Tag Archives: going places

Presenting our 28th warrior, Gabriel!

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Super Gabriel!

(Story and photos courtesy of my Lisa Vallejos, founder and president of the non-profit organization Gabriel’s Gift.. Oh, and he she just happens to be the mom of a superhero!):

“‘Oh, the places you’ll go’ by Dr. Seuss is an inspirational story for kids of all ages that was somewhat of an anchor for us during Gabriel’s hospitalization (and after!). We chose to open with this quote because we want you to first of all, have hope. Embrace it. The possibilities are endless and our story is just one of many that will inspire you to expect miracles.

We learned about Gabriel’s diagnosis while he was still in utero; we were fortunate enough to have an ultrasound technician who noticed something wrong with his heart and we were immediately referred to a specialist. After meeting with the pediatric cardiologist, we were presented with 4 options: terminate the pregnancy, compassionate care, the Norwood procedure or a heart transplant. After many sleepless nights and days spent in research, we decided to proceed with a heart transplant and began the process of finding the best Children’s Hospital in the nation for transplants. Imagine our surprise when we were informed that Denver’s very own Children’s Hospital has one of the best heart transplant programs in America!

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Baby Gabriel : )

Gabriel was born big and strong and was transferred to Children’s Hospital about 36 hours after he entered the world. When he arrived at Children’s, the Transplant Team worked around the clock to evaluate him, confirm his diagnosis and establish a plan of action. Within 24 hours, Gabriel was listed on the UNOS transplant list. We were told that the wait for a heart could be anywhere from 3 to 6 months and we prepared ourselves for the duration. However, we received a call when he was 13 days old that there was a match and the transplant team was flying out immediately to check it out. We waited on pins and needles to hear from the retrieval team while our family raced to get to the hospital.

At about 8:00 p.m., Gabriel was wheeled into the operating room while we walked beside his crib. We left him at the door and went out to the waiting room and settled in for the long night. About every hour, the transplant coordinator on duty would come out and give us updates; his chest was open, the team had landed with the new heart and was on their way, his old heart was out and his new heart was in. When his new heart started beating on its own, there were shouts of joy in the waiting room. It was now 3:30 a.m. and we were all physically and emotionally exhausted.

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Heart donor, sweet Kylie Grace.. “My life is your legacy. May it bring you joy. Love, Gabriel”

When we were allowed in to see Gabriel, it was a shock. He was swollen to about three times his normal size and had IV’s in at least 8 different places. There were so many medications flooding his little body but it was easy to see beyond the trauma of his surgery because we knew this was his only chance at survival. He remained swollen for quite a few days but eventually returned to normal. He opened his eyes, got his chest closed up and the ventilator removed. In less than a week, he was moved out of the Cardiac ICU and into the Infant Care Center.

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A true warrior in every sense of the word.

We brought him home 11 days after his transplant.”

Our family met Gabriel and his beautiful family a few years ago. Boy were we lucky. We were brand new to the area and had yet to meet any CHD survivors in Colorado. We truly lucked out meeting them and we feel the same way to this very day. For the past 3 years we’ve had the privilege of getting to see Gabriel grow and grow! He’s doing incredible things and there is no stopping this little man. He has a thirst for life, a huge spirit, and never ceases to amazing everyone who has the pleasure of meeting him. Rock on, Gabriel! We love you big guy!

“Oh the places you’ll go”….

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Check it out! Gabriel and Lisa are spokespeople for Donate Life! How awesome is this?? (Are you a registered organ donor? hmmm? : )

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2 cuties- Gabriel laughing it up with his baby sister, Eden!

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Super Gabriel even wrestles AND plays football!

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Gabriel, his mom Lisa, and sister Eden… this explains where Gabriel gets his hilarious sense of humor!

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In sheer delight watching the whale show at SeaWorld! (this was during his Make a Wish trip!)

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Gabriel wearing his Holter monitor so well!

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Someone loves their sister VERY much… 😀

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At the most recent Donor Dash! 2012!

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“Mom, I can’t say S anymore!” – Lisa, Gabriel’s mom
This is a perfect example of Gabriel’s personality. So cute and so funny…

402754_10150632811784847_2089480477_nWe love you Gabriel!!

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**Gabriel’s Gift is a 501(c)3 that was founded to provide assistance to families who have been impacted by congenital heart defects as well as to raise awareness about CHD.**

**Register here at Donate Life to become an organ, eye, and tissue donor: Donate Life**

Presenting our 26th warrior, Dylan!

