Tag Archives: the Fontan

Presenting our 27th warrior, LaShawn!


“As a family, we have been on one long journey together and have learned so much from this amazing little boy.” -LaShawn’s mom

“My son LaShawn was born in 2008 with HLHS / hypoplastic left ventricle double outlet. He is now four years old and has been thru a lot. He has a total of 14 surgerys tucked into his belt. They include four open heart surgeries. Two of those open heart surgeries included the the PA Banding (pulmonary artery banding). His first banding sliped blocking blood flow to his lungs and causing him to be placed on a vent. Three days later they had to open him up and redo the banding. LaShawn has had the Glenn Shunt at 6 months old and did much better this time and was home with in a week, growing and being active. LaShawn then had the Fontan in May of 2012. He has also had many other surgeries including cathaterizations of the heart as well. He also needed a feeding tube. He was in the hospital for 5 weeks and didn’t come home until the  tube placement was complete. He’s also had an operation to fix his feeding tube site when he no longer needed the feeding tube. He has taught us what love and pain truly are. LaShawn has taught us compassion and filled us with a need to help others in any way we can.”


A little warrior getting through open heart surgery. There is tons of fight inside this little guy.


LaShawn with his mommy : )

How beautiful is this kid? You can tell that he has a beautiful family by his side, as well. And as us members of a “heart family” know very well, support makes all of the difference. LaShawn receives strength from his biggest supporters and I can definitely attest to this- his family receives strength from LaShawn as well. Completely amazing and so inspirational. Please visit LaShawn’s Facebook support page:

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Go “like” and show some love and support!! Keep kicking CHD’s butt big guy!!

Presenting our 23rd warrior, Sydney!

…..aaaaaand… her mom, Debbie! Yes! We have two incredible CHD warriors today!

I first met Sydney and her mom, Debbie last year during the planning of The Children’s Heart Foundation‘s “Congenital Heart Walk“. They are the sweetest family. I remember feeling kind of terrified about Natalie starting full day kindergarten in August 2012. Debbie assured me how awesome Sydney did. She gave me the best advice and helped make the transition less crazy. Debbie really made me feel more prepared. August and September were really hot here in Colorado which resulted in several visits with Natalie at the school. She was having migraines and feeling extra tired due to the heat. But I handled it well because again.. Debbie made me feel prepared. I kept thinking of her advice as I would get through each day of those hot months. Before we all knew it, it was cooler and everyone stopped sweating and having migraines. I am so thankful for Debbie’s advice.

Sydney and Debbie, our family is very honored to have met you and your family. We are crazy excited about this year’s Heart Walk, and part of it is because we hope to see you all soon! : )

Here are their stories as graciously told by Debbie:
“Here’s my story:
I was born on May 27th 1975 and my parents had no idea about a heart defect.  At about 2 months of age, the pediatrician noticed a murmur and I was checked out at Children’s Hospital and they found out I had a “hole in my heart”.  Officially known as Atrial Septal Defect (ASD).  It was surgically repaired via open heart surgery when I was 3 years old.  I was followed at Children’s until I was 18 and was told I didn’t need to see a cardiologist any more.  (At least – that’s what I remember).
 (Debbie and her mom. : )
Todd and I got married in 2003 and I got pregnant in October of 2004.  At my 22 week ultrasound the doctors requested a fetal heart echo for the baby, and I didn’t think twice about it – my defect wasn’t genetic, right?  The ultrasound took forever – doctors kept saying they couldn’t get a good view.  Then the worst moment of my life happened – our baby had a severe heart defect.  Hypoplastic Right Heart Syndrome and we were told we needed to decide in 2 weeks if we wanted to terminate the pregnancy.  I had to have an amniocentesis because the rates were higher for Down’s Syndrome with heart defects.
Luckily the doctors told us to see a cardiologist at Children’s and we met Karrie Villavicencio – the most amazing doctor!  She told us we could get through this with three surgeries and she would look and act normal like any other child we saw at the heart clinic.
Sydney was born on July 27, 2005 with no complications.  The room was filled with doctors, nurses and students (it was a teaching hospital and she was a rare one).  I got to hold her for a few minutes and they took her to get her checked.  We consider ourselves very lucky because we got to take her home after 2 days in the hospital.
Sydney didn’t need her first surgery until 8 months of age.  A PA Band.
Instead of her Pulmonary Artery being too small, hers was too large.  The surgery went well and we were out of the hospital in about 5 days.  Surgery #2 came at 14 months of age – the Glenn.
(Sydney and her mommy)
It was another successful surgery and we were out of the hospital again in less than a week.
After Sydney’s second surgery I got pregnant again.  My 20 week ultrasound was nerve racking, but a cried when the technician said they could see all four chambers of his heart.  That ultrasound was nothing like Sydney’s.  We were going to have a healthy baby boy.
Logan was born in January of 2009.  And then came the last surgery for Sydney before she turned 3 (in May) – the Fontan.  The surgery went well but she contracted RSV while in the hospital – no fun.  All doctors and nurses had to gown and mask up whenever they came in the room.  We were there for 2 weeks.  Her fenestration was closed via the cath lab about a year later.
She is now a happy second grader and has very few issues.  Her last holter monitor results were great and now we are hoping her oxygen levels are going up after switching medications for pulmonary hypertension.  Karrie Villavicencio is still her cardiologist and we see her about every 4-6 months.
Sydney loves her brother and friends, is a great student and is an overall happy kid!  She loves animals, especially horses and wants to be a horse trainer when she grows up.”

