Tag Archives: Tricuspid Atresia

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 21st warrior, Steve!

I have to keep adding that exclamation point at the end of these titles. How come? In my head and heart, every single name reflects a warrior who is either still fighting, or has fought the good fight. If I could put each name in blinking lights and in neon, I would. Each name is celebrated over here at Queen of Hearts. Each name means a story and name that deserves to be shouted at the top of our lungs.

Steve is one of those stories and names.

Back in 2007, I had a blog called “The Bent Bunch” or something of that nature. I only say that because the name changed. I started it in 2005 as homage to our firstborn, James. Then we had Natalie, the blog name changed again and I really lost track of the title changes. Still fresh from our newly diagnosed newborn girl as having half of a heart, I wrote a little about my feelings coping with it. Most importantly, updates of Natalie’s (almost) daily and weekly doctor visits, weigh-ins and pulse ox checks, so family and friends could catch up and we could minimize our phone calls and focus on keeping our daughter stable. The blog, by a huge distance, was never a big read in the blogosphere. But any followers we gained were an immense gain to me. But, we lost readers and comments when I broke out the news about Natalie’s “special heart” in May of 2007. It’s expected. People freeze up and aren’t sure what to say. So they give distance when the distance wasn’t necessary. All purely innocent and  you can’t take it personally. But moving forward, we gained some new followers of Natalie’s story when she was an infant. The very first CHD-related connection our family made was with Steve.

Steve Catoe left a comment on one of the Bent blog, reaching out to our family with support and advice. I was so preoccupied with our life handling a sick infant and active, healthy toddler that I took a little time finding out who this Steve was. How did he know what he was talking about? Who is he? How is he so awesome? I was in for a real treat. Not only did Steve share the exact same defects as our daughter, but he received open heart surgery and treatment for quite some time at Johns Hopkins Hospital in Baltimore- the hospital who cared for Natalie’s heart for almost 2 years. We walked the same halls at Hopkins that Steve walked. We felt the same feelings Steve’s parents felt. It’s incredible.

Steve Catoe began blogging in 2008 at Adventures of a Funky Heart. He made a huge imprint in the Adult Congenital Heart community, as well as the CHD community as a whole. He wore many hats- warrior, survivor, friend, advocate, supporter, blogger, and the list goes on and on and on. Every word he said or wrote was valued and still is to this day. He had a knack for taking huge medical terms and allowing all of us readers to understand every single bit. The impact is huge and it’s still felt in the community. His imprint will forever exist.

We were all incredibly blessed to have him.

On November 29th, 2010, while doing what he loved- writing at his computer, Steve suddenly passed away.

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Below are just a few of my personal favorite blog posts by Steve at Adventures of Funky Heart:

August 27th, 2010: When I’m Not the Funky Heart

“One of my Facebook friends is highly agitated… with good reason:

‘I’m SO sick of hearing “Aww so now are YOU the one with all the heart problems?” I mean HONESTLY…Do you people think that’s a nice thing to say? People don’t say that to cancer patients so why say it to us?’

Preach it!

Personally, I don’t mind talking about my heart. (Hey, I write about it every day!) But I do have a few pet peeves. There are times when I just want to be me. This is an invisible disability, after all, and occasionally I want to remain invisible. Just one of the group, nothing unusual about me. When I hang out with my friends here at home, I’m not the Funky Heart and the wordsCongenital Heart Defect rarely cross my lips.

Another major irritant is being introduced not as a person, but as a health issue. Don’t you dare. If you introduce someone as “having a heart problem”, you’ve marked them. You have defined them by their medical status, and placed them at a disadvantage. Certain segments of the population will see them as “less than”. And if the other person is a young lady that I might have an interest in… well, you just threw that opportunity out the window. I want her to get the chance to know me. There’s a lot more to me than just my heart. If things go well, I will be the one who decides when it is time to have The Big Discussion, not you.

