she did great.
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A few days after her belly started to swell and she developed Necrotizing Enterocolitis or ‘NEC’. With the change in blood flow to her lower half, her intestines went into a short of shock mode. NEC can be severe and even fatal. Thankfully it was noticed at the onset of symptoms and treatment began. Kylie did not get to eat for almost 3 weeks. They had to give time for the medicines to work and to clear out this disease. As a heart mom, we already know what its like to not be able to feed your crying, hungry baby. It was horrible. Had she not caught the NEC she probably would have been home just a week or two after her first open heart surgery.
Besides her feeding problem with milk protein allergy which lead to more doctors visits, Kylie continued to grow and gain weight. She was a healthy, CHUNKY baby!!
At 6 months old we brought her back for her second OHS called the BiDirectional Glenn Shunt. This surgery ‘prepares’ her heart for her third surgery, that completes the process.
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We brought Kylie home after just a week!!
Many doctors usually predict that kids will need their third operation after the age of 4. Kylie had her Fontan two months before she turned 3.
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This time, it was more difficult because she was older and more aware of what was going on but in less than 2 weeks we bought her home yet again!
While most children do well after the 3 repairs there’s always a chance that they do not. Kylie was on this ‘do not’ list. During the Fontan a small hole or ‘fenestration’ is left open. This really just makes it a faster recovery and easier on the heart. Usually, oxygen saturations are at least in the low 90s. Her doctor said he would give her a year for her heart to adjust and her levels to come up. Kylie’s had not really gone up above 85. It was time for ANOTHER procedure. This time it would be much easier. They can close this hole through a heart catheterization. PHEW! I was so hesitant to put her through anything else and tried to push it off as long as we could. But we could notice that she was getting more blue, her activity decreased, her weight suffered, and her numbers were dropping into the 70s. Its been about 14 months now, Kylie has just had her 4th birthday and is doing GREAT.
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At her very recent annual check up, we noticed that she has gained more weight than ever in such a short amount of time. It’s like they “flipped a hunger switch on” when they closed her fenestration. And I’m so glad we made the decision. Kylie runs and plays and keeps up with her older and younger brothers and unless we tell someone or show her scars, no one could ever imagine what she’s been through to get where she is today.
Kylie Alexis
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Born January 1st, 2009
PA Band 1/20/2009
Glenn 6/10/2009
Fontan 11/1/2011
Fenestration closure 10/17/2012
Some said she would never survive and look at her now!!
Shes 1 in 100″
Go Kylie! Keep kicking CHD’s butt! 
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Presenting our 3rd warrior, Kayden!

About 2 years ago, I had the pleasure of connecting online with Misty, mom to sweet Kayden. If there’s one thing I’ve learned from Misty, it’s that courageous moms do exist, and she’s one of them. Here is Kayden’s incredible story, so beautifully told by his mom:

“As an expecting mother we all wonder what our baby will be, we all want our babies to be healthy and usually expect that outcome we never expect the opposite. This is our heart journey of hope. I found out my baby was going to be a boy when I was about four months pregnant. The sonographer also noticed something about his face, she said it looked like he had a cleft lip which most of the time meant a cleft palate as well, so we were referred to another clinic to confirm it. At that clinic it was confirmed my son was going to be born with a cleft lip and palate, but also they noticed something about his heart and referred us to a pediatric cardiologist for a fetal echo.

At the appointment with the cardiologist, I was told my baby’s heart was enlarged and he had a valve leaking. I was told he had dilated cardiomyopathy, and Ebstein’s Anomaly. I didn’t know what really went through my head after all of that. I know I worried a lot about what could happen, I knew he would have to be on a ventilator when he was born if his breathing was very bad, I also knew we might have to travel to Charlottesville, VA for him to be born, or I knew he might just need a little oxygen if his breathing wasn’t too bad. During the rest of my pregnancy from 4 months on, I went to the cardiologist for them to follow the babies heart. On December 20, 2007 I went in labor, I had the most handsome baby boy at 1:24 a.m. On December 21, 2007, I named him Kayden James. The nurses were in a hurry to clean him up, he was okay though, his breathing wasn’t horrible so all he needed was a little oxygen to help him breathe, so we didn’t have to travel that night, and he didn’t have to be put on a ventilator. He was taken straight to the NICU due to his health conditions. Kayden stayed in the NICU for 2 weeks, over that time his heart had improved a little, the valve wasn’t leaking quite so bad, and they helped me learn to feed him since he had a cleft palate which affected the hard and soft palate.

In January at 5 weeks old Kayden was sick, he wasn’t keeping anything down and it worried me so I took him to the emergency room. They couldn’t figure out what was going on with him so they admitted him, the next morning that did an ultrasound on his stomach and said he had pyloric stenosis. I had never heard of that in my life, but the way they explained this was the muscle your food goes through to digest your food has a little hole where the food passes through, Kayden’s was too small. They did surgery to fix that, I was so scared that my 5 week old baby with a heart condition was having surgery, I didn’t know what to expect. But thankfully he came through very well. During his first year, he had two more surgeries. One was a lip adhesion and the other was to finish the lip repair. He did great with, throughout the year his heart was getting a little better which was surprising or it stayed the same, it didn’t get worse so we were all okay with that. He had his palate repaired at 13 months, he did well with that. Kayden’s cardiology appointments at this point were more spread out. He was a great child, he would clean up after his self if you asked, he liked playing outside, he has an older sister who he loved to play with. If you were to see him you would think he was a normal child with nothing wrong.

