Khloe’s Story

Although today is the last day of February, this is not my last Heart story to share. I have two more, so I beg your indulgence for continuing into the first few days of March. 🙂 After all, February is the shortest month!

Khloe Madison Gorman is a smart, beautiful 12-year-old girl living in Louisiana. She started having heart problems at age 9 and was diagnosed with hypertrophic cardiomyopathy (where the heart muscle is too thick and stiff) two years later. She is currently stable, but puberty is tough on kids with cardiomyopathy. Khloe’s mom Whitney is a rock star in her efforts to raise money and awareness for pediatric cardiomyopathy and I am so grateful she agreed to share Khloe’s story.

 

All throughout her life, Khloe has been a remarkable child! She was very smart and outgoing from a young age and always more mature than most her age.

In 2009, her pediatrician heard a murmur. For years, some said they had heard it and others said there was nothing there. Her pediatrician immediately scheduled an appointment with our local pediatric cardiologist. The first appointment was great. Dr. King said, “See you in 1 year”.

In November 2010, we went for her first 1 year check up. Dr. King then noticed a change in her EKG from the previous year. He said, “Something is suspicious, I would like to run a stress test.” In December 2010, Khloe ran her first stress test. She did excellent. There were changes and her Echo did not show a whole lot, except there looked to be some thickening of her septum muscle, the inner walls of the heart muscle that separates the 2 ventricles.

In February 8th of 2011, Khloe was admitted to St. Francis Hospital for a heart cath. Dr. Lucas was amazing. He confirmed the thickening, but said all looked great.

 In March 2011, we sent off Khloe’s genetic test and she was started on a low dose beta blocker. On May 13, 2011, Khloe’s genetic test confirmed she has Hypertrophic Cardiomyopathy with a mutated gene, ACTC1, dominate gene.

Khloe has done exceptional for several years. Beginning January of this year, Khloe has had more and more problems, we believe due to puberty, which is the enemy of HCM.

In May, Khloe had another stress test and her Blood Pressure dropped while walking. They knew then things were changing, progressing.

In August, we met her Electrophysiologist, Dr. Scott Macicek from New Orleans. Dr. King felt she needed to due to her developing Prolonged QT (According to Wikipedia, “The QT interval is a measure of the time between the start of the Q wave and the end of the T wave in the heart’s electrical cycle.”) on her EKG. Dr. Macicek then suggested she start another beta blocker. She had to stop taking the first after a few months, because her Blood Pressure would drop too low.

On August 24, 2013, Khloe caught a virus. She did not feel very well. We went to the ER where Khloe was later admitted to have IV antibiotics just in case it was an infection. The following morning, I was informed her B-NP levels were really high. At the time I did not know what that meant. Her levels were 4442; the following day they were 5108. Dr. King as well as Dr. Macicek and Dr. Young (the Cardiomyopathy Specialist) were all a little concerned. From there, we had several more appointments where her B-NP levels were all over the place. (According to WebMD, “A brain natriuretic peptide (BNP) test measures the amount of the BNP hormone in your blood. BNP is made by your heart and shows how well your heart is working. Normally, only a low amount of BNP is found in your blood. But if your heart has to work harder than usual over a long period of time, such as from heart failure, the heart releases more BNP, increasing the blood level of BNP.”)

They then decided it was in her best interest to make a trip to New Orleans to have some tests done. On September 18, 2013, Khloe went for her first Cardiac MRI. She did fantastic. We then found out the reason her B-NP levels were elevated is due to diastolic dysfunction. It had caused her left atrium to become enlarged from the pressure inside of her heart being too high.

In October 2013, Khloe went back to school after missing 4 weeks. She was still maintaining an A average!!!! Towards the end of the month, Khloe began having bad spells and not feeling well at all. On October 24, 2013, we were headed back to New Orleans, this time for surgery. On October 30, 2013, Khloe had a Pacing/ Defibrillator placed. She is now doing amazing and is feeling better than she has in a long time. We thank everyone for every prayer and thought. Thank you for reading!!

The above was written by Whitney for the “Prayers for Khloe Madison” Facebook page: https://www.facebook.com/Prayers4Khloe. Please “like” and share!

Here is the link to the webpage for Whitney’s fundraiser: http://www.crowdrise.com/cowboyup4cardiomyopathy/fundraiser/whitneypatrick. Like me, she has become an Ambassador for the Children’s Cardiomyopathy Foundation.

Here is a recent update from Whitney about Khloe’s current status: “She is stable right now. Her greatest thickness is 1.95 cm and which is up from 1.6 in September. She currently has diastolic dysfunction, POTS, tachycardia. Defib placed oct 2013. She has a low BP and her pacer goes off some.”

 Although Khloe is stable, we need to keep fighting for better treatments and a cure. She and Whitney are fighters, but they still need your help. For more information about pediatric cardiomyopathy, please visit the Children’s Cardiomyopathy Foundation website: http://www.childrenscardiomyopathy.org

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Whitney and Khloe

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Joey’s Story

Today’s story features one of my favorite Heart Kids Joey Middlemiss. I did not get to know Joey or his parents until after his death last September at six-years-old, but I have been captivated by Joey’s spirit and the strength of his parents since then. Joey’s spirit and love of life shine through in every photograph. He loved The Beatles and lived each day to its fullest, so his parents started the “Joseph Middlemiss All You Need Is Love Mission” in his name. Please “like” their Facebook page to learn all about Joey and the good works that have been performed through the Mission in his name, since his death: https://www.facebook.com/JosephMiddlemissLove.

I feel so connected to Joey through our mutual love of The Beatles and to Scott and Kate due to the fact that we lost our sweet Heart Warriors within a few months of each other. I’m sure he and Lucy are rockin’ out in Heaven together. Here is Joey’s story in Kate’s own words.

 

Our worries about Joseph’s future began long before his tumultuous entrance into the world on May 31st, 2007.  Our world was changed so many months before, on a cold December morning. Professionals analyzing a 10-week ultrasound of Joseph delivered the tragic news that OUR baby had a VERY slim chance of surviving and if he did, he would have MANY life-altering “abnormalities.” All of the joyful feelings that usually fill the thoughts and lives of expectant parents were stolen from us on this day and replaced with sadness and fear.  All of our hopes, plans, and expectations for our life with our child changed forever.  Subsequent ultrasounds and fetal tests renewed some of our hope to bring a “healthy” child into this world, but we learned that doctors, tests, and percentages are not infallible.

On May 31st, 2007, our beautiful boy entered the world, fighting for his life from his very first breath.  During the time that should have been filled with tears of happiness, fear overcame us as we waited…and waited…and waited to hear that first shrilling cry of new life; a cry that was not destined to come without medical intervention.  Scott and I were not given the opportunity to hold, or even see, our beautiful little boy for hours and hours. The moments that were supposed to be filled with joy were filled with a sickening feeling of emptiness. We still mourn the loss of this most precious time.

Joey was soon labeled “medically fragile” and was whisked off to Boston to be poked, prodded, and examined by the team of “experts.” Prior to his hasty transfer, I was finally given the opportunity to hold my precious baby boy and to look into those beautiful eyes of his for a few brief moments. He instantly stole my heart, but then I felt that it was being ripped from me as he was rushed out, en route to Boston. I was forced to stay behind in the local hospital until my condition was stabilized, two days later. This is something a mother should never have to do.

A cloud of fear and uncertainty formed and shadowed our lives during the months and years that followed. Diagnoses were given, predictions were made, but none of those “experts” could quite figure out the little man who had already stolen our hearts: “We think he has…..He may not live through this episode…He may not see his First Birthday…We predict a longevity of 2 years…He may never be able to….He may never BE…This is WRONG with him and that is WRONG with him…”  As phrases like these filled our lives during Joseph’s 3-month hospital stay, all we wanted to do was LOVE the little boy that we had brought into this world.  We wanted SOMEONE to see him as we did; as a beautiful GIFT!