And the younger you are, the worse it can be. It’s a delicate balance – Mom, I know that you are grateful that your child survived their heart defect and any related surgeries, but your 7-year-old really isn’t in a position to ask you to hush and just let him be a kid. This would be a very good time to sit down and have a good talk with your child, and learn what they think. Perhaps talking about their problems while he/she’s present makes them uncomfortable.

The worst thing I have ever seen is a mom who insisted that her child pull up his shirt and show off his scar. You could see that the child felt like a Show and Tell object…. and mom was oblivious to the entire thing.”

July 6th, 2010: You’ve Been Warned

“Hey Heart Defect! We need to have a talk.

Yeah, you and me – I just wanted to warn you that things are about to get ugly.

I have no idea why you chose me, and for quite a while now you’ve had your way. I’ve been pretty much at your mercy because I did know how to fight back.

I didn’t know that you could fight back. You had me convinced that I was one of just a few people who you picked on, and I just accepted it.

But I’ve learned better, and while you weren’t looking, I started paying attention.

I’ve stopped being the usual, run of the mill, Woe is me! sick guy. I’ve learned how to take care of myself. I learned how my heart is supposed to work, and what you’ve done to it. I’ve learned how it really works. I even read the medical literature. Dad-gum it, that was hard, but I’ve figured most of it out and I’ll Google what I don’t understand.

I’m no longer passive – I am an active, intelligent, involved patient. I don’t just sit quietly and fill my prescriptions; I ask questions, I learn, and I follow up on important things. I do what I have to do to keep you under control. I found a really good Cardiologist, and not only do I have him on my side, I’ve got his partner, a bunch of good nurses, and a whole freakin’ hospital backing me up.  Anytime you want to cause trouble, you’re gonna meet my crew. And we ain’t going to fight fair.

And from now on we’re going to be playing by my rules.”

June 15th, 2010: The Funky Heart’s Rules

“Fans of the TV show NCIS are familiar with “Gibbs’ Rules“, a series of life lessons condensed into short phrases by Team Leader Jethro Gibbs. The Funky Heart also has a basic set of principles.

1) Never take from the Congenital Heart Defect (CHD) community; only give. This one should be a no-brainer. Unless they are lucky enough to be well off, Heart Families have to burn through a lot of their resources in order to help their Cardiac Kid. Medical staff, ICU, drugs, equipment, hotel for mom and dad… all this costs a lot of money. And a CHDer who doesn’t take prescription drugs is a rare thing. In case you haven’t noticed, drugs can be expensive.

CHD Support Groups are also financially strapped.  Most have razor-thin budgets and are barely making it themselves – especially in this economy. If they are lucky enough to generate any revenue, the odds are that money is reinvested in the organization. So I can’t in good conscience take money from these people or organizations – they need every bit of it. When I am invited to attend a CHD conference, I personally pay for my own airfare and my hotel room. My family has been just where these families have been: stretching that dollar until it breaks.

2) It’s not about Awareness. Think about it – most of the readers of this blog are already painfully aware of Congenital Heart Defects. Rather than being about awareness, Adventures of a Funky Heart! tries to focus on CHD Education: Can my child live a productive life? My child has an oxygen saturation of 87%, is this normal? Is Hypoplastic Right Heart Syndrome a defect? I answer these questions by writing about the latest research, new Congenital Cardiac Technology, and stories from my life and the lives of other CHDers I know.

3) NEVER lie. Don’t believe me? If I’m giving you a report or other information, the statements I make are backed up by a link, like this one:The sun rises in the East. You don’t have to believe me, but you can read for yourself and see why I think the way I do. Not that long ago I was accused of using “scare tactics” after I wrote a post listing the side effects of Amiodarone. But I had links to other articles and to a blog written by an Electrophysiologist (a doctor who would normally prescribe Amiodarone) and I stand behind every word of that post.