Kayden's sweet smiling face.

Kayden’s sweet smiling face.

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Kayden and his mommy.

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Thumbs up from a cool dude.

Sometime during the spring of 2009, I noticed a lump next to his right ear. I was concerned because I had never seen anything like it. We went to his pediatrician and he said it looked like a preauricular cyst. When he was born he had a tiny pit on his ear, it wasn’t noticeable unless you looked at his ear, so the cyst formed from that pit. As months went by it would get smaller or bigger, he was being seen by an ear, nose and throat doctor for it. He was getting more ear infections which wasn’t like him at all considering he had a cleft lip/palate which would have made him for at risk for them and he never had one as a baby. In June of 2010, the ear, nose and throat doctor did surgery to remove the cyst. That morning he was fine, no fever or anything, but the cyst looked like it was getting infected again but the doctor still thought it was fine to do surgery. After the surgery, the doctor came to the waiting area and said he was fine, he got all of the cyst, but he said his ears were really infected and there was a lot of drainage in them. The rest of June, he kept getting sick, it was either a cold or ear infections or the cyst was coming back and it was more infected than before. July was the same way until the end of July I noticed his feet were swollen and his appetite had decreased. I took him to the pediatrician first because he wasn’t due to see his cardiologist until September and I couldn’t get an appointment before the following week. I honestly didn’t think it was heart related because his heart had been stable for a year by then. His pediatrician checked him really well, he noticed his liver was swollen and concerned that it was affecting his heart he got Kayden’s appointment with his cardiologist moved to the next day.

That is when everything changed. I remember that day like it just happened an hour ago. His cardiologist came in the room, sat down and I could see in his face it wasn’t good. He said Kayden was in congestive heart failure. I was scared to death because I knew he might not make it. He told us to go get x-rays across the street and go straight to our PICU, not to admissions straight to the PICU. We got there and they were expecting us. That first day still seems like a blur because I was so scared and not sure what was going on I can remember bits and pieces of it, like them asking questions about his health, etc. He was transported to the University of Virginia that night. He was put on all kinds of different medications and stayed in the hospital for a little over a week. He recovered well. He came home, played outside, with the other kids, he was fine. Obviously he was followed very closely by the cardiologists and they weren’t sure what exactly to do. In November, Kayden had his first diagnostic cath done. The options were valve repair, valve replacement, or transplant. Afterwards, the cardiologist who done the cath said he didn’t think he would survive a repair of his tricuspid valve so they were thinking maybe transplant was the way to go. So they put him on another medication and got some different opinions. That’s when a cardiologist called me from Children’s Hospital Boston. They felt like they would be able to do a repair of his tricuspid valve called a cone repair and also do a bi directional glenn if he needed it. Kayden was in and out of the hospital the next few months with either anything he got basically. His surgery in Boston was scheduled for May. In February, he was in the hospital again and his cardiologist was concerned about him making it until May so he contacted Boston and got the surgery scheduled for March 17.

My babys first and only open heart surgery was on March 17, 2011. I was so scared because I knew what UVA had told me back in November. I didn’t want Kayden to see how upset I was so once I left him in the waiting area for his surgery I broke down. I didn’t know if by the end of the day I was going to have my son or not. He was in surgery for about 6 hours I think, when his surgeon came to talk to me he said Kayden done great. He came off the bypass and his heart took right over. He admitted that they thought he was going to give them more trouble than he did but my little man proved them wrong once again. He was in the hospital for 3 weeks in Boston, he recovered well. He came off the ventilator sooner than they had expected so that was a huge step for him.

