AYDEN
Truncus Arteriosus
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Ayden is a very loving and caring 5 year old boy. He is just full of life. He has a big heart and is always willing to help out others. Ayden enjoys playing outdoors, loves the water, helping out with chores, all animals and he loves music. When he hears music, he wants to dance. Ayden just joined Rosie’s House Choir this fall. Ayden also joins the Phoenix Children’s Heart walk yearly.
Ayden was born in December 2010. The greatest Christmas Gift to our family ever as He was our first grandchild! Thanks to all the advances in medicine they were able to let us know exactly in the first trimester of his mom’s pregnancy that Ayden had Truncus Arteriosus. The team of Doctors Ayden has have been absolutely amazing! They monitored his mom’s pregnancy to make sure everything was going well. As his family we have been there every step of the way, as this is truly our miracle baby! To know that a child can bring a family so close and teach us each day how blessed we truly are. He is such a joy and brings so much happiness to us and others. |
SKYY
Anomalous Left Coronary Artery From the Pulmonary Artery (ALCAPA)
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Skyy battled the odds with a smile on her face and with so much grace. She was 6 months old when we took her for a second opinion about her poor weight gain. After a chest X-Ray that same day we wound up at Phoenix Childrens Hospital where it took 4 days for them to figure out exactly what was wrong with her. She had a form of ALCAPA that her cardiologist had never seen before. We were completely unaware she had a CHD, and were in shock at how bad her heart function was. We brought her in with only 7% heart function. After her open heart surgery we spent almost three months in the hospital, through Christmas, New Years, and through it all out lil heart warrior was charming all the doctors & nurses. She was such a light in a dark time. She is my hero, and her story has brought awareness to hundreds of people. She's turning 2yrs today & just had her G-Tube removed!!!
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LEXI
Interrupted Aortic Arch, ASD, VSD
Lexi was born in 2002 with undiagnosed congenital heart disease. When she was 7 days old she was admitted to the PICU with an unknown illness and quickly deteriorating. It was ultimately discovered that she had multiple cardiac defects. She had her first open heart surgery at 9 days old. Recovery was difficult and she had a second open heart surgery at 30 days old. at 2 1/2 months old she was finally discharged from the hospital but still in congestive heart failure, on medication and with a feeding tube. At the age of 2 1/2 years we finally got special FDA for a trial device that was used to close her VSD. Her next open heart surgery was 2 days later. She was finally no longer in congestive heart failure and eventually the feeding tube was removed. She had open heart surgery #5 done just last year at the age of 12.
Lexi has endured countless doctors appointments, medications, tests, labs, etc & has numerous physical scars. She has come to accept the beauty of those scars and lights up the world with shining blue eyes. She desires to be a source of inspiration & hope to other kids with CHD. I am grateful for the opportunity to be her mother. She is my heart hero.
Lexi has endured countless doctors appointments, medications, tests, labs, etc & has numerous physical scars. She has come to accept the beauty of those scars and lights up the world with shining blue eyes. She desires to be a source of inspiration & hope to other kids with CHD. I am grateful for the opportunity to be her mother. She is my heart hero.
SCOTLYN
ASD and currently undergoing testing
When Scotlyn was born everything seemed great and she was healthy. We began the journey as a family of four. We were so excited to have a little girl. Our son, was two and a half at the time and had an easy start into life, as a healthy boy! Our son got sick when Scotlyn was five months old, and she got sick as well. Our pediatrician, who has been amazing, thought she had a heart murmur, but thought it could be because she was sick. He sent us to a cardiologist where they found she has an ASD(atrial septal defect), which was large.
They wanted to wait and to see if the hole would eventually close on its own, and possibly do a procedure when she is 3 or 4. We went to all our follow ups, which showed that the hole was only getting bigger as she grew. She was having more issues so we went back in and they decided that they needed to do something soon. Within 2 weeks she was scheduled for open heart surgery. During surgery they found that she was in early signs of heart failure. After surgery we went home after 4 days, but we were readmitted for 3 more days for pericardial effusion. We are very grateful that our pediatrician found her heart defect before it was too late. She recovered well and for two months afterward she seemed to have no issues and was on the road to normalcy. At around two months after surgery she started to have the same symptoms she was having prior to surgery. We have been to so many doctors visits and blood tests to figure it out. They had her wear a 7 day monitor but we ended up having to switch cardiologists. She is currently wearing a 30 day monitor to try and get to a conclusion. We don't want anything else to be wrong but just want answers. Scotlyn is definitely a little fighter, and is our hero. |
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MARCH - JACOB
Tetralogy of Fallot
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Jacob was diagnosed in utero with TOF while his twin brother was perfectly healthy. He had his first OHS at 11 months old and everything seemed to go smoothly. Soon though an MRI showed a small "flap" inside his aorta (extremely rare) & ONE surgeon in the US was willing to repair it....we traveled to Lucille Packard Children's Hospital at Stanford from Phoenix, AZ and he had his second OHS at 3 years old.
Fast forward 10 years later (thankfully no issues during all that time!), Jacob now needed a new PV. We chose to again travel to Stanford for this because 1) they were willing to try to replace it transcatheter first and 2) we trusted the world-renowned surgeon that performed his rare surgery 10 yrs earlier. Unfortunately, the catheter approach did not work, so Jacob had his third OHS on Nov 6, 2015 at 13 years old. I cannot explain how proud and amazed I am at how brave, stoic, and good-natured he has been through this last surgery & now recovery. As an infant/toddler, he thankfully has no recollection of the pain/trauma he went through, but as a teen, he was very aware of what was to come and will always remember. He never broke down crying (I was a different story), he never complained, he never got grumpy...in fact, the nurses referred to him as their "perfect teenaged patient", and even smiled/laughed starting the day after surgery! In a nutshell, my heart warrior is amazing. ❤️💪🏼🙏🏼 |
JANUARY - MARINA
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AUDREY
Interrupted Aortic Arch, ASD, VSD, DiGeorge Syndrome
Our Heart Hero is our daughter, Audrey. She will be one on the 23rd.
Audrey is our miracle. She has 2 older brothers who had easy starts in life, but she went through something tremendous and inspirational. In May of 2013 I was pregnant, but lost that baby through a miscarriage. We had lost hope of getting pregnant again as I live with ulcerative colitis and this can cause miscarriage or a very difficult pregnancy. In February of 2014 that hope was alive again when we found out we were pregnant with Audrey. Tears of happiness filled with her every growing moment, hearing that heartbeat for the first time and holding her at birth, October 23, 2014.
Little did we know the journey that was ahead of our family. We were preparing for our departure from Banner Del Webb, when the nurse came in and was worried (without me knowing) of her condition. Audrey was breathing heavily and starting to show signs of blueness in her extremities. Many test were run, they even allowed me in the NICU with her to show her comfort. Audrey’s oxygen tests were running smoothly and the on-call pediatrician didn’t know exactly what was going on with her. My husband and I were taken into a room where another specialty nurse said something was wrong with Audrey’s heart and they were going to life-flight her to Phoenix Children’s Hospital. They told us what was wrong, but I had no idea what they were saying, just that something was wrong with my baby girl. There was no information given about a surgery or even the littlest glimmer of hope. The delivering nurse, Tanya, came in and gave us the best hope and prayer anyone could have at that moment in time.