4) Always be positive. Despite the high survival rate for some heart defectsand the declining mortality of CHDs, deaths due to a heart defect still occur. Each one is tragic, a life cut much too short. I do my best to project a positive attitude – you can do it, you’re strong, just hang on. You’re going to get through this. And while I do discuss death when necessary (Jim Wong,Eliza Huff, and Gracie)  I don’t dwell on bad outcomes. Especially in a crisis, that’s not what a mother needs to hear all the time.

5) Be there. Sometimes all you can do is spend time in a waiting room, or just sit and listen (or read an email) as someone pours their heart out to you.”

 May 16th, 2010: George“My friend George spoke at the recent Lobby Day event in Washington DC. I wish all of you had been there to hear him.Like many of us there, George has a Congenital Heart Defect (CHD). His defect is Tetralogy of Fallot (ToF) and he is a retired Pathologist from out West. That’s right – a retired Pathologist. I’m not going to insult him by listing his true age, but George worked a full career with a major heart defect.He’s quiet and unassuming, probably the result of his years in the medical field. Pathology is a very scientific branch of Medicine; attention to detail is a must and you do not jump to conclusions. So when George stood up to speak, I wasn’t expecting what came next.

Long story short: George tore the house down! He stated that he had recently celebrated a birthday and then he said;

“I firmly believe that one day those of us with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

That did it for me right there. I’m 43 years old, but I’m 42 years, 7 months past my “expected” life expectancy. And here’s a respected member of the CHD community, a retired scientist, saying that he thinks that one day we’ll live a good long time? And might even hit the century mark? And all we have to do to start down this path is obtain funding for the Congenital Heart Futures Act? Right then, I was ready to walk down to the Capitol (Three blocks away), climb the dome, and rip that statue right off the roof!

George also has a very dry wit; he can tell a joke with such a deadpan expression that you don’t even realize he’s joking. But his humor can bite, as he proved when he recalled an exchange from his younger days.

“When I attended medical school they taught me that people like you didn’t make it,’ a doctor told me. I didn’t know what to make of that so I didn’t say anything.”

People like you? Wait a minute… that includes me!

“A few moments later the doctor asked me `Have you thought about which medical school you would like to attend?’ I answered, `Not the one that you attended.’”

You tell ‘em, George!”

And may I say? Our family has had the utmost pleasure to meet George last year while volunteering for the Congenital Heart Walk with The Children Heart Foundation, last summer in Aurora. We love you George!

Here is a really wonderful clip of Steve sharing his (very moving) story a few years back at the Regional Forum of Congenital Heart Disease. Please please watch it. IT’S SO WORTH IT..

Rest in Peace, Steve. We love you forever and your Funky Heart, too.

Presenting our 18th warrior, Jessica!

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A few years ago, I met Jessica and I can’t begin to explain how lucky I am to have connected with her. I’ll definitely try. Not only is she a Congenital Heart Defect adult warrior, but Jessica has been full of a wealth of information and support for families and other survivors. She has turned her experiences into lessons for others- which in my humble opinion, has been the best of information, even compared to information I’ve received from doctors. Jessi has traveled (and still travels) to meet other CHD warriors who she calls her “heart family”. She lives with her CHDs but she never lets them own her. Jessi (as she likes to be called) is way more than her heart defects. She is funny, cool, and super-talented in photography and loves editing photos for other warriors and their families! She’s a wonderful friend, sister, aunt, and daughter (and I know that list goes on). Jessi is a true warrior in every single sense of the word. I think that if you search the dictionary for “warrior”, a picture of Jessi would be there right along with a beautiful, smiling face. She’s a good friend of mine who just happens to have half of a heart. One of these days we’ll come to her and visit.

Here is Jessi’s story as told in her own words:

“My name is Jessica, but I prefer Jessi. I’m 23 years old and I am surviving CHD. I was born October 3rd 1989. I asked my mom a lot of questions about her pregnancy and delivery with me. It was a normal pregnancy, no problems whatsoever. But now looking back she remembers her doctors would always listen to my a heart beat a little longer then normal. Maybe they heard something, but it was 1989 and they didn’t have great technology back then. Labor and delivery where normal and I was born in the early morning.

