January 2012 - Nathan Zimmerman - TOF
Nathan is a very happy 4 year old little boy who, except for his scars and doctor’s appointments, has no idea he has Tetrology of Fallot (ToF). I will try to make a very long story short.
During his first weeks of life it was discovered that Nathan’s heart anomaly was much more complicated than typical ToF. Nathan turned blue the first time I tried to feed him. This was the first of, too many, very scary moments for our little miracle. We found Nathan’s aorta had formed surrounding his esophagus and trachea. This would lead to severe feeding and breathing issues requiring a G-tube, trach and ventilator.
Nathan has required many surgeries, including 2 open heart, tracheostomy, g-tube, fundoplication and various scopes and probes. He currently has an artificial pulmonary valve, patched VSD, right pulmonary stent, trach and a G-tube. In less than five years Nathan has earned 5 strands of Courage beads.
Nathan is currently happy and healthy, his heart looks great and is being monitored every six months as we wait and see when he will need a new valve. He continues to struggle with feeding issues. His early near suffocation when eating has left him with a severe aversion to food. He has come a long way finally learning to drink and eat baby food but has a long way to go. He lost the vent years ago but continues to have the trach due to paralyzed vocal cords. In November 2011 he had surgery to move them out of the way in hopes of removing his trach. We are currently awaiting his next scope to see if this worked. It is our hope that 2012 will finally be the year that his trach comes out, we have hoped this every year since he was two.
Nathan is now in Preschool and doing great. His teachers love him and he loves to go. He is healthy and active, and enjoys playing with his sister on his Dream Playground. He’d ride the tire swing for hours if we let him. He is such a sweet little boy always ready to give a hug. Where ever we go people fall in love with him just as we have. We had a great Christmas and look forward to a great new year.
During his first weeks of life it was discovered that Nathan’s heart anomaly was much more complicated than typical ToF. Nathan turned blue the first time I tried to feed him. This was the first of, too many, very scary moments for our little miracle. We found Nathan’s aorta had formed surrounding his esophagus and trachea. This would lead to severe feeding and breathing issues requiring a G-tube, trach and ventilator.
Nathan has required many surgeries, including 2 open heart, tracheostomy, g-tube, fundoplication and various scopes and probes. He currently has an artificial pulmonary valve, patched VSD, right pulmonary stent, trach and a G-tube. In less than five years Nathan has earned 5 strands of Courage beads.
Nathan is currently happy and healthy, his heart looks great and is being monitored every six months as we wait and see when he will need a new valve. He continues to struggle with feeding issues. His early near suffocation when eating has left him with a severe aversion to food. He has come a long way finally learning to drink and eat baby food but has a long way to go. He lost the vent years ago but continues to have the trach due to paralyzed vocal cords. In November 2011 he had surgery to move them out of the way in hopes of removing his trach. We are currently awaiting his next scope to see if this worked. It is our hope that 2012 will finally be the year that his trach comes out, we have hoped this every year since he was two.
Nathan is now in Preschool and doing great. His teachers love him and he loves to go. He is healthy and active, and enjoys playing with his sister on his Dream Playground. He’d ride the tire swing for hours if we let him. He is such a sweet little boy always ready to give a hug. Where ever we go people fall in love with him just as we have. We had a great Christmas and look forward to a great new year.
April 2012 - Paityn
Our little Paityn was born on September 8, 2011. We were expecting her to have multiple heart defects but we weren't expecting her to be "poka doted" as the neonatologist said. She had open sores all over her body. After a skin biopsy they had found she had a rare disorder called "langerhans cell histiocytosis". If only found on the skin it is superficial, but if it spreads to the organs or bones could be deadly. It is very similar to cancer and is often treated with chemotherapy. After several tests the doctors gave us the good news that it hadn't spread to her insides.
Two weeks old and after a blood infection she went into surgery. She had a thoracotomy to repair her coarctation of the Aorta and band one of her vessels that was larger than the other so there would be equal blood flow to the lungs and body. She was then supposed to go home and get bigger to prepare for her second "bigger" surgery. After a few days she went into heart failure and after getting Necrotizing enterocolitis things weren’t looking good. She wasn't getting enough oxygen to her gut so off to the cath-lab to give her an asd in effort to have her blood mix more. After this attempt failed surgery was inevitable.
When looking at echos they found she had a straddling mitral valve. It was going to be very risky to patch her vsd with the mitral valve in the way. A 3 d echo revealed a piece of tissue that was a livesaver for Paityn. This little peice of tissue that they had never seen before was a way to patch her hole. That was a good day! After being warned that it was a long and risky surgery for such a small heart, we prayed and knew that everything was going to be okay and that her surgeon could fix her.
On October 19, 2011 she went into surgery and we waited. After a very, very long day she came back from surgery and it was good, news the surgery went well and she was doing great. The surgeon switched the main vessels, closed the vsd and asd.
Her journey was not to end there. After putting out a milky discharge from her chest tube it was clear she had Chylothorax. She was losing 600 cc a day and after having her chest tube in for 3 weeks it was back to the operating room to sew up her lymph nodes.