When we arrived at PCH, the amazing staff walked us through everything. We were relieved, but overwhelmed with the next few weeks of her journey. Audrey was diagnosed with CHD; an interrupted aortic arch, ASD and VSD. In the next few days we were told she was also missing her right kidney and now diagnosed with DiGeorge Syndrome. This hit us like a ton of bricks. But Audrey proved to us and the doctors that this would not defeat her. That she is a warrior and would overcome what life was throwing her way. At one point, Audrey became stubborn and held her breath, turning that awful shade of grey that left me worried. Audrey was reacting to the g-tube insertion and held her breath. Other than that, she kept all her blood levels at where they needed to be or better. Audrey showed time and time again that was strong.
Audrey had her open heart surgery on November 3, 2014 by Doctor Nigro at PCH. Audrey continued to show improvement and was released 10 days after surgery. Audrey is now almost one and every day she shares something new with us, a beautiful smile and is always happy. Audrey works routinely with in-home nurses and constantly shows signs of growth and improvement. Audrey is our inspiration. She shows us that life is worth fighting for, that we can overcome anything. If you’d look at her now, you would never know she endured this surgery. She is petite, but acts just like every other one year old, into everything and keeping us on our toes!
Audrey is our miracle. She has 2 older brothers who had easy starts in life, but she went through something tremendous and inspirational. In May of 2013 I was pregnant, but lost that baby through a miscarriage. We had lost hope of getting pregnant again as I live with ulcerative colitis and this can cause miscarriage or a very difficult pregnancy. In February of 2014 that hope was alive again when we found out we were pregnant with Audrey. Tears of happiness filled with her every growing moment, hearing that heartbeat for the first time and holding her at birth, October 23, 2014.
Little did we know the journey that was ahead of our family. We were preparing for our departure from Banner Del Webb, when the nurse came in and was worried (without me knowing) of her condition. Audrey was breathing heavily and starting to show signs of blueness in her extremities. Many test were run, they even allowed me in the NICU with her to show her comfort. Audrey’s oxygen tests were running smoothly and the on-call pediatrician didn’t know exactly what was going on with her. My husband and I were taken into a room where another specialty nurse said something was wrong with Audrey’s heart and they were going to life-flight her to Phoenix Children’s Hospital. They told us what was wrong, but I had no idea what they were saying, just that something was wrong with my baby girl. There was no information given about a surgery or even the littlest glimmer of hope. The delivering nurse, Tanya, came in and gave us the best hope and prayer anyone could have at that moment in time.
When we arrived at PCH, the amazing staff walked us through everything. We were relieved, but overwhelmed with the next few weeks of her journey. Audrey was diagnosed with CHD; an interrupted aortic arch, ASD and VSD. In the next few days we were told she was also missing her right kidney and now diagnosed with DiGeorge Syndrome. This hit us like a ton of bricks. But Audrey proved to us and the doctors that this would not defeat her. That she is a warrior and would overcome what life was throwing her way. At one point, Audrey became stubborn and held her breath, turning that awful shade of grey that left me worried. Audrey was reacting to the g-tube insertion and held her breath. Other than that, she kept all her blood levels at where they needed to be or better. Audrey showed time and time again that was strong.
Audrey had her open heart surgery on November 3, 2014 by Doctor Nigro at PCH. Audrey continued to show improvement and was released 10 days after surgery. Audrey is now almost one and every day she shares something new with us, a beautiful smile and is always happy. Audrey works routinely with in-home nurses and constantly shows signs of growth and improvement. Audrey is our inspiration. She shows us that life is worth fighting for, that we can overcome anything. If you’d look at her now, you would never know she endured this surgery. She is petite, but acts just like every other one year old, into everything and keeping us on our toes!
CAPRI
Complete AV Canal Defect,pulmonary stenosis
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Capri came to us on 11/20/14 at 3lb 9oz. She is the “big” sister of the bundle as she came with her twin brother Cruz Tomas. She was born with a bowel obstruction, Complete AV Canal Defect,pulmonary stenosis, and 12 beautiful toes. We then found how she has a rare genetic defect to add to her resume, 8p23.1 deletion syndrome.She was also born with a perpetual smile, a strong will, and a super ability to not take naps.
Ten months into life and Capri has endured 5 surgeries and three of them heart related. She seems to want to test the abilities of every doctor and nurse that come to treat her as she doesn’t ever make things easy. Now hopefully with most of the major stuff behind us,she is becoming an energetic little girl. Little Capri has taught us more in 10 months then we’ll ever be able to teach her. She has a two year old sister that calls her “Pretty” because she could never say Capri and that is what her nickname will always be. |
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IVY
Transposition of the Great Arteries (TGA), VSD, ASD, Pulmonary Stenosis, and Hypoplastic Left Pulmonary Artery
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Ivy's beautiful life began in Hangzhou China.
Her estimated birthday is May 6, 2010. When she was about four months old, she was left under a tree in front of the hospital by her birth mom. We can only imagine the sorrow she felt that day as she left her tiny treasure in hopes of her being able to be provided the medical care she likely could not afford. When Ivy was found, she was as blue as a berry. She was not eating or crying; she was lethargic, tiny and scared. She was sent to the local orphanage where she was diagnosed with Transposition of the Great Arteries, a large VSD, a large ASD, Pulmonary Stenosis, and Hypoplastic Left Pulmonary Artery. The doctors in China decided that her case was far too complex for them and they would not be able to provide her surgery. Ivy survived for almost two years in China with this terribly sick heart. In August 2011, we saw her picture and were asked to advocate for her, but the moment we saw her we knew she was our daughter, we knew she needed a family, and we knew we needed her for whatever time God would allow her to be on this earth! In February 2013, we held our daughter for the first time. Her lungs sounded so wet and her whole body shook with each breath she took. Despite all she had been through, this tiny little girl still found reason to smile! She was the most beautiful child I have ever seen. Upon arriving home Ivy was put on oxygen and four weeks later she received Nikaido procedure at Phoenix Children's Hospital. Things did not go well and after 17 hours in surgery, way too long on bypass, Ivy came up to her room on ECMO. After four days on ECMO, only by a miracle, she did come off and with lots and lots of bumps in the road and many many difficult days, after a few months she finally came home. Seven months later, still not thriving, clearly something wrong, we decided to take Ivy to Boston Children's. It was in Boston that they discovered her coronary artery had been sewn shut in her first surgery back home. She had lived almost two years in an orphanage completely unrepaired and now another seven months in the United States with a completely occluded coronary artery, unknown to anyone including the surgeon in Arizona who had made the mistake. She endured five more open heart surgeries in Boston. There were many many close calls, many days that looked as if there may be no more hope, but our girl is a survivor. A fighter. A warrior! She surprises every doctor she meets. She charms every person she meets. And today I am happy to say that she is here with us!! She's five years old and she is our miracle!! |
HARPER
Tetralogy of Fallot with Absent Pulmonary Valve
Tetralogy of Fallot with Absent Pulmonary Valve
Harper joined us on March 9th, 2015. She wasn't diagnosed prenatally and was blue at birth with sats in the 30's and 40's. She was airlifted to PCH within 2 hours of birth and diagnosed with Tetralogy of Fallot with absent pulmonary valve. After coding in the NICU and being resuscitated, she had 2 stints placed to relieve her pulmonary stenosis. She did well and was allowed home 3 weeks after birth to grow. She had her first OHS at 2 1/2 months, but due to pulmonary complications and infections she was hospitalized for 7 weeks and sent home on IV antibiotics. After 4 weeks home, she had an episode and was taken by ambulance to Cardon's for respiratory distress where she coded again while being intubated. After being stabilized, she was transferred back to PCH where an MRI revealed a minor stroke. The neurologist assured us that it was very minor and won't cause any lasting effects. After 2 more weeks in the hospital, she's home again, despite not knowing what caused the crisis.