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“Nothing can break his stride.” -Dylan’s mom, Talitha

Dylan’s mom, Talitha, shares her son Dylan’s brave journey with a critical congenital heart defect…

“When I found out I was pregnant, I was absolutely thrilled. I had always wanted more children in addition to my 5 year old boy, Jordan. The pregnancy was great without any major complications and I went 6 days past my due date! On Thursday, May 26, 2011, my dad’s 50th birthday, Dylan Dainger Snyder was born. Labor went fairly quickly and I only pushed for 8 minutes before he made his grand appearance. It was the quickest and best delivery I could’ve imagined. He was 8lbs. even and 20 3/4 inches long. His dad, Jason (Jay), joked that I pushed a pound per minute! I felt great afterward, was up walking around and didn’t even feel much pain. After Dylan was born, both Michele (J’s mom) and I had commented to the nurse at separate times that his hands and feet were a weird shade of blue. She assured us that it was normal for newborns.

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“Dylan the day he was born, before we knew anything. If you look close, you can see his blue-ish feet.”

Throughout the rest of our stay at the hospital, I had noticed odd things such as his rapid breathing without pausing and not nursing as well as my first son did. The nurse again reassured me that his latch looked good and newborns normally breathe quickly. The last thing that concerned us was his inability to urinate. They took him down to get an ultrasound of his kidneys to see if they were normal, and they were. At some point during our stay the pediatrician at Sacred Heart Hospital in Eau Claire, heard a heart murmur and asked if there was any family history of congenital heart disease. As far I knew, there was no family history. She then reassured me that it’s normal for newborns to have a murmur at birth and it usually closes up after a couple of days. She ordered an EKG to confirm it was a murmur. She then told us we would have to follow-up in Marshfield, WI since there were no pediatric cardiologists in Eau Claire. We were told that until Dylan peed on his own, they wouldn’t discharge him. Late Saturday evening a tiny bit of orange-ish looking pee was in Dylan’s diaper. So they sent us home and told us to make sure we keep our appointment in Marshfield, which wasn’t until the following Tuesday. Also, that if he starts turning blue, drive him to Marshfield. I told the doctor Marshfield is any hour and a half away from our house and if he is turning blue, wouldn’t I want to take him to ER? She said that if we took him to our local ER, they wouldn’t be able to help him and it would delay care longer than if we just drove him there ourselves.

Sunday night, May 29th, I had noticed Dylan was no longer eating at all and was extremely fussy. He also still hadn’t peed since we were at home. I took him to Sacred Heart ER, despite the doctors orders to drive him to Marshfield, early on Monday May 30th, 2011. When we got there, Dylan was 95 degrees and had an O2 saturation of 50. Immediately there were multiple medical staff surrounding him. Within hours, a helicopter team arrived to fly him to Amplatz Children’s Hospital in Minneapolis, MN. The same pediatrician was also on call that morning that had worked the weekend and told me I did the right thing bringing him in when I did, even though I tried to convince myself I should’ve brought him in sooner. The helicopter nurse with over 30 years experience working with cardiac kids, told me when the O2 saturation for the hands and feet were so different, that usually means there is something wrong with their heart and they were giving him a shot a prostaglandin because that is what was keeping him alive. Later, I was told by the doctors at Amplatz that he may not have made it if I would’ve waited a couple of hours before bringing him in. So I’m happy I followed my instincts.

Jason and I drove to Minneapolis, which felt like the longest drive of my life even though it was only and hour and a half away. I didn’t know when we arrived if Dylan was going to be alive or not. When we finally arrived, we were told Dylan was very “sick” and had suffered multiple organ and respiratory failure due to complications of congenital heart disease. It was by far the worst feeling in my life. It felt like the room was closing in on me. I started sobbing and asked J if I was dreaming. The doctor explained that Dylan has critical aortic stenosis, hypoplastic left heart syndrome and a slightly small mitral valve.

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“What Dylan’s Heart looked like prior to his first surgery.”

There’s a whole different world out there that I had never even considered until I was thrown in it. It is the world were so many children are in the middle of fighting for their lives right at this very second, proving their strength and will to live. Everyday is a gift. They are all such an inspiration!

“Dylan after his first open heart surgery.”

