Tag Archives: Tetralogy of Fallot

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 21st warrior, Steve!

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

Steve is one of those stories and names.

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

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

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

We were all incredibly blessed to have him.

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

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

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

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

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

Preach it!

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

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

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

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

July 6th, 2010: You’ve Been Warned

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You tell ‘em, George!”

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

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

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

Presenting our 19th warrior, Gabby!

I don’t know what I love more about this family.. The fact that we live in the same state or that we have SO much in common with our stories! Looking at Gabby’s photos, you can’t NOT smile. She is one adorable kiddo, who’s going to go places. Actually, I could make a really long list of reasons why this family rocks, but instead I ask you to read Gabby’s story. Her mama does an amazing job:

“My pregnancy was a healthy and long one (2 weeks overdue), so I had to be induced. Gabriella Gross entered this world on October 27, 2011, and was quickly labeled a beautiful healthy baby girl. About 3 hours after birth, we began missing the first signs of CHD. Gabby didn’t want to wake up for like 5-6 hours. All the nurses were freaking out and telling me to wake her up and feed her. I kept trying to wake her up. She didn’t want to wake up. I didn’t really know any better so I actually wasn’t nervous and eventually she woke up.

At home Gabby and I began the process of sleep deprivation and breastfeeding, but again I missed the same sign that my little one was basically sleeping through the night on the first week. I joined a local lactation group where I could weigh and feed her, and I quickly noticed Gabby never ate over 1.5 ounces at any feeding. Plus, she would fall dead asleep after eating. I also started noticing her weight was dropping off. But I had two pediatricians and two lactation consultants telling me this baby is healthy, “look at those cheeks”, “this baby is getting everything she needs”, and “your milk supply is fine”. Ironically, I was even given a therapist card and I was told maybe it was postpartum blues.

Gabby started getting older and more awake, and then she wanted to eat, what felt like, every 45 minutes. I decided I didn’t have enough milk so I switched to the bottle when she was about 2.5 months. I remember my girlfriend feeding Gabby the bottle and saying “I know why you didn’t breastfeed, this girl won’t even finish a bottle without stopping and pausing numerous times.” Even after a month of bottle feeding, Gabby wasn’t gaining much weight. She had fallen from 50% to 15% in weight. Still, the pediatrician said this is such a healthy baby, and being a new mom I went home. Another month passed and I was visiting a friend in St. Louis when we weighed Gabby on the baby scale at a children’s museum. This time, she hadn’t put on any weight. But I thought the scale must be wrong.

Fast-forward, and Gabby is now 4.5 months old. It was time for her 4 month check up. I had a list of questions I wanted to ask the pediatrician that morning (1) Do you know why Gabby would turn purple when we go up to the mountains? (2) Do you hear Gabby’s grunting when she tries to do tummy time……like she’s working so hard? (3) What do you think of Gabby’s weight and feeding? Well, I never got to ask my list of questions (which ironically were due to her heart problem), because Gabby had cold symptoms during RSV season. Because of the wheezing the doctor pulled out the pulse ox machine. After 10 minutes later we are off to the hospital in an ambulance (her pulse ox was bouncing between 60 and 80). RSV and other tests were negative, so eventually an echo was ordered for the following morning.

March 15, 2012 is a day I will never forget. The echo technician arrived at 7AM (before Joe even got back to the hospital). She told me, the doctor will review the results today and call you this afternoon. The echo begins, and I could tell the technician was getting frustrated with Gabby’s lack of cooperation. So she said, “I’m going to go find her a pacifier” (even though I told her Gabby doesn’t like pacifiers – probably another sign we missed). The technician came back and started up the echo again, and after a couple of minutes she says, “oh the doctor is going to stop by on his way in to work”. THUMP THUMP THUMP went my heart and I just felt like puking and crying. I knew something was really wrong when the doctor was going to stop in on his way to work.

The next words I heard that day many CHD families understand…. being told the diagnosis that your child has a severe congenital heart defect that would require a lifetime of surgeries.  Gabby has been diagnosed with Tetralogy of Fallot with Pulmonary Atresia and MAPCAs. MAPCAs stands for Major Aortopulmonary Collateral Arteries which is actually rare; about only 300-500 kids a year are born with it. You know it’s rare when we were interviewing doctors and they wanted to do an echo for free, just because they wanted to see the MAPCAs again.

