Quantcast

Thursday, February 15, 2018

Heart Month Spotlight- Beau Incomplete Shone's Complex

Happy Heart Month

Meet Beau, today's Heart Warrior! This little guy was born the day of the 2017 Solar Eclipse and then just days later experienced Hurricane Harvey. That's a lot of excitement in just a few days of life!


We can all relate to the day we found out that this “CHD” life existed. Our stories may be different, but we ALL have that day forever etched into our memories.
The day we found out about our son’s congenital heart defect started on the table of our 18-week anatomy ultrasound. I can remember thinking that the day couldn’t come soon enough so we can see our baby boy again.. The last time we saw him, it was at 7 weeks gestation and confirming we were indeed going to be first time parents with the little peanut. (That’s what he looked like from the first ultrasound)
Everything seemed normal (or as normal as a first time mom could have imagined). Baby wasn’t cooperating so the ultrasound tech had me chug a Capri Sun (GROSS) so that baby could be more active and move into a better position. She had me flipping from side to side in hopes that she could get a better picture, but she had zero luck, so she asked for the help of another technician… (Still didn’t register that something was wrong)... After some time passed and the second technician was “unsuccessful”, the doctor walked in and all of the sudden the room felt extremely small. I remember reaching for my husband’s hand and thinking does it really take 3 professionals to get this baby to cooperate?? Then I could hear their lingo… words and terms I couldn’t understand and that’s when I knew something wasn’t right, and I looked over at my husband and I could tell he was feeling the exact same way that I was... I tried denying it over and over in my head because I felt like if I let it feel wrong, it would indeed BE wrong… And then the Doctor asked, “Do congenital heart defects run in your family?”… My whole body sank into the bed and I remember that room closing in on me. From there on out, I don’t remember much of what the Doctor was saying. Talks of Amniocentesis were thrown around and the likelihood this baby could have a genetic syndrome. (Talk about double whammy)
He handed us a few handouts on what he thought it could be and gave us a referral for a second opinion to Children’s Memorial Hermann… He wanted me to come back later that day for an Amniocentesis, but after hearing about the risks, I couldn’t make that decision right then and there. We needed time.
After two days, we had our referral appointment, where they diagnosed our baby with HLHS.
Something just didn’t feel right to us. Maybe it was the many times the word “termination” or “comfort care” were thrown around, but I won’t go into detail. We knew we needed another opinion.
We decided to go forth with the Amnio, for no reason other than we felt like we wanted to prepare as much as possible. What was supposed to feel like an “ant bite” ended up being worse than childbirth! We received the final report, and they told us that our baby boy had 42 “beautiful” chromosomes. And that’s when I realized I could focus solely on our son’s isolated heart defect.
That night, I found a Facebook group for CHD’s. I decided I wanted to ask which hospital the Houston area families seek care. 30 responses… 29 said Texas Children’s... Little did I know, I had just received advice from a fellow Shone’s Complex mom on what would become my little beacon of hope. (By the way, I was one of the responses urging her to come to TCH!)
I called the next day asking (more like demanding) for a referral to Texas Children’s Hospital. And that is where our official journey starts.
C:\Users\shelly.leboeuf\Desktop\PERSONAL\Beau Maternity.jpg
Our appointment immediately started off with a tour of the hospital and exactly how things would go down the day of baby’s arrival. (This answered so many questions!) After our echocardiogram, we met with Dr. Kalen who gave us an official diagnosis of Shone’s Complex. Which is on the spectrum of HLHS in terms of the possibility of needing the same 3 open heart surgeries if, at birth, babies heart doesn’t seem adequate to remain normal anatomy. However, there was hope that Beau (he finally had a name!) could stay bi-ventricle. We knew at a minimum he would need AT LEAST one open heart surgery to correct his Coarctation of the Aorta. So we decided to transfer our care to TCH!
Do you remember that little beacon of hope I spoke about? Well, it was confirmed. Dr. Kalen was able to refer me to Dr. Morris who is over an ongoing Chronic Maternal Oxygen Therapy within TCH. (https://youtu.be/1TSD-dfJOXY)
The thought is that by giving oxygen to the mother, would aid in the increase blood flow and oxygen to the baby in hopes that the improved flow to the left side would aid in growth.

