Tag Archives: TGA

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
Dextrocardia
Aortic Stenosis

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

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 Valentine’s Day warrior, Reid!

Can you believe that it’s already Valentine’s Day? I don’t know about you all, but seeing the color red and seeing the cheerfulness spread in a classroom of kindergarteners and 1st graders this afternoon was enough to make me start loving “Heart Day” more than Christmas! For all of us folks who love someone with congenital heart disease, the shape of a heart and the color red have an even bigger meaning for us now. They resemble something of a much bigger meaning. Speaking of  “Heart Day”, check out this special cute package that is named, Reid:

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Now THAT’S a sweetheart for Valentine’s Day. Reid’s mom, Monica, says you’re welcome. Please read Reid’s story that has been so thoughtfully and courageously put together by his mama:

“Reid Landon was born March 29, 2012. My OB ended up inducing (03/28/2012) me due to Reid heart rate dropping while we were being monitored at my OB’s office. There were issues throughout the inducement because Reid’s heart rate kept dropping, so they would back off the inducement medication. Finally 14 hours later it was time to push, when Reid was born he had the cord wrapped around his neck, his arm & his torso. He was so blue/purple! I was totally freaked out. I was able to see him for approximately 5 minutes then I was taken into surgery to get my tubes tied. While I was gone my son & his wife, my oldest daughter & my father were with Reid. Later Reid’s family doctor came to see him & gave him a clean bill of health.

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We went home & Reid was diagnosed with allergies at 4 months of age, which I thought was weird but I trusted Reid’s Doctor so I started giving him the allergy medicine his Doctor prescribed even though it didn’t seem to help with the wheezing. Then a week before Reid turned 7 months old his wheezing got so bad it sounded to me like he had pneumonia, so I took him in to see his doctor which agreed with my diagnosis….. He sent us to get a chest x-ray to confirm & to decide if it was bacterial or viral pneumonia. We were sent home & told Reid’s doctor would contact me with the results. Approximately 3 hours later I received call from Reid’s doctor’s nurse… Who told me Reid did have Bacterial Pneumonia & put him on antibiotics and then casually she told me, Oh by the way, Dr…. noticed in Reid’s chest x-ray that he has an enlarged heart!!! (So I AM TOTALLY FREAKING OUT AT THIS POINT) the nurse still sounds like she is telling me that my son has green eyes, not that something major may be wrong with my child!!! So they get an appointment scheduled for Reid to go see a cardiologist at Primary Children’s Hospital in Salt Lake City, Utah. When she called back with our appointment information, she told me they didn’t believe there was anything wrong with Reid & that it was only precautionary they were sending him! (I AM STILL TOTALLY FREAKING OUT).

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Reid’s appointment with his Cardiologist wasn’t even a week from his “pneumonia appointment”. We (Reid, his Momma – Monica, his grandfather – Mike & his sister – Allyssa) went to this appointment. They did an EKG & the Cardiologist listened to Reid’s heart & then he sent us to get an Echo done. After 3 hours getting an Echo I started to freak out again, thinking that this seemed like a really really long time! After Echo was finally done we were moved from one room to another & then another. At which time I KNEW something was wrong. The Cardiologist finally came in & sat down with us & said, there is A LOT WE NEED TO TALK ABOUT, BE PREPARED THERE IS A LOT OF THINGS WRONG WITH YOUR SON’S HEART! My heart dropped & I felt like I was going to die that very moment. The Cardiologist was wonderful in going slowly & explaining everything in great detail. Reid’s Doctor then explained that my precious baby boy had multiple diagnosis, as followed; 1) Tricuspid Atresia, 2) ASD, 3) VSD, 4) Transposition of the Great Arteries, 5) Mild Hypoplasia of the Aortic Arch, 6) Pulmonary Hypertension. We were all in total shock. His plan at that point was to do a Cardiac Catheter in 2 days & then do his 1st Open Heart Surgery at the end of the week. We left & a few hours later I received a call from Reid’s Cardiologist saying that he discussed things with his Surgeon & they decided that I needed to bring Reid back that day to get labs done & that the very next morning at 6 am Reid would have his 1st Open Heart Surgery. Wow was I in total Shock…

We stayed the night in Salt Lake City because we live 70 miles away & 6 am is very early with the NPO issues. Reid had his Pulmonary Artery banded to reduce the blood flow going to his lungs. The surgery went very well. They called to let me & my father to go in the CICU to see Reid. As I touched Reid’s hand, he started to hold his breath due to the pain & then his oxygen saturations dropped, his heart rate dropped & Code Blue was called. We jumped out of the way while we witness all the medical staff working on my beautiful little man!! If my father hadn’t been there I definitely would have been on the floor. They had to do chest compressions & had to put him back on the ventilator. A Fellow inserted the tube in Reid’s throat. Things then calmed down so that the doctors could talk to us & explain what was going on & what to expect as we moved forward.