Even with all her trials, Harper is a very easy-going baby. She is so happy to be back home- she's smiling and laughing like she doesn't have a care in the world. Our goals now are feeding by mouth and general development. It's hard to learn to be a baby when you've spent so much of your life in the hospital!
We know we still have a long road ahead, but in these short six months we've learned that Harper is a fighter and these are just speed bumps.
Even with all her trials, Harper is a very easy-going baby. She is so happy to be back home- she's smiling and laughing like she doesn't have a care in the world. Our goals now are feeding by mouth and general development. It's hard to learn to be a baby when you've spent so much of your life in the hospital!
We know we still have a long road ahead, but in these short six months we've learned that Harper is a fighter and these are just speed bumps.
NOAH
Pulmonary Atresia with intact ventricular septum (PA w/IVS), Hypoplastic Right Ventricle, Tricuspid Valve Stenosis and Bicuspid Aortic Valve
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Our little firecracker and first child came into the world 6 days past his due date after a normal pregnancy and delivery, seemingly healthy at 9 pounds. After only 1 night at home, Noah appeared to be gasping for air and was unable to wake to breastfeed, so we took him to a local ER, where his O2 sats were measured at 20-30%! He was then flown by helicopter to St. Joseph’s Hospital in Phoenix and diagnosed there with pulmonary atresia with intact ventricular septum (PA w/IVS), hypoplastic right ventricle, tricuspid valve stenosis, and bicuspid aortic valve. We were told that he would need 3 surgeries: BT shunt, Glenn shunt, and Fontan. I will never forget the words Dr. Nowlen said when he gave us the diagnosis: “He’s never going to run a marathon, but he will play on the playground someday.” I held on tightly to those words, as it was the only hope when I thought my baby was dying.
Noah’s first heart cath was at 3 days old, a balloon atrial septostomy (ASD creation) and an attempted but unsuccessful ballooning to open his pulmonary valve. His first open heart surgery was at 8 days old: BT Shunt, pulmonary valvotomy, and right ventricle outflow tract (RVOT) reconstruction. He was discharged after 17 days in the hospital. In preparation for the Glenn surgery, his second cath was at 8 months old to coil collateral veins. Noah had a successful bidirectional Glenn at 10 months old, and was discharged only 4 days post-op! |
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Remarkably, Noah grew, thrived, and developed mostly on schedule. He skipped crawling altogether and decided to walk at 9 months old. His only developmental delay was speech, which was caught up by the time he was 2.5 years old with the help of speech therapy, and he was reading by age 4. We were now on the wait-and-see plan for when and what his next surgery would be. We were told his right ventricle appeared to be less hypoplastic and had gained function. It was not certain he would need the Fontan; maybe he would remain what is called a 1.5 vent with the Glenn circulation. Noah’s quality of life in the 10 years after the Glenn was relatively normal and stable.
Knowing that the ASD (which had been created at 3 days old) needed to be closed at some point to improve exercise tolerance, we contacted Boston Children’s Hospital last year to see what could also be done to improve his valves. In Boston, Noah had a full cardiac work up, including stress test, cardiac MRI, and cath. They attempted to close the ASD in the cath lab, but it was too large and the closure device would have eroded the sides of his atrium. The only way to close it now was open heart surgery. We learned that Noah’s right ventricle was nearly normal in its function, and he really didn’t even need the Glenn shunt anymore. This was a total paradigm shift in thinking, to go from maybe having a Fontan (single ventricle), to 1.5 ventricle (Glenn circulation), to a biventricular repair! Recently, Noah had his third open heart surgery in Boston: ASD closure, adult-size pulmonary valve placement, Glenn takedown, tricuspid valve repair, right ventricle muscle bundle resection, and right pulmonary artery patch. Noah was discharged 6 days post-op and his recovery continues to go well. His O2 sats are now normal (97-99%), and his cardiac circulation is like a normal heart for the first time in his life! |
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Noah excels at school in the academically gifted program. He plays guitar, violin, golf, archery, and participates in his school’s orchestra, Lego robotics, and Battle of the Books teams. His favorite subjects are math, science, and history. He is looking forward to beginning 6th grade and attending his fifth year of heart camp this year. It is amazing to see the advances and changes that have taken place in the CHD world in the past 11 years, which give hope to Noah’s future and to others. All of the CHD heart heroes and parents who have gone before Noah and continue to walk with us on this journey have inspired us to be the best advocates we can be for our son.
REMY LU
Tetralogy of Fallot
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Meet Remy Lu! She was diagnosed at 5 days old with tetralogy of fallot with pulmonary atresia. She had emergency open heart surgery the next morning to place a bt shunt. At 5 months old she had her second open heart surgery, a repair surgery. She will need more surgeries in the future, but we are focusing on today and all of the amazing things she is achieving. She is blowing all the doctors away and proving over and over how strong she is.
She just turned one and is advanced in all milestones, and a happy little girl. Such a miracle little heart warrior. |
VICTORY
Transposition of the Great Arteries (TGA)
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Victory was diagnosed with TGA in utero when I was 4 months pregnant. It was the scariest news we had ever gotten. Since then I had started seeing a pediatric cardiologist and we had a plan.
The plan was to perform an aterial switch a week after he was born. But things became more complicated as he was born 2 months early which made the surgery impossible to happen immediately after his birth. The new plan was to wait until he was technically "full term" and atleast 5lbs 5ozs. The road to his surgery was anxious and scarey. He kept losing weight and gaining weight. He was on a ventilator for a long time and some days he was so sick that it frightened us. On January 26th at 1.5 months old, he had his surgery and quickly recovered. He came home about 10 days after and had become stronger and bigger with each day. He is truly our hero. His strength has shown us that no matter the obstacle faith is all you need. |
GABRIEL
Single Ventricle & Dextrocardia
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Gabriel is 6 months old. He was born with CHD called Single Ventricle. He is also Dextrocardia his heart is on the right side, and all his organs are switched as well.
When Gabriel was born the next day he was transferred to Phoenix Children Hospital. There they had him on monitors and they did not feed him for the first few weeks of life they only gave him fluids through IV's. Gabriel ended up not needing surgery right away he was stable enough to wait. His first surgery was at 4 weeks old. They planned to add a Band and after the surgery he was doing ok. When afternoon came his oxygen saturations started dropping low to the 30's the decided maybe the band was to tight so they did Emergency surgery and loosened the band. Later that night came and he still was in critical condition his oxygen kept dropping to the 30's, 20's so they decided to do Emergency surgery and added a Shunt. Finally he was doing good. He healed and we were able to go home after being in there hospital for two months. His next surgery was set for him to be 3-4 months and weighing 11 pounds but a week before his catheter he stoped breathing at home. We brought him into Emergency his oxygen saturations were dropping to 15 percent and lower they acted fast and started putting IV's in him they put him to sleep and did the catheter and ultrasounds, Echos to find out whats happening. In the echo they found a blood clot in his shunt. They had to do Emergency surgery fast. They did the Glenn procedure. Now we wait for his last surgery which is when he is 3-4yrs old. Most people were surprised how he fought and pulled through that day. I had nurses tell me they are fighting for his life I even had a doctor tell me he is passing away. Gabriel is full of smiles, and happiness. You will never tell all his been through to survive by looking at him. My son is my hero |
OWEN
Hypoplastic Left Heart Syndrome/Heart Transplant Recipient
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Brave, strong, fierce and courageous are just a few words that describe Owen.