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“Dylan’s heart after his first surgery, the DKS with Sano shunt modification: 6/6/11”

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“Dylan’s heart after the Glenn procedure: 11/8/11”

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“Dylan recovering in PICU after his Nissen – 5/11/12″

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Dylan conquering CHD for a third time.. (3rd open heart surgery, January 31, 2013)

When I was pregnant, this was not anything close to how I imagined our lives to be. Jay and I took the initial news very hard. Luckily, we have each other for support which has made all of this much easier. It’s hard not to think about the worst but we are trying to remain optimistic and strong, for Dylan and each other.

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“Getting some mommy love on his 1st Birthday!”

The cardiac team at Boston has to take a staged approach with Dylan because his heart was not in good condition for the biventricular repair to work. What is common with kids with HLHS, is a thick fibrosis tissue forms around the left ventricle, making it impossible to grow. The surgery plan was to remove the tissue, add a shunt going to the lung, partially close the hole in his atrium, and look at the mitral and aortic valves to see what condition they are in. Then, in approx. 6 months to 12 months, come back to Boston to completely do the biventricular repair.

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Sometimes, after all of the tissue is removed, the left side grows so rapidly, they are able to do the bivent repair within a few weeks, but that is very rare. In Dylan’s case, the whole left side was completely encased with this tissue as was the mitral valve (which looked pretty good!). Dr. del Nido said Dylan’s aortic valve was pretty damaged and at some point in his life, he most likely will need that replaced via open-heart surgery. Although, they are able to use it right now. The GREAT news is that Dylan’s left ventricle is almost the size of his right and that they were able to completely close the hole in his atrium and del Nido thinks Dylan has a great chance for the two-ventricle pathway to work! Only the minority of kiddos born with HLHS even qualify for the bivent repair, so we feel so blessed right now even though we have to take a longer route to get there. Also, Dylan still has quite a bit of collateral flow to lungs still, so they decided not to put in the shunt for fear of flooding the lungs. He suspects that as long a Dylan has a Glenn, he will continue to develop these collateral vessels. He said there is no point in doing anything with them now because they would have to redo them right before surgery anyway. So right now they are going to use them to their advantage until they are able to take down the Glenn. Dr. del Nido also thought that if Dylan benefits even a little bit from being on oxygen to prevent as many collaterals as possible from growing, it would be worth it. So it looks like he will be on oxygen until he can have his full biventricular repair.

As of right now, we know for sure Dylan will need at least two more open-heart surgeries in his life. One for the bivent repair, and one to replace the aortic valve when his starts to fail. They will monitor him closely throughout the next few months to see how quickly the left side is growing with echos and CT scans (which can all be done in Minneapolis!!). When they feel we are getting close, we will fly back to Boston to have a heart cath. Dr. del Nido said the numbers need to be extremely accurate with no room for error or question, and since they have specialists here for that, he wants us in Boston for the heart cath. Then, when the numbers look right, he will do a full biventricular repair on Dylan. He seems confident that this is the best path for Dylan. That makes me feel confident about it too!”374269_207439439399417_474458691_n

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Dylan and his beautiful family!

Follow Dylan’s story at: www.caringbridge.org/visit/dylansnyder  and also at: Supporters of Dylan Dainger- HLHS Warrior (Facebook support page).

Now that you’ve read Dylan’s story, aren’t you in complete awe of this beautiful kid? When I began compiling his story, through the generosity of his mom letting me piece together something (which wasn’t very hard because she does such an awesome job keeping supporters updated, even as busy as she is!), I found myself smiling like crazy at Dylan’s photos. We know that all children have something wonderful to add to this earth. But Dylan… buddy, there is just something incredibly extra special about you. You make hearts MELT. Mwah!! You keep rocking those scars like the rock star you truly are!!

Presenting our 25th warrior, Christy!

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“I am not my defect”                                                      Steve Rosenfield “What I Be” project

“I was born with Tetralogy of Fallot with Pulmonary Atresia in 1980. My parents did not know of CHD before birth.

After I was born my parents were told to take me home and keep me comfortable until I die. Instead, they signed up for the clinical trial of Prostoglandin E to keep my ductus open long enough for surgery. I had my BT Shunt after birth by a general surgeon at UCSD.”

Christy has had MORE heart surgeries that she had successfully endured…earning several warrior badges…

-“Waterston shunt by the same general surgeon at UCSD – Waterston shunts are not performed anymore because they killed 99% of the children who received them from pulmonary hypertension.

Rastelli procedure in 1985 by Dr. Hillel Laks at UCLA

-Pulmonary Valve Replacement and Aneurysm repair in 1998 by Dr. Hanley at UCSF”

Christy has accomplished so much in her life already…

– “Graduated College with a Bachelors of Science in Health Education in 2003

– Graduated with a second Bachelors in Nursing in 2007

– Graduated with my Masters in Nursing in 2010

– Now works as a Pediatric ICU nurse for Kaiser Roseville.