Reid was on the ventilator for 4 very long days & was in the hospital for a total of 10 days. Every step was scary & hard especially seeing how I’d just found out about Reid’s CHD’s so recently.

Everything was starting to be a routine with his medications & a very strict schedule to make things as stable as possible for Reid. I started looking back at pictures & researching his defects & realized if I would have been more aware of CHD I would have possibly been able to get Reid help earlier in his life. The things I noticed; his complexion was grayish; especially his lips, he would tire out would tire out while he was eating & end up falling asleep, while eating he would sweat A LOT, he would eat a lot more frequently than any of my other children, his heart beat was hard & faster than I thought was normal, & he was ALWAYS wheezing. I looked back at all the pictures that were taken the day he was born. While I was getting my tubes tied my other children were with Reid & holding him & taking pictures. In the pictures Reid was hooked up to an Oxygen Saturation Machine. In these pictures you can see the readings which ranged from 83 to 87. I was NEVER made aware there was an issue!!

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On January 17, 2013 Reid was scheduled to get a Cardiac Catheter to measure the pressures in his lungs to decide if we could proceed & have the Glenn Surgery done. The results from the Cath indicated that we were good to proceed & one of his doctors said we would probably proceed with surgery within the next 4 weeks. On January 19, 2013 in the morning I had noticed that Reid had been coughing & at this point really having hard time breathing. Fearing the worst I took him to our local hospital (very reluctant due to them not finding his CHD at birth) they tested him twice for RSV. The first test came back negative but the second one was positive & due to Reid’s Cardiac issues the transferred us to Primary Children’s Hospital. We were transported by Ambulance & admitted. Reid spent 11 days in the hospital for RSV. Due to RSV his Glenn Surgery has been pushed back 6 weeks, so that his lungs can fully heal.

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CHD week means so much to our family!! I was excited to be able to share Reid’s Story. Please watch for any warning signs & get checked if you are concerned. Reid is a huge example that NOT ALL CHD are diagnosed during pregnancy or after birth. We are just grateful that all his defects worked together to keep him alive. I have created a page for Reid for prayer warriors to see what is going on with Reid & his family: ‘My Miracle Baby Reid Landon’

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All too many precious lives like Reid’s are in danger of undiagnosed CHDs. In honor of babies like Reid and all over the world (and Valentine’s Day!) here is an excellent photo to memorize:

(to learn more, visit http://pulseoxadvocacy.com/ and http://thecorbinstory.blogspot.com/p/pulse-ox-learn-more.html)


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Presenting our 9th warrior, Eli!

As CHD Awareness Week is in full effect and photos of red hearts are splashed across my Facebook newsfeed right now, it’s becoming more and more clear that connections are being made and they are meaningful. Jessica is Eli’s mom and she has been an incredible part of the connections that I’ve been so lucky to make since starting this blog. Meeting wonderful people like her is why I do what I do and why I want to do way more. Her family inspires hope and faith (and even some humor..which I LOVE) in this confusing and overwhelming world of heart defects. And she blogs! Please visit “With Every Little Beat” and congratulate her on keeping her cool with having 2 boys AND for achieving her state’s CHD Awareness Week proclamation with the Mayor! And here is Jessica telling Eli’s story:

“Eli was born October 27, 2010 after an uneventful pregnancy. He was 8lbs 12oz, 21 ½ inches long. He had chubby cheeks and a bottom lip that quivered with his cries. Our first few weeks as a family of four were full of happiness.

Eli's Hospital picture - WM

Eli’s hospital photo. : )

As time went by, there were a few things we noticed about Eli that just didn’t quite add up.  Individually, nothing was of major concern, but as we were making a list of things to talk about at his 2 month check up, the combination was worrisome.  At the doctor’s office, the first thing they did was weigh him.  When the scales showed 8lbs 5oz, I insisted the scales be zeroed and to reweigh him.  Unfortunately we got the same answer; at exactly 10 weeks old he was 7 ounces less than his birth weight. 

Something was seriously wrong with our baby.  