Owen was born with Hypoplastic Left Heart Syndrome (HLHS) and in July of 2013, received the gift of a second chance through a heart transplant. His transplant journey has been smooth sailing until recently. Owen was admitted a couple of weeks ago to PCH with negative biopsy rejection/heart failure. He spent nearly two weeks on ECMO trying to give his heart a rest. In the last few days he's been able to come off ECMO and is making small steps towards a full recovery. He's not out of the woods and his team still isn't sure what has caused this quick turn, but despite that he continues to be fierce and fight on. His mom, Andrea, is huge inspiration and perfectly details his journey through her blog http://simmonsfamilyupdate.blogspot.com/. |
MARCH - ZEINAB "ZiZi"
Hypoplastic Left Heart Syndrome, Heterotaxy Syndrome
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On February 4th 2014 my entire world changed. My beautiful daughter Zeinab (Zizi for short) graced us with her presence at 1:40am. The countdown to her birth was possibly the most exciting and scary moment in my life.
At just 18 weeks gestation we found out that there was something wrong with her heart. Appointment after appointment and endless ultrasounds confirmed that she has Hypoplastic Left Heart Syndrome. The doctors gave us 3 options. Termination, compassionate care (going home and not intervening) or the 3 stage surgeries- palliative care. I knew I had to give her a fighting chance. They said she might not even make it through the pregnancy but I just knew with all my heart that my daughter was a fighter. I knew God would bring us through this. At 5 days old she still kept surprising us, she had an additional diagnosis- Heterotaxy Syndrome. The very next day she had her first open heart surgery. At 4 months old she started needing oxygen and less than a month later we had to have her second open heart surgery sooner than expected. All of her open heart surgeries were performed by the wonderful Dr. John Nigro at PCH. |
JESTEBAN
Interrupted Aortic Arch,VSD
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Esteban was born on August 5th,2014 at 6:55pm he was 7pounds, 6oz he is my 2nd child. His story begins the day he was born but without us even knowing. Throughout my whole pregnancy I was told he was as healthy as can be, even after I had him doctors said he was just fine. I was super excited to have my beautiful son in my arms, it was love at first sight all over again. We got to come home 2days later. Our first week at home was in my eyes wonderful but in all reality my son was slipping away right in front of me and me not even knowing.
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On August 12th,2014 our nightmare began it was his first week check up. I was excited bringing him, me thinking everything was just fine. While that feeling didn't last too long, as soon as they started checking his vitals it showed his oxygen was super low and they couldn't find a pulse on his lower body. I felt as if someone had pulled a rug right from underneath me. I was so dazed and confused. The doctor was pulled out of his other appointment, he was with Esteban not even 2 minutes,he then turns to me and says "Mom please remember to breath" as I stood there in tears the doctor further tells me he thinks something is seriously wrong with my week old son's heart. I completely lost it.
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HEART HEROES OF 2014
That afternoon we got sent from one hospital to another by evening Esteban was sedated with tubes,IVs, wires, and machines everywhere. I felt so helpless I was in disbelief, my poor son was laying there lifeless and I couldn't even help him let alone hold him. After all the testing about 8 doctors walked in and stood by Esteban's bed where they then told me my son was born with a heart defect called Interrupted Aortic Arch,VSD. I didn't even know What that was. We then got moved to Phoenix Children's Hospital where they told me he needed to have open heart surgery ASAP, but with him being as sick as he was we had to wait till he got strong enough to go through the surgery. Day after day all I could do was pray. On August 19th,2014 Esteban was only 2 weeks old and was well enough to have surgery. That day was the most stressful day ever, the longest 6 hours of my life. My husband and 2 year old daughter were there along with other family members. Finally the surgeon comes to find me he then tells me everything went really great my baby boy pulled through it all there was No bleeding No swelling No problem's at All. I felt as if a huge weight had been lifted off my chest. I was so proud of him. Esteban had a very fast recovery which surprised both me and the doctors.
On August 26th,2014 we got to come home! He did have to be on medications and was also on the feeding tube but that was nothing compared to What he went through. After about two months being home he No longer needed any of it No medicine No feeding tube No nothing. As of today Esteban is as healthy as can be. He will be 5 months on January 5th,2015 he now weights 16 pounds. Esteban is the sweetest baby ever, he truly is my heart hero.
To all of you amazing and special angels I would like to thank you from the bottom of my heart Pediatrician Dr.David Gross without you we could have lost my son. Cardiovascular Surgeon Dr.John Nigro. Esteban's Cardiologist Dr.Linblade, And to all the other doctors and nurses. Also Special Thanks to Mended Little Hearts of Phoenix for letting me share my son's story GOD BLESS
On August 26th,2014 we got to come home! He did have to be on medications and was also on the feeding tube but that was nothing compared to What he went through. After about two months being home he No longer needed any of it No medicine No feeding tube No nothing. As of today Esteban is as healthy as can be. He will be 5 months on January 5th,2015 he now weights 16 pounds. Esteban is the sweetest baby ever, he truly is my heart hero.
To all of you amazing and special angels I would like to thank you from the bottom of my heart Pediatrician Dr.David Gross without you we could have lost my son. Cardiovascular Surgeon Dr.John Nigro. Esteban's Cardiologist Dr.Linblade, And to all the other doctors and nurses. Also Special Thanks to Mended Little Hearts of Phoenix for letting me share my son's story GOD BLESS
DECEMBER - GABRIEL KAUPKE
TOF, complete pulmonary atresia, MAPCAS, VSD, aortic stenosis, and "spongeaform" heart tissue, ( HEART ANGEL)
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Gabriel was born June 4, 2011. He had my dark nearly black eyes, lashes too beautiful for any boy, the longest tiniest fingers, and a natural mowhawk. He was perfect. But at 12 hours old, he was diagnosed with TOF, complete pulmonary atresia, MAPCAS, VSD, aortic stenosis, and "spongeaform" heart tissue. Thus started our crash course into pediatric cardiology and life in the hospital.
Gabriel spent a wonderful month at home with us from 10 days to 5 weeks old before he was readmitted in heart failure to prep for a surgery with only a 10-20% survival chance. Gabe wasn't one for odds though, and he blew through surgery with little problem, even skipping the "guaranteed 100% chance he'll come out of the OR on ECMO." We spent 5 total months inpatient at Vanderbilt Nashville, much of it dealing with "mundane" and frustrating issues like collapsed lungs, fevers, and feeding problems. Some days were awful, but some days he was a happy, normal baby who happened to be stuck in a hospital. We were there 151 days. He had 6 surgeries, including a pacemaker and a Nissen/Mickey. We moved rooms 21 times. I drove over 70 miles a day to and from the hospital trying to keep some normalcy for our 4 yr old, and maintaining a full-time job. I backlogged 1500oz of pumped breast milk, as he spent so much time off feeds. The cafeteria had my breakfast order memorized and recognized my voice. I was on a first name basis with stress, reached my wits' end around 4 months in, and I cried in front of a social worker more than once. When we were admitted there were 4th of July decorations on the walls. We watched summer fade to fall and pass in to winter. When we finally left there was a Christmas tree in the lobby. |
I will never be able to describe to someone who has not been there, the feeling of elated terror walking out of the hospital carrying your baby after so many months inpatient. I'll also never be able to describe the numbness and horror of the ER attending calling "7 o'clock" only 3 days later, after sudden heart failure, or how it feels to hand your son's body to the crying nurse and leave a hospital permanently empty armed. I am blessed with incredible and amazing memories of my son, and simultaneously cursed with memories no parent should have.