Paityn had spent the first 10 weeks of her life in a hospital bed, but we finally took her home the week before Thanksgiving. How thankful we were to have our family whole again. She is amazing to me. She inspires me with her courage. I think she handled her situation so much better that I could have. She always found a way to smile through it. She is so brave and has a lot of fight in her. She has blessed our life in so many ways. She has taught us lessons that no one else could. She has touched so many!
Paityn still has eating issues and aspirates. But I know her and she will continue to surprise me and pull through. She is my hero!
-Paityn's Mom
Two weeks old and after a blood infection she went into surgery. She had a thoracotomy to repair her coarctation of the Aorta and band one of her vessels that was larger than the other so there would be equal blood flow to the lungs and body. She was then supposed to go home and get bigger to prepare for her second "bigger" surgery. After a few days she went into heart failure and after getting Necrotizing enterocolitis things weren’t looking good. She wasn't getting enough oxygen to her gut so off to the cath-lab to give her an asd in effort to have her blood mix more. After this attempt failed surgery was inevitable.
When looking at echos they found she had a straddling mitral valve. It was going to be very risky to patch her vsd with the mitral valve in the way. A 3 d echo revealed a piece of tissue that was a livesaver for Paityn. This little peice of tissue that they had never seen before was a way to patch her hole. That was a good day! After being warned that it was a long and risky surgery for such a small heart, we prayed and knew that everything was going to be okay and that her surgeon could fix her.
On October 19, 2011 she went into surgery and we waited. After a very, very long day she came back from surgery and it was good, news the surgery went well and she was doing great. The surgeon switched the main vessels, closed the vsd and asd.
Her journey was not to end there. After putting out a milky discharge from her chest tube it was clear she had Chylothorax. She was losing 600 cc a day and after having her chest tube in for 3 weeks it was back to the operating room to sew up her lymph nodes.
Paityn had spent the first 10 weeks of her life in a hospital bed, but we finally took her home the week before Thanksgiving. How thankful we were to have our family whole again. She is amazing to me. She inspires me with her courage. I think she handled her situation so much better that I could have. She always found a way to smile through it. She is so brave and has a lot of fight in her. She has blessed our life in so many ways. She has taught us lessons that no one else could. She has touched so many!
Paityn still has eating issues and aspirates. But I know her and she will continue to surprise me and pull through. She is my hero!
-Paityn's Mom
May 2012- Aubrey Lynn Troyer - Truncus Arteriosus
On March 29th, 2012 my husband and I were blessed with the arrival of our beautiful daughter Aubrey Lynn. She was diagnosed in-uteuro with Truncus Arteriosus and we were told she would need heart surgery to repair it, but we were not expecting the full spectrum of challenges our little one would face once she entered the world. Once she was born she was immediately intubated and rushed to the NICU. After only a short time she was taken off the ventilator, and we were able to hold our precious girl for the first time. We were told that she was born with a very large birthmark that started at the base of her scalp and continued down her back, but we weren’t given much more information. The next day she was transferred from Scottsdale Shea to Phoenix Children’s Hospital where we have remained for five weeks now.
Over the next week at PCH she underwent many tests and was visited by many doctors. We were informed that she has malrotation of her intestines, which will require surgery. She was also diagnosed with PHACE syndrome, which is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries. It is an acronym that stands for the medical names of the parts of the body it often impacts. It is a recently named syndrome that was first diagnosed in 1996. These diagnoses led to visits from the dermatologist, ophthalmologist, geneticist, neurologist, and gastroenterologist. Children with PHACE syndrome have higher risk of stroke and seizure, making her time on bypass that much scarier.
On April 9th 2012, at 11 days old, Aubrey had her first open heart surgery. The surgery required separating the pulmonary arteries from the main truncus (the truncus will remain as the first part of the aorta), closure of the ventricular septal defect using a patch, and creating a connection between the right ventricle and the pulmonary arteries using a valved conduit, usually a homograft pulmonary artery. After several hours of worry and prayer, our sweet Aubrey successfully made it out of surgery and back into her room.
Aubrey continues to struggle in her recovery, as her tiny body is not working as efficiently as it should. She is still on the ventilator and was placed on Peritoneal Dialysis to remove the excess swelling and give her kidneys a little break. She has battled feeding issues, swelling, chylothorax, renal insufficiency, blood clotting deficiencies, breathing difficulties, and fever. However, we are proud to report that our little fighter is currently tolerating full feeds, and has managed to stay clear of infection. It has been 22 days since we have been able to hold our baby girl, so hopefully she will continue to remain infection free, successfully wean off the dialysis and ventilator, and find her place in the arms of her parents.
Over the next week at PCH she underwent many tests and was visited by many doctors. We were informed that she has malrotation of her intestines, which will require surgery. She was also diagnosed with PHACE syndrome, which is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries. It is an acronym that stands for the medical names of the parts of the body it often impacts. It is a recently named syndrome that was first diagnosed in 1996. These diagnoses led to visits from the dermatologist, ophthalmologist, geneticist, neurologist, and gastroenterologist. Children with PHACE syndrome have higher risk of stroke and seizure, making her time on bypass that much scarier.