A brief homecoming was shortly followed by a long re-admission, but we finally took our gorgeous little boy HOME in late August.  One would expect that the cloud of fear would have begun to lift at this time, but we soon realized that the fight had really just begun. Now home with little medical, financial, or educational support, we felt more LOST, ALONE, INADEQUATE, and SCARED than ever. Medical expenses…frequent health scares…sleepless nights…dislodged feeding tubes…equipment malfunctions…the UNKNOWN future. Joseph was sent home without a clear diagnosis and NO long term prognosis. We were forced to cherish each moment and live one day at a time. Fortunately, we were not asked to do this alone.

I’m not exactly sure how it happened, but Joseph’s story began touching other’s lives and opening hearts of family members, friends, co-workers, students, school families, service providers, doctors, specialists, and even strangers. Scott and I received an outpouring of support. The dark clouds of fear and uncertainty began to dissipate as people reached out to us and held our little family, ever so gently, in their thoughts and prayers.

Joseph is now a beautiful, spirited, and life-filled three-and-a-half year old little boy. He continues to mystify the medical world as his heart condition has changed from dilated cardiomyopathy to hypertrophic cardiomyopathy, a progression that is unknown to any of his “world-renowned” cardiac specialists. As the years have progressed, new diagnoses have also emerged, making it clear that he most probably has an unidentified syndrome. Joseph has been seen by many experts in the field and his case has been presented at national genetics conferences, but NO ONE can quite figure him out.  We have come to realize that we may never have a clear diagnosis or a long term prognosis.  This is hard to accept, but we will continue to love him for who he is.

Although his cardiac status continues to be the main concern, Scott and I still struggle with the day-to-day frustrations of trying to get our little boy to eat. Feeding a child is such a natural occurrence, but it has never been easy for us. Due to the severity of his heart condition, Joey did not have the strength to eat as an infant. Subsequent years of gastrointestinal issues, structural anomalies, and continued cardiac demands made feeding a very unpleasant, and often impossible, task for him. Once his cardiac condition stabilized a bit, he underwent surgery for the placement of a feeding tube right around his 3 month birthday. Since this time, we have had a love-hate relationship with “the tube.” It has kept him alive, nourished him, and has prevented MANY hospital stays for dehydration, but we continue to struggle with feeding issues on a daily basis. Joseph has gone to “food school” for the past 2 years and has learned many new skills. There are weeks when he eats well and we are convinced that he will be “tube free.” These times are usually followed by long periods of oral setbacks, taking us on what we refer to as the “feeding roller coaster ride.”  No parent wants their child to rely on a feeding pump and high calorie formula for nutrition, but it has just become one of the many things we have learned to accept. We are here to support Joseph and provide him with the needed therapies, but he will ultimately EAT when HE is ready, just as he has done with every other obstacle placed before him.

Over the years, Joseph has revisited the hospital as an inpatient numerous times, has undergone multiple procedures, surgeries, and tests, but has faced it all with bravery far beyond his age. His love of life is evident to everyone he meets and he continues to defy the odds stacked against him. Doctors are continually shocked when they meet him, because his persona does not match the morbid diagnoses and test results that fill his VERY large hospital binder. Just last week, Joey unhooked himself from the cardiac monitors in his hospital room, picked up his beloved blue ukulele (yes…he takes this with him just about everywhere he goes), and marched through the hospital hallways playing music for his doctors, nurses, families, and fellow patients. THIS is our son. This is HIS gift!

Over the past few weeks, Joseph has had some major cardiac setbacks resulting in hospital stays and many tests. Open heart surgery was considered as an option, but careful collaboration between cardiac specialists revealed that it would not be a long term solution. For now, Joseph’s condition is being managed by the addition of some new medications, but it has become apparent that a heart transplant is most likely in his future. We are working closely with the transplant team at Children’s Hospital Boston and are monitoring him for signs of progressive heart failure. As always, it is impossible to predict when Joseph will need to be listed for transplantation. It may be days, months, or even years. Although these new fears and uncertainties fill our minds, Scott and I are working to keep things as normal as possible for Joe. He is just now beginning to realize his medical limitations and frequently asks us questions about his “special heart.” We are still learning how to give him honest answers without crushing his amazing spirit.

As we face these new obstacles, we have found that, ONCE AGAIN, we are NOT ALONE. We have been embraced by the prayers, thoughtful acts, and generosity of those in our work and home communities. We still question why we have been so blessed to receive this overwhelming support, but truly believe that JOEY has opened the hearts of so many. His presence resonates through the community as he exemplifies the essence of what it means to truly live. It is our hope that we will, someday, be able to “give back” to the communities that have supported us through these difficult years. This is OUR goal! We WILL make it happen!

Cardiomyopathy, diastolic dysfunction, high blood pressure, laryngomalacia, obstructive apnea, aerodigestive abnormalities, scoliosis, oral phase dysphagia, submucous cleft palate, velopharyngeal insufficiency…these are just some of the diagnoses attached to the name Joseph Middlemiss. They are NOT who HE is and he has proven this time after time. Joseph is a beautiful little boy who loves to play music and make people laugh. He can tap the beat of just about any song, memorizes song lyrics after hearing them once, and is always willing to “rock out” and perform for an audience. He may never be able to eat like others, speak like others, or play any of the sports that he loves to watch on TV, but he WILL continue to fight and remind all of us what is truly important. During his four years with us, Joseph has taught Scott and I more about LIFE than we had learned in the decades before his entrance into this world.   He has led us by example: savoring each day, each moment, each precious breath. Joseph exemplifies what it means to be ALIVE. For this, we love him and will continue to “fight the fight” right by his side.

(Commentary by Sara: The above was written by Kate when Joe was 3 ½ years old. Below is a timeline of subsequent events that she emailed to me.)

Joey had two great preschool years in an integrated classroom. The summer before his kindergarten year, he had a high fever for several days. The docs said it was viral and sent us home. On the 3rd day of a high fever, he began acting differently. I noticed he was more lethargic, very pale, and his hr and o2 dipped. Scott and I drove him into Children’s Hospital Boston. By the time we got there, he was unresponsive, freezing, but sweating profusely. He was breathing, but looked terrible. The ER filled with docs and they were able to stabilize him. He quickly bounced back. Docs that didn’t see him in those very sick moments had a hard time believing that he was so ill.

We stayed in the hospital for several nights, but he was jumping around a few hours later. He began to break out with a rash and tests showed that it was varicella (even though he had the vaccine). He bounced back quickly and did well. It was thought that it was the specific virus that caused so many issues, but the plan was to go to the ER to get metabolic labs done the next few times he had fever. They always came back fine.

His Kindergarten year was great. He got typical childhood illnesses, but dealt with them ok. He had a g-tube so we were able to keep him hydrated with Pedialyte when he was really sick, but he got over illnesses quite well. He maybe needed a slightly longer recovery time than the average child, but nothing too extreme.

After waiting for 6 years and doing just about every genetic test, Scott and I decided to try to give Joe the sibling that he had begged for forever! All the testing came back negative and it did not look like Joe’s cardiomyopathy or underlying syndrome (still unknown) was hereditary.

In July 2013, a 34-week fetal echo showed that our infant Jack also had cardiomyopathy. This was devastating, but Joe was our hope. He had done soooo well.

In August 2013, Joe had his best cardiac appt/echo in a while. Things looked like typical HCM with no obstruction. The heart had looked a bit more restrictive in the past, but was looking better now. Great EF, no obstruction…. looked like the next hurdle would be puberty.

Jack was born August 21st. He did well at first and only spent 6 days in the NICU. EF was 41 at birth, but later dipped to the 20s, causing an inpatient stay. Scott and I took turns in the hospital and staying with Joe. Joe was our strength. He was thriving, entering 1st grade, and doing sooo well.