GABBY LIVED FOUR MONTHS WITHOUT A PULMONARY ARTERY.

Gabby’s MAPCAs were so large, they were adequately compensating although she was obviously starting to struggle more.

Gabby wasn’t diagnosed during ultrasounds, and no one heard the murmur or checked a pulse ox before leaving the hospital (the pulse ox would have caught it).  Sometimes I am sad when I look back on so many of the missed signs. That if I had been educated and I had known the signs 1) she slept and slept and slept the first 3-4 days (and later at 3 months old she would fall asleep while playing) (2) feeding wasn’t going well (3) we took her to the mountains twice and she would  turn blue (4) she was grunting or heavy breathing when she tried to roll over or do much activity (5) and she was even retracting when she was breathing (6) she did have rapid breathing rates which I know can’t help but see on old videos. But I cannot be sad or resentful for things that I cannot change. I only hope that I can help change the world that so many families live in. I hope to help change the world of CHD for the better. I hope to be a resource to new families with CHD, and I hope to raise funds for research for CHD, and hopefully I will continue to educate as many pregnant family and friends as I can on the signs.

Gabby had her first heart surgery (all defects corrected)…

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Gabby, post-op..

and she is doing great. She will need many more surgeries to replace her pulmonary artery as she grows, and her MAPCA’s have a high risk of getting smaller rather than getting bigger. But Gabby is doing great right now!!

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She walked at 11 months (even after an open heart surgery at 7 months). She is a thrill seeker at 15 months (loves swings and climbing and riding any moving car or horse). She is so interactive with us and is trying so hard to start talking. I can’t imagine life without her, and I’m so glad she was born in 2011 and not 1951. I pray daily for our family, families like us, pulse ox legislation and stem-cell research.”

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Right on! ; )

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Gabby enjoying a hike with her family. : )

Presenting our 12th warrior, DJ! (post-surgery photos included!)

“My husband and I had tried for years to have a second child to complete our family.  With a few miscarriages and no other success we were about to give up when we found out I was pregnant.  I was very cautious at first, not getting myself too hopeful.  That first ultrasound when I saw that little heart fluttering away I cried, I was going to be a mommy again.  My fears of not being able to “complete the family” were gone.  Little did we know what that little fluttering heart had in store for us.   My due date was set for October 18th 2007.

My 20 week ultrasound looked normal. 10 little fingers, 10 little toes and 3 legs?  Yes, we were having another little boy!  We were extremely excited (grandma wanted a little girl to play dress up with but oh well).  I had 2 more ultrasounds to check my cervix because I had given birth to my oldest son a month early, and they were trying to prevent that from happening again.  Every time, she would check the baby make measurements and say that everything looked just fine.

October 17th, a day before my due date I went into labor.  I was expecting a very normal delivery but here is where the “fun” started.  The baby was breech so I had to have a C-section.  I hate needles so this did not make me happy.  At 9:15 Delvin James “DJ” was born, 8 pounds 10 ounces 21 inches long.   He looked so perfect that we still had no idea how sick he really was.

My heart sank when Terry, my husband, came into the recovery room and told me that DJ was in the NICU (Neonatal Intensive Care Unit).  Harrison, our oldest, had to spend a week in NICU and we were both really looking forward to having a normal, healthy baby.  That’s when he told me that his O2 levels were low and he had a swishing sound in his heart.  They were calling in a cardiologist to check him out.

4:10 pm … I remember the time so well.  A doctor came into my room to give us the news we had waited all day for.  Dr. Washington told us that the news wasn’t good, DJ had holes in his heart and his pulmonary valve had never opened.  He gave us some long name that I still can’t remember and made drawings of a good heart and DJ’s so that I could see exactly what he was talking about.  I remember thinking “please leave, I don’t want you to see what is about to come.”  I could feel my heart in my chest beating a million miles a minute as I tried to keep myself together.  He kept assuring us that it was fixable with surgery.