On April 9th 2012, at 11 days old, Aubrey had her first open heart surgery. The surgery required separating the pulmonary arteries from the main truncus (the truncus will remain as the first part of the aorta), closure of the ventricular septal defect using a patch, and creating a connection between the right ventricle and the pulmonary arteries using a valved conduit, usually a homograft pulmonary artery. After several hours of worry and prayer, our sweet Aubrey successfully made it out of surgery and back into her room.
Aubrey continues to struggle in her recovery, as her tiny body is not working as efficiently as it should. She is still on the ventilator and was placed on Peritoneal Dialysis to remove the excess swelling and give her kidneys a little break. She has battled feeding issues, swelling, chylothorax, renal insufficiency, blood clotting deficiencies, breathing difficulties, and fever. However, we are proud to report that our little fighter is currently tolerating full feeds, and has managed to stay clear of infection. It has been 22 days since we have been able to hold our baby girl, so hopefully she will continue to remain infection free, successfully wean off the dialysis and ventilator, and find her place in the arms of her parents.
June 2012 - Sophia Bobbie - HLHS
Sophia’s journey began long before she was born. At our 21 week ultrasound she was diagnosed with multiple heart abnormalities, the primary one being Hypo Plastic Left Heart Syndrome followed by malposed great arteries, double outlet right ventricle and pulmonic stenosis, coupled with malrotation of the duodenum and Asplynnia. She was extremely active during my pregnancy, practicing her ninja skills against my bladder impatiently waiting for the day she would finally make her presence known to the outside world. She was born on August 9, 2008 after 36 hours of labor and an emergency c-section. When she came out, the delivering doctor said he was sure he had delivered the wrong baby. No baby with complex congenital heart disease comes out of the womb at a healthy 7lbs 4oz, full term with pink flush cheeks and a set of pipes that rivaled Mariah Carey. But she did. Sophia came into the world looking as normal as can be, showing no sign that her heart was in distress. It was our first experience seeing her defy odds and befuddle doctors. It would not be our last.
Sophia was born at Banner Good Samaritan and was immediately transferred to the Phoenix Childrens Hospital satellite location on campus. She was in the PICU for 7 days when doctors performed an echo only to discover something amazing had happened. Sophias physiology had changed and for the better. Children born with Hypo Plastic hearts really only have two options: have a heart transplant (pass, thanks) or go through a series of operations. Normally performed within the first 7 weeks of birth, the first in the series is called the Norwood. It would allow doctors to place a shunt or a stint, depending on the case, into her pulmonary artery to assist blood flow to the lungs. Hypoplasts cannot oxygenate their blood as well as a typical heart and over saturation can occur and be life threatening. Somehow, her heart had in this capacity, healed itself. This echo showed her pulmonary artery had managed to constrict itself to an almost normal size, therefore regulating the blood flow all on its own. They could not offer us a concrete explanation other than the pulmonic stenosis may have been a help instead of a hindrance. They were once again, befuddled by what they saw and were happy to announce that if she continued to improve at the rate she was going, the possibility of her coming home soon was great. She was in the PICU 10 days when she was discharged and sent home to live her life until surgery became necessary.
Sophias condition made it difficult for her to nurse, making her fall asleep at the breast out of sheer exhaustion trying to get milk, so we bottle fed. She wasn’t allowed to cry for long periods of time, so there was a lot of holding and carrying making it almost impossible for us to get her to go to sleep in a normal way. She hated to be alone and needed to know someone was in the room with her at all times. She grew well though, eating with well and was healthy as she could be. She was definitely a little smaller than other kids her age, but most people attributed it to my slight stature (I am only 4’ 10”) and I was perfectly fine with that. At 4 months she learned to talk, her first word being “MaMa”, followed by “DaDa” and “baby”. At 5 months she was hand feeding herself. She loved to sit in her high chair and snack on things like Honey Nut Cheerios while fully engrossed in a Baby Einstein dvd. She loved to be read to and adored being outdoors in the sun and fresh air. She was a pretty normal kid living a less than normal existance. She had more doctor visits than what is considered typical. There were cardiologist appointments, pediatrician appointments and monthly shots during RSV season for additional protection her compromised immune system could not provide (thanks to the Asplynnia). Overall though, Sophia was a normal infant, who did normal infant things and behaved in normal infant ways.
On her 6th month birthday, February 9, 2009, she underwent her first surgery. The second in the series, called the Glenn, was to help alleviate some of the stress her heart was under by redirecting the bloodflow to her upper body and to her lungs. It was text book surgery, and on day 3, she awoke with a huge smile on her face. She began to move around so we sat her up. She played with her balloons and giggled and goofed around with her father and I while she stayed in bed. She was fully awake, aware and raring to go. On day 4 we got some fantastic news. Sophia was progressing so well, we could expect to go home much sooner than originally projected. She was admitted on a Monday….and released on that Friday. Sophia had major heart surgery at 6 months old and was ready to go home in 5 days. 5 DAYS. Again her doctors were amazed. This little snippet of a thing had defied them again. She came home to live her life until surgery once again became necessary.