We initially thought it was a gastrointestinal (GI) problem because of the weight loss accompanied by some of the things we had on our “list.”  A chest x-ray was done and it showed an enlarged heart.  That could have been secondary to a GI problem or it could be a cardiac issue.  Further testing would reveal more answers.  It was decided to transfer him that night to a larger facility an hour away so we would have more availability to specialists as we worked through this puzzle.  Eli was taken by ambulance with a Pediatric Intensive Care RN, a respiratory therapist and an EMT.  Bryan and I went home to pack a few more items since we’d be an hour away from home instead of 5 minutes.  We also needed to see Zachary (our older son who was 3 at the time) before we left.

Eli arrived about midnight and Bryan & I got there shortly after.  He was stable and testing was scheduled for the morning.  Unfortunately his heart rate dropped several times in the night and it was decided to proceed with the echocardiogram at 3am.  The pediatric cardiologist examined him for a long time. Then she sat us down and started drawing pictures.  The first was a picture of a normal heart and its blood flow.  Then she drew Eli’s heart; drastic differences.

Under her recommendation, Eli was transferred by helicopter that afternoon to Peyton Manning Children’s Hospital at St. Vincent in Indianapolis.  We had heard of it and also figured she did this more than we did, so we’d go with what she suggested. Eli arrived before we did. By the time we got there he had been admitted (his third hospital in less than 24 hours!), had a bath (he threw up after the flight) and had been seen by the PICU intensivist and two pediatric cardiologists.  Another echo had been done and the doctors were ready to talk to us about their findings.  Eli was born with multiple heart defects:  Tricuspid AtresiaVSDTransposition of the Great Vessels, and Coarctation of the Aorta.

Basically our little boy was dying and our only chance was open heart surgery.  All this was on Thursday.  The cardiologists & surgeon had developed a specific surgical plan by Saturday and surgery was scheduled for Monday, January 10.

We met his surgeon, Dr. Simon Abraham the day before surgery. When we met, we all shook hands. To this day I remember the chill that went through my body as I touched his hand…the hand in which we were placing what was left of our baby’s life.

He was very thorough about the risks and problems we were facing.  The surgery (a modified Norwood) is very complicated and risky, but even more so for Eli.  We were told most babies with his defects are diagnosed during pregnancy.  The few that aren’t usually have problems at birth and are diagnosed within hours of delivery.  The longest anyone we spoke with could remember a baby surviving at home before being diagnosed was 5 days, and medical personnel were amazed at that.  Eli was 10 weeks old.  They couldn’t believe he was without symptoms for that long.  You would think that being a little older would be an advantage before surgery, but not in this case.  It was actually complicating things because his heart had worked wrong for so long and was so enlarged.  His condition was rapidly deteriorating.  There were major differences between the Eli we saw in Indy from the Eli we had at home just a few days prior.

Zachary was with us for a few hours on Sunday and gave Eli (and us!) lots of kisses.  Then he was taken back to Washington and we spent the night saying goodbye to our baby who was still so perfect in our eyes.  Dr. Abraham had said there was a 1 in 3 chance Eli would not make it out of the operating room. Of course we were hoping & praying for the best, but we had to prepare ourselves for the worst.  Even if he made it out, we were told he’d be on ECMO, a machine that acts as his heart and lungs and pumps his blood for him so his organs can rest.  Our prayers were beyond answered when Eli made it out of surgery & was NOT on the machine.  His heart was beating on its own.  He was on a ventilator and had 493,271 tubes & wires attached to him, but we didn’t see any of that.  We only saw that perfect baby boy whose chest was moving with his own beating heart.

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Hours after Eli’s Norwood procedure. We were so happy he was alive that we barely saw all the equipment for our sweet little baby.

He was off the ventilator by Thursday night.  He was out of the PICU and in a regular room eight days after surgery.  We left the hospital exactly 3 weeks after he flew there.  Our original expectation was to be in PICU for 3 weeks.  I guess Eli didn’t get that memo!  The only “complication” was that he didn’t want to eat.  He only wanted his pacifier.  We had to feed him through a tube that went into his nose, down his throat & into his stomach.  Bryan & I changed that weekly for a while, but opted for another surgery in February to place a feeding tube directly into his stomach.  That was a tough decision for us at first, but now we know, without a doubt, we did the right thing. 

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Eli being held by Cody Zeller (current Indiana University big man) after Cody’s high school team won regional his senior year.

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Feb 11, 2011, a few days before surgery to place his feeding tube. The nurses always talked about how “laid back” Eli’s demeanor usually was. He’s the only 3 month old I’ve seen lay with both hands behind his head and ankles crossed.

