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…

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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 27th warrior, LaShawn!

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

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

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

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LaShawn with his mommy : )

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

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

Presenting our 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 24th warrior, Abby!

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Heart Mom and advocate, Nicole, is the author of the blog “Perfect Broken Hearts” which is faithfully dedicated to her daughter and (ninja) warrior Abby’s CHD journey. We are incredible honored to put the spotlight on Abby today. Her blog is also a huge way to spread awareness and educate about Congenital Heart Defects. Today, February 24th, marks Nicole’s birthday! Happy Birthday!!!

If you are looking for a story about hope, bravery, and faith, then Abby’s is full of it. This is one awesome young lady who’s conquering her fears and courageously getting through the many storms that come with her CHD journey. She is one of my biggest personal inspirations. Below is Abby’s amazing story, as courageously told by her mom (a story, of course, that will keep writing itself):

“Abby was my first child.  My husband and I awaited her arrival eagerly.  Like all expectant parents we daydreamed about how she would look, if she would cry a lot or a little, what we would name her, and how life would be different once she arrived.”

“Immediately following her birth, we were told she had a loud heart murmur.  I thought nothing of this since the doctor told me they often cleared up on their own in a few days.  I had also read something about this in my “What To Expect When You’re Expecting” bible!  However, the day for our discharge came and it was apparent that something wasn’t right.  Nurses kept coming in and taking Abby for tests.  One test lasted two hours.  Soon, her doctor appeared in our room and explained that Abby’s heart murmur had definitely not cleared up.  They had performed some tests on her and they had made us an appointment the next morning at the nearby children’s hospital with a pediatric cardiologist.  The news was unexpected and completely overwhelming.  I was suddenly filled with fear and dread.  I cried all the way out of the hospital with little Abby in my arms and I cried all the way home.  The fear of the unknown was nerve-wracking, wondering what they may tell me the next morning.  I couldn’t talk on the phone without crying, my husband had to do all the explaining to well wishers and sympathizers.”

“The next morning dawned early and we arrived for our appointment.  After a whirlwind of X-rays, echo cardiograms, EKG’s, we were ushered into a waiting room to wait until the tests were back and the cardiologist could see us.  I looked around at the other mother’s.  I saw older children who appeared healthy, young babies who had oxygen tubes and tanks to help them breath, a baby with down syndrome and a cute little bubbly four-year-old.  They all seemed so at ease in the waiting room.  My mother had talked to some of them, asking questions and making friends.  I wanted nothing to do with any of them.  It was like they were part of some strange club that I wanted nothing to do with.  They had their own language that included medical terminology that was hard to understand and frightening.  I wanted it all to go away.  When the cardiologist called us in to explain the test results I realized however that none of it was going away.  We were about to become a part of this unique society.  The society was made up of parents of children born with Congenital Heart Defects.  Abby was definitely a part of them.”

“Her doctor explained that she had Tetralogy of Fallot, the most common of CHDs (Congenital Heart Defects).  Tetralogy is defined by 4 distinct heart abnormalities.

  1. Ventricular septal defect (VDS)–this is a hole between the two bottom chambers of the heart.
  2. Pulmonary stenosis–narrowing of the pulmonary artery and valve
  3. Enlarged right ventricle–this is caused by the overworking of the right side
  4. Overriding Aorta–the aortic valve has formed in the wrong location.”

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    Tetralogy of Fallot

“This was all explained and then the questions started….for some strange reason, my first and absurdly largest concern was if she would have her chest cut open and have a scar there. How odd-looking back now that my first thought was about creating a scar on her beautifully perfect little body. I was told, yes, she would need open heart surgery at some point to correct her defect. The scar would run from the hollow of her neck to just below the sternum. We were educated on surgery and the dangers associated with it. We were told she may have some other serious syndromes or diseases. We were told that Tet babies often turn blue when they cry or have a Tet spell. If that happened we needed to tuck her little knees up to her chest. We were then told we would come back monthly for checkups until it was decided to perform the surgery, probably around 12 months.”

“I was emotionally drained and devastated. The cardiologist left my husband, my mom, and myself holding my three day old baby in the room and it was silent for a moment, until I broke down crying. My mother came and took Abby in her arms and put her arms around myself and my husband and we all sat there, crying together.”

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look at this sweet face!

“The next few months flew by. We experienced the firsts most parents can’t wait to experience. The first coo, the first smile, the first funny face…so many happy firsts. We also experienced some firsts that many parents will never experience. The first sickness, requiring hospitalization and IV drug administration to clear it up, the first Tet spell, the first emergency room visit. We had the good news that Abby’s chromosomes were all normal–no syndromes or diseases. Abby was a light in our lives. She quickly became the sunshine to my soul and to all those who came in contact with her.”

“In early June Abby had a severe fainting spell.  We rushed her to the emergency room and she was admitted to the hospital again.  It was decided that her surgery needed to be performed as soon as possible.  Her heart was having to work too hard to keep her little body supplied with the blood and oxygen she needed.  The surgery was scheduled for Friday of the next week.  We took our little girl home on oxygen tubes and tanks and waited.  One week.  One week until the day we both dreaded but anticipated eagerly.  After the surgery we knew Abby would be a healthier more energized baby.  She could start to roll and sit and eat and play without wearing herself out.  She could cry a little, if her mommy would let her, without any fear of detrimental effects.  However, she first had to make it through the surgery, a feat in itself.”