406295_344058382334910_1371694522_nShortly before discharge my mom was trying to nurse me and I just wouldn’t wake up and eat. The nurses told her she just didn’t know what she was doing, but I have an older brother, she knew how to nurse. So the doctors took me away and managed to wake me up enough so I would cry. I turned blue. My mom knew something was wrong when the doctors and nurses came back without me. They told her I had a heart problem, it wasn’t anything serious, probably just mitral valve prolapse and I’d be fine. I got my first ambulance right before I was even 24 hours old. When my mom finally got discharged her and my dad came to see me, and what awaited them was a much worse diagnosis.

I have Tricuspid Atresia, Severe Hypoplastic Right Ventricle, Mitral Regurgitation, 2 superior vena cavas and a VSD and an ASD. My parents were told the ASD and VSD were the only reasons I survived my birth. I had my first surgery, via cardiac catherization at 2 day old. A balloon septostomy to make my ASD and VSD bigger so the blood would continue to flow. I got to go home a week after my birth and did okay until I was 3 months old. That’s when they had to do my first BT shunt. At 9 months old I needed another BT shunt. Both were done through my back and I have scars underneath each shoulder blade. At 1 1/2 I had my first open heart surgery. I went in on mother’s day and got out on father’s day. They did the Glenn, but it failed and they couldn’t get me off bypass. So they did another procedure (this one I don’t know the name of) and again, they couldn’t get me off bypass. My heart just wouldn’t beat. They had one more option but they weren’t sure if it would work, it was so new. But it was all they had left, so they did the Fontan. Luckily, it worked and they finally got my heart to beat. But a 4 hour surgery turned into a 12 hour surgery. Because I was on bypass for so long there was swelling in my brain and I had a massive seizure and was in a coma for 2 weeks.

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A very young (and adorable) Jessi!

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Jessi rocking her Holter in the 1990s!

July 24, 2009 I had the Fontan revision, Maze procedure to fix my atrial fibrillation, atrial reduction (they removed part of my atrium) and a pacemaker implant to help the sinus bradycardia.

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See how she still smiles! She rocks.

Its been a crazy 3 years since my last surgery. I was in a car accident in November 2010 and was told the only reason I survived it was because my pacemaker kept my heart going. The Maze procedure failed and my atrial fibrillation came back about 2 months afterwards. I had a cardioversion in September 2011 and we are watching it again and if it gets bad again we will try an ablation. It’s now called chronic atrial fibrillation. At my last appointment my doctor told me I have the best ventricle function post Fontan out of everyone he sees in his clinic, and I’m quite happy about that. I’ve been diagnosed with an auto immune disease and I’m in a lot of pain, but I try to keep going.

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My cardiologist says it’s just a matter of time before the heart failure comes back and I’ll need a transplant. But I’m taking it one day at a time. I’m enjoying my life. I’m trying to get disability because as much as I’d love to work I know I can only do it part-time. I love meeting new CHD families and go to visit children in the hospital whenever I go for my appointments. I also love meeting them outside of the hospital too. I’ve been told I give them hope and I am proud of that. They help me feel not alone. I’m enjoying being an aunty and hope to sometime become a mom (through adoption) myself. I love my life and am thankful for the doctors who gave me a chance to live it.”

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Jessi and her nephew!

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Please visit Jessi’s Facebook page and send love and support! She’s the best advocate that anyone could meet when it comes to CHDs.

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Jessica’s Journey

Presenting our 17th warrior, Lucas!

Lu-cas [loo-ku s]: 1. real-life superhero 2. a boy full of incredible strength 3. utter cuteness 4. a reason to smile. 5. CHD butt-kicker. 6. red hair that makes girls swoon.