In early September, Joe had a fever and didn’t feel well. We went to the pedi and he was treated for strep throat. He started antibiotics and bounced back.

On Friday, September 20th, he attended his beloved cousin’s 3rd birthday party and had a ball. He was jumping in a bouncy house, running around, and everything was normal. 

Early the next morning, he woke up and vomited. He only had a low grade fever, but I brought him to the pedi, because I knew it was a Saturday and we were more worried about JACK getting sick. I was also worried that the strep hadn’t totally cleared up. Everything looked great, but the fever got higher. They thought it was viral. All day Saturday and Sunday, he was pretty lethargic and didn’t want to eat too much, but we kept him hooked up to Pedialyte through his g-tube to keep him hydrated. His fevers would spike, but Tylenol and Motrin would bring them down and he’d act pretty normal. On Monday morning, he woke up really agitated. Nauseous. NO Fever. He looked paler than he had, so I took his pulse and checked his O2. Both were normal. Scott decided to stay home from work and climbed in bed with him. I was getting Jack ready for a return trip to Children’s. Less than 10 min after I took his pulse and O2, Scott was screaming. He instantly went limp in his arms. We did CPR instantly, called 911, and got the AED on him within a minute. NO rhythm… Local hospital did a conference call with his cardiologist at Children’s and tried everything….. nothing worked.

He looked like a pretty typical 6-year-old on Friday afternoon and earned his angel wings on Monday. 

 

Written By: Kate Middlemiss – Proud mother of “Joseph the Rock Star”

 

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Ellie’s Story

Today’s story is very meaningful for me. Ellie’s story reminds me so much of Lucy’s and, although I hate that Ellie’s family went through the pain of losing her, it helps me to have a friend like Ellie’s mom Jennifer, who pretty much knows exactly what I’ve been through. In fact, Jennifer and her family recently welcomed a baby girl Amelia Iris, who has a big brother still here and a big sister in Heaven just as Scarlett will. I am so honored to share the story of this precious little girl’s life.

 

Eleanor Lily Ayers was born on August 2, 2011. She was the product of a perfect pregnancy, other than giving her mother a little gestational diabetes.

By about 4 weeks of age, Eleanor’s mom had the feeling that something was just off about her. But there was nothing overtly wrong with Ellie, as her parents called her, just a mother’s intuition.

In November of 2011, Ellie started developing cold-like symptoms. She had recently started day care and the whole daycare room seemed to be sick. On Sunday, November 20, 2011, Ellie was taken to the Emergency Department for those same symptoms. After a chest XRAY, the ER attending told Ellie’s mom that Ellie’s heart looked a little enlarged to him but he “didn’t do babies”, so he was calling the pediatric residents to take a look. The residents said that they didn’t believe Ellie’s heart was enlarged, that it was the way she was turned on the X-ray. They gave Ellie’s mom a prescription for a nebulizer, advised that Ellie would continue to cough for about 3 weeks, and told Ellie’s mom to follow up with her pediatrician before Thanksgiving. A follow up appointment was scheduled and the pediatrician advised to continue with the recommended course of treatment. Everything pointed to a cold.

On December 6, 2011, Ellie was scheduled to have her 4 month well baby visit with her pediatrician. That morning, her mother’s only concern was whether or not they would be administering her vaccines due to her continuing cold symptoms…. By the end of the day, the worry would change to whether her daughter would survive the night.

During Ellie’s exam, Ellie’s mom discussed those nagging feelings that she had that something was just not right with Ellie. Ellie had stopped trying to roll over, she had stopped making noises she had been making a few weeks before, and she sounded raspy and grunty unlike “normal” baby cooing. Ellie’s pediatrician began her exam and immediately heard a very pronounced heart murmur. She asked if Ellie had been sweating with feeds or turning blue around her lips. She had not been, but she had never been a great nurser. Ellie’s pediatrician stated that sometimes a murmur can be innocent or signify something more, so she wanted Ellie to have an echocardiogram. She left to make the referral and Ellie’s mom attempted to nurse Ellie while they waited. While nursing Ellie in the office, Ellie started sweating and her lips DID turn blue. Her pediatrician was able to get Ellie in for an echo immediately with instructions to take Ellie up to the Pediatric ward of the hospital so that her oxygen levels could be monitored overnight. Ellie’s mom called Ellie’s dad and met him over at the hospital. The woman doing the echocardiogram on Ellie has the best poker face EVER. She was looking at a train wreck and never let on.

Ellie’s parents arrived in the pediatric ward and still were getting settled in, not realizing the nightmare that awaited them. They called Ellie’s grandparents to let them know to pick her big brother up at school. Pretty soon a nurse came into the room, stated that the Cardiologist had read the echo, and they were arranging transport to Penn State Milton S. Hershey Children’s Hospital. The closest children’s hospital was an hour away, but Ellie was being sent to a different children’s hospital, because the pediatric cardiology department there was “in flux.” Around 6:30 that night, a helicopter arrived to fly Ellie to Hershey. Fortunately, Life Lion transport does allow parents to fly if the pilot approves, so Ellie’s mom rode along with Ellie while her father made the 2 and ½ hour drive by car. Arrangements were made for Ellie’s brother Malcolm to stay with his grandparents, while his parents stayed with his sister in Hershey.

When Ellie got to Hershey, she was first examined by a Pediatric Cardiology Fellow. When Ellie’s mom asked her what the worst case scenario was, the reply back was “transplant.” There was some confusion when Ellie arrived, because the doctors there could not believe how good she looked in comparison to what the echocardiogram on the disc that was sent with her revealed. There was even some discussion that perhaps the wrong disc was sent with her. One of the numbers that becomes so important to a parent whose child has cardiomyopathy is called an Ejection Fraction (EF). The EF measures the volume fraction of blood that is pumped out of the ventricle in the heart, what percentage of blood is ejected. A normal EF range is anywhere from 55 – 75%. Ellie’s EF was 8%. Ellie was admitted to the PICU and a course of treatments was begun to help ease the function on her heart. Her parents were told she had dilated cardiomyopathy.

At the time of diagnosis, the doctors were not sure what caused the cardiomyopathy. We were told it could be a viral cause or a genetic cause. While she did have some tests come back positive for viruses, the viruses that she had were not known to cause cardiomyopathy. There was no family history of heart disease. Ellie’s parents opted to have genetic testing done to see if there was a genetic cause for her disease, knowing that no matter the cause the course of treatment would remain the same. Her parents were also told the 1/3 ratios for pediatric dilated cardiomyopathy: 1/3 of kids improve, 1/3 of kids stay the same but stable with medication, and 1/3 of kids deteriorate (needing a transplant or dying). There was no point at which you would know which third Ellie would fall into.

Ellie spent two weeks in PICU. She responded well to the medication that she was being given. Her heart by this point had enlarged to the size of an adult’s heart. It had grown so large it collapsed her left lung. There had been some talk of transferring her to Children’s Hospital of Pittsburgh, but she was improving on medication so it was deemed not necessary.

On December 23, 2011, on her father’s 46th birthday, Ellie was discharged to come home. Her parents were thrilled to have her home for Christmas and their family reunited. Each Wednesday, her parents took her to her cardiology appointments at the outpatient clinic located two hours away from their home. Ellie’s EF improved to about 15% from the original 8%.

Ellie continued to be stable. In January 2012, she was fitted with a NJ tube to aid in supplementing her nutrition, because she still was not a great eater. She started refusing to nurse altogether while in the hospital. Towards the tail end of February, Ellie caught RSV, which led to pneumonia, but she still remained at home, stable.