I don’t know if he was out of the room or not when the dam broke.  My heart breaking a little bit more with every tear that escaped.  How could this be happening?  Why my baby?  What had I done wrong this time?  In the back of my mind I still blamed myself for Harrison’s early birth.  I know I looked at Terry and told him I was sorry that he was never going to know what it was like to have a normal baby.

I hadn’t seen my baby boy except for the few minutes after his birth.  The nurses helped me out of bed and into a wheelchair so that I could go down to the NICU to see DJ before the transport team came to take him to The Children’s Hospital CICU (Cardiac Intensive Care Unit).  I couldn’t believe how perfect he still looked even knowing what was wrong.  I ran my fingers over his perfect little chest, baffled by the fact that they were going to have to mar this perfection to save him.  I asked my mom to ask one of the nurses if I could hold him.  I don’t think they really wanted me to because he was under an oxygen hood but, I think the look on my mother’s face made them change their minds about saying no.  He felt so small and so warm. It was in that moment that he was named.  Delvin was my grandfather and James was Terry’s, both lost to us within a year of each other, both fighters.  I was afraid of losing my little boy also.   I sat there with him till I physically couldn’t but, I just couldn’t leave him but had to.

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This is right before taking DJ to Children’s.

We were told that the transport team would be there at 8:00 to take him and that Terry had to follow him to fill out paperwork and get him checked in at Children’s.  They had started him on prostaglandins to keep his duct (“ductus arteriosus“) open as that was the only way he was getting oxygen to his body.  The down fall to the medication was apnea, so they intubated him for the trip.  They brought him down to my room before they left.  He looked so small on that stretcher in the incubator.  All the machines, the beeping, the looks on their faces as they took him … it was too much and I started crying.  Terry left with them and I made him promise to come back and tell me if he was alright.  At that moment a phone call wouldn’t do I had to see his face.

The next morning there was nothing I could do to keep my mind off of DJ.  I had told Terry to go to work so he could keep the time off he had for surgery day and for when DJ would come home.  I knew I was going to need help.  One of my OBs came in and sat on my bed, he apologized for not seeing this in any of the ultrasounds.  He explained that once he had heard what was going on and knew what to look for he saw it, barely.  I didn’t blame him, I told him it was fine and that everything was going to be okay.  I don’t know if I truly believed that or not but I think it was in that moment I put on my “brave face” and started making a few calls to friends and relatives.  Mom came over after seeing DJ and told me she had talked to a few of the doctors and they wanted to have a meeting the next morning.

Try as I might they would not let me leave so I asked mom to go in my place with Terry.  It was determined that DJ had 3 holes in his heart, 1 large and 1 small VSD and 1 small ASD, and the pulmonary valve had never opened.  They were calling him a Blue Tet, I found out that was short for Tetralogy of Fallot with Pulmonary Atresia (ToF/PA).  The surgeon, Dr. Francois Lacour-Gayet, was going out of town but would be back Sunday and wanted to do the surgery Monday morning.  I was relieved to hear this because I would be there with him and my family instead of being trapped in my hospital room.  Terry and my mom returned and told me “the plan” for the surgery.  They were just going to put a shunt in so that his heart could get a little bigger so they could do a full repair.  I got a call from one of the surgeons that would be helping, Dr. Goldberg, and he explained more to me what would be happening.  I then tried to talk to Dr. Lacour-Gayet on the phone but his accent made it impossible.  We all got a good laugh because of it; I would laugh later about it because I found out from the surgical nurse that he was as frustrated as I was.  One even said “that didn’t go very well.”

Later that day I would get a phone call from Dr. Goldberg, after another look at DJ’s heart with an echo they wanted to do the full repair.  They were fairly sure his heart was big enough since he was such a big boy, almost twice the size of an average cardiac baby.  I think the blood must have drained from my face because my mom was at my side in a heartbeat; she wanted to know what was going on.  So I asked if he would be willing to explain it to her so I didn’t mess it up, which he did.  So it was decided that they were going to do a full repair on his little heart and if all went well we wouldn’t have to do another surgery for at least a few years.   This was good news, finally.  Even better news, I could leave the hospital if I wanted.  With a lot of convincing from my mother, grandmother and Terry I stayed one more night.  I missed Harrison, I felt bad for leaving him so long, not that he noticed his Aunt Erin and Uncle Sean were keeping him busy.  I missed my house and my bed and real food but, I knew staying was best for my health and I needed to be strong for the next few days to come.