She never did tummy time because it made breathing difficult, so she learned to walk long before she figured out how to crawl ( an eerie testament to how she would live her life). She was 9 months old. She had the hang of it by 10 months and was a little speedracer by her first birthday. We attribute some of her recovery ability to the medical staff that participated. Her care was exemplary from when she was diagnosed in utero and continues to be to this very day. Her cardiologist Dr. Lindblade, a truly incredible man, had been instrumental in the beginning (and throughout her entire life thus far) and continued the tradition by coming to her first birthday party. To have her doctor with us to celebrate her first major life milestone was an amazing experience. I have never met a doctor quite like him and our entire family is so, so grateful we are lucky enough to have him take care of Sophia. Her pediatrician Dr. Herchold at Pediatrix, is also wonderful. He is a no nonsense man who tells us everything we need to know, but always has a gentle touch and kind words for Sophia.
On her 15 month birthday, October 9, 2009, she had the LADDS procedure done to correct her malrotation, once again Phoenix Childrens Hospital by the fantastic Mrs. Dr. Graziano ( I say Mrs. because her husband, also Dr. Graziano, is a pediatric cardiologist in the same practice as Dr. Lindblade and sometimes, it can get confusing when referring to them!). She was home in 48 hours. Again, an amazing recovery. I do not keep mentioning this to brag (Okay, maybe I am a little) but to show her pattern of overcoming her trials and always doing so with the strength and fortitude of a man a hundred times her size. It never ceases to amaze me how children bounce back so well, but kids with CHD seem to fight particularly hard.
At this stage, she was beginning to have a difficult time with doctors, however. She was becoming more and more aware that every time we went to a certain location it meant shots or an uncomfortable echo and once she was wise to it all, things got a little hairy. She would try to power through it, but she had about enough of all the poking and prodding. At most appointments, we were known throughout the office as “that” family. I know they are all childrens doctors and go through this sort of thing all of the time, but Sophia was extra combative for a little while. She wanted so badly to control something, a trait she has inherited from me, unfortunately. She was on quite a lot of medications for a while. Double daily doses of lasiks and enalapril and a daily dose of amoxicillin and aspirin. She took them like a champ, and rarely complained about them. To her, this lifestyle was all she knew and was completely normal. She grew and thrived. Always skinny but growing to be the tallest kid her age in the room. She loved to play with the new friends she was making as she got older and participated in playgroups and reading time at the library. Sophia became quite the personality. She was the wittiest toddler I knew. Yes, I am biased, but I can back it up with a hundred stories that will make you laugh until you pee your pants. By the time she was two, she had become a big sister. Her brother, born with no complications, quickly became her buddy and her partner in crime as they began to grow up together. Sophia loved having this permanent playmate and was sure to include him, however unwilling he may have been, in all of her science experiments and toddler schemes.
In July of 2011, three weeks before her third birthday, Sophia underwent the third in her series of surgeries. The Fontann was performed once again at Phoenix Childrens Hospital under the watchful eye of Dr. Pearl. He had performed her first operation, so we knew she would be in good hands. She was in the hospital this time for 13 days. Far longer than we had anticipated, given her previous record of lightening fast recovery times. Again, the doctors were confused, but this time by her lack of initial progress. Her chest tube output was far too high and it was something of a concern. But not for long. Within 3 days she was sitting up, within 4 out of bed and for a ride in the wagon and within 6, walking. It was a short walk and straight to the playroom (hey, a girl has her priorities) to see the dollhouse and the toys. She walked with chest tubes and IVs in and never once complained about being strapped to a machine. She tried so hard to be brave, but this one got to her. She fought off the nurses, refusing her meds (something she has never done before). We all reasoned that it was because she had to be kept in bed for most of the day and her loss of control over her comings and goings had prompted her to try and control something else. Her medicine became her enemy and she fought tooth and nail against taking it. So much so that when they put her under to remove her PIC line, they had to add an NJ tube in the process. It became the only way we could get her meds into her body to help her heal faster. It was a miserable experience and she hated it. Once she was home, however, she fell back into her old pattern of taking each dose without complaint or comment and within a week, the tube came out.
She was prescribed Lasiks for swelling in addition to her usual doses of Enalapril, Amoxicillin and aspirin. She was also prescribed a new medication to us called Coumadin, an anti coagulant and blood thinner. A 3 year old on anti coagulants has been an interesting and sometimes frightening adjustment. Every fall or bump to her head or scrape to her knee has become a process to ensure she has no bleeding or heavy bruising. She is subjected to sometimes twice weekly finger poking sessions at the cardiologists to monitor the level of medication in her blood and has become a pro at it. I have since heavily invested in bubble wrap and we look forward to the day she finally gets permission to stop taking it.