People have asked me if I never want to see the inside of a hospital again, but the truth is, I miss it. Almost all of my memories of my son are from in the hospital, and regardless of the circumstances surrounding them, the memories themselves are priceless. I visit my son's grave, but I don't feel him there; I just feel empty. But I can step foot into any children's hospital and immediately feel at home, as if that's where Gabriel's spirit resides.
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I read recently that CHDs are contagious - because parents are left with the broken hearts, and I agree, but I remember a plea I made over my son's hospital bed on his worst days. If I could take his place I would. Let it be me and not him. I remind myself that his heart no longer pains him, and instead I took his broken heart and his burden for him.
There is no word, like widow or orphan, to describe a parent who has lost a child. The closest word I've been able to come up with is "incomplete." My life will forever be incomplete without Gabriel, but my broken heart is filled with love, and memories, albeit fading, of a beautiful little boy who quickly and quietly impacted and changed my life more in 6 months than anyone else could in 100 years. I would give anything to not carry this pain - anything except for the sweet memories of my Gabriel. |
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NOVEMBER - RYLEE SHEEHAN
Heterotaxy, malrotation of intestines, enlarged liver, Aspleenia, HLHS, Pulmonary Atresia, IVC to RA, SVC to LA, Total Unobstructed Veins, Transposition of the Great Arteries, DORV2, Leaky AV Valve, Heart Transplant Recipient
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To say Rylee has kept us on our toes would be an understatement. She laughed at us and threw the textbook out the window since before she was born. I won't ever forget that first fetal echo, at 36 weeks. The heart break of hearing "there's something wrong with your baby", closely followed by "prepare yourself for her to expire." Being told that she wouldn't even have a chance, just throw her out like a old gallon of milk, was absolutely terrifying, devastating to say the least. We knew very little about her heart conditions, very little about her anatomy, and even smaller hope that she would ever take her first breathe.
Rylee has overcome the world since day one. February 6, 2014, Rylee was born, kicking and screaming. She was quickly diagnosed with Heterotaxy, including malrotation of her intestines, right sided stomach, enlarged transverse liver, aspleenia, and Complex chd. Heart wise she was born with HLHS, pulmonary atresia, ivc to ra, svc to lv, total unobstructed veins, all 4 pulmonary veins forming from the lv, transposition of the greater arteries, dorv, 2 ventricle but treated as single, and a severely leaking av valve. Rylee was brought over to PCH at 2 days old, She had a BT Shunt at 6 days old. At 9 days old Rylee had her first cardiac arrest, 89 minutes of compresions and placed on ecmo. Rylee stayed on ecmo for 5 days. She then was discharged 2 months later. Only to the Ronald McDonald House on campus. Only to return daily for appointments. For the next 2 months we were in and out of the CVICU. In May we returned to stay, Rylee had her Glenn performed June 18th, hoping to relieve some of the av regurge. We did our recovery and we're finally cleared to take Rylee home for the first time. We stayed at our home, in Payson. for only 2 weeks before being air lifted back down to PCH on July 26th. |
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It was this time we had learned Rylee was in severe heart failure. We tried everything to keep away from another surgery, every medication imaginable. We got very close to leaving and going home in September. But Rylee had other plans, as she always does. Rylee went into cardiac arrest for the second time, September 6th. She was immediately intubated, but of course Rylee always has other plans, she self extubated herself less than 7 hours later, she was then heavily sedated and re-intubated. September 8th, Rylee was listed as a 1A on the pediatric transplant list, the highest possible listing. So then the wait begins.
Over the course of the next few weeks we waited, waited, waited, and waited some more. each day holding onto hope that soon we would hear good news. It started slowly, Rylee started to de compensate, We would notice little things like decreased sats, increased agitation, more prns, extremely lethargic, heart rate, renals, cerebrals were all over the place. We lived in a complete daze, hoping and praying she wouldn't get sicker and that she'd get her hero heart soon. Those days kept passing, everyday went on with another new symptom. |
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In all Rylee has had 2 cardiac catheterizations, 8 cardiac surgeries, 5 cardiac arrests, 3 rounds of ecmo, 1 heart transplant. And she's still smiling and lighting up the world around her. Rylee has made us whole. She has the most amazing and intense personality, her laugh makes your heart smile. For the first time in her life she has the ability to thrive. At 9 months old Rylee has made medical history. She was the first Heterotaxy heart transplant to be performed at Phoenix Children's Hospital, and the youngest ever to have had a Heterotaxy transplant. Rylee is a miracle, and we're so lucky to have her as ours.
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October 12th, Sunday, Rylee had a rough morning, her blood pressure was low, and she was more agitated than normal. This evening Rylee's heart stopped, not once, but twice. Our princess was again placed on ecmo. All in hopes to bye us just a little more time. The next several days were filled with ultrasounds to monitor neurological function, she couldn't handle feeds anymore, her body started shutting down. She needed a miracle. By Thursday we were facing reality. Rylee's heart couldn't do this anymore, and her other organs were starting to shut down too. We knew the reality, Rylee wasn't going to survive the weekend without a new heart. We spent the next 2 days holding her hands, reading stories to her, singing songs, and crying, so much crying. Whether we liked it or not, there was nothing more for us to do.
October 18th, Saturday, After 4 hours of sleep, I was awoken by our surgeon. They had found a heart!! We where in such disbelief, we've had so many close calls before.was this really it? Would she really survive the intense surgery?
October 19th, Rylee was taken to the OR at midnight, She was there until 11am. Still being the girl she is she didn't go without complications. Rylee's new heart stopped as they were bringing her off the OR table and onto the bed to bring her back upstairs. She was immediately placed back on ecmo for the next 5 days, she was hooked up to every imaginable machine. Over the course of this last 2 weeks Rylee has continued to struggle and fight for her life. She has some significant damage to her lungs from being so sick, requiring extreme maintenance, and aggressive procedures. She has a very long road of recovery ahead of her, but she's showing progress! Soon we hope to extubate, followed by weaning her medications, and intense physical, occupational, and speech therapies just to build back the strength she has lost.
October 18th, Saturday, After 4 hours of sleep, I was awoken by our surgeon. They had found a heart!! We where in such disbelief, we've had so many close calls before.was this really it? Would she really survive the intense surgery?
October 19th, Rylee was taken to the OR at midnight, She was there until 11am. Still being the girl she is she didn't go without complications. Rylee's new heart stopped as they were bringing her off the OR table and onto the bed to bring her back upstairs. She was immediately placed back on ecmo for the next 5 days, she was hooked up to every imaginable machine. Over the course of this last 2 weeks Rylee has continued to struggle and fight for her life. She has some significant damage to her lungs from being so sick, requiring extreme maintenance, and aggressive procedures. She has a very long road of recovery ahead of her, but she's showing progress! Soon we hope to extubate, followed by weaning her medications, and intense physical, occupational, and speech therapies just to build back the strength she has lost.
A few weeks ago at 12 months old she had her LADDS procedure which was to correct her intestinal malrotation. She was doing wonderful and we got discharged 2 days later. Only to come back to Phoenix Children's Hospital with extremely low sats. She is on oxygen again and will have an extremely early 3rd open heart surgery (usually not done until 3-4 years old) very soon.