“The morning of June 6 I went into Abby’s little nursery and watched her sleeping in her crib peacefully. I watched her breathing and I watched the slight fluttering beneath the ribcage where her heart beat. The heart that both kept her alive but threatened the very life it supplied. A perfect heart that took in every bit of love and joy this life had to offer. The perfect broken heart. We roused our angel and drove to the hospital, my husband and myself making small talk, avoiding any discussion of what the day may bring. Our children’s hospital sits atop a hill overlooking the city. The morning was just starting with the sun peeking over the mountains behind us. When we got to the hospital, the city lights were still on but the sun was touching the valley. We parked facing the beautiful scene and as I took Abby out of the car her big blue eyes went wide. She stared out across the thousands of twinkling lights and the glowing morning sun. She looked at me and smiled and then turned her beautiful face back to the scene. I choked back tears and knew this moment was forever imprinted on my memory.”

Abby’s 1st open heart surgery…
“Abby’s surgery to repair her Tetralogy of Fallot took place at Primary Children’s Medical Center. Abby was five-months-old when she underwent her repair. We were asked to arrive at 7:00 AM to fill out the necessary paperwork and do all the pre-op. Abby was given some Versed, a drug to calm and partially sedate. She slept much of the time while we were waiting. We met with the anesthesiologist, at which point I became emotional. He explained to us the dangers associated with anesthesia including death, brain damage, strokes, seizures and more. I tried not to cry in front of him. I tried to be calm and brave but the emotions of the day overtook me and I cried. He was kind and patient and understanding. Next we met with Abby’s Pediatric cardiothoracic surgeon, Dr. Gregory Dirusso. He was young, very young with what we had envisioned. He explained Abby’s surgery to us and answered any questions. He told us he expected the surgery to last four hours. Dr. DiRusso was extremely patient. He had the most gentle and compassionate bedside manner since anyone I had met since our dive into CHD began. He was reassuring and positive which is exactly what I needed. I had obviously prepared for the worse, how can you not?”

“It was time for surgery. We walked down a long white hospital hall. I was carrying her in my arms. When we got to the end of the hall to the metal doors, it was time to hand her over to the anesthesiologist. He gently took her from me and waited patiently as we kissed her and as my parents kissed her. She looked over the anesthesiologist’s shoulder as he turned to carry her through the doors. Her big blue eyes were questioning but calm and had that cute Abby sparkle to them. The doors closed and I took a deep breath, turned around to walk to the waiting room and wait. I watched other families come and go and I watched the clock. Around two hours into our wait the nurse called from the OR to tell us Abby was under and was on the bypass machine and everything was going smoothly. Around four hours into surgery I anxiously awaited news.  Calls came into the waiting room frequently but none for us.  By five hours in I felt that something was wrong.  Around 5 1/2 hours into surgery our cardiologist stopped by to see how things were progressing. He happened to be there when the nurse called from the OR.  She explained that the repair went smoothly. However, after taking Abby off the bypass machine, the blood pressure in the right side of her heart was dangerously high. They knew it was caused by the pulmonary stenosis which hadn’t looked very bad from the echochardograph. Once inside they realized the stenosis was severe. Because of this they had to stop Abby’s heart a second time, putting her back on the bypass machine to try to relieve the pressure and fix the stenosis. I hung up the phone and explained to everyone waiting with us.  Our cardiologist warned us that children who have to undergo the bypass machine two times usually have a hard time recovering. His warning unnerved me.  I asked, “Do you mean their recovery is slow or they don’t recover?” He told me, “Both.”  The news was hard to digest.  I began a silent prayer for Abby and her doctors in my heart, hoping things would be fixed and we would see her soon.  Around 6 1/2 hours into surgery a nurse came into the room looking for us.  She told us that Abby’s blood pressure was still too high when they re-started her heart and her heart had to be stopped again and she had to go on the bypass machine a third time in an attempt to fix the problem.  She told us she would keep us updated and left.  The discouragement and gloom that settled in the room and in my heart was suffocating. I began crying. This wasn’t what we were told would happen. We had talked to some friends who had the same surgery and Abby’s doctor all told us that the surgery would run smoothly and in four or five hours time I would be sitting there holding my little angel’s hand and stroking her hair. I excused myself to the bathroom off the waiting room. It was a single bathroom. I locked the door and fell to my knees on the tile floor. I sobbed. I have known discouragement and sadness before but until that moment I had never known anguish so deep it choked the breath out of my lungs and made it hard to breath.  I tried voicing a prayer of pleading knowing that God was the only one who could help little Abby.  As soon as my thoughts turned to Him, the sweetest feeling I had ever felt washed over me.  It filled the little bathroom. There on the tile floor I felt enveloped in love and peace and security. I took a deep breath. I stopped crying and instantly knew that things would be okay. Whatever happened, the Lord was in it and I could handle it. I left the bathroom calm and at peace.  A social worker came out and put us in a private, separate waiting room.  A sign I knew happened when things weren’t looking good. It was a way for families to be able to gather and share their grief. We went in the little waiting room and turned the lights off.  My parents, who had spent the day waiting with us, were upset and emotional.  We sat quietly and the entire time, I felt at peace and calm. Then, 8 hours after Abby’s surgery began, her surgeon appeared in our room.  He looked bedraggled and exhausted. He didn’t look like a doctor but like a man who just fought the biggest battle of his life. He explained that in order to fix Abby’s high heart rate and pressure they had to cut into the pulmonary valve to relieve the stenosis.  This meant Abby’s valve leaked and would until it was repaired at some future time. However, the heart was now functioning better than it had before and Abby was stable. Her chest was left “opened”, meaning they didn’t stitch it up but covered it with a dressing.  This was done to allow for extreme swelling and also so that if they needed to get to Abby’s heart quickly to remedy a problem, they could without any trouble.  We would be allowed to see Abby in the PICU, where they housed all open-heart surgery patients, in about an hour.  We thanked him…awkwardly and ineptly.  The peace remained and I felt overcome.  Our journey and battle wasn’t over but we reached this summit.  An hour later, nine hours after surgery began, this is what we saw…”

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Abby, immediately after surgery..