In October of 2011, Sophia went to her first day of preschool. Her father and I were beside ourselves with joy to see how far she had come. She thoroughly enjoyed school, the learning environment and process and loved having a room full of friends. Going to school. Playing with her friends. Running around. Doing arts and crafts. She is a normal child. She gets winded a little faster than a “typical” kid and has to pace herself a bit, but she always does it on her own, listening to her body and recognizing she needs a break. Then she is up and at it again. Today she is 3 and a half, and will be 4 in August. She is thriving, growing in leaps and bounds. She takes her medicine every day with a smile and shows off her scar with pride claiming to be a member of the “Zipper Club”. She is hilarious; I have yet to meet a funnier preschooler. She gets jokes and sarcasm and uses her fabulous little smirk to help get her out of trouble. She is mischievous and can be so, so sneaky. Sophia adores her brother Joey and cannot stand him all at the same time. They play together and fight together and stand united when something is broken until she can no longer resist the pressure of her own age and tattles on him. Sophia L-O-V-E-S to pretend. She wants to be a dog one minute and an astronaut the next. She says things like “meow” instead of the actual words in the songs she randomly sings and hates to be in front of a crowd. Sophia doesn’t know how to tie her shoes yet, but can completely undress and redress herself in about 30 seconds. As long as the TV isn’t on. Then it takes her an hour and a half. She has a smile that lights up a room and is contagious. Sophia has an incomparable spirit and a zest for life I never imagined possible in such a young child. She delights and frustrates us on a daily basis. She makes us laugh all day long. Sophia lives and breathes and has vitality and soul and love in her heart that is rivaled by nobody on this planet or I dare say any other. Our lives have been so blessed by her existence, made richer and more meaningful in all ways. Sophia is not defined by her condition. Sophia is not a statistic or an example. She is a beautiful, courageous, hysterical, pain in the ass and she embodies what it means to fight and be tough without losing a sense of vulnerability or humanity. We have been so lucky to have a child that has done so well, in spite of everything the universe has thrown at her. We have been so lucky to have the doctors we do, who take care of her as if she were their own child, always keeping her best interest in mind and we have been so much more than lucky to be blessed with the family we have, always there to support us whenever we need it. She continues to inspire her family, friends and complete strangers every day, giving some courage, some hope and others a good laugh. She has been placed in front of the firing squad too may times for a child her age and too many times to count. She was born, she lives and she will continue to fight.
She is Sophia Joan, Warrior Princess.
And she is our hero.
You can read more about Sophia and her journey on her mom's blog at
www.lifeintheoncominglane.blogspot.com
Sophia was born at Banner Good Samaritan and was immediately transferred to the Phoenix Childrens Hospital satellite location on campus. She was in the PICU for 7 days when doctors performed an echo only to discover something amazing had happened. Sophias physiology had changed and for the better. Children born with Hypo Plastic hearts really only have two options: have a heart transplant (pass, thanks) or go through a series of operations. Normally performed within the first 7 weeks of birth, the first in the series is called the Norwood. It would allow doctors to place a shunt or a stint, depending on the case, into her pulmonary artery to assist blood flow to the lungs. Hypoplasts cannot oxygenate their blood as well as a typical heart and over saturation can occur and be life threatening. Somehow, her heart had in this capacity, healed itself. This echo showed her pulmonary artery had managed to constrict itself to an almost normal size, therefore regulating the blood flow all on its own. They could not offer us a concrete explanation other than the pulmonic stenosis may have been a help instead of a hindrance. They were once again, befuddled by what they saw and were happy to announce that if she continued to improve at the rate she was going, the possibility of her coming home soon was great. She was in the PICU 10 days when she was discharged and sent home to live her life until surgery became necessary.
Sophias condition made it difficult for her to nurse, making her fall asleep at the breast out of sheer exhaustion trying to get milk, so we bottle fed. She wasn’t allowed to cry for long periods of time, so there was a lot of holding and carrying making it almost impossible for us to get her to go to sleep in a normal way. She hated to be alone and needed to know someone was in the room with her at all times. She grew well though, eating with well and was healthy as she could be. She was definitely a little smaller than other kids her age, but most people attributed it to my slight stature (I am only 4’ 10”) and I was perfectly fine with that. At 4 months she learned to talk, her first word being “MaMa”, followed by “DaDa” and “baby”. At 5 months she was hand feeding herself. She loved to sit in her high chair and snack on things like Honey Nut Cheerios while fully engrossed in a Baby Einstein dvd. She loved to be read to and adored being outdoors in the sun and fresh air. She was a pretty normal kid living a less than normal existance. She had more doctor visits than what is considered typical. There were cardiologist appointments, pediatrician appointments and monthly shots during RSV season for additional protection her compromised immune system could not provide (thanks to the Asplynnia). Overall though, Sophia was a normal infant, who did normal infant things and behaved in normal infant ways.
On her 6th month birthday, February 9, 2009, she underwent her first surgery. The second in the series, called the Glenn, was to help alleviate some of the stress her heart was under by redirecting the bloodflow to her upper body and to her lungs. It was text book surgery, and on day 3, she awoke with a huge smile on her face. She began to move around so we sat her up. She played with her balloons and giggled and goofed around with her father and I while she stayed in bed. She was fully awake, aware and raring to go. On day 4 we got some fantastic news. Sophia was progressing so well, we could expect to go home much sooner than originally projected. She was admitted on a Monday….and released on that Friday. Sophia had major heart surgery at 6 months old and was ready to go home in 5 days. 5 DAYS. Again her doctors were amazed. This little snippet of a thing had defied them again. She came home to live her life until surgery once again became necessary.