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Married in 2006 to Steve Sillman : )

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Delivered a beautiful baby boy named Noah in January of 2010.

– I’ve been writing columns and blogs for both http://www.ipinionsyndicate.com and for ACHA at http://www.achaheart.org for several years.”

Complications and CHD specific issues…

– “Near death experience with my 1985 surgery. Tunnel, white light, message from God – the real deal.

– Generalized anxiety disorder

– Reading difficulties – I’m a horrible speller too.

– Postpartum cardiomyopathy (I’m still dealing with this)

– Lost to ALL cardiology care for 8 years (yes, you read that right!)

– Received unspecialized cardiology care from a local cardiologist with “an interest in CHD” for 4 years.”

What having CHD means to me…

“Everyone has SOMETHING, whether its depression, obesity, a chronic illness, or body image issues – we all have something we “deal” with. Having CHD I have had my “something” my entire life, and I see that as a benefit. There was no shock to my psyche, it is what it has always been – the thing that makes me, well, ME! The CHD journey is full of ups and downs – periods of normalcy followed by total life upheaval. I have been blessed to have been raised in a supportive family and to meet my devoted husband at a young age.

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I have always loved children and knew I wanted to be a mother, but I knew it was going to be a huge challenge. Pregnancy with CHD was a harrowing journey but one that was ultimately worth it all. My son Noah is a miracle.

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He’s now 3 and the light of my life.

I wasn’t supposed to live, but live and give life I did. The stakes somehow seem higher than ever before for me now that I’m a mother. I don’t merely WANT to live, I NEED to live.

Finding the CHD community has been life changing. I’ve met many other adults with CHD who inspire me daily, families who continue to support their children through the CHD journey, and grieving mothers who re-define unconditional love and devotion. I was so lonely and lost for so long, I found my way back to appropriate care and the supportive arms of the CHD community.

My goal is to advocate, support, and cheer-lead the CHD community as we fight for research, services, and a voice! I hope to inspire, engage, and catapult our collective story.

Each of us has a story, but collectively we have an epic tale of strength, courage, and, most of all, HEART.

Thank you Dawn for letting me in on your inspiring project! You’re an awesome voice in the CHD community.”

I remember “friending” Christy through Facebook a little while ago. I had no idea that she was an adult CHD warrior right at first. When she gave me that first  brief glimpse of her story, I was stunned. I kept thinking..”..she has a CHD AND is a nurse? in a pediatric ICU? AND IS A MOM? what?” Stunned I tell you. I’m pretty sure I’m still stunned. And I love it. I don’t really know many people who live without a heart defect can even handle accomplishing these things separately, let alone, all at once. That pediatric ICU is very lucky to have you and so is that cutiepie of yours. Christy even diagnosed one of my husband’s ailments a few days before our doctor did- an ailment that wouldn’t have been properly diagnosed unless I hadn’t asked about HER suggestion! Stunned again! Thank you for letting me share your story and thank you for being so awesome. Christy, you are SO welcome!

Presenting our 2nd warrior, Lauren!

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

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

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

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

Lauren with her mom, Suzanne ; )

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

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

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

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

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

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

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

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

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

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

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Beautiful Lauren with her handsome new husband, Chris.

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

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

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How to Survive the Germiest Season of All

***I am not an expert of any kind (even if I wish I were and even if my kids think I am) so please use this advice in any way that you feel comfortable. This is just based on my own personal experience and research. As always, consult your doctor(s) and local government for more information.***Image

Fall, winter, even spring. We can even throw summer in there. But out of all of these seasons we all know that fall and winter are the germiest months because of cold and flu viruses and stomach bugs like the monster Norovirus. They’re all lingering around more than any other months. Or so it seems at least.

Let me get this out there- I am a germaphobe and I’m fine with that. It all started since the day we got The Queen’s diagnosis. Call it what you will, but even if it’s an anxiety-induced reaction to such a disheartening diagnosis, I will definitely embrace my germaphobeness because it’s what helps keep Natalie healthy.