“Really Abby was just a mass of tubes and bandages. She had IV’s everywhere, a feeding tube, breathing tubes, chest drainage tubes, pacemaker wires, pulse ox monitors, and more. Her color was pinker than I had ever seen her. The nurses told us to go ahead and touch her. I was worried that she was laying there with no blankets to keep her warm. However, her skin was warm to the touch. I stayed for a couple of hours. Talking to her, stroking her hair, holding her little hand, praying that she could fight the battle ahead of her. She had made it through the surgery, now she needed to recover. We still had the warnings of brain damage, especially due to her extended time on the bypass machine. We were told sometimes coming off oxygen is a fight. We were told that taking the drainage tubes out can also be tricky. Plus, Abby’s difficult surgery could have adverse effects and she could go into heart failure at any time. The first couple days were important. This is what kept Abby alive…”

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9 medications and fluids.. wow..

“The next few days were spent more or less living in the NICU with Abby. I couldn’t bear to leave her side. If she woke up, I didn’t want her there alone and scared. Someone was always with her. Mostly myself but often my husband or my mom would come to “spell” me so I could shower and rest. The third day after surgery they closed Abby’s chest. Her heart was doing better and she was stable and recovering.”

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Day 3 and Abby’s chest is closed!

“Granted, her stare was far away and she didn’t seem to notice me there. She was still heavily sedated since the breathing tube was still inserted. The constant ssshhhh sssshhhhh was like second nature to us. I began to be a little fearful that maybe she had suffered some brain damage since her stare seemed vacant and far away. Either way, she was here, she was fighting to recover.

Day five was such a great day for us….”

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Big blue eyes open and oxygen free!

“The respiratory therapist had been coming by and slowly weaning Abby off oxygen. Little by little he would turn her oxygen down. Day five he decided to take the tube out since she had been breathing mostly room air on her own for a few hours. I was nervous. What if she didn’t breath on her own? She still seemed dazed and mostly unaware of us when she was awake. Was she going to be ready? He took the tube out and she barely made any fuss. A little coughing and sputtering and then just breathing. Breathing that was on her own! I was relieved and happy. I was so exhausted that night I left Abby alone to go and sleep a full night, in an RV borrowed from my cousin and parked in the parking lot. The next morning I arrived in the NICU to this…”

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Looking more and more like Abby : )

“Do you see it? Do you see it in her eyes? I knew instantly that Abby was alert and comprehending. She knew me and smiled at me. She interacted with the nurses. I fought back my tears as I picked up her hand and kissed her little fingers and played with her soft hair. The recovery from then on sped up. She still had tubes to be removed and some blood clotting issues to overcome. But the fight she fought was tremendous. The words thankful or grateful seem to pale in comparison to the way I feel. To her surgeon and OR team, to the staff who cared for her, to her cardiologist, to family members and friends who supported us, to a Father in Heaven who hears and answers prayers….I am grateful and awed at the sacrifice in behalf of my sweet angel.”

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Abby had her ups and downs over the next couple weeks. Not all days were fun. Holding Abby with her tubes was near impossible…she cried from all the pain. I was so happy when the tubes came out and I could snuggle her and comfort her again.

Two weeks later….

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Home again : )

Abby’s 2nd open heart surgery… the pulmonary valve replacement.

The blog post titled, “In My Daughter’s Eyes” is beautiful. Abby writes her experience of enduring a second open heart surgery. Here are her words:

“I woke up that morning ready to face what I had to do.  When we got to the hospital they took me in for a check-up.  They made me put on clown socks and old man jammies.  Then we went to the waiting room.  The child life specialist Rachelle waited in the waiting room with me.  I found Mario Party 8 on the Wii and started to play.  Soon a nurse came out and told us that Annie, the baby girl before me, was taking longer than expected.  A few hours later Dr. Kaza came out and said that he would be my surgeon.  That kind of surprised me because we thought that Dr. Burch would be my surgeon.  But I liked him a lot.  He explained the surgery and said that next time I needed a valve they probably wouldn’t have to open the chest.  I asked if they would put it up my leg.  He looked at me astonished and answered yes.  About 45 minutes later they came out and said they were ready for me.  I took squeezer, my bear,  and walked down the hall.  I wasn’t really scared… I just wanted it done.  When we got to the point where I had to say goodbye I said goodbye and went to the operating room.  The operating room was pretty cool.  The lights over the table looked like giant lasers.  When they put the mask on me and started the air I instantly felt that weightless sensation.  I talked until it went black.”

“I remember waking up puking.  Apparently I puked three times but I only woke up once when I was puking only to fall back asleep right after.  I also was apparently yelling “Mommy I can’t breathe” when I was on high flow oxygen but I don’t remember that either.  The first time I really woke up my mom wasn’t there, just a nurse.  My dad and the nurse had persuaded her to get some sleep.  I was struck numb. All throughout the night I kept waking up every hour asking the nurse to call my mom.  I finally got her to call her.”

“The next day I wasn’t very happy, just blah.  I didn’t want to do anything but the nurses had other ideas.  So I got up and sat down in a chair.  I didn’t like it.  They also made me use the bathroom.  I didn’t like that either.  I also had a problem–my back had HUGE knots in them and it made my back sore.  My grandma stayed with me that night.”

“THE FOLLOWING PARAGRAPH IS NOT FIT FOR THOSE WHO HAVE ISSUSES WITH BLOOD!