She never did tummy time because it made breathing difficult, so she learned to walk long before she figured out how to crawl ( an eerie testament to how she would live her life). She was 9 months old. She had the hang of it by 10 months and was a little speedracer by her first birthday. We attribute some of her recovery ability to the medical staff that participated. Her care was exemplary from when she was diagnosed in utero and continues to be to this very day. Her cardiologist Dr. Lindblade, a truly incredible man, had been instrumental in the beginning (and throughout her entire life thus far) and continued the tradition by coming to her first birthday party. To have her doctor with us to celebrate her first major life milestone was an amazing experience. I have never met a doctor quite like him and our entire family is so, so grateful we are lucky enough to have him take care of Sophia. Her pediatrician Dr. Herchold at Pediatrix, is also wonderful. He is a no nonsense man who tells us everything we need to know, but always has a gentle touch and kind words for Sophia.
On her 15 month birthday, October 9, 2009, she had the LADDS procedure done to correct her malrotation, once again Phoenix Childrens Hospital by the fantastic Mrs. Dr. Graziano ( I say Mrs. because her husband, also Dr. Graziano, is a pediatric cardiologist in the same practice as Dr. Lindblade and sometimes, it can get confusing when referring to them!). She was home in 48 hours. Again, an amazing recovery. I do not keep mentioning this to brag (Okay, maybe I am a little) but to show her pattern of overcoming her trials and always doing so with the strength and fortitude of a man a hundred times her size. It never ceases to amaze me how children bounce back so well, but kids with CHD seem to fight particularly hard.
At this stage, she was beginning to have a difficult time with doctors, however. She was becoming more and more aware that every time we went to a certain location it meant shots or an uncomfortable echo and once she was wise to it all, things got a little hairy. She would try to power through it, but she had about enough of all the poking and prodding. At most appointments, we were known throughout the office as “that” family. I know they are all childrens doctors and go through this sort of thing all of the time, but Sophia was extra combative for a little while. She wanted so badly to control something, a trait she has inherited from me, unfortunately. She was on quite a lot of medications for a while. Double daily doses of lasiks and enalapril and a daily dose of amoxicillin and aspirin. She took them like a champ, and rarely complained about them. To her, this lifestyle was all she knew and was completely normal. She grew and thrived. Always skinny but growing to be the tallest kid her age in the room. She loved to play with the new friends she was making as she got older and participated in playgroups and reading time at the library. Sophia became quite the personality. She was the wittiest toddler I knew. Yes, I am biased, but I can back it up with a hundred stories that will make you laugh until you pee your pants. By the time she was two, she had become a big sister. Her brother, born with no complications, quickly became her buddy and her partner in crime as they began to grow up together. Sophia loved having this permanent playmate and was sure to include him, however unwilling he may have been, in all of her science experiments and toddler schemes.
In July of 2011, three weeks before her third birthday, Sophia underwent the third in her series of surgeries. The Fontann was performed once again at Phoenix Childrens Hospital under the watchful eye of Dr. Pearl. He had performed her first operation, so we knew she would be in good hands. She was in the hospital this time for 13 days. Far longer than we had anticipated, given her previous record of lightening fast recovery times. Again, the doctors were confused, but this time by her lack of initial progress. Her chest tube output was far too high and it was something of a concern. But not for long. Within 3 days she was sitting up, within 4 out of bed and for a ride in the wagon and within 6, walking. It was a short walk and straight to the playroom (hey, a girl has her priorities) to see the dollhouse and the toys. She walked with chest tubes and IVs in and never once complained about being strapped to a machine. She tried so hard to be brave, but this one got to her. She fought off the nurses, refusing her meds (something she has never done before). We all reasoned that it was because she had to be kept in bed for most of the day and her loss of control over her comings and goings had prompted her to try and control something else. Her medicine became her enemy and she fought tooth and nail against taking it. So much so that when they put her under to remove her PIC line, they had to add an NJ tube in the process. It became the only way we could get her meds into her body to help her heal faster. It was a miserable experience and she hated it. Once she was home, however, she fell back into her old pattern of taking each dose without complaint or comment and within a week, the tube came out.
She was prescribed Lasiks for swelling in addition to her usual doses of Enalapril, Amoxicillin and aspirin. She was also prescribed a new medication to us called Coumadin, an anti coagulant and blood thinner. A 3 year old on anti coagulants has been an interesting and sometimes frightening adjustment. Every fall or bump to her head or scrape to her knee has become a process to ensure she has no bleeding or heavy bruising. She is subjected to sometimes twice weekly finger poking sessions at the cardiologists to monitor the level of medication in her blood and has become a pro at it. I have since heavily invested in bubble wrap and we look forward to the day she finally gets permission to stop taking it.