In April, her stability ended. She was hospitalized to adjust medication April 11-15th. On April 20, 2012, her home nurse noticed that she had a funny, but fleeting, episode. To this day, Ellie’s mother doesn’t know what exactly it was that triggered her home nurse’s concern, because by the time Ellie’s father called to tell her they were in the emergency room and they were sending Ellie back to Hershey, Ellie seemingly was fine. Ellie’s mom could hear her chattering away in the background. This time Ellie’s dad flew with her to Hershey, while her mom watched the helicopter fly off from her office’s parking lot. When Ellie arrived at Hershey, the joke of the staff was that she was just as fine as the day that she had been discharged just a few days prior and that all she wanted was a helicopter ride to come and see her favorite nurses and doctors.

By the next day, Ellie had another episode and was deemed not fine. The same cardiology fellow that had seen Ellie on her first trip to Hershey in December now was telling her parents that transplant was her best course of treatment. Hershey was able to stabilize Ellie again, so much so that the decision was made NOT to do a hospital to hospital transport to Children’s Hospital of Pittsburgh for the transplant evaluation. Discharge was tentatively scheduled for either April 25 or 26th. Ellie’s mom was given the number for the transplant team and had been told to call them back when she was being discharged, so that they could get Ellie in for an evaluation within 72 hours of discharge. Ellie never made it to discharge.

The night of the 24th, Ellie’s parents left her around 10:30 PM to go to the Ronald McDonald house to sleep, anticipating they would go home the next day. Ellie was doing really well; she was wide awake. It was the first time her parents left the hospital without her falling asleep first. It was the last time they would see her conscious. At 2:30 AM, they were awoken by a telephone call from the hospital. Ellie was being transferred back to the PICU and both of them were instructed to come right away. By the time they got to the hospital, CPR was already being performed on Ellie. They met her nurse in the hallway. There were tears in her eyes. Ellie’s heart rate just started dropping and when the nurse went in to check her, she was unresponsive. CPR was performed on Ellie for what seemed like an eternity. Ellie was not responding. Ellie’s parents were given the choice to place her on ECMO and send her to Pittsburgh, but were told there was no guarantee that she wasn’t already severely brain damaged. Ellie’s parents made the decision to stop treatment and let her continue her journey back home to God. They were able to hold her and rock her until she passed away peacefully in her father’s arms.

Ellie’s parents have started Ellie’s Heart Foundation (www.elliesheartfoundation.org) as a way to honor their daughter, and give back to the Pediatric Cardiologists who treated her.

 

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Ellie and big brother Malcolm

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Yuli’s Story

Yuleisis (Yuli) is a 12-year-old girl from Panama. She is the 6th of 7 children and was diagnosed in 2012 with atrial septal defect (ASD). Earlier this month, she traveled to Austin through the HeartGift program to have her heart repaired.

I learned about Yuli and HeartGift through Dr. Karen Wright, Lucy’s cardiologist. Dr. Wright is on the board of HeartGift and sees all the patients. She put me in touch with Jennifer Edwards, the executive director of the Austin chapter. I recently spoke with Jennifer on the phone and she gave me an overview and history of this lifesaving program.

HeartGift started in 2000 in Austin. There are five chapters in different cities. They bring twelve patients a year in from countries where proper treatment or surgery for their conditions aren’t available. HeartGift provides housing, translation, and transportation and works with wonderful volunteers who sometimes travel with the patients and provide housing in Austin.

Jennifer provides updates via email to all the friends of HeartGift. The stories are truly inspiring. The children come from countries such as Mongolia, Liberia, and Belize. They take children who are 13 and younger; most of the patients are toddlers. The recipients of HeartGift have to have conditions that can be repaired in one surgery that won’t require follow-up care, since proper follow-up care is not available in their countries. Most of the beneficiaries of this program have congenital heart defects. Twenty percent of the patients can be treated in the cath lab, but most require open-heart surgery.

Jennifer says she is amazed by the mothers she meets through this program. They are all “tenacious” women who refused to give up until they found help for their children, no matter how hopeless the situation seemed.

At the time I spoke to Jennifer a few weeks ago, HeartGift Austin was already welcoming their third patient of the year. One of the 2014 recipients was actually the 200th recipient of a HeartGift! Courtney, a 2-year-old girl from Belize, received her life-saving procedure right before Yuli arrived in Austin.

It was originally thought that Yuli could be treated in the cath lab, but upon examination, Dr. Wright deemed her condition better treated by open-heart surgery. She received her surgery at Dell Children’s Medical Center on Feb. 6. She did so well that she was out of the hospital and home with her mom and host family by the following Sunday.

Yuli is doing very well and scheduled to return home to Panama on Feb. 25. I am so honored to share her story in her own words in her native language. Her account does not include much detail about her actual illness and treatment, but, as Jennifer put it, it is “the honest perspective of a 12-year-old girl”. Thank you so much to Karen Wright for putting me in touch with Jennifer, Jennifer Edwards for sharing the program with me, and Yuli for sharing her story.

 

Hi, my name is Yuleisis Pino. I am 12-years-old and was born on 30 April 2001 in Panama. I have always loved to study, play, and dance. My favorite school subject is math and my favorite sport to play is volleyball. I love to dance “Bachata” & “Reggae”. I especially love to go swimming in the river near my house. I have six brothers and sisters. In 2010, I was able to visit the famous bridge called “Bridge of the Americas” in Panama City. One other place that I was able to visit is called the “Cinta Costera”, which is a special part of the city near the water where there are lots of fun activities and things to do and see. In 2012, I was diagnosed with heart problems. Thanks to such foundations as “Obsequio de Vida of Panama” and “HeartGift of Austin” who gave me the chance to come to the United States to get the needed surgery to fix my heart defect. I also give thanks to the family that allowed us (me and my mother) to stay with them while here in the United States. I am very happy right now!

Yuleisis Pino R.

 

Hola: mi nombre es Yuleisis Pino. Tengo 12 anos nací el 30 de abril 2001 y vengo de Panamá. A mi siempre desde pequeño me a gustado: estudiar, jugar y bailar. Mi matera favorita es matemático. Mi juego preferido es boliball y me gusta bailar bachata y reggae. Me gusta ir al rio. Tengo 6 hermanos. En el 2001 fui al conocer el puente de las america y la cinta costera fue genial. En el 2012 me diagnosticaron una problema en el corazón. Le doy gracias a dios a los fundaciones obsequio de vida y HeartGift que me dieron la oportunidad de llegar a Austin para obtener la cirugía del corazón y también doy gracias a esta familia que me hospido. Ahora soy muy feliz.

Yuleisis Pino R.

 

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Yuli’s handwritten story

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Dr. Karen Wright checking Yuli’s heart

 

 

Jordan’s Story

Today, fellow Heart Mom and blogger, Tove Maren Stakkestad shares the story of her son Jordan. Tove’s blog is called “Mama in the Now”. She writes about her adventures with attachment parenting, breastfeeding, and co-sleeping there. She is the mother of four boys. (Jordan is her second child. Baby Jonah was born January 20.) Tove is also sharing stories for Heart Month. In fact, I got the idea from her and she generously agreed to share. Her blog is wonderful and I highly encourage checking it out: www.mamainthenow.com. Here is the link to the original entry of Jordan’s story on Tove’s blog: http://mamainthenow.com/2013/10/breastfeeding-jordan/.

 

2008 was a tumultuous year for many. The stock market and real estate market tumbled. Aggregating all the financial losses sustained worldwide would never come close to the great loss our family suffered. We lost my granddad and dad unexpectedly within 6 weeks of each other. However, we saw light at the end of the tunnel – baby Jordan was due in late November 2008. His arrival would mark the turning of the bad luck tide for our family. Everyone put a lot of hope in his birth. We needed the breath of fresh air that only a new baby can provide.