My Surprise that night, Terry brought Harrison out to see me.  They brought a DVD player and some movies with them.  We had dinner, watched Monsters Inc., and had popsicles. We tried to explain to him a little what was going on with his little brother.  He told us that everything was going to be fine; I kissed them good night and sent them on their way.  I only wish I could have been that positive.

Saturday afternoon I was released.  I had both of my OB-GYN’s come in and warned me about driving and walking too much and making myself too tired, both knowing very well that I was going to be stressing and not caring about my pain and comfort.  With one stop to pick up my prescription for pain killers, I made Terry take me to Children’s.  I wanted to see my baby boy that I hadn’t seen since they took him away the day he was born.  It was my first time to the new Children’s Hospital.  It was beautiful. Terry had told me that it really didn’t have that hospital feeling until you got into the rooms.  Man, it was true.  We had Harrison with us and had to get approval to have him come into the CICU ward.  The head nurse was going to fight with us till the geneticists wanted to talk to both my husband and I. I wasn’t about to leave my 6 year old out in the halls by himself.  It was the first time Harrison saw his little brother.  I remember he dragged a chair over to his warmer and just stared at him.  How scary that had to be for him.  Here’s this little person who you’ve been waiting for and he’s hooked up to all of these monitors.

The geneticists (who name I cannot remember) wanted to do a  FISH test.  He thought maybe his heart defects were due to a genetic anomaly, maybe Goldenhar Syndrome or DiGeorge Syndrome.  Neither of which either of us had ever heard of.  He said they didn’t like labeling kids but it was something to look into because of other things that went with some syndromes.  He then stated that he thought it would be Goldenhar’s just because Terry had some of the traits, an unevenness in the face.  I know I stared at Terry until it probably made him nervous trying to see it.  I did a little but nothing like he was describing.  We told him he could run his tests.

Another doctor came to us shortly after the geneticists left.  He introduced himself as Dr. Goldberg, a face to the name.  He had seen us and wanted to meet me and see if I had any questions yet.  He also wanted to know if we could come in the next day to go over “the plan” and sign some papers.  You know those silly surveys that go around that have the question “If you could have any super power what would it be?” Well right then in that moment I wanted the power to read his thoughts.  I wanted to know what he was thinking as he looked at my little family.  Was he thinking “poor people, this is going to be hard” or “Don’t worry, we’ll fix DJ right up for ya” I wanted to know.   We said our good nights to DJ and took Harrison home.

Going home, one would think it would be a joyous occasion.  I felt empty, lost, confused.  I was missing a vital part of my family.  It’s the hardest thing I’ve ever done, leaving my kids at the hospital.  I needed to eat and get some sleep so that I could feel normal again and be able to follow the conversations to come.  I think the only reason I slept that night was because of the pain killers.  I ran so many different scenarios for Mondays surgery in my head I was dizzy.  Sunday morning came and we dropped Harrison with my mom and made our way to the hospital to talk to Dr. Goldberg.  I was anxious to see how DJ had done that night.

We met Dr. Goldberg that morning in the CICU where DJ was.  He sat us down and began to explain “the plan” to us.  They were going to try to patch the two VSDs and the one ASD and try to use a third of a bovine valve to open up the pulmonary valve.  Only a third, because they hope the other parts that were still “human” would compensate and grow with him a little longer then the full bovine valve being inserted.  If it came to it they would just use the full valve.  Yet I think the worst and scariest part for me was the bypass machine.  What if his heart wouldn’t start back up? There were tons of waivers and consent forms to sign.  At one point I found myself thinking this was worse than trying to buy a car.

We went back to moms to spend some time with Harrison.  We weren’t sure what was going to happen in the next twenty-four hours and I wanted to be close to all of my support.  Harrison was going to spend the night there because we had to be at the hospital at 6:30 in the morning if we want to spend any time with DJ.