In October of 2011, Sophia went to her first day of preschool. Her father and I were beside ourselves with joy to see how far she had come. She thoroughly enjoyed school, the learning environment and process and loved having a room full of friends. Going to school. Playing with her friends. Running around. Doing arts and crafts. She is a normal child. She gets winded a little faster than a “typical” kid and has to pace herself a bit, but she always does it on her own, listening to her body and recognizing she needs a break. Then she is up and at it again. Today she is 3 and a half, and will be 4 in August. She is thriving, growing in leaps and bounds. She takes her medicine every day with a smile and shows off her scar with pride claiming to be a member of the “Zipper Club”. She is hilarious; I have yet to meet a funnier preschooler. She gets jokes and sarcasm and uses her fabulous little smirk to help get her out of trouble. She is mischievous and can be so, so sneaky. Sophia adores her brother Joey and cannot stand him all at the same time. They play together and fight together and stand united when something is broken until she can no longer resist the pressure of her own age and tattles on him. Sophia L-O-V-E-S to pretend. She wants to be a dog one minute and an astronaut the next. She says things like “meow” instead of the actual words in the songs she randomly sings and hates to be in front of a crowd. Sophia doesn’t know how to tie her shoes yet, but can completely undress and redress herself in about 30 seconds. As long as the TV isn’t on. Then it takes her an hour and a half. She has a smile that lights up a room and is contagious. Sophia has an incomparable spirit and a zest for life I never imagined possible in such a young child. She delights and frustrates us on a daily basis. She makes us laugh all day long. Sophia lives and breathes and has vitality and soul and love in her heart that is rivaled by nobody on this planet or I dare say any other. Our lives have been so blessed by her existence, made richer and more meaningful in all ways. Sophia is not defined by her condition. Sophia is not a statistic or an example. She is a beautiful, courageous, hysterical, pain in the ass and she embodies what it means to fight and be tough without losing a sense of vulnerability or humanity. We have been so lucky to have a child that has done so well, in spite of everything the universe has thrown at her. We have been so lucky to have the doctors we do, who take care of her as if she were their own child, always keeping her best interest in mind and we have been so much more than lucky to be blessed with the family we have, always there to support us whenever we need it. She continues to inspire her family, friends and complete strangers every day, giving some courage, some hope and others a good laugh. She has been placed in front of the firing squad too may times for a child her age and too many times to count. She was born, she lives and she will continue to fight.
She is Sophia Joan, Warrior Princess.
And she is our hero.
You can read more about Sophia and her journey on her mom's blog at
www.lifeintheoncominglane.blogspot.com
July 2012 - PJ Pacheco - VSD, Hypoplastic Arch, Aortic Stenosis
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Pacheco Jorge Pacheco, better known as "P.J." was born January 22, 2009. P.J. was born one month before his due date, weighing in at 5lbs 5ozs at Banner Thunderbird Hospital and delivered by Dr. Tummala. The day P.J. was born, he was admitted to the NICU. P.J? was diagnosed with his congenital heart defect at 2 days old and air vaced to Phoenix Childrens Hospital. P.J. underwent his 1st open heart surgery, the Norwood procedure, when he was 1 week old and his 2nd open heart surgery the next morning. P.J. stayed at PCH for 31 days before he was discharged home. P.J. discharge came with an NG tube, pulse oximeter machine, a Joey feeding pump, a scale, a binder to keep track of his feedings & weight, a high calorie formula and lots of meds. P.J. soon overcame these feeding issues and left the Joey feeding pump and NG tube behind. At approximately 6 months of age, it was time for P.J.'s next open heart surgery, the Bi-dirrectional Glenn procedure. This procedure was uneventful, however, was followed by some feeding issues. It turned out that the breathing tube damaged P.J.'s vocal cords which caused him to have silent aspiration. P.J. was put on thinckened feeds for is already high calorie formula. Prior to discharge from this surgery, I was asked if P.J.'s picture could be used as part of their cardiac surgery journey board. This journey board board would be given to cardiac surgery patients at PCH.
In the next three years P.J. reached all his mile stones with the exception of speech, which due to the damaged vocal cord, his speech was delayed. We overcame this obstacle by teaching P.J. sign language, gettimg him speech therapy and starting preschool when he turned three.
Now at 3 1/2 years old, P.J. underwent his 4th open heart surgery. He was scheduled for the Rastelli procedure, however, once Dr. Pearl went in, he decieded that the Fontan procedure would be best for P.J.
That brings us to the current day, admitted at PCH after his 4th open heart surgery. P.J.'s first words after surgery, "I want to go home now". On day two post op, P.J. was up and walking.
P.J. Pacheco my 1 in 100 and an inspiration to everyone who meets him... to have a heart condition and not let that stop him from accomplishing his dreams.
Argelia Pacheco
In the next three years P.J. reached all his mile stones with the exception of speech, which due to the damaged vocal cord, his speech was delayed. We overcame this obstacle by teaching P.J. sign language, gettimg him speech therapy and starting preschool when he turned three.
Now at 3 1/2 years old, P.J. underwent his 4th open heart surgery. He was scheduled for the Rastelli procedure, however, once Dr. Pearl went in, he decieded that the Fontan procedure would be best for P.J.
That brings us to the current day, admitted at PCH after his 4th open heart surgery. P.J.'s first words after surgery, "I want to go home now". On day two post op, P.J. was up and walking.
P.J. Pacheco my 1 in 100 and an inspiration to everyone who meets him... to have a heart condition and not let that stop him from accomplishing his dreams.