Zizi is going to be a big sister in just 2 more weeks. She surprises us daily, she is our hero... Our light... Our world. She brings happiness and joy to everyone who meets her. Please keep our perfect princess in your prayers. We love you my ladybug.
Our journey has been both emotionally and physically overwhelming. If I could give her my heart and make it all better I would, but we just take it day by day and are extremely thankful and blessed to have such a miracle to call ours.
Zizi is going to be a big sister in just 2 more weeks. She surprises us daily, she is our hero... Our light... Our world. She brings happiness and joy to everyone who meets her. Please keep our perfect princess in your prayers. We love you my ladybug.
Our journey has been both emotionally and physically overwhelming. If I could give her my heart and make it all better I would, but we just take it day by day and are extremely thankful and blessed to have such a miracle to call ours.
OCTOBER - LINCOLN MUNSON
Complete Atrioventricular Septal Defect
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Lincoln was born on August 7th 2012 and he was the first born boy in Jake's family in nearly 22 year's, so you can imagine our excitement. He was born healthy, or so we thought, at just 15 days old the doctor heard a heart murmur. We were then referred to a cardiologist and was able to get in the very next day. At just 16 days old and spending hours at the cardiologist Lincoln was diagnosed with Complete Atrioventricular Septal Defect! He would need to have open heart surgery. His first winter was tough as Lincoln has bronchitis seven times, yes seven times! His second winter Lincoln has bronchitis about six times and was hospitalized the week of Christmas 2013 for pneumonia. After that hospitalization we knew it was then time to talk about surgery.
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Lincoln had surgery on June 16th 2014. Right after surgery our surgeon came out and said "everything went great. We couldn't fully repair his Mitral Valve and he does have a mild leak." We thought that after this surgery he wouldn't need anymore surgeries for a long while. Lincoln's heart was in junctional rythym and he had to be on medicine for about eight weeks to correct it. At Lincoln's four week post-op ultrasound we found that his Mitral valve had gone from a mild leak to a mild to moderate leak. So in just four short weeks it has gotten a tad worse. We go back to for his next ultrasound at the end of October. We now have to keep a close eye on his valve to know when his next surgery will be. It could be year's or months, we just don't know.
This is the short and sweet version of Lincoln's heart journey! He is our #SuperLincoln and we wouldn't change it for the world!
This is the short and sweet version of Lincoln's heart journey! He is our #SuperLincoln and we wouldn't change it for the world!
SEPTEMBER - BAILEY LYNNE FLETCHER
ASD, VSD, Pulmonary Stenosis, Dandy Walker and Chromosomal Deletion
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My husband and I had less than a 3% chance of having a baby. When we found out we were expecting, we were ecstatic, but not nearly as excited as her big brother, Riley! At 20 weeks pregnant we found out that our miracle daughter, Bailey, had an ASD and VSD, as well as Pulmonary stenosis. At that time, we also were informed that she had Dandy Walker and a chromosomal deletion. On Valentine's Day 2014, Bailey Lynne was born at 5lbs 12oz and our lives were forever changed. Instantly, we were so very much in love with her. She spent 5 days in NICU. At 6 weeks of age she was admitted into Phoenix Children's Hospital for failure to thrive, jaundice and serious tummy issues. Little did we know, the holes were much bigger than we thought and what they would end up doing to her organs and lungs. Bailey ended up having pneumatosis and NEC. She was also bleeding internally. Losing more than 40% of her blood through her rectum, requiring 2 blood transfusions. After 42 days on the GI floor we got to go home for 7 days before returning to PCH for OHS. The surgery went great. However a pace lead had purforated her intestines causing peritonitis. Less than 48 hours after OHS, she needed another surgery to repair the holes caused by the pace lead. After extubating her, she stopped breathing for 45 minutes! After a total of two months in the hospital, we got to take our baby Ng tube/machine and all, HOME! After some time, she began to put on the lbs! With her weekly PT and OT visits, she has come so far, developmentally! We could not be more proud!
As I write this, we are back in the hospital with more belly issues. She gets a G-tube placed in a couple days. In a few weeks she will have a metopic craniosynostosis surgery. This girl, is by far, the strongest and bravest person we will ever know. At 6 months, she is a tiny 11lbs and 24inches. She may be little, but she is mighty and fierce! God has definitely got a plan for our baby girl! Miracles happen.... Our daughter is living proof! |
AUGUST - LUCAS ULRICH
PDA VSD and Mitral Valve Stenosis - 3 Open Heart Surgeries and Pacemaker
A smile that can light up the world and a boy that loves with all his heart. My Lucas is my hero and my son. Though he was born with a congenital heart defect and has many obstacles ahead of him Lucas finds a way to make everyday joyful and beautiful. He may have days when he is too tired or just can’t keep up with the rest of the kids, but he is always quick with a laugh, a joke, and a twinkle in his eyes that says “hope”.
Lucas would like to be a policeman when he grows up to protect and help others. However the real goal is to eat donuts and drink coffee in his police car while driving to grandma’s house. What’s a policeman without his trusty sidekick by his side? Lucas has officially recruited his three legged dog “Steppy” to be by his side to fight crime and chow down on donuts as their treat. Lucas will make a fine policeman someday.
When Luke’s not in school he enjoys playing but what else; his X Box full of games with his Daddy. It is a time that he can unleash the BEAST and spends silly time with stepdad too. Lucas has a big imagination and often expresses his thoughts and dreams through his drawings that are amazing. On cooler days Luke rounds the family up for a game of Frisbee or just some good old fashion board games.
How Lucas couldn’t wait to have a sibling of his own and in 2012 his wish came true. Lucas became a big brother to Eric JR. Lucas is there at every milestone; bottle feedings to now helping little brother go down the slide. They play and at times may not play so well, but all the same Lucas is the first to gloat about his little brother.
His love for animals is immeasurable and vice-versa. Lucas has never met a stranger. Even the coldest of eyes, sternest of faces or harshest of personalities can’t hold up to his melting and contagious smile when he looks up at them and strikes up a conversation as if he has known them forever.
Some of Luke’s greatest accomplishments so far have been to inspire those around him young or old. He recently raised money for, The Jump Rope for Heart, and surpassed his goal. Back in 2012 Lucas teamed up with The American Foundation for Cardiomyopathy (www.americanffc.org) and in honor of Lucas; they installed the first AED in the Buckeye School District. Lucas has had 3 open heart surgeries, a pacemaker, and will someday require further surgery to correct the mitral valve. Lucas may face many more challenges at his young age but he has inspired those around him by always having enough love and compassion when we are scared, sick or feeling hopeless. Lucas is my courageous hero and I am truly the one blessed to be his mother.
Psalm 139-13: “For you created my inmost being; You knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made, your works are wonderful I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depth of the earth, your eyes saw my unformed body.”
Lucas would like to be a policeman when he grows up to protect and help others. However the real goal is to eat donuts and drink coffee in his police car while driving to grandma’s house. What’s a policeman without his trusty sidekick by his side? Lucas has officially recruited his three legged dog “Steppy” to be by his side to fight crime and chow down on donuts as their treat. Lucas will make a fine policeman someday.
When Luke’s not in school he enjoys playing but what else; his X Box full of games with his Daddy. It is a time that he can unleash the BEAST and spends silly time with stepdad too. Lucas has a big imagination and often expresses his thoughts and dreams through his drawings that are amazing. On cooler days Luke rounds the family up for a game of Frisbee or just some good old fashion board games.