Dr. Morris agreed we were candidates for the study!
So from 26 weeks gestation, I was on 4 Liters of oxygen via nasal cannula 24/7.
Even as inconvenient as it was, it was the only thing that I could do for our son.
I wore it as MUCH as possible. It did get easier, but the questions did not. I did not go out in public, I went to and from work only. I had many questions from coworkers as to why I was on oxygen. And to avoid the looks that we are ALL too aware of and the many questions that couldn’t be answered, I told them that I was a part of a study that wanted to see what benefits oxygen can do for the baby. I just avoided the issue about the heart.

Beau was born on the Solar Eclipse (8/21/18) and just days before Hurricane Harvey struck devastation in both my hometown of Corpus Christi and our current little city of Dickinson, Tx.
We decided that upon discharge that my husband and I were going to take shelter at the hospital, we didn’t want to risk not being able to get to Beau.
image2.jpeg

During all of this, Beau ended up contracting a central line infection that later turned into presumed Meningitis. This pushed back our surgery another 10 days. He had a sudden fit of SVT that frightened us when all of a sudden the crash carts and all staff are bedside to help get the heart rate down.

Beau had his Intracardiac Exploratory Surgery by Dr. Mery on 9/5/18 at just 15 days old. Dr. Mery needed to physically measure Beau’s Mitral Valve to determine if his left ventricle was usable or if he would need the Norwood Procedure. The Mitral Valve measured just enough but needed some manipulation (valvuloplasty) to help open the papillary muscles from the outside wall. An arch advancement was done to correct his Coarctation of the Aorta. Then they closed him up! (Did my little beacon of hope work? Did his left side grow with oxygen therapy? I like to think it did!)
Everything went wonderfully but little did I know, the next week would be the hardest of them all.  
image3.jpeg
Post-surgery, Beau had an Acute Kidney Injury that had to be treated. He also had a hard time coming off the Ventilator due to some bloody secretions and constant atelectasis playing musical chairs in his lungs. Finally, one week post op, the breathing tube came out and it felt like the road to recovery finally got easier.
They moved us down to 15 and within one week, and a lot of back and forth with feeds, we were finally going home! Beau was 6 weeks old upon discharge, and boy were we mixed with emotions as first-time parents. The excitement of finally getting to feel like a “normal” family was quickly overcome by fear when you realize you know longer have monitors to warn you when something is wrong.
image5.jpegimage4.jpeg
I never know how to respond when people tell me how much they admire our strength throughout this journey of ours. The only thing I can mutter out is that our strength feeds from these resilient little babies fighting for their life. It is a feeling you cannot explain but would give the world to trade places with them.

The greatest moment was the realization that God gave us this little boy for a reason. Not because we did anything wrong, but because we will find the strength to persevere. And that’s what we did. Staying bedside every step of the way so we can advocate for him. Singing, talking, and touching him the entire time so he knows we are there while taking it day by day. Never let your praying knees get lazy. Enjoy every day, don’t live in fear. That’s the advice I would give.
image6.jpeg

Tuesday, February 13, 2018

Heart Month Spotlight- Michael TGA

Happy Heart Month!

Today's Heart Warrior is Michael! He's the son of Johanna and Bill. Johanna and I met in a class held at Texas Children's Hospital called "Hospitalized Newborns". I'm so grateful to have met other families that would be walking alongside us before our babies were even born! Johanna's story touches on something that is important for ALL heart families to remember- you did not do this. This is not the result of something you did, or did not do during pregnancy. Why this happens is unknown, and that's why CHD research and funding is so crucial!

I am the mother of a child with a congenital heart defect. Our story starts at our anatomy scan in late April 2017.