Again I found myself holding DJ until I couldn’t, but this time it was because they were taking him into surgery.  We were told the first night is the worst and that we probably wanted to stay at the hospital, so I went and got us a room for the night.  After we found our room and put some of our stuff down we went out into the waiting area where, over the next few hours we were joined by family and friends.  Ester, the OR nurse, would come out and update us when anything critical happened.   We knew when the central lines were in, when he went onto bypass, when they were piecing his heart together, and when his heart was beating again because he was off bypass.  I think when I heard that is when I started to feel calmer about everything.  DJ was in surgery for 6 hours but they were able to do the full repair.  We were told that they weren’t able to close his chest because of the pressure it put on the heart and that he was bloated from the bypass machine so they put a gortex patch over the opening and would close him up later.  Both holes in the lower chambers (VSD) had been repaired, the top hole (ASD) they had left open a bit, kind of like a pressure valve, and they had been able to open the valve and only use a third of the bovine patch, all exactly what they had wanted to do.

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Only a few hours post-surgery..the patch still present (chest open)..

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The Thursday after surgery. Chest all closed! Look at this warrior. He’s amazing!!

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All 3 chest tubes gone!

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Mommy getting to finally feed him for the first time!

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No more breathing tube! Just some good O2!

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Look at all of those medicines!

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Grandma holding DJ for the first time.

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Sponge bath and then BUSTING OUTTA THERE! Yay!

Mom was with me when I got to go back and see DJ for the first time after surgery, I wanted her to be able to see him and she had to leave to help with Harrison back at her house.  One of the nurses made sure he was covered up before we made it to his bed.  There were so many tubes and wires and machines, it made him look so small.  They had given him a paralytic so he didn’t pull at his tubes and IV lines.  The nurse asked if I wanted to see everything, I nodded and then held my breath.  I thought I was prepared but, I wasn’t.  She pulled the blanket back and I just sobbed.  Thank God my mom was with me, she got me calmed down and over that initial shock (defiantly one of those ‘I want my mommy’ moments) and we started asking questions.  I found out what all the tubes were, where all the wires were going, and to watch his tiny heart beat through the patch was amazing.  Here was the cause of all our problems beating away under a thin layer of plastic, and I could watch as I had once before on the ultrasound screen.  What a miracle and hardship one little heart could be.

Terry came in after mom left, I wasn’t sure if he wanted to see everything so I covered him back up.  When he came up to the bed he said he did want to see so I tried to explain everything to him but the nurse had to help.   I think we were all waiting for Terry to crack but he never did.  I was surprised.  The following are Terry’s thoughts in his own words.

As I was about to walk back to see DJ after his surgery I took a moment as I washed my hands, a required task for the CICU that we were getting all to use to, I prepared myself for seeing something that no parent should ever have to see.  When I first saw him, I was relieved it, the surgery, was over.  I was also surprised that he did not look as bad as I had imagined.  Don’t get me wrong, it was bad, but just not as bad as I thought it would be.  He laid there sleeping, and looked to be under very little distress.  His breast was split down the middle and spread about four inches, with a piece of thin gortex stitched into his flesh.  You could see his heart beating and lungs filling.  I remember thinking how crazy the first person must have been to look at a heart that small and say, “Hey, I could fix that!”, and how grateful I was for them trying.  It was like the calm after the storm.  Things were going to be ok, or at least that is what I was going to keep saying.  Now we just had to wait for the normal to start and get to know him.  Only five days old, and he has been thought so much.

Later everyone asked me why I never cracked.  I told them I had to keep thinking, they know what the problem is and they have a plain to fix it. It was the only thing that kept me claim.  If they would have said we don’t know what is wrong or we don’t know how to fix it, I would have lost it.  Kind of cold, maybe, but I had more than just me to worry about; I had a whole family to be there for.

That night we stayed in one of the parent rooms.  I got up a few times and went to go check on DJ.  I know they would have called us if anything bad was happening but I still had to go see him.  He was having arrhythmias (irregular heartbeats) all night long but, they had expected that.  Terry went to work the next day and I stayed to watch over my baby.  My aunt came to visit later that day and I went home with her to be with the other half of my family.