(Sydney and her baby brother!)

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 16th warrior, Hannah!

Hannah CHD Warrior BIO

How amazing is this photo that Hannah’s mom, Erica, put together??

In case I didn’t enlarge it enough (WordPress is tricky like that) I’ll repost what it says:

“Hannah was born July 28, 2006 with 10 of 35 heart defects and is truly a miracle! Hannah’s has essentially a half a heart on the wrong side facing backwards with holes plumbing in all the wrong places. She also has another rare condition called Situs Inversus Totalis where all of her organs are on the opposite side. She had her first open heart surgery (Norwood) at 3 days of age here at Arnold Palmer. She came home 28 days later. She had her second surgery (Bidirectional Glenn) in January 2008, had her last of the 3 surgeries (Fontan) July 2011. Where from that point she has blossomed in her heart health! She is now medicine free and is full of energy. She loves her Mickey & Minnie, riding her bike, dancing, and has a desire to enjoy life that is truly inspiring. She loves meeting others just like her at the Precious Little Heart Meetings (support group her and I started for other kids/parents affected with CHD) and visiting her doctors and nurses up in the CVICU at APH. She loves participating in the Heart Walk and telling ANYONE about her booboos on her heart!

Share Hannah’s story and spread the word of CHD= #1 birth defect and cause of death within the first year of life. More children are born each year with CHD than ALL forms of childhood cancers combined!”

Here’s another message from Hannah’s mom (a very detailed list of her heart defects):

“HPRH = Hypoplastic Right Heart Syndrome
ASD = Atrial Septal Defect
VSD = Ventricle Septal Defect
TGA = Transposition of the Greater Arteries
PDA = Patent ductus arteriosus
Interrupted Aortic Arch
Hypoplastic Aortic Valve and Ascending Aorta
Tricuspid Atresia
Aortic Stenosis

Blood Disorder
MTHFR mutation = Methylenetetrahydro folate reductase (MTHFR) blood

Situs Inversus Totalis
– organs on the opposite side

Surgeries to Date:
Norwood 3 days old
Glenn 6 months old
Non-Fenestrated Fontan 4 year 10 months old”

What a beautiful princess warrior!! I agree with Hannah’s mom, you can tell that she has a strong thirst for life. It’s incredible. Truly incredible. Rock on, Hannah!!

Presenting our 13th warrior, Keely!

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 11th warrior, Kelsey!

There is just something extra amazing about this little girl. I met her mom, Jessica, through The Queen’s Facebook page not so long ago. But this is one of those connections, one of those families, where I wish I had made the connection a long time ago. Kelsey and Natalie have a whole lot in common and we can only appreciate it. From their defects to time spent post-op with their Glenn procedures to Kelsey having the same birth date as Natalie’s grandma..I’m telling you..it’s kismet. It’s completely awesome. Here is Kelsey’s courageous “heart story” as told by her mommy, Jessica:


“Kelsey was born November 11th, 2006. She was a whopping 8 lb 2 oz and 21 inches long. She was PERFECT. My whole pregnancy Kelsey was said to be a healthy thriving baby, which couldn’t have made me happier. But at 3 days old we noticed she was turning blue around her mouth a lot. We hadn’t yet been discharged from the hospital. The pediatrician came in to talk to me and said he was going to run some tests, but he was pretty sure it was a heart murmur and definitely heart related. She was air lifted to a hospital 30 minutes away that was more capable of caring for her. Once I arrived and spoke with the pediatric cardiologist it was determined that Kelsey had Tricuspid Atresia. She would need a series of operations to survive. Her heart and lungs were amazingly strong and we were able to forgo the first of three operations.