Jordan Douglas was born on November 24th at a healthy 9 lbs 7 oz. He was beautiful, calm, sweet, and nursed like a champ. We were discharged on Thanksgiving morning, which was just another sign that our bundle of joy was the complete package of hope and new beginnings. On day two of our happy homecoming Jordan felt a little too warm for comfort. Our baby had a fever, a low-grade one, but a fever nonetheless. I quickly learned that infants with fevers earn a direct trip to the Pediatric ER.  One lumbar puncture later we were faced with the first doctor/ parent meeting of many to come. Jordan was apparently very sick and immediately admitted to the local Pediatric ICU (“PICU”). He was there for eight long days with Mama at his bedside, while Dada was at home taking care of big brother Jacob.

Jordan was hooked up to monitors 24/7, but that did not stop us from nursing and cuddling. The nurses quickly learned that the beeping alarms in Jordan’s room were not alerting them of a medical emergency, but rather of an intimate bonding and nursing session. Ever so patiently they would rush into our room to reattach Jordan’s monitor leads, help us get comfortable in the chair and stand back to admire the sight of a worried mother calming her sick child. After yet another lumbar puncture the doctors deemed that his infection was under control and was no longer a threat to his life, so a second hospital discharge was in our future.

We were thrilled to once again have our little family reunited. Life moved in slow motion as we adjusted to being a four-member family. But even this quiet bliss would come to a halt two days later, when Jordan stopped nursing at 9:00pm and refused to nurse for the rest of the night. The morning of December 5th Jordan went back to the Pediatrician’s office so he could listen to his lungs. Jordan had started breathing slightly labored over the past day, and in my hormonal postnatal fog I thought that he might have caught an upper-respiratory bug at the hospital. The Pediatrician took one glance at him, had the nurse call 911 and grabbed a tank of oxygen in his storage room. We were rushed by ambulance back to the local hospital where they put him on a respirator. An x-ray revealed that his heart was enlarged, which was more critical and complex than they felt comfortable treating there. We were airlifted to a university hospital an hour away later that evening. I flew with Jordan in the helicopter, while Dada raced down I-95 with my breast pump and suitcase packed for an undetermined amount of time.

A crystal ball at that crucial time would have revealed that we would spend the next six weeks in the PICU. We would struggle through Christmas, New Year’s Eve and two birthday celebrations confined to a small 10’x12’ PICU room. I moved into the Ronald McDonald house on campus, but sat bedside by Jordan all day and most nights. Dada and Jacob held down the home front and came down to visit us every chance they got. Jordan was on the roller coaster ride of his life, some days he was cruising along only to be caught off guard by a huge dip in the track. There were days and nights when the nurses and doctors cautiously celebrated his small victories, but reminded us that our little boy was very sick. Jordan’s chart grew thicker and he was the main topic of conversation at the weekly PICU conferences, but for each passing day he was loved more and never left alone in the hospital.

I pumped breast milk every 3-4 hours around the clock. The doctors emphasized the importance of Jordan receiving breast milk in his feeding tube. Every person new to the case reminded me that I had to take care of myself so the stress of the situation would not adversely affect my milk supply. A few of the nurses expressed their doubts that Jordan would ever be able to nurse again after being intubated for so long. I was determined to play an active role in his healing, so I turned a deaf ear to any negative comments – and kept pumping as if my son’s life depended on it – because it did!

The moment Jordan came off the respirator he started to cry, a sad horse sound emerged from his throat. He was inconsolable, getting all his built up emotions out in one good cry. I asked the nurses if I could give him a pacifier. They told me that he might not take it, because being on the ventilator may have affected his sucking reflex. Anxious to comfort my child I gave him a pacifier, and he took it! He kept it in his mouth and stopped crying immediately. It was a moment of great mommy intuition success for me. Next step towards recovery and discharge was for Jordan to successfully feed, either by bottle or at the breast. He made it clear to everyone that he had no interest in the bottle. The nurses were apprehensive about allowing him to nurse before he had proven that his swallowing reflexes had not been damaged. In other words, he had to take a bottle before he could be allowed to nurse. After a heart to heart conversation with his cardiologist, I was given permission to try to nurse Jordan, but not in a private intimate setting.

Jordan’s nursing performance would be witnessed by several nurses, a cardiologist, a speech therapist, respiratory therapists and a lactation consultant. Mothers are exceptional beings. We can grow life and feed our young without taking our own comfort (or need for modesty) into consideration. I vividly remember sitting down in the big hospital issued recliner, having the nurses place pillows under my elbows and in my lap, gently laying him in my arms and quietly aiming him towards my right breast. He turned his head, looked up at me for a brief moment – before he latched on! He nursed for the first time in over a month as if, our nursing relationship had never been interrupted by his fight to live.

Healing prayers from around the globe spanning across every religion were sent to Jordan. Congregations in churches and temples gathered and prayed for him. Friends and family mentioned his name in their prayers at night – and throughout the day for added effect. I specifically recall at least five occasions where I begged Jordan to hang in there, promising him that life would be beautiful and special if he could only pull through that night. He proved to be a fighter and in the end a winner.

Jordan had his third and final hospital homecoming a few days before his two-month birthday.  He was discharged on a medication schedule that gave me a pharmaceutical crash course. Jordan required four hours of infusions daily for six weeks, weekly infusions for six months and daily medications seven times around the clock. His social calendar included ten different specialists, most of them located at the university hospital. Jordan and I spent countless hours in doctors’ offices, which we turned into special Mama and Jordan nursing and play time.

Our family learned that “knowledge is power”; we followed instructions, prescriptions and recommendations. We learned medical terms and conditions and we made life-long friends throughout the heart community. We embraced our life and adjusted to “the new normal”. Jordan and I got caught up on all our missed opportunities to cuddle and bond. We went on to nurse successfully for another 22 months!

Days turned into weeks, weeks turned into months, and now we find ourselves almost five years out from Jordan’s diagnosis. Jordan is a thriving, fun-loving and charming preschooler. He has no deficits and he adores his brothers, Mama and Dada. The world did NOT come to a screeching halt the day Jordan got sick, life did not become less enjoyable after his diagnosis, on the contrary we are now a stronger family than before. Our three (soon to be four) boys are learning to live life to its fullest, and we are all finding HAPPINESS in even the smallest and simplest things! We “heart” happiness!

 

 

Emma’s Story

Emma is a darling, three-year-old girl living in The Netherlands. She was born with multiple heart defects, as well as dilated cardiomyopathy, the same form of cardiomyopathy that Lucy had. Thankfully, Emma is doing well and her mom Saskia has agreed to share their story.

It already begins in my pregnancy. In The Netherlands, it is common to do prenatal screening. My sister and I were both pregnant and she did the screening and I saw no reason why we shouldn’t. The prenatal screening is mainly to determine what the chance is that the baby has Down syndrome. I would have never terminated our pregnancy, but if the baby would have Down syndrome, I would like to be prepared and know all about it and what to expect.

So, my sister had a 1 in 4000 chance of having a baby with Down syndrome. So, I guessed we would be fine as well. We did the test and the baby had large nuchal translucency (4mm) and we had 1 out of 13 chance of having a baby with Down syndrome. Well, 13 is our lucky number, so I wasn’t scared by that.

Since we had abnormal result, we were entitled to having multiple extra fetal Echos done. They did see at the Echo and it seemed like the right ventricle was a little larger than the left one, but not much to worry about. We had some more Echos done and the pediatric cardiologist also saw the fetal Echo and we pre-arranged a meeting after Emma was born to do another Echo, just to be sure.

Since the baby was breech, we already set up to go for c-section. Since I almost had eclampsia and I had really high blood pressure and heart rate (120 while resting), the c-section was scheduled a week sooner.

Emma was born!

I was just back from the operating room and holding Emma for the first time, trying to get her to breastfeed for the first time. After 15 minutes they came and told us Emma had to go down to cardiology for Echo.