On the third day I was ready to move into my own room.  I just had to have the drainage tubes to pull out.  When they came I wasn’t too worried it hadn’t hurt when they pulled out other tubes.  The one in my side didn’t hurt to pull out but the middle one did.  They told me to breathe out when she pulled on the tube–I did as instructed.  It was a long tube so I didn’t have any more air to breathe out.  I cried out in pain when it broke free from my body.  Blood splattered everywhere.  I then was moved into my room.”

“I had a lot of visitors the next few days and was slowly getting better.  Finally it was time to go home.  I was happy to leave but I left a different person.   I left with a memory that changed my life.”

beautiful battle scars..

“That is my story of my 2nd heart surgery through my eyes.”

Here is Nicole’s personal journey, watching her oldest daughter endure her 2nd open heart surgery…through her eyes…

Day 1..”We were the 2nd open heart surgery of the day at Primary Children’s Medical Center.  That means we were assigned the afternoon slot. Surgeries at our hospital are generally assigned by age.  Beautiful Annie was having her surgery before Abby.  We were praying for both Annie and Abby and their team of doctors which were virtually the same. We arrived at the hospital at 11:30 PM.  Abby had nothing to eat since 10:00 PM the night before and nothing to drink since 8:00 AM that morning.  She has never been a big eater and she isn’t really that much of a “snacker” so the NPO wasn’t bad for Abby. Upon arrival at the hospital they took Abby back and began the preparations. Her preparations included: height, weight, blood pressure, O2 saturation levels, temperature, and medical history and allergy history.

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This is Abby’s impersonation of an “old man” since her jammies reminded her of old man pajamas.

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Rachelle and Abby

“Then, our wonderful and amazing Child Life Specialist, Rachelle, came and found Abby…just like she had promised. Rachelle met Abby at the pre-surgery class. I had talked with her about how Abby had a Child Life Specialist take her back into surgery a couple of years earlier when she had an ear surgery. This really helped her. Rachelle told us someone would be there on Abby’s surgery day and stay with her until she was asleep on the operating table. True to her word, Rachelle was there. She did an amazing job calming Abby’s fears and helping her through this time.”

“We were in the waiting room by about 12:30PM. We waited for a bit, watching other kids go behind the surgery doors for their various surgeries.  Soon a nurse came over and informed us that she was the bearer of bad news:  Abby’s surgery time would be pushed back from the 12:30 PM they were hoping for to 3:30 PM–Annie’s surgery was not done and would take some more time.  I could see the disappointment all over Abby’s face.  We thanked the nurse for informing us.  Rachelle had some other things she needed to go do but, promised to come back soon if we thought Abby would be okay until she returned.”

“After some time she began to complain of how hungry she was.  She just wanted to be in surgery.  Sometimes the Lord works in mysterious ways.  The waiting had a curious effect on Abby.  I watched as her fear and anxiety slowly dissipated into restless impatience.  She really wanted to get it done and over with…the first time I had heard that form her since this journey began.”

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passing the time with Wii and Super Mario cart!

“At 3:15 or so we met Abby’s surgeon, Dr. Kaza. He hates having pictures taken before surgery so unfortunately, we didn’t get one with him. He explained what the surgery entailed. He told us that after looking over Abby’s records and Echo, he thought he could perform the surgery without stopping the heart. I can’t tell you what a huge relief this was for us. After Abby’s last surgery, restarting the heart proved to be difficult, especially the 2nd time. Her heart was stopped and restarted three times during her first surgery. Dr. Kaza went on to explain that Abby needed a 17″ valve. If he could get a bigger one in, he wanted to, so that in the future, as long as the valve lasted, she may not need anymore replacements. We also talked about the very real possibility that if Abby did need a replacement in the future, it could be done without open heart surgery, through a catheter inserted valve. Dr. Kaza had worked with Dr. John Locke at Children’s Boston and thought this would be the way valves were replaced routinely in the near future”.

“He then explained the risks. He explained that on a second open heart surgery, cutting through old scar tissue presents some risks. Abby’s heart already contains scar tissue and this takes a lot of time to cut through and clean out. Additionally, patient’s who have already had their heart cut into can have issues with bleeding. They bleed more profusely and that can be a concern when going in a second time. They have to take their time, cutting a bit and then stopping to make sure the bleeding isn’t too heavy.”

“Then Dr. Kaza looked me straight in the eyes and explained that he couldn’t imagine how difficult this must be for us. I found myself blinking back tears…I cried all over myself right before Abby’s first surgery and I really didn’t want Abby to see me crying before this surgery….I wanted her to know I felt confident in this surgery and her seeing me crying would definitely not produce good feelings of confidence! Then Dr. Kaza said, “I will treat her as if she is one of my own.” Wow! I felt the sincerity of what he said. I knew she was in good hands….extremely capable AND extremely empathetic as well. What more could I ask for in this situation? He left and told us to watch for the anesthesiologist to arrive soon.
At 3:45 PM a doctor dressed in scrubs came through the door, looked around, and said, “this must be my patient.” He was Abby’s anesthesiologist. He came over and explained all the “business” stuff of anesthesia and then said it was time to go. Abby asked him a few questions. Earlier she had been asking us how the anesthesiologist would be able to make sure she would stay asleep. One of her biggest fears was waking up during surgery. We assured her she wouldn’t wake up. She asked Rachelle if she started to wake up if the anesthesiologist would hit her over the head with a bat. We chuckled a little and assured her he used only medicine. She asked the anesthesiologist the same questions. He explained that he sat right next to her bed the whole time and watched her heart rate, breathing rate, and other body functions that told him she was asleep. He explained that all those things slowed down when people were in a deep sleep so he would know she was still sleeping.”

Abby suddenly chimes in, ‘Wow, you have more to do than I thought.’

The anesthesiologist, a perfect fit for Abby, chuckled and replied, ‘Well I’m not sitting back there reading the paper!’