I’ll also get this out there- I have a strong phobia called “emetophobia” and this I’m not that fine with. It’s hard to handle especially during these fall and winter months, especially with tales of stomach bugs cropping up almost daily and in all parts of the world up and down my Facebook newsfeed. The first feeling I get is worry for the one dealing with it. The second feeling is dread: the feeling that I just know that my own child will get it really soon. Here’s what’s really strange, I can clean it up but do NOT let me catch it. I will myself to never throw up and I take pride in having 6 1/2 years of not doing it. Even if it hurts more to not do it. I would actually prefer to have a broken bone, a really bad cold, or go through a long labor again to ever throw up. How crazy is that? Purdy crazy.

But it’s my phobias that cause me to research and listen for stories and information about how to avoid getting sick..well, at least not that often. We all do not have to be sick every week if we don’t need to. Trust me, I’ve partially thrown in the towel this school year. I have Natalie and her brother in full time elementary school. Chances are, almost every germ in this house comes from them. Chances are, our family will get sick no matter what. And I’m actually fine with that. We have to let the immune system do what it needs to do. I was born in 1978, had chickenpox, the flu almost yearly, oh so many bad colds, and so many stomach bugs that I lost count by middle school age. And I survived! But what’s scary for me is that I know very well that health-compromised kiddos like Natalie get hit harder, longer, and faster with every germ that enters their bodies. If I can take away an extra cold or stomach bug away from her every year then my hard work is always worth it. So next to getting your yearly flu shot (you better get it!):

TOP 10 LIST OF THINGS YOU SHOULD DO (or at least maybe consider because for realz)

10.) Wash wash wash those dirty hands! Anytime you come home from work, the playground, school, from even just checking the mail you should be washing those hands. We live in an apartment building with a shared front door. Everyone, even those with hands so dirty their fingernails are black, touch those doors. Not everyone washes their hands after wiping their butt. But nonetheless, washing your hands with warm soapy water for 20 seconds is not only the best defense against illness, it’s one of the only ones that actually work.

9.) Change school clothes when your kiddos come home. Sometimes I let the kids keep on whatever they’re wearing. So yes, I do slack sometimes. But if they sat and laid around the school’s sandbox that day, change those nasty clothes! Also, an uncovered, ignored sandbox? Gross.

8.) Clean your cell phone! I have to confess, I’m pretty sure I broke my phone by doing it too much so as soon as I find a safe way to disinfect a phone (or if you know a way comment). I usually wipe it with a Lysol wipe, but I’m pretty sure my iPhone hates me for that. One thing you can do if you don’t feel comfortable cleaning your phone, is just wash your hands after using it. And have your kids do that also. Especially after having overloaded your phone with Angry Birds and many other apps.

7.) Keep those hands off of your eyes, nose, and mouth unless you’ve washed your hands. If you must pick your nose, use a tissue (hear that kids?). If you eat a meal wash those hands beforehand! And cover that nasty cough in the crook of your arm! I’ve lost count how many times my kids coughed in my mouth. Directly.into.my.mouth.

6.) Take a good look at your bathroom and kitchen. Really look hard. See what I’m seeing? Every few days or so, with a diluted bleach and water solution, disinfect your sinks and toilet. That includes the handles (toilet handle too)! If you have to use a hand towel make sure you have a spot for it to dry and wash the hand towel at least every few days. I started using paper towels this year and that helps. You can even turn the sink off with your paper towel- cutting down on  germs. Also, keep your toothbrush away from the hand soap. For some reason, our soap pump keeps ending up RIGHT next to our toothbrushes (water splatter YUM). And if you can, deep clean your bathroom as often as you see fit. In the summer months I deep clean monthly. During the winter months I deep clean it every 2-3 weeks. Think about it- the bathroom is an awesome haven for all germs. Not to freak you out or anything.

5.) Learn to love bleach. Point blank. Plus, it’s the only thing that kills Norovirus. The.only.thing. I like Lysol and really only use it once in a while. Plus, Lysol wipes  and Clorox wipes do NOT kill many gastro bugs. Sad isn’t it? Bleach my friends.

4.) Don’t overdo it with the hand sanitizer. You end up killing tons of good germs on your hands and just smearing the bad ones all over. Hand sanitizers are really helpful in a pinch, but don’t rely on it constantly.

3.) Avoid buffets if you’re too squeamish like me. During these months I avoid eating food that’s shared by other people. I don’t care how snobby that makes me. I just don’t care. But come May, I’ll probably eat at the local Golden Corral again. I loves me some Golden Corral.