At one of what would be many cardiology appointments, her cardiologist told me she would need an operation once she started showing signs of lower oxygen saturation. He was right. One night after dinner I sat down to feed and change Kelsey. It was hard to wake her up. So I changed her diaper, thinking maybe she was just really tired. She woke up once she was changed, but she didn’t want her bottle. She wasn’t very lively at all. So I made the decision to take her to our emergency room. Her pulse ox was the first test and it was enough for them to say that she needed to be taken back to the Children’s Hospital. Her o2’s were in the low 60’s and she was still lethargic. We were transported via ambulance and at 3 months old Kelsey had her Glenn open heart procedure. She was such a champ. We went in on February 9th and came home on February 13th. She did so well and continued to thrive and grow for many years.

It was right before Christmas of 2009 when we noticed that Kelsey was having a hard time tolerating a lot of activity. She was now 3 years old, but was not able to keep up and run around due to her fatigue, shortness of breath, and turning blue again. We consulted with her pediatric cardiologist on the matter, he suggested a trip to the cardiac cath lab to check her pressures and if she was ready for the next surgery, the Fontan. Her pressures were great, everything was a go for the Fontan. We opted to wait until after the holidays for her surgery. It was scheduled on January 20th of 2010.


She came through surgery well, but due to scar tissue she had developed an arrhythmia. The Dr’s assured me that it would either go away on its own, or it would be controlled with drugs and a pacemaker. I was in such denial and grief. I didn’t want her to have a pacemaker. At all. I prayed against it, I wished it away, but nothing was stopping it. On January 27th, exactly a week later, Kelsey woke up at 5 a.m. with really bad arrhythmia’s. To the point of her whole face turning blue and her holding my hand as I brushed her hair back off of her face with my hand. She was miserable and it was getting worse. Once she was stable, I excused myself. The nurse told me she needed her rest more than anything. I stayed close by her room, but not in it. I let her rest most of the day.

That evening my mother and I went down to the hospital cafeteria to have dinner. I wasn’t in a mood to eat, but I tried nonetheless. Until I received a call from her nurse. Kelsey had flat lined for 10 seconds and although her heart had started back again by itself, it was for the best if she had a pacemaker immediately. So at 7:30 that night I signed a bunch of papers for her to have the surgery. I was told that it was a high risk surgery because Kelsey had been on so many drugs in the past week that when combined with anesthesia it could become lethal to her. I was scared, nervous, and so worried. I have never in all my life cried as much as I did that night as I awaited for her to come out of surgery.

Surgical waiting rooms are never fun. The one I was in, was worse. It was a pretty good-sized room, with one wall lined with phones. Nurses and techs would call to let families know how surgery was going. They were rotary style phones, the kind with a ring that was sure to send a chill up your spine. I waited through what seemed like a hundred rings before I picked one up. It was a man named Henry calling to let me know how she was doing. He was the pacemaker tech. He told me she was doing great, that she sailed right through the surgery and they were closing her as we spoke. I thanked him thousands of times and even asked again if she was okay before hanging up the phone.


Kelsey is now 3 years post op all of her operations.


Being such a big kid at her many heart checkups!


Who put those there?

She is doing remarkably well, although we are still battling arrhythmias. She has had a cardiac ablation, a cardiovert, and numerous drugs poured into her body to fight them off, but she still remains strong and resilient. She is the greatest blessing. Oh, and we got to meet Henry at our clinic appointment not long after she was able to go home. He was just as kind then as he was when he called us. He wasn’t afraid to show Kelsey how proud he was of her and how amazed he was at how far she had come.


Kelsey with her little brother : )


A fighter who’s kicking CHD’s booty.

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She is in Girl Scouts, and this spring she is going to play Tee Ball. My girl is a fighter. And I am so blessed that she is mine.”

What a fighter!!