We learned that Emma had an ASD (atrial septal defect) and PDA (Patent ductus arteriosus. Her ductus wasn’t closed.)  Later that day, doctors came to see us and they suspected Emma of having some kind of syndrome. They didn’t tell us anything then of what they suspected.  When Emma was 4 days old, they did another Echo and her ductus still wasn’t closed (or the ASD), but could be normal. They would do checkup after 7 weeks and it wasn’t really much to worry about.

When Emma was 7 weeks old, we had two appointments at the hospital, one with cardiology and the other one was with genetics. We weren’t all that worried about cardiology, cause that would be fine, but we were so anxious about the genetics. They left us in the blind before and we were worried she might have Turner Syndrome or some other Syndrome we found at Google.

Well, the genetics appointment went fine. They suspected Emma with Noonan Syndrome, but they had to do some testing first. Then we went to cardiology. After the Echo, the cardiologist came to see us and told us the PDA was closed and her ASD.. I don’t even remember.. I think it was also closed. It was then when she told us Emma’s heart was ill and she had to be admitted.  We only had to return a week later and they said on forehand it would take just 3-5 days to get Emma going on meds. We didn’t even realize how serious her condition was then.

So, we told all relatives and friends Emma had to be admitted for a few days, had to get started on some meds, and that her heart would be fine.

Well, at the hospital a week later some trainee had to tell us Emma had a life-threatening illness. It wasn’t easy getting Emma on meds and they had to monitor her blood pressure and blood work very close. Emma’s ProBnP levels weren’t coming down. They were so high, that they couldn’t even tell how high it was. It was more than 35.000!

Eventually, after 3 weeks we got to take Emma home, with a bag with medicine and return appointments every 2 weeks. We still didn’t know much about her disease then. It wasn’t until later that I had read her file and read the words “Dilated Cardiomyopathy”. The words in Dutch are even harder and we had to write this one down to even remember what it’s called. So, we searched Google and read everything you don’t want to know, but now we do know what her heart disease is called and what is going on inside of her.

When Emma was diagnosed, her EF (Ejection Fraction) was only 15% and a year after diagnosis her heart didn’t improve much. We started Emma on supplements, since we read some good things about it. We didn’t expect much of it, but wouldn’t harm her, so worth the try. A year later Emma’s EF was improving! Last Echo, her function was 53%!! Her left ventricle is still dilated and she still has severe DCM, so the cardiologist says.

Emma never really had any major symptoms that would be warning sign for us. When we look back, we know she was sweating a lot while drinking a bottle and would fall asleep halfway and after 10 minutes finish the rest of the bottle. There are lots of babies that fall asleep while drinking a bottle. Emma was our firstborn, how could we know something worse was going on?

Emma is now a happy and very smart little 3-year-old! We still continue the supplements and soon have another checkup at cardiology. These appointments are always stressful. This disease is so unpredictable. We still live from appointment to appointment. Although her function is improved, Emma still has a sick heart.

 

 

The Most Important Anniversary Yet

Six years ago today, my husband and I were married. This anniversary means the most to me of any yet. Those who don’t know us might wonder why the sixth anniversary would be so special. Those of you who do know us can probably guess.

It’s not because of this particular anniversary, but because of what we have endured since the last one. We have weathered stressors that often tear marriages apart. During this past year, we feared for our daughter’s life almost every day until the day those fears came true. We buried her and mourned another life just a few months later. We did our best to help our son through his grief while trying to handle our own.

There were times this past year where I truly feared for my marriage. Sometimes everything just seemed impossibly hard and I wanted to give up. I feared that bad things would keep happening and we wouldn’t be able to take it anymore.

I’m not foolish enough to think that our marriage is permanently safeguarded because we just made it through the hardest year of our lives together. But I have more faith in us than ever.

Only six years in, we have truly tested, “For better, for worse, in sickness and in health”. We have lived those words and we are still here, truly committed to each other. We are sure of our love for each other and that we can count on each other.

Even if more bad things happen, I know we can handle it. I have been forcibly reminded of the reason I got into this whole marriage business in the first place. It wasn’t just because I wanted to have kids. It’s because I wanted a real love and a real relationship. It was because we had the beginnings of a real love six years ago and I wanted to take on the challenge of nurturing and strengthening it. When challenges come now, I remember that I still have him and this love is what begat everything else, both the challenges and the blessings.  He is not my adversary, but my strength. We are a team.

I like to look back and remember that lovely day six years ago. However, this day has become a celebration of where we are now, not the ceremony that officially began it all.

We have built a home, celebrated weddings and births, and mourned deaths. We have created four lives, one which we ended up seeing through to its end and another that has yet to begin. Through moves, job changes, postpartum depression, toddler tantrums, sleepless nights, and health crises, we have always come back together. No matter what, no matter how badly we fight, we always come back together. We both want this marriage, this love, and this life more than ever. That’s why I feel we will be okay. We both want this more than we want to be right or to win. We may forget that sometimes, but we always remember and come back together.  

I am surer than ever that Chris is my love and the person with whom I want to spend the rest of my life. Happy anniversary, honey. Here’s to the next year.

Leah’s Story

Today’s Heart Month story is special to me. I have come to know Katie Parker, Leah’s mom, over the past year. The transplant team at Children’s Medical Center of Dallas gave me her contact information. I wanted to talk to another parent who had been through transplant, so I could get an idea of what it would REALLY be like.

Katie shared her experiences with me via email and also told me about her blog: http://parkerlife04.blogspot.com/. She and her husband Ross both contribute to it and it gives a very complete account of their life before, during, and after transplant. She did not gloss over the challenges, but it was immensely encouraging to me. I highly encourage you to check out her blog. The Parkers are just an amazing family and their story is highly inspirational.

Katie is a stay-at-home mom. Leah’s dad Ross recently received his doctorate. (Congratulations!) Leah has two (soon-to-be three) siblings. Leah is 6 and is now about 2 ½ years post-transplant. She is doing beautifully. Jacob is 4, Owen is 2, and baby Elinor should be arriving by the end of February!

Katie was a supportive friend to me when Lucy died and we empathized with each other when we both suffered pregnancy losses last summer. I am so happy for the entire family that Leah is doing well and that they will be joyfully welcoming a new baby in a few weeks. Leah is very excited to have a baby sister. J

Leah was born with left ventricular non-compaction cardiomyopathy (LVNC), which is another form of the disease Lucy had. Hers is also the first transplant survivor story I have gotten to share. I am so happy to have the chance to raise awareness of transplant and its blessings and challenges. (Contrary to popular belief, it is NOT a cure.) After reading so much about her and her family’s journey on their blog, it was hard for me to figure out how to encapsulate it in one blog post. After rereading posts this morning, I decided to copy and paste Katie’s summary of Leah’s condition from her blog. It was written before Leah’s successful transplant. After Katie’s summary, I will do my best to write a summary of Leah’s transplant and life now. So, this post is more of a collaboration. Without further ado, here is the story of sweet, strong Leah Grace.

We found out early on in Leah’s life that she has a serious heart condition called Left Ventricular Non-Compaction/Cardiomyopathy. Because of her condition, her left ventricle is very hard, which means that the rest of her heart has to work really hard to pump blood to her body. For the first two years of her life, Leah’s heart doctor monitored her condition closely and we waited to see what would happen. Since her condition was discovered, her left atrium has slowly grown, and it has now grown to be 3 times the size that it should be; there is a lot of pressure in there because it is pumping into a left ventricle that is very hard. In addition to her enlarged left atrium, her condition is also causing serious pressure buildup in the rest of her heart and pressure has backed up into her lungs.