Here is Lucas’ story as bravely told by his mama, Ashley:

“On September 9, 2010 I took a positive home pregnancy test…..or 6. On September 14, the results were confirmed at the doctor’s office. This was definitely not a planned pregnancy, but it wasn’t not planned either…we were playing invincible 🙂

My pregnancy was going great and we were stoked to find out that we were having a little boy, who was quite eager to show us that, on December 27. The following week I got a call saying I needed to come have another ultrasound done because they couldn’t get a real good picture of his heart. At my regular OB appointment two weeks after the second ultrasound the doctor told me they still didn’t get a real good picture for the reader, but the tech said everything looked ok. I was given two options I could either just let it go and believe everything was ok or I could go get a Level II ultrasound (fetal ECHO) at Riley’s. I initially opted for option one but changed my mind shortly after because I am a paranoid person

We found out on February 21, 2011 that Lucas has a congenital heart defect known as Tricuspid Atresia. This is where the tricuspid valve which is located between the atria (top part of the heart) and the ventricle (bottom part of the heart) is either absent or under developed. Due to this, the right ventricle of his heart is also under developed. This causes the baby to be cyanotic (blueish) because the blood returning from his body has no direct access to the lungs. To get the blood to the lungs, it goes on an adventure through a VSD (hole in the ventricle) and an ASD (hole in the atrium).
To repair this, he will undergo three surgeries to re route the blood from the left side of the heart. The first being a BT Shunt, the second being a Bi-directional Glenn (hemi-fontan) and the third being the Fontan. They should be completed by time he is 2 1/2. (http://www.mottchildren.org/congenital/services/patient_con_tri.html0

Lucas was born at IU Hospital on May 10, 2011 weighing in at 7 pounds and measuring 20 1/2 inches.

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fresh out of the oven!

I got to see him for just a few seconds before the took him out of the room to get ready for transport to Riley Children’s Hospital. I was unable to hold my baby for the first time until May 11 since he was full of wires and IV’s. I was petrified. However, he was in incredibly great health, all things considered and we were able to go home on Friday, May 13.

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yummy baby feet!

He had his first heart catheterization on August 16, 2011 and then determined it was time for surgery.

Lucas underwent his first surgery- the BT Shunt– on August 30, 2011.

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You know you have a special child when they still smile even after going through so much.

They had planned on it being a closed heart procedure in which they go underneath your arm to place the shunt. However, when they laid him on his side, his oxygen levels dropped so low that the surgeon decided to just go in through the sternum and get it done as quickly as possible. He spent just a few days in the PICU before we went to the Heart Center. They were going to keep him for a few more days than normal due to the fact that he wasn’t taking most of his bottles orally. We were finally going to go home a week and a half after surgery…but he had a fever the night before so they ran tests and found he had an infection in his blood, so we would have to stay ten more days for a round of IV antibiotics.
While in the hospital, he developed second degree heart block. Heart block is an abnormal heart rhythm that usually results in a slow heart rate. It is caused by a problem in the heart’s electrical system in which the electrical impulse is delayed or blocked completely as it travels from the heart’s upper chambers (the atria) to the heart’s lower chambers (the ventricles). In second degree heart block, some of the impulses are blocked while others get through so the heart rate is often slower than normal and irregular (http://www.mottchildren.org/congenital/services/heart-block.html). The doctors decided it was best to go ahead and insert a pacemaker to help as second degree heart block can lead to complete heart block. He had his pacemaker inserted on September 20 and we were finally able to go home on September 23.