2.) Keep your fridge clean! Think about it- you touch a dirty cart handle at the grocery store or at WALLY WORLD, then you touch your groceries and stuff. Think about how many hands touched your yogurt cup or juice container. Plus, you sat your groceries on a checkout belt that even the mere thought of what’s lurking on those will definitely end my no puke streak. I’m not saying to go spray bleach on your gallon of milk..but just think about that milk handle, fridge handle, and stuff. Just be aware of what you’re touching.

1.) Get friendly with the “high” setting on the dryer. If it can kill bedbugs it can kill pretty much anything else stuck behind after washing.

I know that these tips don’t guarantee an illness free season but following some of these have proven to keep my family healthy. Ironically, we just got back from an 8-day vacation on the east coast and the idea of washing hands and using hand sanitizer pretty much went out the window by day 2. And so far, we’re all still healthy since being home for almost a week (KNOCK ON SOME WOOD). I don’t know everything, but I do know a little. Happy Holidays!

Why Natalie and I like Obama.

Please check it out folks!!

http://ireport.cnn.com/docs/DOC-876611

update overdue.

Well alrighty then! Let’s get down to business because there’s so much to catch up on!

Queen Natalie has been doing really great. Her energy level has been ridiculous and her feistiness is almost surpassing her energy level. But she’s 5 and she acts like she’s 5. She runs like a 5 year old and socializes with her school friends like a 5 year old. There was an instance last week where she was hanging out with her little buddy from class at the playground. I let him sneak my phone to play Angry Birds. Usually when we see him that’s the 1st thing he asks for now. Go figure. Natalie sits down next to him while he plays the game. He is completely engrossed in the game and she’s sitting on the other side asking him questions about other boys in the class and twirling her hair. I have to be completely honest, her questions made me giggle a bit because they were so…..   “girly”. And here’s this 5 year old boy. Responding in a very… “boy” way. “Yeah I guess so. I guess we’re still friends I dunno.”

It was so funny.

Natalie has started up with a club at school and it’s choir. She gets her chance to sing really loud and dance. She LOVES it. Now that the weather has cooled down we haven’t had any migraine issues, overheating, nothing. It’s been so easy with her in school now. The only real struggle has been getting her to eat her lunch.

About a week ago she and her class went to the pumpkin patch. Sadly, I didn’t get to really snap any photos of her with her pumpkin. We’re thinking of visiting another pumpkin patch next weekend so that’ll be a good chance to get some. She is growing SO much. Physically, spiritually, everything. Even her voice is changing into an older kid’s size.

She’s been challenging when it comes to her homework. She doesn’t really get solid homework but rather practice pages and it’s SO. HARD. to get her to do them. But while in class, her work is fantastic. Her writing is pretty funny because she writes so well but you can tell when she wrote something and didn’t want to do it in class because the letters are HUMUNGOUS. She has sight words such as, “like”, “apple”, “at”, “the”, “on”, “mom”, “dad”, “there”, “like”, etc etc and she writes small sentences and can read simple stories on her own. And Natalie enjoys it which makes every ounce of difference.

Last weekend she had the chance to see her first circus show! The theme for Barnum and Bailey this year is “dragons” and she LOVED it! She kept asking when the dragon would come out. She ate a whole bag of super sugary cotton candy and was glued to the stage. She really did love the entire show. It’s pretty cool to be able to let her enjoy something that was my favorite as a kid, too.

Natalie is also completely 100% “night trained” now!! This was all her doing. About 2 weeks ago, I start helping her pick out her school clothes and find out that she purposely wore underwear to bed. Totally blew me away!! She has had really minor instances of accidents but catches it (that blows me away, too!!) but yup, she is officially a BIG kid. Sniff……

On another note, we did lose her SSI. I just mailed in our request to have an official meeting to appeal the decision. It was a bit upsetting because even though financially we’ve been doing a whole lot better than a year ago, we relied on that income. I’m confused with how the whole process works. Plus, Natalie lost her Medicaid as a result. Thankfully.. oh so very thankfully.. I double-insured her on her daddy’s plan for fear of this day coming, so she can still visit a doctor and get care. So, it’s a little sad that we lost the SSI but hopefully I can show the errors in their decision.

Welp. That’s about it for now. I think I’m going to try out a month soon (probably December) where I will post everyday. I would try November but the Queen and her servants are traveling to Baltimore for almost 2 weeks that month. Natalie will get to spend some quality time with family and friends on the east coast. We’re driving the 1700 mile adventure in our van so let’s see how that goes! Natalie and her brother are excited so we are, too!  But I think it’s because we promised candy and to stop in every state we travel through for a small prize. Yeah that’s probably it.  ; )