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September 7, 2011 a few days after Eli’s Glenn surgery.

Eli’s second heart surgery was on September 1, 2011.  That was his Glenn or Hemi-Fontan. Eli was so much healthier going into this surgery and, of the three he will require, this one is the “easiest.”  The risk of death was estimated to be 1-2%.  Of course we were still worried, but also felt that he was as ready as he could be for it.  Again, he did wonderfully.  He was off the ventilator 12 hours after surgery (actually a little longer than they had estimated he would need it).  He did have some fluid on his lungs, but that was taken care of by medicine so we didn’t have to place a chest tube to drain it.  His heart rhythm changed during surgery, so a temporary pacemaker was placed while he was in the OR. Eli’s heart was in a junctional rhythm.  During his recovery, he would return to a junctional rhythm every time the pacemaker was turned off.  It’s something one can live with, but it’s not ideal, especially for a baby with only one working ventricle.  As of now he’s still in a junctional rhythm. The only way to fix that is with a pacemaker. Overall his recovery from the second surgery was great.  Surgery was on the 1st and he was home on the 9th.  It would have been sooner if not for the heart rhythm issue.  

Later this month, Eli will have another echo and EKG to determine when his Fontan completion will be. His oxygen saturation is consistently in the mid 70s these days and he’s been steadily gaining weight. Right now we’re guessing his surgery will be in the spring or possibly summer 2013. He will have the pacemaker placed at that time as well.

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Eli’s 1st Birthday photo! Yea, we didn’t know if we’d see this day or not and here we are!

To look at him, you’d never know what he’s been through. You’d never know how special his heart is. You’d never know how many hours of physical, speech, and occupational therapies he’s had because he’s now walking, talking, and eating like most other two year olds. You’d never know how many people and prayers it’s taken just to have him with us today. If you saw him today, you would see a chubby cheeked two year old who adores his five year old brother. You’d see a beautiful brown eyed boy with an infectious laugh and feisty streak a mile wide (we think that feistiness a big reason he’s done so well!). You would see Eli, not his defects. But believe me, they are there.

Eli’s defects are not correctable. The goal with these three surgeries is to make his heart as functional as possible for as long as possible. We are buying time. He will probably require a heart transplant at some point, which brings along a whole new set of concerns when/if that happens. We’re hoping for more advances in the field of pediatric cardiology that would allow for other options, thereby postponing or eliminating the need for a transplant.

Receiving the Proclamation-WM

Receiving the Proclamation for CHD Awareness Week from our mayor!

It’s been a quick two years for us, full of stress and tears, but also full of achievement, growth, renewed faith, and lots of learning. These precious boys are our life.  It’s surprising and comforting how our love for them continues to grow…..With Every Little Beat……”

And now, hope over to Eli’s freshly pressed Facebook page! It’s called: Eli’s MVPs! How cute is that?? Let’s spread CHD awareness like crazy and help to support this loving family!

Presenting our 8th warrior, Owen!

741151_149094351909337_1110414223_oOh Mister Owen, you make our hearts melt. Is it okay if I nibble your cheek? Ok, I won’t but I want to! Not too long ago I came across this cutie on the Facebook. Immediately, I thought “Why are all of these battling CHD warriors so adorable? They seem to be the best looking kids. Maybe I’m just partial.” Maybe I AM just partial and I don’t care. Because look at those eyes! Blue as they ocean, they say. That face! This warrior is incredible. Here is Owen’s story, bravely told by his mom, Cassie:

“Kevin [Owen’s daddy] and I went to grade – high school together. We started dating my Junior year and Kevin’s Senior of high school.  Kevin asked me to marry him in May of 2009 and July 9, 2011 we were wed.  We decided we were going to not really try and not really prevent after we were married and three short weeks later, we found out we were pregnant with our little Owen.  The first trimester was rough, I was on and off pelvic rest because of bleeding and we were trying our hardest to keep it a secret until at least the 12th week, although I don’t think we were very good at that!
Then came time for our 20 week anatomy ultrasound, that’s when we found out we were having a boy.  The tech couldn’t get a good view of Owen’s heart, which we didn’t think anything of at the time, so they scheduled a second anatomy ultrasound for about a month later.  Our second ultrasound came around and they still couldn’t get a good view of his heart and referred us to Dr. Hayes, a high risk OB/GYN in Green Bay.  Again, we weren’t too worried, no one had said a word to us about anything looking different, however looking back we now know that “we aren’t getting a good view of baby’s heart” was code for “I can see the heart, but it isn’t normal.”