I'd been looking forward to the scan since it was scheduled weeks before. That morning, I made sure to eat the right stuff in order to get the baby to cooperate. My husband and I had agreed to leave the sex as a surprise since this would likely be our last baby (we have a 2y old son). During the scan we laughed and made jokes, my husband begged the tech to give us clues to the sex. Then the doctor came in and looked at the baby himself. After a few minutes he said to us, “I’m having a little trouble getting a good look at the baby’s heart” (my mind thought ok no big deal, baby isn’t cooperating, we’ll come back). But he went on. “The baby is turned towards your back and the ribs are casting a shadow, but there seems to be something significantly wrong with your baby’s heart.” I didn’t hear anything else he told us, it was like a black veil was pulled over my head and all I could do was try to breath. I finally asked if it was something I did? Because I had some wine on my vacation? Because of Zika? He assured me no, that this happened before I even knew I was pregnant. I felt responsible... devastated. I asked if he could be wrong, and he told me, “there’s a possibility but I’m pretty sure.” 
I work in the same building as my doctors office. When I returned to my desk after the scan, I started to sob uncontrollably. What did this mean for my baby? What would it mean for my family? Would my baby even survive outside of the womb? 
A nurse from Texas Children’s Hospital called me shortly after to set up a cardiology appt including fetal echo. Luckily I only had to wait 2 days. At our echo, I prayed and prayed and prayed that the doctor was wrong, that they would tell us “seems he made a mistake, everything is perfectly normal with you baby’s heart.” Unfortunately, they told us our official diagnosis. My baby had Transposition of the Great Arteries. His pulmonary artery and aorta were switched, so blood from the body went back to the body while the blood from the lungs went back to the lungs. The baby would need surgery immediately after birth in order to survive, but after the surgery we would have every chance for a normal life - and no other planned surgeries.

The rest of my pregnancy was really hard. I was switched to a (great) obgyn at TCH and labeled “high risk”. At one point my baby developed fluid around the liver, then I had too much amniotic fluid in my belly. And then it seemed every scan they found more wrong with the baby- a VSD, a bicuspid aortic valve, a coarction of the aorta. I felt hopeless. I was scared for every appointment. I was so sick of hearing what was wrong with my baby.
When Hurricane Harvey hit, I was 38 weeks pregnant. I decided to stay home with my family and pray that I didn’t go into labor. It was a long few days but we made it out unscathed. My mother was finally able to make it to Houston to help out with my 2yo after a number of cancelled flights. Looking back, it was actually nice to have time with my husband and first born, alone with no agenda, to enjoy our family one last time before we welcomed our second baby, especially not knowing what it would entail.
I had a scheduled induction on 9/5/17 at Texas Children’s Pavillion in Houston and a pretty straight forward delivery. My husbands was still able to call out the sex and at 6:48pm we welcomed our second son, Michael Thomas. He came out crying and pink but almost immediately turned a deep purple/blue. He was taken by a team to be assessed and they intubated him. When he was more stable, they let me hold him. I’ll never forget the sound of his cry or how soft his skin was. 
My husband went with Michael to the NICU where they immediately did a bed-side balloon septostomy to allow for more blood mixing. While they were there, I was alone in my room trying to eat a meal and waiting for my epidural to wear off. My friend who is a CVICU nurse came and sat with me for a while until my husband came back and wheeled me to see our son.

 For the next 5 days, Michael stayed in the NICU and the teams ran their tests. I was able to hold Michael twice during that time. On the 6th day, Monday September 11, Michael was wheeled off with his team of surgeons and anesthesiologist for his arterial switch operation. During his surgery, the Physician Assistant would come in every 1.5 hours to give us updates: he’s on bypass now, they’re getting ready to do the switch now, they are deciding whether or not to fix his arch now, they’re getting ready to take him off bypass and close him up. Finally, at about 3pm, our surgeon came and told us he was happy with how the surgery went. We were able to see him a few hours after that. He looked so small and helpless but so pink..
The next few days were the hardest for me. He was still intubated and was having bloody secretions in his breathing tube. There were extra chest X-rays ordered and talks of atelectastis and lung consolidation. Our doctors were amazing and kept telling me, as I struggled to hold back my tears, that it’s not a question of *if* but *when* he’s getting off the ventilator. It was very hard to stand beside him not able to do anything but touch his hand. Finally 3 days later, he was extubated. And that’s when my husband held his son for the first time. 

After that, the rest of our stay went very fast. Every day we came in there was another piece of equipment removed, one less IV, one less monitor. When we went to the “floor”, we were able to get a taste of what life was supposed to be like with a newborn. I was able to hold him for as long as I like and as often as I wanted. I was able to try to nurse him. 
And finally on post op day 10, we were discharged home. We left on two medications but those were quickly discontinued after our first surgical followup visit. 
Since coming home, I’ve been able to exclusively nurse Michael. He is hitting his milestones and gaining weight well. I struggle with anxiety, with letting him be a normal baby. My heart hurts for everything that Michael and our family have been through. But we are healing like he is, getting stronger every day. We have had two followup cardiology visits since being discharged and his visits are beginning to be spaced out further since he’s doing well.
Being a heart mom is not a club anyone wants to be a part of. My faith and sanity were tested every step along the way. There were nights I would plead with God to help my baby, and I pray for his health every day. Looking back I can see how truly blessed we are. Michael was the missing piece to our family’s puzzle. Our hearts are so full and our family is closer than we have ever been. We have a new appreciation for life and for each other. Normal struggles take on new meaning: I'll  never complain once about the lack of sleep or having to wake up with my baby. I'm glad we have these problems! Because it means he is home with us being a "normal" kid. 