She then said, ‘Well, how do you keep me asleep if I start to wake up?’

He reached onto the bed she was sitting on and said, ‘I’ll hit you over the head with this!’ He had picked up a toy hammer that was on the bed!’

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At the end of the hallway, we stopped at the “see you later line” and I kissed her, and told her I would see her when she woke up. She then walked over the line that separates me from her, and she marched down the hallway with her anesthesiologist and Rachelle and didn’t look back. No tears, no long “see you laters”, just pure courage.

“I think this picture says it all.  I don’t know many adults that would walk down this hallway and into open heart surgery like this, but Abby did!  She never faltered.  She showed me that their was no place for fear, only courage in the face of that fear.”

“, only four hours after starting, Dr. Kaza appeared.  He explained that they had finished and everything went not only good, but great…textbook!  He was able to fit a 21″ bovine valve in…21″ was awesome.  In all actuality, as long as the valve lasts, she won’t need another one put in because of size!”

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Day 1, post op- right after surgery..

“She looked amazing compared to how she looked after her last surgery.  She had high flow oxygen…her lung collapsed when being extubated.  I really was hoping they would keep her intubated all night and let her rest but, everything went so well, they attempted extubation and it collapsed her lung.  She was doing okay though, with SAT’s in the high 80′s and low 90′s on the high flow.”

“Our little spunky fighter had done it.  She now had the road of recovery ahead of her….once again.  Little did I know that even though this surgery was a piece of cake compared to the first one, the recovery would be much more emotionally trying for my sweet girl.”

“Day 2.. She was crying and literally begging for medicine.  She kept calling out, ‘Ten! Ten! Ten!’ (meaning the amount of pain she was in on a scale of 1-10) and saying ‘I can’t breath, I can’t breath!’  The nurse was administering something in an IV.  I asked which medicine she was giving her, hoping it was morphine.  Abby was obviously in a lot of pain.  The nurse said, ‘Abby I’m giving you medicine now.'”

“I again asked, ‘What kind of medicine is that?'”

“The nurse quietly, and under her breath, said, ‘Regulan‘.  I was so appalled.  As if they were calling my sweet girl a liar.  They were trying to trick her into thinking they were giving her something for the pain.  As if she really wasn’t in pain and she would calm down when she thought she had been given pain meds.”

“Their hypothesis fell flat!  They had to call the head nurse in to come see when ten minutes later Abby was still in a full-fledged panic attack and still BEGGING for pain meds.  I looked at the nurse and said, “Abby is in A LOT of pain.  She needs medicine…for pain.”

“The pain medicine was administered and five minutes later Abby was resting comfortably!  The pain was not in her head.  What a reminder to me that I am my child’s best advocate.”

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Day 2 post-op.. high-flow 02 off and arterial line removed… but poor Abby was very depressed and very miserable.
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They also made Abby get up this day and sit in the rocking chair. She still had drainage tubes between her ribs and was dealing with a lot of pain but, they wanted her to get up and moving.

“As a mom, I hated watching them force her to do things that caused her pain. My head knew this was all helping her to get better but my heart hurt and wanted them to leave her alone and let her rest! She struggled with some arrhythmias on and off–but they seemed to be leveling off and getting farther and farther between.”

“My mom stayed with Abby the night of Day 2.  I went to get some sleep.  When I arrived at the hospital the next morning, Abby was not in her CICU bed in room 11.  In fact, no one was.  A nurse showed me to where Abby was.  She was being prepared to move to the floor!  She had moved to a different section of the CICU because she would be moved that day! Wow!  What great news.  She seemed a little more alert and was not taking as much pain meds.”

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Before leaving the CICU, Abby had to have an ECHO and one more hurdle to jump…drainage tube removal.

“THE FOLLOWING PARAGRAPH CONTAINS DETAILED DESCRIPTION

The drainage tube removal was by far, the worst part of the whole experience for Abby. They had give her some pain meds shortly before the removal but, it didn’t deaden enough! The first tube out was the smaller tube on her right side. Abby took a deep breath in and blew out just like instructed. The drainage tube from the middle was excruciating for her. The nurse practitioner unwound the cord holding it in place and then told Abby to take a deep breath and then blow all her air out for 5 seconds. Abby did and the nurse pulled…hard! The tube was longer than I imagined and made a mess all over the nurse and me–including my face! Luckily, my squeamish tendencies disappeared after Abby’s first surgery.”

“With the tubes removed, Abby felt much better.”

“She settled into her new room with visitors….lots of visitors.  By the end of the day she was completely warn out with all the visits.”

“Her mood remained sullen most of the time…she would try to smile and act happy but, she was really just tired and warn out and sad to be there.”

“Day 4 began with new jammies from home and talk of discharge!  Although we would have loved to go home…I had two concerns.  She couldn’t walk the few steps to the bathroom yet without being completely overwhelmed with exhaustion and, without oxygen on her SAT’s were still falling to the low 80′s.  Her lung and body needed a bit more rest…at least in my opinion.  The doctor’s agreed to let her stay one more day.  Which was good.  The day provided a lot of time to gain some strength.  She was able to walk down the halls a bit.”

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walking with mom!

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going for a ride with dad!

“Day five dawned brighter…for all of us.  Abby was getting back to herself.  Real smiles and real laughs, even if just a few!  She was able to take the oxygen off and her SAT’s remained in the low 90′s.  By 10:00 AM they were going over discharge papers and ready to send us home.  Abby was ready, still tiring easily but not AS easily.  She had to continue to use the sporameter to help improve her lung function and she would need to continue to build up her stamina and sleep lots but….we were homeward bound!!!!!”