A week later we met with Dr. Haye’s and had a third anatomical ultrasound. We had three different techs come in to see what was going on and the last one brought Dr. Haye’s in.  So here Kevin and I are sitting in this little dark room while my stomach was being probed and guked up by ultrasound gel hearing the words “unusual”, “that’s strange”, “abnormal”, “stenotic”.  Our panic level rose a great deal and I began to freak out asking if something was wrong with our baby.  Immediately the doctor straightened up and the tech stopped and started cleaning up all the disgusting goop she and two others lobbed on my abdomen.  Dr Hayes said “we will discuss the results in my office in a few minutes” and he left the room. The tech kept sighing and giving us looks of pity until a nurse came in and brought us to a little room with an overused leather love seat and an empty book shelf.

I was so upset and worried that I couldn’t think or see straight, what was only 5 minutes of waiting seemed like 5 hours.  When we were summoned to his office he had this plastic model of the heart and he said “your baby has a hole in his ventricular septum and will need open heart surgery” It was like a foreign language, I had no idea what he was talking about. He continued to go on about valves and ventricles and blood flow, but I was not processing anything.  Then he said they couldn’t do anything for us there and handed us a little pamphlet from Children’s hospital and their Fetal Concerns Program and told us they would call and have us enrolled and someone would call to schedule an appointment for a fetal echo and an ultrasound.

It was three weeks before we went down to Children’s hospital and those three weeks were full of buckets of tears. We finally received some useful information and hope after going down to Children’s.  We were told that they have a very low infant mortality rate in surgery and that he was going to be at the best facility in the mid west for a congenital heart defect of this stature.  They told us that Owen has Tricuspid Atresia, transposition of the great arteries, and hypoplastic right heart syndrome.  Owen is an infant who was diagnosed in-utero with Tricuspid Atresia with a Transposition of the Greater Arteries. Tricuspid Atresia is a Congenital Heart Defect in which the Tricuspid Valve doesn’t form causing the right side of the heart to become under-developed. Transposition of the Greater Arteries is when the Aorta and the Pulmonary Artery are switched. We met with neonatalogists and pediatric cardiologists once a month  and we also had weekly anatomy ultrasounds and biophysical profiles until Owen was born.

Since we live an hour and a half away, they recommended that I come and stay with family.  I went down to Milwaukee to stay with my Aunt three weeks before my due date. Kevin stayed at home to work.  I was still having my weekly bpp’s only at Children’s hospital. We scheduled them for every Friday so Kevin came down the first Friday I was there. They did the ultrasound and the Dr. was concerned about not seeing much amniotic fluid so she asked us if we could come in on Saturday morning(they are actually closed Saturday mornings so she had to let us in).  She did the check and looked at me and said ” You are having a baby today!”.  HA. Yeah right. Owen is so stubborn that he didn’t make his entrance for 39 hours! And by c-section too! As soon as they pulled him out I asked if I could have a cheeseburger. The whole not being able to have food thing for almost two days was horrible.

Owen was born on April 2nd, 2012. We saw Owen for about a minute after he was born and they took him down to the NICU and stitched me back up and sent me to recovery. After an hour in the recovery room, the nurses brought me down to the mother and baby unit so I could finally get some rest.  It was unsure when Owen was going to be having his first surgery until he was properly examined and given an echo.  It was decided that he would have the Norwood [procedure] at 3 days old. In the Norwood procedure they place a shunt between the Aorta and the Pulmonary Artery. I was still in the hospital, so we were able to hang out up in my hospital room instead of down in the waiting room for 8 hours. Everything went smoothly.775608_156230881195684_818991560_o

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Owen spent the first month and a half of his life in the hospital and didn’t return (except for appointments) until he was almost 5 months old for his Glenn procedure, which was on August 28th, 2012. We were in the hospital for 5 days and we got to go home! Since then we have been enjoying home life!”

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From Owen’s Cloud (his Facebook page):
Screen shot 2013-02-08 at 6.23.23 PM“Owen’s parents, Cassie and Kevin Krajnik, have been so inspired by their son that they have decided to make Owen’s Cloud a non- profit organization and raise money to donate to Children’s Hospital of Wisconsin, Ronald McDonald House, and to create care packages for families that are in the CICU at Children’s.”
You can also read about Owen’s story and updates about this adorable warrior at:
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Presenting our 7th warrior, Logan!

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

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

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

In a matter of minutes your life can change forever.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!