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:

1 month

Janelle at 1 month old. Beautiful baby girl!


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

18 months

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.
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.
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.
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
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! 

Presenting our 2nd warrior, Lauren!

I have to give a little back story on how I met Lauren Bednarz in 2007. Although we have yet to meet in person (oh one day I hope!), Lauren was the first adult CHD survivor to ever reach out to me on the internet. Boy am I glad she did. Fresh from hearing our newborn daughter’s CHD diagnosis and full of anxiety, confusion, disbelief, and an ear full of CHD survival stories where many survivors didn’t survive long enough, I was shocked to meet this beautiful, intelligent, and remarkable 20-something. She has constantly provided our family and MANY others with hope, information, and selfless sharing of her life experiences; priceless gifts in a world of unknowns. It’s natural for us “heart parents” to want to compare our own children to a 20-something survivor’s life. It’s too easy. But Lauren has affected our family in a way that will forever make it’s mark: she is unique and she is not only about her CHD. She is way more than that. She is one of my most special friends who now just happens to have half of a heart. We love you Lauren. Now here is her story from her own words:

“I was born in August of 1987, supposedly a healthy baby girl. I was taken home and thrived. A few weeks after coming home I started to display some things that worried my parents. I was throwing up everything I ateand was developing a rash all over my body. My mom took me to my pediatrician and they told her “I was fine”. My mom knew I wasn’t. Not only her second child, but my mom was a dietitian and had some medical knowledge; she knew something was wrong. My mom took me to the pediatrician’s once a week for 6 weeks, yet the doctors still insisted I was fine, just a mucousybaby. One morning when I was 11 weeks old my mom found that I was breathing very heavy and turning bluish-gray around my mouth. She took me to my pediatricianagain and demanded a local hospital to admit me (back then my parents were on health insurance that you needed a request for admittance for tests by the primary doctor). My pediatrician and a nurse checked me over, again… this time they heard a murmur so finally they agreed I needed testing done. I was rushed to the nearest ER and an on call intern who looked at me first just had learned all about Congenital Heart Defects, so he knew it was most likely my heart. I was taken to get a chest x-rays and when he came back said that my heart was very enlarged and most of the right side of my heart was missing. Children’s hospital was called and an ambulance got ready to take me. Once my mom was told what was going on; she called my dad who came from work right away as well as my grandparents. My mom was not allowed to ride in the ambulance due to not enough room. They told my parents I was in severe heart failure and they didn’t know if I’d make it to the hospital. My parents had been thrown into every parent’s WORST nightmare!!

I made it to the hospital and was stabilized. My cardiologist (well the one I had the first 22 years of my life), told my parents I have a Congenital Heart Defect called Tricuspid AtresiaHypoplastic Right Ventricle (which simply means I only had one working ventricle (my left) or half a working heart) and that I had to have an emergency heart cauterization to re-rip a hole in my heart so blood could flow better. My cardiologist was kind and caring to my parents. I was sent home a few days later on a few medications and a special formula which consisted of concentrated Isomil with polycoseadded (basically formula with tons of calories/fat added)so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age! My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me it took about an hour for one ounce and she needed to feed me every hour with a syringe. I still very sick and due to a late diagnosis my Pulmonary Artery was about 3-4 times the size it should be, but could not be fixed till I was stronger. That Pulmonary Artery could have popped at any time before my first open heart surgery and would have killed me. Looking at pictures you would never know how sick I was. If that wasn’t a big enough task to take care of me, my parents had my older brother, Ryan, to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. Of course Ryan adored me so it was hard to keep him away from me. It wasn’t easy for them, but they had family to help out and support them. My parents kept strong for me and held onto faith that I would be ok. My parents didn’t want to accept that something might happen to me.

In early February of 1988 I had my first open heart surgery called the Pulmonary Artery banding. It was to help the blood flow in my heart and lungs until I was old enough to have a procedure called the Fontan. The surgery went well. Though it was successful in its purpose it didn’t make it any easier on my parents and family. I was still a sick little baby, but my parents never lost hope that I would be ok! As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well!Soon after returning home I got dangerously sick with RSV! I was taken back to Children’s Hospital andadmitted. I spent a few weeks recovering from RSV on lots of medication. My dad tells me my crib has a bubble thingy over it to help me breathe and for breathing treatments (I don’t know the proper name for it). After returning home from recovering, everything went well and my parents as well as my older brother adjusted. I was born with other medical issues, one is an eye muscle disease called Estropia (“Crossed Eyes”), I did patch therapy as a baby and then had my first eye muscle surgery at 18 months old; which was during the time in between my two open heart surgeries. Despite everything, I was a happy baby and smiled a lot!