Argelia Pacheco
August 2012 - Dylan McQueen - Transplant Recipient
Hello to all the wonderful Mended Little Hearts families out there! What a privilege it is to be invited by Mended Little Hearts Phoenix to present to you our new website Transplant Families (transplantfamilies.org).
We know that a portion of the CHD community will eventually be affected by transplant, and we graciously invite you to our website to share in our information. There are so many advances in the field of pediatric transplant that are giving our kids great hope of having normal lives. The survival rates are getting better and better with each passing year. Our ultimate hope is that one day there won't be a need for transplant, but as long as there is, we as a community of parents want the most positive experience we can possibly have for our children. And we can achieve that with shared knowledge and hope.
Transplant Families was a project born out of the need for more information and hope. It was conceptualized the moment our family discovered our infant son was diagnosed with dilated cardiomyopathy less than 24 hours after being born. After three days of life, we were approached by our first transplant coordinator (who is still one of our families dearest friends). As if the initial diagnosis wasn't bad enough, we were being told our son needed a heart transplant. There were many who believed he might not even survive the flight to the transplant center. It was almost too much to process. Luckily we did not have to make the decision at that very moment. He got better temporarily with medical therapies and was released home with a feeding tube and a slew of medications. However, six months later, when his health sharply declined and we were faced with no alternatives. We began looking for a transplant center and thus our journey began.
At that time, we did not have a pediatric transplant center in the local area. This forced us to look into all the pediatric transplant centers across the United States. I dreaded travelling for medical care, but now, I feel fortunate to have had the opportunity to compare so many amazing facilities. Each one is unique in their own operating styles and procedures. At the same time they all perform with the highest of standards. It is truly fascinating.
We know that a portion of the CHD community will eventually be affected by transplant, and we graciously invite you to our website to share in our information. There are so many advances in the field of pediatric transplant that are giving our kids great hope of having normal lives. The survival rates are getting better and better with each passing year. Our ultimate hope is that one day there won't be a need for transplant, but as long as there is, we as a community of parents want the most positive experience we can possibly have for our children. And we can achieve that with shared knowledge and hope.
Transplant Families was a project born out of the need for more information and hope. It was conceptualized the moment our family discovered our infant son was diagnosed with dilated cardiomyopathy less than 24 hours after being born. After three days of life, we were approached by our first transplant coordinator (who is still one of our families dearest friends). As if the initial diagnosis wasn't bad enough, we were being told our son needed a heart transplant. There were many who believed he might not even survive the flight to the transplant center. It was almost too much to process. Luckily we did not have to make the decision at that very moment. He got better temporarily with medical therapies and was released home with a feeding tube and a slew of medications. However, six months later, when his health sharply declined and we were faced with no alternatives. We began looking for a transplant center and thus our journey began.
At that time, we did not have a pediatric transplant center in the local area. This forced us to look into all the pediatric transplant centers across the United States. I dreaded travelling for medical care, but now, I feel fortunate to have had the opportunity to compare so many amazing facilities. Each one is unique in their own operating styles and procedures. At the same time they all perform with the highest of standards. It is truly fascinating.
* Dylan, one week prior to cardiac transplantation
As many parents do, I researched night and day about everything related to pediatric transplant. It seemed there was a good amount of information for adult transplant recipients, but very little specific to pediatric recipient issues. I had so many questions. Looking into transplant not only gave me a sense of purpose, but also helped me get answers to so many questions. I thought, if I have these questions I am confident other transplant parents do as well. Maybe I could give them the benefit of hundreds of hours worth of scouring the internet and libraries for new information.
I present to you the cumulnation of that research, and am adding more information each week. It is our dream to help other families. Our vision is to post our findings so that others have access to all the amazing discoveries being made in the field of pediatric transplant. We also post success stories of families that are recovering and thriving since their transplants. We want to offer transplant families hope, because when you are sitting in a hospital room listening to the familiar whirring sounds of heart monitors and IV pumps, sometimes hope is the best medicine you have. From one advocate mom to another.
Melissa McQueen
Founder of Transplant Families and Advocate Mom of Alex 7, Maddie 5 and Dylan 4
As many parents do, I researched night and day about everything related to pediatric transplant. It seemed there was a good amount of information for adult transplant recipients, but very little specific to pediatric recipient issues. I had so many questions. Looking into transplant not only gave me a sense of purpose, but also helped me get answers to so many questions. I thought, if I have these questions I am confident other transplant parents do as well. Maybe I could give them the benefit of hundreds of hours worth of scouring the internet and libraries for new information.
I present to you the cumulnation of that research, and am adding more information each week. It is our dream to help other families. Our vision is to post our findings so that others have access to all the amazing discoveries being made in the field of pediatric transplant. We also post success stories of families that are recovering and thriving since their transplants. We want to offer transplant families hope, because when you are sitting in a hospital room listening to the familiar whirring sounds of heart monitors and IV pumps, sometimes hope is the best medicine you have. From one advocate mom to another.
Melissa McQueen
Founder of Transplant Families and Advocate Mom of Alex 7, Maddie 5 and Dylan 4