Sunday, February 11, 2018

Heart Month Spotlight- Lauren Tricuspid Atresia


Happy Heart Month!

Today's Warrior is Lauren, a 30 year old living with Tricuspid Atresia. God bless Lauren's sweet Momma for pushing those doctors; a Mother's instinct, y'all!

I was born August 25, 1987, a supposedly healthy baby girl.  A few weeks after coming home I started to display some things that worried my parents.  I was throwing up everything I ate and was developing a rash all over my body.  My mom took me to my pediatrician and they told her “I was fine”. My mom knew I wasn’t.  Not only her second child, but my mom was a dietitian and had some medical knowledge; she knew something was wrong.  My mom took me to the pediatrician’s once a week for 6 weeks, yet the doctors still insisted I was fine, just a mucousy baby.

One morning when I was 10 weeks old my mom saw that I was breathing very heavy (grunting when breathing to) and turning bluish-gray around my mouth.  She took me to my pediatrician again and demanded a local hospital to admit me (back then my parents were on health insurance that you needed a request for admittance for tests by the primary doctor).  My pediatrician and a nurse checked me over, again… this time they heard a murmur so finally they agreed I needed testing done.  I was taken to the nearest ER and an on call intern who saw me in my mom's arms in the waiting room for x-rays looked at me and knew something was wrong... that intern had recently learned all about Congenital Heart Defects, so he knew it was most likely my heart.  I was was rushed to get chest x-rays and when the doctor came back said that my heart was very enlarged and most of the right side of my heart was missing... I was in severe heart failure.  Children’s hospital was called and an ambulance got ready to take me.  Once my mom was told what was going on; she called my dad who came from work right away as well as my grandparents.  My mom was not allowed to ride in the ambulance due to not enough room.  They told my parents that things were not looking good. My parents had been thrown into every parent’s WORST nightmare!! 

I made it to the hospital and was stabilized.  My cardiologist (the one I had the first 22 years of my life) told my parents I had a severe Congenital Heart Defect called Tricuspid Atresia with a very Hypoplastic Right Ventricle (my right ventricle never formed) and that I had to have an emergency heart cauterization surgery to re-rip a hole in my heart to save my life.  I had made it to the hospital just in time as another day (if that) at home and I would have most likely died.  I was discharged from the hospital 10 days later on a few medications and a special formula which consisted of concentrated Isomil with polycose added (basically formula with tons of calories/fat added) so I could gain weight as I needed to be at least 10 pounds for my first open heart surgery which I would have between 3-6 months of age.


My mom tells me it was a grueling task to get me to eat and keep down all my formula.  She told me it took about an hour for one ounce and she needed to feed me every hour with a syringe.  She would try to get me to smile and open my mouth to put a bit of formula in by syringe... then hope that I swallowed and did not puke it up.  I still very sick and due to a late diagnosis my Pulmonary Artery was about 3-4 times the size it should be, but could not be fixed till I was stronger.  That Pulmonary Artery could have popped at any time before my first open heart surgery and would have killed me.  Looking at pictures you would never know how sick I was.  If that was not a big enough task to take care of me, my parents had my older brother, Ryan, to look after who at the time was only 4 1/2 years old and carried a lot of germs that could make me very sick.  Of course Ryan adored me so it was hard to keep him away from me.  It was not easy for them, but they had family to help out and support them.  My parents kept strong for me and held onto faith that I would be ok. My parents did not want to accept that something might happen to me.

February 9, 1988 I had my first open heart surgery called the Pulmonary Artery Banding.  It was to help the blood flow in my heart and lungs until I was old enough to have a my next open heart called the Fontan. The surgery went well.  Though it was successful in its purpose it did not make it any easier on my parents and family.  I was still a sick little baby, but my parents never lost hope that I would be ok! As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well!