Lauren with her mom, Suzanne ; )

On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Modified Fontan Palliation. It had only been a month before during a heart cauterization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me. The Fontan was a surgery still a fairly new operation (about 15yrs old). This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well. About a 50-60% of me surviving with my specific case waswhat the doctors bluntly told my parents, but my parents hung onto all positives. My parents had a lot of faith in the doctors and God that I would come out ok. I cameout of surgery ok, I was alive! As far as complications that I had from this surgery, I had a chest tube issue (they had to put it back in while my parents held me down as they didn’t have enough nurses around at the time), a SVT/very fast heart rate scare where I coded, apacemaker scare (never got one though, I’m very grateful for that) and I was put on a special diet (medium chain triglyceride diet). All things considered, I did pretty well with recovery. I was discharged from the hospital exactly one month after my surgery which was four days before Christmas 1989. My family had every reason to celebrate. I did too! I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive. What more could my parents and family want?

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Lauren at age 2, in the 80s, recovering from the Fontan in the hospital.

After that second surgery I was as healthy you can be having severe heart condition or “half a heart”. I had years in between the second surgery and any minor concerns. I went to my cardiologist once a year and was on a few medications, other than that I was doing great. I had another eye muscle surgery when I was 8, I got four stitches in the my bottom lip from getting hit be a swing when I was 8.

I got a little brother, named Aaron, when I was 11 years old and that was wonderful; I’d hold him as much as I could. Aaron and I are very close. When I was six my mom got me into acting classes; she signed me up to the family theater in our city. I was in plays till I was twelve when the family theatre group closed. I enjoyed being on stage and it made me feel on top of the world. It is something I will always remember; even my mom was in the plays with me! For my parents and family to see me up on stage happy and alive was so extremely exciting for them. I bowled, started at age 5, which I loved and years later I ended up being on my high school girlsvarsity bowling team. I enjoyed playing with my little brother, Aaron, as well as watching my older brother, Ryan’s, basketball and baseball games. Both my brothers have always been loving and supportive to me.

I was a pretty “normal” child and teenager in most aspects (I did have some limitations though) and for the most part I was a very happy child that loved to talk, to people I knew anyways (I was shy around people I didn’t know). Socially I had some trouble and go teased a lot (I was shy, had glasses, couldn’t keep up with other kids during gym/recess and was not allowed to play contact sports), but I did end up making a friend or two which is all I really needed to be happy. Even in tough times I tried to have a positive outlook and have a smile on my face. I loved to write and still do, I have always enjoyed talking, and many of the simple things in life. Unless you knew I had a severe heart condition, than you probably could not tell other than the scars on my chest. My parents were open and honest about my heart my whole life, even when I was young. They always explained things to me in age appropriate ways and only what I needed to know. My mom would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away. I became very good at this. Though by age 10, I knew the name of my heart condition, that I’ve had open heart surgeries, what medications I take, etc, but I just did not know the all the seriousness of it. My parents always supported and encouraged me. They always would let me know how special I was and God had big plans for me. I was very Myparents never let me give up on things and gave me a pretty “normal” childhood. I’m thankful for that!

At age 14 I was diagnosed with yet another medical issue, congenital scoliosis, meaning I was born with an extra vertebrae in my back and hips not aligned that caused mild to moderate scoliosis of my back. My back is monitored, but because of my heart, not much can be done. I can get bad back pain, but it something I live with and I try not to have it get in the way of living my life.

It wasn’t till the summer I turned 16 where my health changed for me; it was a turning point so to speak. I broke out into hives all over my body for no reason early one morning and I was so scared. I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong. I was in so much pain because the hives were on my joints too and it was hard to move. Finally, after three months of steroids, being off my heart medications, and being watched 24/7 the hives went away and to this day no one has a clue what happened. From then I realized that anything can happen and I was so grateful and blessed for what I have. I held onto my faith in God, but there were times I questioned everything (and I still do sometimes), but I try to find peace. Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted.