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Everything went decent after that for a few months. We got a new pediatrician- we weren’t really agreeing with the way his family doctor was going with things. He didn’t seem concerned about the lack of weight gain, etc. Since going to him, we have had a lot of things happen. The biggest being that Lucas had a J-tube placed on February 22. He is still really slow on the weight gain, but that is to be expected with a heart defect. After his surgery, he had an IV infiltration in his right foot and that got pretty gruesome to look at, but it is finally starting to heal up. He was only in the hospital for a few days after the tube placement before we got to go home. Once there, though, things didn’t go quite as planned. He was extremely fussy and vomity for a few days and his j tube site leaked a bunch…it was gushing. We ended up going back to Riley’s where they determined he was constipated causing the fussiness, vomiting, and leakage. After a few days there, we were sent home again. His site has healed nicely and barely leaks anything at all now- his surgeon just said it looked as good as it could. We did, however, end up back at Riley’s about 2 weeks after coming home the second time. This time his foot, where the iv was, was changing appearance a little too drastically for me. We had tried to call the plastic surgeon on call a few times that night, but we never got a call back so we ended up taking him in.
After 5 hours in the ER, they finally put us in a room for the plastic surgeon to come see us in the morning. After going off on them; they wouldn’t come see us in the ER and because they never told us what was good and what was bad….or when to get help- we were told everything looked good and to go home. They said they didn’t tell us what we cold expect because every wound is different, but it would have also been nice to know what I might have seen in the healing process….or maybe what was absolutely not good and needed checked out. We have been home since that date, thankfully.

Lucas went in for pre op on May 3 for his Hemifontan.

His surgery was the first case on May 4. They took him back around 7:30 A.M. Updates started coming around 9 and the first few hourly updates were just that they were still trying to get lines in. It took until about 11:30ish before they got everything in and could start surgery. The surgery went relatively fast after that and we were able to see him by 6:00-ish.

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He was extubated and had just a little oxygen through his nose. Surgery went great, we were told- other than him not wanting to have lines placed easily :). Recovery was great as well.

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He had his two drain tubes removed a few days later and we were out of the PICU on Monday. We spent the rest of the week in the Heart Center at Riley’s. He had a few issues with satting low at night and they placed oxygen on him while he was sleeping but we were not going to come home with it.
Lucas spent most of his 1st birthday in the hospital but we were discharged that afternoon! Before that happened, though, the Child Life department came and brought him a bunch of gifts! I was in awe by how much they brought! My heart is still so full of love from all of the love that’s shown there. I have never felt more at home at a home away from home place. The nurses are great, the doctors are amazing, and the atmosphere is splendid.
We didn’t get to stay home long, though, because Saturday morning (the 12th) Lucas had a coughing fit and vomited after holding his breath for a bit. This was the 4th time this had happened in a 24 hour period and I was concerned so I called the surgeon’s office and they had me bring him in. The did swabs on him to check for a few things but we were released on Mother’s Day morning because only one of the swabs would have any effect of what was being done if it came back positive and they were sure it wasn’t going to.
After a bout with pneumonia in June 2012, he was sent back to Riley’s because his fluid in his lungs wasn’t getting any better. That quickly resolved itself, but we were kept there an extra week to try to get him to start eating like a toddler, and to gain weight. I have refused to use his J Tube because he has a ton of anxiety over it, and well, he needs to learn to eat like a big boy. While in the hospital he gained VERY quickly, but since coming home, that has slowed down dramatically. Hopefully it picks back up soon and he outweighs a T-Rex in no time!

This is just the beginning of his long story with a CHD and I will continue to update and more things happen.
His current diagnosis is: Tricuspid Atresia, hypoplastic right heart syndrome, VSD, ASD, Heart Block with a pacemaker, and failure to thrive (very underweight). If you have questions or just want to talk, feel free to send me an e-mail. Ashley.B87@att.net.”

What Lucas grow!

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Lucas at 3 months old ; )

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..6 months old!

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9 months old! ; )

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Lucas’ first birthday!

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Another incredible thing to know about Superhero Lucas is now 21 months old, he is officially J-Tube free! Since September 13, 2012 to be exact! His story will continue to be full of awe-inspiring stuff. We just know it!

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 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:

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“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.

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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.

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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.

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

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Being such a big kid at her many heart checkups!

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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.

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Kelsey with her little brother : )

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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 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.

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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.

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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 4th warrior, Kylie!

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