Soon after returning home I got dangerously sick with RSV!  I was taken back to Children's Hospital and admitted.  I spent a few weeks recovering from RSV on lots of medication.  My dad tells me my crib has a bubble thingy over it to help me breathe and for breathing treatments (I don’t know the proper name for it).  After returning home, everything went well and my parents as well as my older brother adjusted.

I was born with other medical issues, one is an eye muscle disease called Estropia (“Crossed Eyes”).  I did patch therapy as a baby, then had my first eye muscle surgery at 18 months old; which was during the time in between my two open heart surgeries (I have woren glasses since 9 months old).  Despite everything, I was a happy baby and smiled a lot!

On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan.  It had only been a month before during a heart cauterization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me.  The Fontan was a surgery that was still fairly "new" (about 15yrs old) in the medical world.  This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well. About a 50-60% of me surviving with my specific case was what the doctors bluntly told my parents, but my parents hung onto all positives.  My parents had a lot of faith in the doctors and God that I would come out ok.  I came out of surgery ok, I was alive!  As far as complications that I had from this surgery, I had a chest tube issue (they had to put it back in while my parents held me down as they did not have enough nurses around at the time), a one SVT/very fast heart rate episode where I coded (that code blue was very scary for my parents), a pacemaker scare (never got one though, I'm very grateful for that), and I was put on a special diet (medium chain triglyceride diet) due to milky drainage coming out of my chest tubes.  All things considered, I did pretty well with recovery.

I was discharged exactly one month (31 days) after my surgery which was just four days before Christmas 1989.  My family had every reason to celebrate.  I did too!  I got out my mom’s lotion the day I got home and went to town putting it all over myself.  I was happy and alive.  What more could my parents and family want?

After that second surgery I was as healthy you can be having severe heart condition or “half a functioning heart”.  I had years in between the second surgery and any minor concerns.  I went to my cardiologist once a year and was on a few medications, but other than that I was doing great.  I had another eye muscle surgery when I was 7 and I got four stitches in the my bottom lip from getting hit be a swing when I was 8.

I got a little brother, named Aaron, when I was 11 years old and that was wonderful; I would hold him as much as I could.  Aaron and I are very close.  When I was six my mom got me into acting classes; she signed me up to the family theater in our city.  I was in plays till I was twelve years old when the family theater group closed.  I enjoyed being on stage and it made me feel on top of the world.  It is something I will always remember; even my mom was in the plays with me!  For my parents and family to see me up on stage happy and alive was so extremely exciting for them.  I was in girl scouts from age 10 till age 14, which was fun and I made a few friends that way.  I bowled, started at age 5, which I loved and years later I ended up being on my high school girls varsity bowling team (got my varsity letter in bowling and was the team captain my senior year).

I was a pretty “normal” child and teenager in most aspects (I did have some limitations though) and for the most part I was a very happy child that loved to talk. I had a few friends and did lots of "normal" childhood things with my friends like go to the movies and have sleepovers. I did not sleep over any friend's houses till I was about 9 or 10 when could really communicate with other parents when I needed my medication and if something felt off.  My parents always told me growing up that everyone has challenges in life and that everyone has things they can not do.  I remember the few times I got upset that I could not do something, my parents sat me down and listed all the things I could do, then they listed things that could not do to show me that everyone has limitations with their mind and body.

Socially, I had some trouble and got teased a lot (I was shy, had glasses, could not keep up with other kids during gym/recess and was not allowed to play contact sports), but I did end up making friends.  Even in tough times I tried to have a positive outlook and have a smile on my face.  I loved to write (still do) and I have always enjoyed many of the simple things in life.  

My parents were always open and honest about my heart my whole life, even when I was young.  They always explained things to me in age appropriate ways and only what I needed to know at that age.  My mom would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away.  I became very good at this.  By age 10 I knew the name of my heart condition, that I had open heart surgeries, what medications I take, etc, but I just did not know what it all really meant.  My parents always supported and encouraged me.  They would always let me know how special I was and that God had big plans for me.  I was very grateful my parents never let me give up on things and gave me a pretty “normal” childhood.