Back in February of 2010, we took Leah to Children’s Medical Center in Dallas; we were told that their heart center was one of the top pediatric centers in the state. The cardiologist we saw was concerned with the pressures he saw in Leah’s heart via the echocardiogram (ultrasound) and Leah was admitted into the hospital that weekend for further tests. On the following Monday (2/21/2010), doctors did a heart catheterization and decided that the pressures in Leah’s heart were elevated to the point that she is in need of a life-saving heart transplant. She was sent home from the hospital at the first of March as a “Status 1b” transplant patient, because her heart condition was causing her to not gain weight or as they put it “failing to thrive”.

Since March 2010, we have been waiting for a heart. As you can imagine, there’s a lot of information that we have had to process about what is involved in a heart transplant, which I won’t go into detail about here. However, I do want to give some specifics about our day-to-day life while we’re waiting for the transplant, so that you can know how to better pray for us.

The biggest practical aspect of our wait is that the surgery needs to take place as soon as possible after a heart becomes available. We have a beeper that can go off at any time, and when the call comes, we will head to Dallas for the surgery. This also means that we have to stay within two hours of Dallas (thankfully, we live less than two hours away from Dallas or we would have to temporarily move).

Another practical part of our day-to-day life is that we have to be diligent in keeping Leah healthy. We must do this for two reasons. The first reason we have to be so careful is that many kinds of sickness are such that if she has them when a heart becomes available, she won’t be able to have the transplant, since during the transplant she will be given medication to shut down her immune system, so that her body won’t reject the new heart. The second reason is because her heart has to work so hard right now, she has a more difficult time getting over sickness than most kids.

Another big part of our day is medicine! Leah is on several medicines right now – she has two for her heart, one of which she has to take every 6 hours (including 1:00 am).

Thankfully, Leah’s weight has improved since coming home from the hospital in March of 2010. She initially had an NG tube and was on an appetite-enhancing medicine, but we were able to take the NG tube out in May, yet are still on the appetite medicine. Because she is still having a hard time gaining and maintaining her weight, she continues to be a “Status 1b” transplant patient. There is no way to know how long our wait is going to be, but with her being on the 1b list and with almost a year of time accrued, I think it is safe to say that 2011 will most likely hold lots of time spent in the hospital. (Our doctor said that most of the status 1b kids have to wait between 9 months to a year and a half). We’re so glad that Leah’s doing well, but the scary part is that her heart condition is so fragile that she could take a turn for the worst overnight. We do our best to not worry, instead being thankful to God for each good day.

Leah was going in for check-ups and ultrasounds on her heart every two weeks, but her recent “stability” only requires her to go to Dallas on a monthly basis. The transplant team is pleased with how well Leah’s heart is doing – it is functioning very well in light of her condition. So right now it’s a waiting game. It’s likely that we’ll still be waiting for some time, but it’s possible that it will be tomorrow.

We covet your prayers as we wait for Leah’s transplant. As big of a deal as the transplant will be, it will be the beginning of a life-long process for Leah of living with a transplanted organ. For the rest of her life, Leah will be on medication that will enable her body to accept her new transplanted heart. Additionally, the rest of her life will include yearly heart biopsies. We believe that if the Lord chooses, he can heal Leah’s heart completely, and this is what we’re praying for. But if God chooses to allow us to go through this, we are praying for strength for all of us, especially our sweet little girl.

Katie wrote that before Leah’s successful transplant on Sept. 8, 2011. Leah’s transplant went very well and there were no serious post-transplant complications. Post-transplant, Leah, Katie, and Jacob remained in Dallas for about 2 ½ months while the doctors at Children’s continued to monitor Leah’s progress. Leah’s rejection never went above 1R and was sometimes down to 0 (1R means that the body knows something is in there that shouldn’t be, but the medications are doing their job and preventing the immune system from damaging the new heart.)

This is what the first weeks post-transplant look like, according to the blog:

 “It looks like Leah will be released from the hospital on 14 medicines! The most important of these is her anti-rejection medicines, which she will be on (at some amount) for the rest of her life. The anti-rejection medicines are immunosuppressants. She is currently on Prograf and Cellcept, and in layman’s terms these medicines lower her immune system so that her immune system doesn’t attack the new heart. Leah will be on high doses of these medicines for the next 2-3 months, so during this time she is very susceptible to infections. Because of this, she will be home-bound and will have limited contact with other folks. We tried to keep her from getting sick while she was waiting on her new heart, but we’ll have to be even more careful for the next couple of months. That’s why she was wearing her mask today when she was out on her walk. The team recommends that Leah not be around other children during this time, because (no offense kids) they are more prone to pick up germs and spread them 🙂 I’ll be going to school/work, and then coming straight home. So our social life will be a bit limited during this time.

During these first 2-3 months, Leah will also be coming in for visits with the transplant team 2 times a week. One visit will be for blood work, and at the other she will be seen by one of the transplant docs. Every other week, Leah will be having a heart catheterization and biopsy  to check and see how her heart is doing.”

One month post-op, this is what Katie wrote about Leah’s daily regimen:

 “Leah takes 15 different medicines a day, at 6 different times throughout a 24 hour period, and she takes a total of 99 ml of medicine a day not counting 3 of the medicines that are in pill form that I did not add into this count. This is about 20 teaspoons of liquid a day.”

The dosage, amount, and types of medications can vary during a transplant patient’s life, according to their condition. But they need to take anti-rejection meds and carefully guard against illness for the rest of their lives.

I have even more admiration for Katie when I remember that she was pregnant during Leah’s transplant and the aftermath. Little Owen was born four months after Leah’s transplant. Luckily, they were home in Waco by then. I don’t know how she managed living in one room at the Ronald McDonald House with Leah, who was also recovering from transplant, and two-year-old Jacob, while she was also very pregnant. She is an incredibly strong woman.

To learn more about pediatric cardiomyopathy, please visit: www.childrenscardiomyopathy.org.

To learn more about organ transplantation, please visit: http://www.unos.org/.

 