Every morning my mom would pick me up, help me get Harrison to school and take me out to the hospital since I had again, told Terry to go back to work.  Every day he seemed a little better.  We had visitors a few days but I mostly told people to wait till he was home.  I didn’t want people to see him like that.  It seemed like there was another tube gone or another drug missing every morning we came in to see him.  Thursday they were finally able to close his chest, Friday the chest tubes in his lungs came out,  Saturday the lead wires that went into his heart came out (in case they needed to shock him back into rhythm, which they never did), Sunday the chest tube in the pericardium came out.  The biggest hurdle left was to get the breathing tube out and get him breathing on his own again.  That came on Monday and I finally got to hold that little bugger again.  A whole week had gone by without him in my arms.  Next steps get him off a lot of medication and get him to eat.

He was getting better color every day, but he really didn’t want to eat.  We tried bottles and nursing.  He didn’t want either so they had to put a feeding tube up his nose, he didn’t like that.  Things were going great.  Then the day before Halloween we were told that we were going to be able to take him home, my own little treat.  We watched all the videos, had him tested in the car seat, I had the cutest little pumpkin outfit all picked out.  I was ecstatic.

Halloween morning we went to school with Harrison to see his parade and party.  I was walking on air.  Then my phone rang, sometime during the night DJ had gone tachycardic (a high heart rate that won’t come down), they couldn’t let him come home till they knew why this had happened or it went away.  I had to excuse myself to the nurse’s office at the school so I could just cry in peace.  I’m sure I scared a few people.  We made our way out to the hospital anyway.  They transferred DJ to the ninth floor CPCU (Cardiac Progressive Care Unit) where we just waited.  I felt extremely frustrated at this point.  They had taken him off the oxygen in the CICU and told me that as long as his O2 levels stayed above 87 they weren’t going to worry about it (because of the small ASD they had left).  The first thing they did when they got him in his room on the ninth floor was put him back on oxygen but no one could answer me if that was the cause of the high heart rate.  I thought I was going to pull my hair out trying to get answers.  I had been spoiled in CICU where we had a nurse around all the time and I could get my questions answered right away.

The doctors and nurses were still concerned that he wouldn’t eat.  He would just play with the bottle for a while and that was it, the rest would go into the feeding tube.  He had a certain goal he had to eat before he could come home.  He also wasn’t gaining weight so they fortified what they gave him.

November 3rd, what a wonderful day.  We finally got the okay to go home.  DJ was being discharged!  We would go home with Lasix, oxygen and the feeding tube so I got the lesson on how to change and place it.  I felt bad sticking that thing up his nose but if it meant we were going home, I would do it.   We packed up and got out of there as fast as we could.  I kept looking over my shoulder waiting for someone to come running after us saying they made a mistake and we had to come back.

When we walked into my mom house to pick up Harrison we were “attacked” by my little sister (14), it was the first time she had seen DJ.  She wanted to hold him so bad and she was so happy to finally meet him.  My brother (also 14) would only touch him with one finger.  It was funny to watch.  We gathered our boys and went home as a whole family for the first time.

We had a small fight with an infection in his incision but other than that there haven’t been any complications.   My Christmas present was a mostly normal baby, we were off all medications, he was sleeping though the night, and there was no more oxygen or feeding tube.  It was the best thing I could have asked for.

Today I sit and watch my now 5 year old boy run and play and I’m thankful for every day. His cardiology appointment is coming up at the end of the week, he will have his usual EKG and Echo done and then for the first time we will sit with the doctor and discuss a cardiac MRI and a Holter Monitor for 24-48 hours. I live to hear his laugh and love every smile I get. So we are still laughing through our journey and learning new things every day!”

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DJ with his big brother!

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Heart check-up time! Look at how good he’s doing!

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The love that these two brothers share..it’s hard to not see it!!

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pulse ox and smiles : )

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The Reeder Family 🙂

Wouldn’t you agree that this dude is a true superhero? And it’s always a show of bravery for any parent to go through such a rough time and be able to share their story. Jenifer, thank you for that! As we know in the CHD world, stories never end, they always get bigger. I love this family for numerous reasons. Both of our warriors are the same age! We also live in the glorious state of Colorado. Aaaaand we are very familiar with Children’s Hospital here in Colorado. But most of all, this family enjoys the time they have together and it shows! It’s impossible to not feel inspired by this family and what they’ve gone through.

Keep on rockin’ DJ!

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.”