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Abby getting ready to bust out of there! Here she is with mom and dad : )

“This surgery was much easier…on me. The anxiety leading up to the surgery was much worse than the actual surgery itself. Abby, on the other hand, had a hard time during recovery. She struggled with depression and anxiety on levels I wasn’t prepared for. In my eyes, the surgery was quick and so much better than I was expecting. In her eyes, it was hard. The recovery was difficult and the hospital stay was hard. She is full of spunk and fought through, in true Abby manner though! If I ever need to learn about courage in the face of trials and overcoming obstacles, I need only to look to my daughter, and her journey to heal her broken heart.”

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…AND SHE’S HOME!

“But, time has a funny way of changing things. We thought Abby’s heart was repaired and that life would go on for her, like it does for the big majority of TOF babies. Abby’s road is not the average TOF road though. After her pulmonary valve replacement in 2010, we thought our heart days were over and done with. I had never been more relieved. With the advances in technology, the next time Abby needed a valve, it most likely would be done through a cath in her leg. But, a year later, in October of 2011, we were in for a shock. At a routine cardiology exam that was needed before Abby could have scoliosis surgery, her cardiologist found severe left ventricular dysfunction. Her left ventricle was working at 13%. It was non-viable dead tissue over the entire apex of her left heart. She was immediately admitted, put on milrinone, and put through test after test after test to see what had caused it, why it was happening and IF it would clear up. Unfortunately, the cause is still unknown, and Abby’s heart is in early stage heart failure. She had a pacemaker/defibrillator placed (October 26th, 2011), as she has a huge risk of a “sudden cardiac event.” And, a heart transplant is the only option in Abby’s future. She will slowly decline until she gets “sick” enough to be listed on the heart transplant list. Then, her perfect broken heart will be replaced by a new one. We are thankful this is possible and with today’s medicine and advances outcomes are very positive. But the road ahead is challenging, and filled with uncertainties and Abby’s future looks different than it did two years ago. Nevertheless, Abby is a fighter. Abby is filled with more determination than anyone I know. We will keep fighting and looking forward with hope to a future where her Perfect Broken Heart is healed.”

April 9th, 2012, Abby is listed for heart transplant

April 12-13 2012: The Miracle: “We got to Primary’s at 10:00 AM and quickly found that we were still in the waiting mode.  There was no certainty as to when Abby’s new heart would arrive.  At first we were planning on some time in the late afternoon.  While we were waiting we were given a room on the floor and we watched TV, facebooked, played games…and tried to pass the time.  Abby had labs done and an IV started.  By 4:00 in the afternoon we were still waiting with no word on time.  Abby had been on food restrictions since we left that morning and was starting to get hungry and a bit restless.  We were told that it wouldn’t be until at least 10:00 PM…maybe later.  We had visits from some fellow heart moms and Abby’s grandparents who drove down from Montana who were at the hospital and by 10:00 PM Abby was tired and hungry.  We encouraged her to get some sleep and by about 11:00 she was sleeping and Justin and I decided to do the same.  We were told that they were having a hard time placing the lungs from the donor and we still didn’t have a definite time.

I slept on and off, drifting in and out of strange dreams.  I couldn’t help but think about the donor family.  Somewhere a family was saying good-bye to a special child.  They had decided to donate their organs and were now waiting…just like we were.  But instead of waiting for new life, they were waiting to watch their child leave this life.  The thought was heartbreaking.  And the thought that in their moment of anguish and grief, they made a choice that would give Abby a chance at life touched me and  I came to understand more wholly the meaning of words that most people only casually use…words such as sacrifice and charity.

At 4:30 AM Abby’s nurse came in and told us it was time to go.  Abby’s heart was on its way here and she was due in the OR room to get prepped.  We walked down the hallway and Abby looked up at me and said, “I’m a little bit nervous now.”  She’s amazing, isn’t she?  It was the only time she showed any bit of apprehension or fear, but even though she was nervous, she remained calm.  We saw Dr. Kaza who told us the heart was on its way and looked like a strong heart.  We told her we would be there when she woke up and left her in the capable hands of Dr. Kaza and his team.

The operation ran smoothly, with regular updates.  At one hour in, the lines were all placed.  At three hours in she was just going on bypass.  At four hours her heart was coming out and the new heart going in.  At six hours the new heart was in and she was being taken off bypass.  Seven and a half hours later Abby was done.  Her old perfect broken heart was now removed and her new perfect heart was beating in its place.

We experienced a miracle…or at least a series of miracles, that have given us a new heart for Abby.

Her recovery is slow but gradual.  We are experiencing the ups and downs of recovery.  A slow beating heart, missing P waves, high levels or low levels  of certain properties of the blood, some valve regurgitation…but all these are common after transplant.  All these are things that we are hopeful will clear up within the coming days or weeks.  We won’t know anything about rejection or how Abby’s body is receiving the new heart for a couple of weeks.  But so far, her team seems pleased with how well the heart is functioning and how well Abby is recovering.

The days and weeks and months ahead seem a bit overwhelming.  And I have to admit a part of me just wants Abby’s old broken heart back.  The one that wasn’t failing.  The one that had repaired Tetralogy of Fallot and nothing else wrong with it.  But that wasn’t the path Abby’s heart defect would take her.  Instead we are venturing into the realm of the broken heart made whole through organ donation.

We have bright hope that her new heart will remain whole and strong for years to come.”