 Keepin' up with the Parker Family

Marissa’s Story

I emailed Lucy’s cardiologist to see if she could help me find more stories to share for Heart Month. She put me in touch with Marissa, the inspiring young woman whose story I share today. Marissa was born with multiple CHDs and her story is truly an example of triumphing in the face of adversity. Hers is the first story I have shared that is in the heart warrior’s own words. I have modified it very little and those modifications were grammatical and structural. Marissa, thank you so much for sharing your story.
My name is Marissa, I’m 17, and I live in New Jersey.
Seventeen and a half years ago, I was born with six Congenital Heart Defects: Pulmonary Atresia, Ventricular Septal Defect, Ventricular Inversion, Dextracardia, Congenitally Corrected Transposition of the Great Arteries, and Bilateral Superior Vena Cavas. Within hours of my birth, I was rushed by an ambulance to a different hospital, to prepare for my first open heart surgery. When I was three days old, I underwent a BT Shunt. Then, when I was 8 months old, I had a Hemi-Fontan. Finally, a Fontan completion was done when I was 22 months old.
Growing up, I had always been a very active child. I played soccer, softball, danced, and I was a cheerleader. Although I was involved in many activities, soccer had always been my passion; I dreamed of following my grandfather’s footsteps by playing in the World Cup and Olympics.  Some of my best friends were on my soccer team and I envisioned playing high school soccer with all of them. However, when I was approaching Middle School, I noticed it was becoming harder to play my favorite position, center midfielder. Running back and forth from one side of the field to the other never really bothered me in the past, but I started noticing that I would be breathing heavier, I would have less energy, and I would be very tired. So, I went to the cardiologist to have my first stress test. I rode on the stationary bike for 10 minutes, and afterwards, my cardiologist told me that I had to stop playing soccer. This was a life-changing experience for me, considering I wanted my future to be all about soccer. To overcome this, I needed to find something else that I was passionate towards and middle school is where I began my journey of finding my niche.
In 6th grade, I joined the school’s chorus and show choir (theater department). I originally used the after school rehearsals as a replacement for my soccer practices that I had always attended. I didn’t really fall in love with the whole acting, singing, and dancing thing until 7th grade. My chorus teacher was a role model to me; to this day, she has had a strong influence on a lot of the things I do. In 8th grade, I started taking piano lessons with her. Piano is something I love; I love being able to take a piece of music and add my own feelings and emotions to the overall piece. My teacher not only taught me how to play piano, but she also taught me how to accept myself the way I am; I’ve learned how to be the bigger person and how to appreciate the good things in life.
Overall, throughout middle school, music became very important to me. Not only has it given me an escape from reality, but I have had the opportunity to meet new people from the opposite spectrum of our school. Before I was in chorus, I was mainly friends with the soccer girls. Now, I have strong friendships with both the soccer girls and chorus and theater members. I cherish these relationships; sometimes, it’s crazy to think that I never would’ve been friends with them if I hadn’t joined chorus after quitting soccer.
In high school, I was introduced to a new hobby that I have grown to love and cherish – volunteering. Volunteering is a commitment that many high schoolers try to stay away from. Sure, some schools have a volunteer hour requirement in order to graduate, but I started volunteering in my first month of high school. I joined the local Big Brothers/Big Sisters program with two of my other friends and since then, it has become something that I am extremely devoted to. I love mentoring young children, especially the one whom I am assigned to (my “little”). I was named Big Sister of the Year for three surrounding NJ counties for the 2010-2011 school year. If I could, I would love to stay with this same program throughout college. Along with Big Brothers/Big Sisters, I volunteer with the American Red Cross, the Middle School, and the Kindergarten Soccer Clinics that are run by the mayor in my town. I’ve volunteered at the Cathedral Soup Kitchen in Camden, NJ, and I’ve spent countless hours returning to the Middle School show choir to assist in their fall and spring concerts and productions. I believe volunteering is so important to me because I know what it is like to be at a disadvantage. I want to help people who are not living their ideas of a perfect life. I know what it’s like to be different, so I strive to help the homeless by volunteering at a soup kitchen and I strive to help less fortunate children by remaining committed to Big Brothers/Big Sisters.
Along with all of my volunteer hours, I take part in many school activities. I am a part of our school’s Student Government, National Honor Society, and I am a soccer manager for the boys’ varsity team. Although I cannot play soccer, I am still a part of a team by managing. I graduate high school in just over 4 months, but my commitment to volunteering will definitely travel with me to college.
I have already been accepted to my top choice college, The College of New Jersey, as a nursing major. I’ve always dreamed of becoming either a Neonatal Intensive Care Unit nurse practitioner or a Cardiac Care Unit nurse at a well known hospital, such as CHOP.  Hopefully, I will have the opportunity to volunteer at CHOP over the summer; I would love to be able to talk to families of children who are suffering from heart defects.
I have always been interested in meeting others who are like me. None of my friends understand exactly what I have been through, but remaining connected to several “Congenital Heart Defects Awareness” Facebook pages have given me the opportunity to learn about others going through the same things as I have. Even talking to parents who have babies suffering from a CHD is always an enlightening experience, for both the parents and myself.
I believe that I have turned my life with CHD into a positive one; I love having friends who play soccer, and friends who perform on stage. Being born with a congenital heart defect isn’t necessarily a bad thing; I have become a stronger, more adaptable person. If you or your child is affected by a CHD, always remember to look at the bright side of your situation, because everything happens for a reason and maybe you were meant to have the limitations that you do.
Stay strong, heart family! ❤ Happy Congenital Heart Defects Awareness Week! ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤
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Letter to Lucy on your Second Birthday

Dear Lucy,

Today would have been your 2nd birthday. We planned to release red, heart-shaped balloons, since you are our Valentine baby, and to eat cupcakes.

During the last week or so, I was pleasantly surprised to find myself looking forward to celebrating your birthday. It seemed like it would be fun. The actual celebrating part was definitely meaningful. Otherwise, this day and its accompanying emotions hit me like a ton of bricks.

Doesn’t it seem silly that I would be surprised at feeling sad on your birthday without you? But I was. I certainly expected to feel sad, but the amount of it, the weight I felt on my entire body from the moment I woke up, was surprising. I think this day ties with Halloween for the hardest special occasion since you died. I just so enjoyed having you and dressing you up and celebrating with you on both of those occasions and it is terribly hard to have them without you.

First of all, I noticed that I just could not make myself get out of bed. It’s been getting harder the past few days, because I have not been sleeping well, so I tried to attribute it to that. But it was singularly difficult this morning.

Once I was up, it wasn’t any better. I felt exhausted and annoyed by everything. I just wanted to bury my head in my phone and not deal with anyone. I tried so hard to be my usual self for your brother, but I had to give myself some leeway. I did my best to explain to him that I was feeling sad, I might have more trouble than usual being patient, but that it would not be his fault or because of anything he did. It actually seemed like Max understood. He was pretty sensitive for a four-year-old today. He kept saying, “Don’t worry, the new baby is on its way.” He used to say, “You still have me” when I was sad. He really is the sweetest little man.

I limped through the morning. I texted Daddy and he offered to bring home lunch and help with Max for a little bit, so I could rest. Not too long before he got home, I posted about your birthday on Facebook. I shared pictures from your birthday morning last year.

Posting the words, “We love and miss you” finally did it. The dam broke. I cried and cried and I didn’t want to stop. It felt so good. That oppressive, awful heaviness that had weighed me down all morning started to lift.

I prayed to feel some kind of connection with you today. I wanted more than anything some kind of sign that you are still out there and you’re okay and I will see you again one day. I’m not sure if this was it, but a good friend and I cleared up a misunderstanding today. We both thought you might have had a hand in it.

The afternoon and evening went all right. Max and I ran some errands, mostly connected to your birthday. Daddy came home early and we released red heart balloons in the park. One of them stuck in a tree twice, just like when our Kingwood relatives released balloons for you last weekend. I think that was a sign from you, too. After dinner at Jardin Corona, we ate pink and white Valentine cupcakes in your honor. We even sang “Happy Birthday” and blew out candles.

Max seemed like he did pretty well today. He cried one time out of nowhere and I think that might have been connected to you. He also found your stuffed diplodocus in your room and took it to dinner with us. He carried Dippy when we released balloons for you and made sure she sat with us during dinner and dessert. We looked through the “Max and Lucy Memory Book” this morning. He laughed when we shared Lucy memories during dessert.

I miss you so much, baby girl. It is just wrong to miss your child on her 2nd birthday. I cried off and on the whole day, but it felt good to do that. It felt right. I’m crying because I miss you and I miss you because I love you. Feeling that so intensely is the best gift this day could have given me, besides having you here.

Two years ago at this time, I was finishing my first day with you. A year ago at this time, I was wondering how many years I would get with you. I didn’t know it was a matter of months at that point.

I wish you were here. Not only that, I wish you could be here and I would somehow know about this alternate timeline. I want to have you here and be able to feel the way I would feel if you suddenly appeared in front of me right now, whole and well and two-years-old.

If I could go back two years and do those 15 months all over again, I would. I would take all of it, the good and the bad. Hopefully, I would know what was coming and maybe be able to do something to change it.

If you appeared in front of me now and I was told I could have 15 months with you, I would be overjoyed. Fifteen months would feel like an embarrassment of riches right now.

Tomorrow, we face the 9-month anniversary of your death. We have a doctor’s appointment where we will hopefully hear that all is well with your baby sister Scarlett. Tonight, though, is still about you. Max asked me earlier, “Are we going to talk about this all day?” He meant you. I said, “Yes, we are going to talk about Lucy all day. Today is her birthday and she is still part of our family. We can talk about other things, but we are going to talk about Lucy all day.”

Happy Birthday, my lady baby.

Love, Mama

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