I was diagnosed with exercise and stress induced SuperaVentricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and I’m on a low dose of a beta-blocker for that (which calms the vessels in my heart so it doesn’t race). When I first got the symptoms of the SVT’s it was scary for me. I had night sweats, bad chest pain, hard to breath, and harder to do daily activates. I was so scared that I didn’t even tell my parents right away, I know now that I should have and I should ALWAYS tell someone if something isn’t right, but it was hard for me to accept that something was wrong. Since the beta-blockers I have been SO much better, but I still struggle with on and off chest pain. It can get frustrating, but I deal with it the best way I can. Since then, I’ve also been diagnosed with muscle spasms (a year ago), mostly on the left side of my body that is usually stress or anxiety induced. I had my third eye surgery in July of 2008 and all went well. I’ve had one trip to the ER of Children’s in July of 2009 due to bad food poisoning. Since 2010, I’ve been having issues with weird heart beats and some minor heart rate issues, I wore a 30 day heart monitor in Sept. 2011 and it didn’t find anything too concerning, just some non harmful palpitations.

Every day I have little reminders that I have a CHD; from my scars to my medications to my on and off pain to getting tired easily. They remind me that each day I’m ever so blessed and grateful to be alive. These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind. This CHD has impacted my personality in many ways. My CHD has helped in my very emotional personality, my stubbornness, my bluntness about things, my kindness, and my care for others. It has taught me to be more understanding of people around me, has taught me not to take life for granted, to love the people you care about with all you heart, and to enjoy the simple things in life. It has given me a motivation to help others and to always have faith. I’m thankful for my life; I’ve been very blessed in so many ways. I have two parents who have done SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them VERY much!! I also have a wonderful family including two grandparents, two brothers, and a niece who I love dearly!! I also have an amazing husband, named Christopher, whom I love so much!! Chris is my rock and best friend. I also achieved my goal of graduating college! I graduated college with a BA in Psychology in 2011. I have big plans for my future including publishing my own book. Though I have a tendency to think negatively sometimes, I’ve been trying my hardest to think more positively!

I will keep spreading CHD Awareness and telling my story!! I have LOTS of Hope that ONE DAY CHDs will be more publicized and researched so that more children will be saved!! My CHD will never go away, but I will take what I can from it and keep living my life to the fullest with lots of smiles, laughs, love, and special memories. I try not to let me CHD define me because I’m so much more than a CHD. I LOVE my life and I consider my mended heart a gift!!”

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Beautiful Lauren with her handsome new husband, Chris.

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Please support Lauren by visiting her blog, Lauren’s Heart: Hope~Love~Faith also her and Facebook page:

Lauren’s Heart: Living a Full Life With ‘Half a Heart’

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January 13th, 2010.. surgical log

Day 2.. January 13th, 2010

“I’m writing this while I watch you peacefully sleep on 1-13-2010. I day (almost 24 hours) after your Fontan operation. You slept more at 5 months of age with your Glenn that shocks me now with your age of 2 1/2 and having such a complicated operation. You fight your sleep more now. With your Glenn Shunt you did AMAZING (underlined). I remember MANY of your wires coming out by Wednesday, the 3rd day of recovery. Then on Thursday your 2 drainage tubes came out successfully. I wish I hadn’t seen them do it because you were in so much pain 😦 But like always you handled it like a champ.”

post op medications….

“Zantac, Lasix, Morphine, Heparin, Tylenol, Albumin”

still Day 2..2nd entry of 1-13-2010

“You are AMAZING my dear!! Truly amazing. As of now at your age, you have no idea how strong and feisty you are. At home your feistiness would frustrate me, but that’s now what’s going to get you home faster. Your nurses are awesome. They are so good with you. Many of your responses to their questions is “NO” and “ALL DONE!!” You also told me today that you will punch me. Honestly, anything that makes you feel better then do it. You came off of the ventilator at about 6:45pm yesterday. They tried sooner but you were so upset that you held your breath! We’re almost 24 hours post-op and you are (like I just knew) “wowing” everyone with how quickly you’re recovering. You do say “huggie Mommy huggie!!” often for me to hold you and that makes me so sad. But I know that in a few days, your wish will come true. Right now at 2:30pm 1/13/10 you are sleeping peacefully to the sounds of Cinderella. Thank god you’re sleeping because last night you barely slept at all.”