Abby- forever the smiling warrior. : )

DSCN08031-1024x768 This is my daughter–examining her heart.  She held it, looked at it, and came to understand WHY her heart failed…

Dr. Kaza came out after Abby’s heart transplant to let us know how things went and that Abby was stable and looking good.  We talked for a bit and my need to know finally got the better of me.  I asked if after seeing Abby’s old heart, they may know what had caused Abby’s heart failure.  He explained that Abby’s coronary arteries, like many children with congenital heart defects, were malformed.  She has extra arteries, small arteries, and arteries that twist and turn in a very complicated manner.  During Abby’s very first Tetralogy of Fallot repair, her surgeon, Dr. DiRusso, had a difficult time placing the transannular patch to relieve her pulmonary stenosis because of her complicated coronary arteries.  The patch pushed her heart up into an unusual position.  As the scar tissue grew it continued to pull her heart into a strange and unnatural position.  Ten years later, when Abby needed a new pulmonary valve, the scar tissue had occluded her complicated coronary artery system.  The transannular patch that was used during her valve replacement was laid directly on top of her Left Anterior Descending (LAD) coronary artery, which was hidden by scar tissue.  The valve which was placed was as large as the surgeon could possibly go, which is a very common practice for valve replacements in children, as it prevents multiple surgeries as the patient outgrows it.  The patch pushing down on the LAD and the large valve pushing in on the LAD made a partial occlusion.  As the scar tissue began to grow around the stitches of the new valve, it completely closed off the LAD–and the blood flow to Abby’s left ventricle.

Dr. Kaza told me he would take the blame…but that is NOT what I wanted.  I did not care what caused the problem.  All Abby’s surgeons acted in her best interest.  Dr. DiRusso worked with what he had and saved her life in the face of less than optimal circumstances.  Dr. Kaza, who has operated on Abby every time other than her first, is a skilled surgeon who acted in a manner concurrent with current practices.  I absolutely do not blame anyone for circumstances they couldn’t have possibly foreseen.  Abby’s heart and coronary artery anomalies all set up the perfect storm.  I have never looked to lay blame.  What I have done, is wanted knowledge and understanding.  I hope that some one else may benefit from it.Please read further..here: Before Pulmonary Valve Replacement…Please Read This.

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this is just a small taste of post-transplant life..

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Check out Queen Abby now!!

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“Trotting…Every accomplishment or new experience reminds how amazing this girl is! She is a fighter and is filled with not only a determined little spirit but an unquenchable thirst for living! Here she is riding for herself and for all her ♥ friends and angels she loves and cares for!!!” – Abby’s mom, Nicole

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After you bookmark “Perfect Broken Hearts” please visit and “like” Abby’s support page on Facebook, called “Abby’s Perfect Broken Heart“.

Presenting our 23rd warrior, Sydney!

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

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

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

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

Presenting our 22nd warrior, Natalie!

Being pregnant with Natalie was actually pretty awesome. The nausea was still all day long, but compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along. This probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don’t switch if you don’t have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be “top notch” (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I also was using Medicaid and I can only guess that the doctor didn’t want to “overuse” it. I had to pretty much beg for an ultrasound since I hadn’t had one yet, so at 26 weeks I finally found out that Natalie was a “she”. During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her “so I hear the scans weren’t clear enough at the ultrasound” and she stated that everything was perfectly fine.

Nowadays, I know to never even take a doctor’s word as the final word when I feel uncomfortable with the answer. But at the time, I just let it slide, even though I felt frustrated, but I just knew that everything was probably..well..fine with Natalie.
The pregnancy went to full term and I had to evict Natalie by scheduled induction on April 21st, 2007- the same day as her daddy’s birthday.
The labor was fast and furious and she was born 3 1/2 -4 hours after labor was induced. She was also born with a clean bill of health and nice and pink. Apgar scores both 9, we were so ecstatic. A healthy baby girl born April 21st, 2007 at 8 lbs even and 21 inches long. Even taller than her big brother. Ha!

Every thought about our unclear sonogram photos went totally out the window. The nurses and doctors all heard Natalie’s murmur pretty soon after the birth, but we were told not to really worry because it’s so common to be born with a murmur that closes up quickly. Right before our 24 hour discharge from the hospital, the nurse who checked Natalie out said the murmur was gone and we were given the discharge papers. Home here we come! We got home and right that evening, my mom in law noticed how purple Natalie’s feet were. I was so deliriously tired that I shrugged it off as nothing serious, that “well, she has really fair skin like her daddy”. We never noticed much of the “purple spells” again so our overly exhausted brains didn’t think much of it. We followed up with our regular pediatrician for the usual few day old checkup and sure enough, our doctor heard the heart murmur loud and clear. Our doctor couldn’t believe no one caught it before we left for home a few days ago. The murmur never went away. Getting a bit concerned, our doctor gives us a referral to go and see a heart specialist at Johns Hopkins Children’s Center.

May 8th, 2007….
we were in the pediatric cardiologist’s office. Natalie’s oxygen saturation was 90%, but her weight and color were normal. At the time, I didn’t know much about the pulse ox numbers and how it worked, but now I know why they rushed to get her into the room to have her heart scanned. They knew something wasn’t right- 90% is not normal.
While scanning her heart during the echocardiogram, the doctor walks into the cramped room about 20 minutes into the test and heavily stares at the screen for a moment. He then sits down next to the tech and says “hmm..Natalie you’re even trickier than I thought”. He went from kind of concerned to really concerned. I’m sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ, drinking from her bottle. The echo had to be at least an hour.
A little bit after getting settled into the exam room, the cardiologist walks in, really stern face, sits down with me and tells me how sick Natalie is. He explains all of these medical terms..but my ears aren’t letting much of it in… neither were my eyes because the tears kept me from seeing his diagrams.. finally the tears fell so I could see the diagram he took some time to draw: something to show me exactly how Natalie’s heart looked. He explained how she wasn’t born with a right ventricle, that it wasn’t functioning at all. That she has a VSD and an ASD but those 2 defects typically came with the defect of Tricuspid Atresia and that her ASD (Atrial Septal Defect) was actually helping to keep her alive. It was so much to take in.
I was so scared to hear more, but I knew I had to hear him talk. Truth is, I wanted him to stop talking. He let me cry and even left the room for a little bit to let me cry it out. Poor James and my mom in law were sitting in the room, too. I was holding Natalie and giving her a bottle and just was in such denial that she was sick. I kept repeating that she didn’t look sick- even her fingers and feet looked nice and pink.
From the time that Natalie was diagnosed to the time that she had her 1st of a few surgeries, the doctors at Hopkins and our pediatrician all kept a really (really) close eye on Natalie. We went in for weigh-ins and pulse ox checks a few days a week at the pediatrician’s office and almost weekly at Hopkins Hospital. We spent almost everyday at a doctor’s office. My husband and I studied the anatomy of the heart and I tried my best to figure out exactly how a Tricuspid Atresia defect functioned. As a new “heart mom” I wanted to be the expert at everything- all the way from diagrams down to exactly what to expect when she’s an adult. I was terrified of having more horrible surprises. I guess that was part of my grieving process- grieving the loss of a perfectly healthy baby girl.
Even with Natalie’s cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny for a little while and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt.