At age 14 I was diagnosed with yet another medical issue, a form of congenital Scoliosis (I was born with an extra vertebrae in my lower back and my hips are not aligned) that caused mild to moderate curve in my lower back.  My back is monitored, but because of my heart, not much can be done.  I can get bad back pain (seems like more as I age), but it something I live with and I try not to have it get in the way of living my life.  It was not till the summer I turned 16 where my health changed for me; it was a turning point so to speak.  I broke out into hives all over my body for no reason early one morning and I was so scared.  I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong.  I was in so much pain because the hives were on my joints too and it was hard to move.  Finally, after three months of steroids, being off my heart medications, and being watched 24/7 the hives went away and to this day no one has a clue what happened.  All the tests found nothing, even the allergy testing came up with nothing.  It was very weird.  From then on I realized that anything can happen  It made me more grateful and blessed for what I have.  I held onto my faith in God, but there were times I questioned everything (and I still do sometimes), but I try to find peace.  Since then life has not been easy for me, but it certainly can be worse and I do not take a thing for granted.
I was diagnosed with Super Ventricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and was put on a low dose of a beta-blocker for that (which calms the vessels/muscles in my heart and slows down my heart rate).  When I first got the symptoms of the SVT’s it was scary. I had night sweats, bad chest pain, and it was hard to breathe. I was so scared that I did not even tell my parents right away.  I know now that I should have and I should ALWAYS tell someone if something is not right, but it was hard for me to accept that something was wrong.  Since the beta-blockers I have been SO much better.  As years have gone by I was getting more SVT breakthroughs (my body started to become immune to the medication dose).  In April 2014 (when I was 26) I was hospitalized for a few days to change to a stronger medication to control my SVTs.  Unfortunately, I got really sick and it ended up being a very rare allergic reaction to the medication, so I was switched back to my beta-blocker.  A few months after that whole ordeal the dose of my beta-blocker was doubled and since then I have gone back to "status quo" of when I was first put on my beta-blocker at 18.  I rarely get SVT breakthroughs right now, but when I do it can be a bit scary for sure.  Luckily, I have not had one ER visit for my rhythm issues (yet), which is a very good thing.  Rhythm issues like SVTs are an extremely common "side effect" of having a Fontan heart (or a complex CHD in general).  It can get frustrating, but I deal with it the best way I can.

In Spring 2013 I had my first heart cauterization in adulthood.  It had been about 22 years since my last heart cath, so they really felt it was time to get inside pictures of my heart and measure my heart pressures. It was also to see if anything needed to be done like stent anything.  Luckily, all went well other than the fact that they ended up having to go through my neck as both sides of my groin areas were damaged from childhood caths and open heart surgeries.  Nothing had to be done during the cath as everything looked really good for an "old" Fontan heart.  I  see a liver doctor once a year because all Fontaners will get some liver damage/congestion due to the Fontan circulation. Luckily, I just have mild to moderate liver fibrosis and my liver function is still really good.
In December of 2011 I graduated college with a Bachelor’s degree in Psychology.  I got married to the love of my life Dec. 21, 2011. Chris accepts me for who I am and not my heart condition, he is always by my side through anything. Chris and I have moved cross county 4 times since we have been together (SE Michigan to Northern California, Northern California to SE Michigan, SE Michigan back to Northern California, and Northern California to Central Texas). In May 2016, my dad passed away very suddenly and unexpectedly. His death has only taught me even more so how very precious life really is.  Last year my husband and I just bought our first house and we hope to have a kid in the near future but we have not decided how yet as it is high risk for me to carry a baby.

Living with a severe heart condition is not always easy, but it has taught me so much about life and what truly matters in this world.  Also, to cherish the present and take things one day at a time.  The biggest blessing CHD has given me, I feel, is the calling to be able to reach out and give hope to heart parents.  I have been part of the CHD community on and off line for almost 11 years now sharing my life story as well as being a CHD advocate sharing my knowledge.  I've had so many wonderful opportunities like being on the radio, being on TV, being in the newspaper/magazine, speaking at CHD events, and so on.  The most special thing I have gotten in return from reaching out to the CHD community is meeting my two very best friends who happen to be amazing heart moms.

Everyone has challenges in life, mine is my heart. I can not control everything that happens to me heart wise/health wise, but I can control how I handle what I am dealt.  I hope the way I am handling living with a severe heart condition leaves some kind of impact on the world, no matter how small. 

“I am going into an unknown future, but I an still all here, and still while there’s life, there’s hope.” -John Lennon