Tag Archives: the future

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 Valentine’s Day warrior, Reid!

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

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

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

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

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

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

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

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

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

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

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

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


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Presenting our 13th warrior, Keely!

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Look at this beautiful warrior! Her mom, Emily, has been so incredibly gracious to share her story with us here at Queen of Hearts. And we could not be more lucky. Once I immediately connected with her mom and saw the photos of Keely smiling, I couldn’t stop smiling! Infectious I tell you! I still am partial..but all CHD warriors are extra beautiful. Keely just proves that. Please read Keely’s story as told by her mom, Emily:

“Our daughter Keely was born with a numerous amount of complex Congenital Heart Defects (CHD) which effects 1 in 100 babies born. She was born with Hypoplastic Left Heart Syndrome (HLHS, meaning she has a single ventricle and most the structures on the left side of her heart are very small or underdeveloped), Pulmonary Valve Stenosis (blood is allowed to flow into the pulmonary artery but not back into the right ventricle), Ventricular Septal Defect (VSD, means not enough blood pumps from the heart into the aorta), Double Outlet Right Ventricle (DORV, meaning her aorta rises from her right ventricle instead of her left ventricle which is the normal chamber that pumps blood to the body) and a complete blockage of the AV canal. Keely also has 2 Superior Vena Cavas instead of one.

Keely was also born with “Heterotaxy Syndrome” which is a rare birth defect which involves the heart and other organs. The beginning of the word- hetero means “different” and the end- taxy means “arrangement.” In some cases of Heterotaxy Syndrome, the spleen may not work correctly or may be missing entirely. In Keely’s case, her stomach and liver were developed on the right side and she was born without a spleen. The doctors say that Heterotaxy Syndrome is what may have caused our daughter’s “unique heart.”

The doctors said that Keely will have to undergo about a minimum of 2 Open Heart Surgeries. The first Open Heart Surgery is called the “Bilateral Bidirectional Glenn Procedure” which repairs the top half of her heart and was done on March 19, 2012. The second Open Heart Surgery is called the “Fontan Procedure” which will repair the bottom half of her heart and is to be done around the time she is 2 or 3 years old.”

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Keep rocking that gorgeous smile girlfriend! You are a true warrior!

Presenting our 10th warrior, Alexia!

I connected with Alexia a few years ago through Facebook and blogging. You can read her updates at her blog “Life”. There are lots of things to love about Alexia. One of the biggest things that I love about her is her ability to connect with fellow CHD parents, letting them know that it’s okay to let your child live their life. Through Alexia, I’ve learned that it’s okay for me to let Natalie run, play, skip, jump, and wrestle her brother. Life allows her to do that, despite a heart condition. I cherish my own child’s abilities more than anything because of learning this through her. Alexia is very inspiring. She’s smart, pretty, and very unique. Like all adult survivors of congenital heart disease, Alexia is not defined by her CHDs. She has been a critical part of keeping me sane with Natalie’s diagnosis. She is selfless and full of Life. Here is her story:

“I was born December 29th,1985 at 2:35 am. I was born by C-section at 42 weeks gestation. It wasn’t until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSDs and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done.

Screen shot 2013-02-10 at 1.32.09 PMAt six months old I had the Blalock-Taussing shunt put in.
When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. It was decided that I was an excellent candidate for the repair and that was the surgery I had done in August of 1990. In 1998 I had emergency open heart surgery to replace my aortic valve. I had a very rough recovery period.
In June 2005 I was told by my cardiologist that I would need a second Aortic Valve replacement. I was starting to experience symptoms that were indicative of heart failure. The doctors wanted to do the surgery right away because my right ventricular function was still really good. In the weeks that followed it was decided that we would go with a mechanical valve this time.
Monday July 11th,2005 I arrived at the hospital at 5:30am and by 7:30am I was ready and waiting to get going. The following Tuesday, just 8 days after surgery I was released.
I have had minor issues since then but have not been hospitalized for them. I have a full life with a close family and great friends. I am getting ready to launch my own photography business and I look forward to helping people capture their memories with photographs.”

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Now that you have read Alexia’s story, please visit her Facebook page right away!

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Go send some love!

She has also created a Carepage that her mom will help update starting tomorrow. There are updates pre-surgery right now, so feel free to sign up and follow Alexia’s heart health. She’s having a catheter ablation on Monday to help ease, hopefully, erase her arrhythmias. Please send love and support for Alexia. It’s been 7 1/2 years since her last heart surgery, so as you can only imagine, it’s a good reason to want this catheterization over with and have it be successful.

Presenting our 6th warrior, Yasmin!

Meeting adult Congenital Heart Defect survivors is something that constantly amazes me. As a parent of a really young CHD survivor, you have to read these survival stories and let them sink in. You have to, because they are real and they are so unique and it only feeds into your hope, if you let it. If you let it, then it sticks and it’s contagious (that’s an awesome thing!) Connecting with Yasmin has definitely been one of my most favorite parts of being inside the world of CHD. She is ah-mazing! It’s impossible to read her story and not smile. Even her beautiful smile is infectious! Here is Yasmin’s story:

“Hey There. My name is Yasmin and I am 27 yrs old, and I was born with a heart condition called Tetralogy of Fallot. I have had two open heart surgeries and I had my first one at the age of three and my second at the age of twenty.

When I was born, my parents were wondering why I wasn’t a pink baby! I was a “blue baby” and I stayed blue for a very long time.

My Drs ran all the tests such as X-rays, ECHOs, EKGs, and CT scans; they didn’t find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (Ventricular Septal Defect also known as pinhole) and ToF (Tetralogy of Fallot)
I was closely monitored while growing up and I was fine until the pinhole in my heart didn’t close on its own and the doctors had to surgically close it. My first surgery was at Children’s Hospital in Los Angeles in 1988 and the doctors closed my small VSD (ventrical septal defect) and they put a homeopathic conduit it to connect the left and right side. I was told that because I was growing that the child’s size wouldn’t fit and this is why the doctors put an adult conduit in. On a return visit for a check-up I got the petal stuck on the sink (they had the ones where you stepped on the petal and washed your hands), and so they moved us to a new room. In the second room I was playing on the bed and my Dr had his hand on my head so that I wouldn’t bump it. The bed had a storage area under it. I was doing great, and the doctors said ” I would have to have a second one at the age of thirteen” but I didn’t need it then because I was growing perfectly.

By the time I was twenty I was already showing signs of needing another open heart surgery, and the reason that my Dr and my parents came to that conclusion was because I was pale and my blood pressure rose (it was 300/91, or 200/90). I was 20 years old and on blood pressure meds. In November of 2005 I went in for my second open heart surgery where they replaced my conduit and they also put a metal stent in. They used the stent to widen my arteries that were small and narrow and they also replaced my pulmonary valve. This was performed at UCLA (University California Los Angeles) by my surgeon, Dr. Hilal Laks who did a wonderful job. However, during my second surgery I had a few complications: like my heart was sticking to the sack that holds it in place so it doesn’t hit the ribs, and that was bloody. Then a few days before I was supposed to be released my white blood cell count flew through the roof. I then somehow had gotten an infection and my left lung filled with fluid and collapsed. The doctors drained it and I was released November 25,2005.

I am currently doing great health and spirits.

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I have just married my soulmate on July 10, 2010 and living life one step at a time.

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I found my heart as a blessing, and it has taught me compassion, love, and wisdom.”

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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