The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we “beefed” Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. What a relief to have a nice chunky, big-cheeked baby girl.

(last of a few photos without her chest scars)

She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie’s scheduled heart surgery. Right after they finished, the cath doctor pulls aside in the hallway by the cath lab and tells us “well..we can’t wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change.” My husband’s jaw dropped. I remember how gray Natalie’s skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the mid 70s. It was time. If she wasn’t going to have surgery very soon, she was going to die.

On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle and focus on her upper extremities. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100% of the time with the Fontan.

 

It was a textbook case to the Hopkins medical team and it was a true miracle to us. I remember the advanced students (they called them “fellows”) who visited the PICU and each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!
By Friday, October 5th, 2007 Natalie left for home! Her surgery went perfect and her body responded perfectly to the surgery. She was sore, but the incision (scaring the crap out of me, I can’t lie) was the only most difficult part of the physical care. I was so scared to do something wrong. And hearing Natalie cry from the pain… no mom or dad wants to see their baby in real, uncomfortable pain like that. But within a week of being home, Natalie was showing tons of signs that she was handling it more easily and she was feeling more comfortable.
From the time we brought her home until 2009, we just enjoyed her. She was able to do physical therapy and Natalie finally started walking around 22 months. Her energy, everyone could tell, was pretty good! At one point during Natalie’s recovery, her cardiologist said “Natalie’s body was made for this”. It had seemed that Natalie’s body was created to cope with the lack of her other ventricle.
In April of 2009 Natalie turned 2, we moved to Colorado from Maryland. Hopkins gave us the all clear that she should be able to handle higher altitude, particularly in the lower areas, like Denver. We were told that she probably wouldn’t need her 2nd open heart surgery- The Fontan completion, until around the age of 4 or 5. We had more time to just enjoy Natalie.
The move went well, we quickly found a great new pediatrician to help us keep an eye on Natalie’s health. During the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was trying to be active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children’s Hospital of Denver in mid-September for a sedated echocardiogram. That’s when they threw a huge curve ball at us- they decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!
We had a heart catheterization scheduled for October 8th, 2009. This was a way to prepare the heart team at Children’s: to really get a closer look at her heart and past surgery.
We had another curve ball- the heart team found 3 collateral veins that had to be closed off right away. These veins grew at some point over the year or so to overcompensate for the insufficient blood flow. But instead of helping Natalie they decreased her blood flow, which is why she was getting so tired all of the time. After a night stay in the hospital, Natalie recovered well enough to go home and rest. About a week later, Natalie’s energy was THROUGH THE ROOF. She was like a totally different kid. She was jumping and running and being a crazy 2 year old. Her collateral veins were closed off with platinum so there’s always a running joke now how expensive Natalie’s insides are. The only thing missing now are diamonds, which if Natalie could have demanded diamonds she would have.

On the early morning hours of Tuesday, January 12th, 2010, we brought Natalie back to Children’s for her Fontan operation. We were so very lucky to enjoy her through Halloween, Thanksgiving, Hanukkah, New Years, but now it was time to get back down to business.
(Fontan Completion with fenestration)
Her body was ready for this operation even if us parents were not. Other than some extra “oozing” as the surgical team calls it, Natalie’s transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to “finish off” what her heart and lungs needed.
We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit “freaked out” with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too.

By Monday night on January 18th Natalie was strong enough we were all HOME. Those are 4 beautiful letters. She did need continuous oxygen for a while, but we were prepared.
Natalie recovered beautifully. It was, once again, a text book case. We were all so thrilled. Within about a week of coming home, it was so hard to get Natalie to take it easy. Her energy level was pretty great and it became tricky to keep her from hitting her incision. But her incision healed beautifully. There were even moments we were given the green light to let her have a break from the continuous O2. As you can imagine, that was like heaven to Natalie.
We used the oxygen therapy until about April and we didn’t look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week).
Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 5 year old. She’ll be turning six in 2 months! She asks about her scars once in a while and tells us that her tummy and chest scars are “cool”. She has just started to deal with comments from other children in her class and she’s learning how to deal with that. She’s also begun to ask “why me”? concerning her special heart. That’s a really tough question to answer.
To date, Natalie has about 9 visible scars from her surgeries- her “zipper” (she loves it when I call it that), chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She attends full day kindergarten, loves horses, LOVES art, My Little Pony, and  has had a Make a Wish trip to Disney World. She’s the kid, out of the 2 we have, that we’ll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker. Watch out world! Here comes your present day Shirley Temple! : ) (that comment comes from a resident at a nursing home I used to work at that called Natalie “Shirley Temple”.)
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