How Lucas couldn’t wait to have a sibling of his own and in 2012 his wish came true. Lucas became a big brother to Eric JR. Lucas is there at every milestone; bottle feedings to now helping little brother go down the slide. They play and at times may not play so well, but all the same Lucas is the first to gloat about his little brother.
His love for animals is immeasurable and vice-versa. Lucas has never met a stranger. Even the coldest of eyes, sternest of faces or harshest of personalities can’t hold up to his melting and contagious smile when he looks up at them and strikes up a conversation as if he has known them forever.
Some of Luke’s greatest accomplishments so far have been to inspire those around him young or old. He recently raised money for, The Jump Rope for Heart, and surpassed his goal. Back in 2012 Lucas teamed up with The American Foundation for Cardiomyopathy (www.americanffc.org) and in honor of Lucas; they installed the first AED in the Buckeye School District. Lucas has had 3 open heart surgeries, a pacemaker, and will someday require further surgery to correct the mitral valve. Lucas may face many more challenges at his young age but he has inspired those around him by always having enough love and compassion when we are scared, sick or feeling hopeless. Lucas is my courageous hero and I am truly the one blessed to be his mother.
Psalm 139-13: “For you created my inmost being; You knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made, your works are wonderful I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depth of the earth, your eyes saw my unformed body.”
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JULY - SAYDE JANE LOWE
Hypertrophic Cardiomyopathy (Transplant) & Noonan's Syndrome
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Sayde Jane was born March 27,2013 (from the moment I saw her she was my baby turtle, so her nickname is turtle) full term, she had a heart murmur and the Dr. had told us that it should closed by the time we discharged from the hospital. March 28th came and I was so excited to finally take my baby girl home and bad news came knocking on our door, the Dr. had told us that the murmur had gotten worse so he sent us to UMC in Tucson. They had taken my baby girl to do and echo and EKG to find out that they diagnosed her with hypertrophic cardiomyopathy, and that she would need a heart transplant, my husband and I looked at each other like a deer caught in the headlights. Drs. were very surprised with her diagnosis so they did genetic testing on her to find out that she has Noonan's syndrome which caused her to have the hypertrophic cardiomyopathy. In and out of hospital for her first three months of life, on July 2, 2013 that's when everything took a turn for the worst. Sayde was airlifted from Holy Cross Hospital in Nogales, Az., to UMC in Tucson, we thought that our daughter had given up.
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To our dismay, she proved us wrong, like always. On July 11, 2013 we got transferred to Phoenix Children's Hospital for her transplant evaluation. After many trying days of testing we got listed as 1a on July 23, 2013, what a sigh of relief! July had gone by, August came and went and nothing so we get in to September and sure enough September 9th, we got "the call" and I seriously thought I was in a dream, such a huge weight had been lifted, although our thoughts and prayers went out to family for their loss and pain. It was September 10th at 12:26 a.m. my husband and I walked her down to the OR and we waited the longest wait ever! at 5:15 a.m. the Dr. came into Sayde's hospital room where we had been waiting, to tell us that the heart was pumping on its own and that she did amazing!!!!!! We finally got to see Sayde Jane (turtle) at 7:15 and it was truly a miracle, to see what she had gone through!
We are forever grateful for our donor family who gave our daughter a second chance at life! <3 Slow and steady win the race!!
We are forever grateful for our donor family who gave our daughter a second chance at life! <3 Slow and steady win the race!!
JUNE - MESSIAH "MIRACLE MESSIAH"
Tetralogy of Fallot w/Absent Pulmonary Valve & Digeorge Syndrome
Messiah was born premature on March 29, 2013 with a rare heart defect.
We found out at our 20 week anatomy scan our son was going to be born
with Tetralogy of Fallot w/Absent Pulmonary Valve. Messiah has had two
open heart surgeries, Esophageal fistula repair, Tracheotomy surgery and stent placement.
He was also diagnosed with Digeorge Syndrome after his first open heart surgery when
no thymus gland was detected. Messiah spent 245 days inpatient in the CVICU at Phoenix Children's Hospital.
He is now home with his family doing better and thriving more everyday.
We found out at our 20 week anatomy scan our son was going to be born
with Tetralogy of Fallot w/Absent Pulmonary Valve. Messiah has had two
open heart surgeries, Esophageal fistula repair, Tracheotomy surgery and stent placement.
He was also diagnosed with Digeorge Syndrome after his first open heart surgery when
no thymus gland was detected. Messiah spent 245 days inpatient in the CVICU at Phoenix Children's Hospital.
He is now home with his family doing better and thriving more everyday.
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MAY - NATHAN DAVIES
Ebstein's Anomoly & Pulmonary Stenosis
Nathan was born on May 31, 2013 with known Ebstein's Anomoly and critical pulmonary stenosis. He has been hospitalized three times; around 150+ days. He has had 5 Open Heart Surgeries, two pacemakers placed and has been on ECMO runs twice.
* Nathan is still currently inpatient at St. Mary's (Mayo Clinic) in Rochester, MN.
* Nathan is still currently inpatient at St. Mary's (Mayo Clinic) in Rochester, MN.
APRIL - MICHAEL "MIKEY' GRANADOS -
Ebstein's Anomoly and Wolffe Parkinson's White (WPW)
Hello, my name is Nikki Granados, my husband and I are blessed to be the parents of a beautiful baby boy named Michael, or as we call him "Mikey". He is a beautiful boy with soulful eyes, a dimple in his chin, the most illuminating smile you've ever seen and a very "Special" Heart.
I had a healthy "normal" pregnancy with Mikey. Everything was going smoothly, although in the back of my mind I had always had a feeling something was not right. All the ultrasounds had shown a happy healthy baby growing strong. We were reassured at our 20 week anomaly ultrasound that everything "looked perfect," even though they had struggled to find the four chambers of his heart. After a few attempts they had finally found them and there "was no need to worry." My husband and I exhaled thinking we were in the clear and continued our planning the arrival of our first child.
On December 11, 2010, our son was born! He was PERFECT, I looked at him and knew he was my angel. I knew at that second my life would never be the same, but I didn't expect what came next. I watched as the nurses took my baby to a table next to me to check all his vitals, everything seemed to be in it's place. Last thing, check the heart. I watched as the nurse paused and listened again, then she called my husband and asked him to listen, then they said something to him I couldn't hear, but next thing you know the Neo-natologist was in our room and then he, my newborn son and my husband sped off to the NICU. I waited in my room with family members unable to make out anything anyone was saying. I just needed to know what was going on. Then a nurse finally says to me "your son is going to be transferred to the Phoenix Children's Hospital, let's get you down to the NICU."
I had a healthy "normal" pregnancy with Mikey. Everything was going smoothly, although in the back of my mind I had always had a feeling something was not right. All the ultrasounds had shown a happy healthy baby growing strong. We were reassured at our 20 week anomaly ultrasound that everything "looked perfect," even though they had struggled to find the four chambers of his heart. After a few attempts they had finally found them and there "was no need to worry." My husband and I exhaled thinking we were in the clear and continued our planning the arrival of our first child.
On December 11, 2010, our son was born! He was PERFECT, I looked at him and knew he was my angel. I knew at that second my life would never be the same, but I didn't expect what came next. I watched as the nurses took my baby to a table next to me to check all his vitals, everything seemed to be in it's place. Last thing, check the heart. I watched as the nurse paused and listened again, then she called my husband and asked him to listen, then they said something to him I couldn't hear, but next thing you know the Neo-natologist was in our room and then he, my newborn son and my husband sped off to the NICU. I waited in my room with family members unable to make out anything anyone was saying. I just needed to know what was going on. Then a nurse finally says to me "your son is going to be transferred to the Phoenix Children's Hospital, let's get you down to the NICU."