When he was discharged the plan was to go to the hotel and leave the next morning. When we got there Kayden was okay for a little bit but then he was ‘wanna go home’, so that did it we left that night and drove the 13 or 14 hours back to Virginia. We were home for a few days when his oxygen dropped to the low 80s one night and he was breathing hard and not eating again. Once again we ended up at the emergency room and admitted to the PICU. He had a pleural effusion on the left side. This was a surprise, I was told usually they show up right after surgery & his showed up 3 weeks later. He was in the hospital with another chest tube in for another week. Slowly he started going downhill again, he wouldn’t eat, wouldn’t walk much, and he was needing his oxygen more often. On June 14, 2011 we went to see his cardiologist at UVA, that was the last time he would be admitted into a hospital. His heart function was worse than before his surgery in March and the repair had stopped working. The only reason they said he wasn’t worse was because of the glenn procedure. We were at the last option, transplant. So of course we were admitted and taken to the PICU, they got a central line in him to start medications and start the transplant evaluation. They had to do another catheter because in November one of the pressures in his lungs were too high and if it were still high then he wouldn’t have been a candidate for a transplant. That cath set him way back, he didn’t recover well from it but on June 28, 2011 he was listed as a 1A on the transplant list. He was intubated for a little over a week after the cath, when he came off it he said ‘no more, no more, no more’. Those were the last actual words we heard him say. He took a nap after the nurses got him cleaned up. When he woke up he was so disoriented. He couldn’t control his movements, he wasn’t talking ,and he kept looking around. I had never seen him this way in 3 and a half years. Slowly he would come out of it. He finally controlled the movements, but he still wasn’t talking. Kayden’s last week of life he had a few small events happen that I guess you could say maybe they were signs. One day his heart rate was jumping around and got as high as 215 one time, it was in the 160s-170s and finally settled in the 140s which was still high if you ask me but for some reason they wanted it high. His kidney function had went down one day from the previous day but the kidney doctor was in the room for a minute and listened to him and all he said was give him more fluids. Then on July 13 he was breathing hard, my mom was there with him and was telling the nurses, and also he was spitting up greenish colored stuff and she kept telling them about that and they didn’t do anything. They said it was medicines, I don’t believe that because I’ve seen him take medicines and vomit right after taking them and never once was it green. They listened to him all that day and they said his lungs were clear. The last time I had talked to my mom was at 11 p.m on July 13, and she said he was fine just breathing hard still. At about 1:30 on July 14, 2011 I got the worst call in the world that at first I thought was going to be the best. I saw the area code and thought YES Kayden’s got a heart. When I answered my mom said I needed to get up there we were losing him. I could not believe it I didn’t want to believe it. I got in touch with my brother who picked me up and Kayden’s two brothers and his sister and we all headed towards Charlottesville. I got another call from my mom and she said he was gone, I dropped the phone and just cried I didn’t want to believe my baby wasn’t here. He was a fighter, he couldn’t give up. The whole two hour ride was horrible I cried the hole time, but I never lost hope. I held on to every piece of hope & faith until I walked into his room and saw for myself my baby wasn’t breathing. My baby was gone. He wasn’t coming back. I never thought this thing could have happened to me, not in a million years.

My goal now is to let Kayden live on through me by helping other families who have to go down this horrible journey. One thing I want you all to do is live by what I did, always keep your faith and never lose hope. Once you do you’ll have nothing. My prayers were answered this whole time, Kayden is okay now, no matter how much I hurt and my arms ache to hold him I know he is safe and he’s no longer hurting.”

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Kayden’s balloon release.. fly high little one.

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Today is Misty’s birthday. In honor of her birthday, Kayden’s life, and for the many lives that he touched while lighting up this earth, please visit his Facebook page and show your love and support:

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Misty is also in the process of making Kayden’s memorial fund a non profit organization in honor of her son, please visit Kayden’s Kause and help support this wonderful family’s efforts and keep Kayden’s legacy going:

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Presenting our 1st Warrior, Aurora!

This year, I wanted to take things a tiny step forward with blogging. It’s a tiny step, but a step in the direction. For the entire 28 days of February, we will feature a new story of CHD warriors, warrior angels, with blogs and Facebook page links to help circulate the growing number of those affected by CHDs across the United States. And if I’m really lucky, I’ll get a few stories from across the globe. Please visit daily for stories of heartfelt struggle, inspiration, hope, and love. Welcome to Heart Month here at Queen of Hearts!

Warrior Aurora’s mom says:

“Aurora was diagnosed prenatally at 22 weeks gestation with a rare Congenital Heart Defect (CHD) called Congenitally Corrected Transposition of the Great Vessels. She will need a transplant, possibly a pacemaker. She sees a great Cardiologist at MCV (VCU Richmond) who has high hopes for her.

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Since birth on June 7th 2006, Aurora has continued to show symptoms of heart failure, such as a growing hole between the top 2 chambers of her heart, a tricuspid valve regurgitation, Stage I heart block, and unexplained arrythmias. She also has an unusually large appetite, thought to account for so many calories lost pumping a heart that doesn’t want to pump. She routinely wears portable EKG machines to closely monitor her.”

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Funny girl ; )

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Aurora with her mom and little brother.

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Aurora at her very first American Heart Association Walk in 2010!

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Aurora on her first day of school! Look at her go!

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On her first day of school.

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Doing her perfect ballerina pose : )

Here are some excellent statistics that Aurora’s mom has thoughtfully put together:

United States:
♥As many as 40 infants per 100,000 live births are affected by congenitally corrected transposition of the great vessels; this is fewer than 1% of all congenital heart defects.

International:
♥This disorder is reported in 0.5% of patients with congenital heart disease, and the literature reports fewer than 1000 cases.

Please visit (Princess, sorry she is such a true princess that it’s hard to not type that) Aurora’s Facebook page, “like”, and follow her fight with CHD.

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Aurora’s CHD Facebook page. Go like it! : )

You’ll be so glad you did. She is a courageous kiddo with a spirit that can’t be matched!