As I was rolled into the NICU, unable to fully walk yet from the epidural, I saw my husband standing next to our baby who at this point was hooked up to what seemed like a million wires, they were doing an EKG, the ultrasound had taken place while I was coming downstairs. Once all the wires were taken off I finally had the opportunity to hold our son, nobody had given us any answers yet, only that it was his heart. As I held Michael I said "whatever it is, we're getting through this together and we will come out stronger." Finally, a Doctor came in and began to explain to us that Michael had a very rare condition called Ebstein's Anomaly. His WPW had not been diagnosed yet, that came 3 days later after experiencing his first SVT.
We were transferred the day Mikey was born to Phoenix Children's, where we stayed for about 3 1/2 weeks. This was just one of many hospital stays throughout our heart journey, but through it all we have always remained optimistic. Mikey's progress has always been monitored by routine visits to his cardiologist, pediatrician, ECHO's, EKG's, Holter Moniters, Pulse Ox machines and medications.
In December 2013 an MRI confirmed Mikey's Tricuspid Valve was leaking pretty heavily. In February 2014 he underwent a Cath and Ablation. He is scheduled to undergo open heart surgery in a few days (April 8th) to repair his Valve.
To say it has not been a challenging road would be a lie, but through it all Mikey has continued to be such a wonderful and loving kid putting up an amazing fight!
He is our inspiration, our hope our 1 in 100 who has changed our life in a beautiful way! <3
Thank you all for taking the time to read our story.
With Love, The Granados Family.
In December 2013 an MRI confirmed Mikey's Tricuspid Valve was leaking pretty heavily. In February 2014 he underwent a Cath and Ablation. He is scheduled to undergo open heart surgery in a few days (April 8th) to repair his Valve.
To say it has not been a challenging road would be a lie, but through it all Mikey has continued to be such a wonderful and loving kid putting up an amazing fight!
He is our inspiration, our hope our 1 in 100 who has changed our life in a beautiful way! <3
Thank you all for taking the time to read our story.
With Love, The Granados Family.
MARCH - GIANNA LABORIN - ASD, VSD and CoArc
Gianna Ariel is 22 months old. She was born 5 weeks premature with 3 chd's ASD VSD & CoArc. Gianna had open heart surgery at PCH on 4/10/12 at just 8 days old. Her VSD was to big and heart too small, that she was left with a residual VSD.
Her name means "God is gracious "& "Lion of God". She defied the odds and recovered not only from heart surgery , but collapsed lungs, blood clots, overdose of blood pressure medication, failure to gain weight , ng tubes, and breathing distress all in her first 2 weeks of life. We stood at PCH for a month. The road to recovery was hard,
Through all her obstacles , whether it be gaining weight, physical delays, or various illnesses, Gigi :) has demonstrated a determined will and surprised the doctors and therapists time and time again.
As of today, her residual VSD has closed and her CoArc repair is still being monitored. She is steadily gaining weight at 24 lbs. We are told she has delays but is making progress and will be getting fashionable glasses any day.
Like most CHD babies, she is very determined and is a bit if a daredevil.
Being the youngest of 6, she is quite the ham. She knows how to make us all laugh or smile when we are upset. She is a gift from God and keeps everything in perspective for our family. She is our miracle, she is our joy, she is our hero.
Her name means "God is gracious "& "Lion of God". She defied the odds and recovered not only from heart surgery , but collapsed lungs, blood clots, overdose of blood pressure medication, failure to gain weight , ng tubes, and breathing distress all in her first 2 weeks of life. We stood at PCH for a month. The road to recovery was hard,
Through all her obstacles , whether it be gaining weight, physical delays, or various illnesses, Gigi :) has demonstrated a determined will and surprised the doctors and therapists time and time again.
As of today, her residual VSD has closed and her CoArc repair is still being monitored. She is steadily gaining weight at 24 lbs. We are told she has delays but is making progress and will be getting fashionable glasses any day.
Like most CHD babies, she is very determined and is a bit if a daredevil.
Being the youngest of 6, she is quite the ham. She knows how to make us all laugh or smile when we are upset. She is a gift from God and keeps everything in perspective for our family. She is our miracle, she is our joy, she is our hero.
FEBRUARY - PRESTON MICHAEL FLATAU - TOF, 22qDeletion
My son Preston Michael Flatau was born on January 27,2012. His story began before he was even born. My husband and I went into our 19 week ultrasound to find out the sex of the baby. We didn't even think there would be anything wrong or abnormal. Why would there be?? We were two healthy adults. I remember sitting in the ultrasound room. The technician had a concerned look on her face. I asked her if everything was okay.She stated, "yes just looking at details." You are having a boy!! My husband and I laughed about how we were thinking he was a she this entire time. Then, more concern shown on her face. She stated there are some heart defects and clubbed feet. She couldn't give us anymore information than that. She handed us a box of tissues and left the room. My husband and I just looked at each other. We really couldn't even speak. I mean... what do you say? The doctor came in and introduced us to the genetics counselor. He stated these are severe abnormalities. Our son has Tetrology of Fallot and clubbed feet. He stated he could have mental retardation or other genetic disorders. I don't think we have ever cried so much as we did that day. They gave us our options. We can get an amniocentesis done to find out the underlying reason for these defects, we can wait till he is born to find out what is wrong, or we could terminate the pregnancy. I saw his heart beating... I saw his hands and his legs kicking. Terminate?? That word was like putting a bullet through my heart. That night was the first night I actually felt him kick. It was as if he knew, and he was telling me to hold onto him. That is exactly what I did. I knew it was going to be a fight, but we weren't going down without one! I had the amniocentesis done that showed he had Digeorge Syndrome also known as 22q deletion. I spent months researching. There could be 180 defects. Some very severe to some that were minor. We just wouldn't know until he was born. I had ultrasounds every week. Towards the end of the pregnancy they noticed he had an inguinal hernia. Also part of Digeorge. I held my head up high and knew it was just another bump in the road, but we will get through it. Then came January 27... my little miracle's Birthday. They told me before he was born that he would be a "blue" baby and would have to go to NICU right away. To all of our surprise... he was able to stay with us for almost an hour. He wasn't blue at all. That was the greatest gift. He was taken by air vac to PCH a few hours after he was born. He wasn't doing so well in the Thunderbird NICU. Fast forward to 7 days after birth. They wanted to put a cath in his heart to buy us some time for him to gain weight, and be more prepared for surgery. His heart spasmed and they had to pull it out. That day he had many episodes where I thought I might lose him. The last episode they called a code blue. I remember yelling in my head for him to hold on... just hold on. The doctor was called in to perform immediate open heart surgery. The surgery that they were supposed to do months later. 7 hours of waiting, and the doctor told us he is doing great :) Best news I had ever heard. A full month in CVICU and he came home. A couple weeks after he had casting done for 6 months to repair his feet. He then had heel cord surgery... casts again... then boots with a bar. He still wears those at night, but he is walking!!!! :) He also had his hernia repaired at 4 months old. That went great!!! He will need another heart surgery in the future, but he is doing wonderful as of right now :) He puts a smile on everyone's face that meets him. He is so full of life. He has therapists that see him every week, and still quite a few doctors appointments, but he is still smiling :)
He has taught me the true meaning of life. We are so blessed to have him as our son.
He has taught me the true meaning of life. We are so blessed to have him as our son.
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