Faces of CHD: Vivian's Story

CHD Awareness Week may be over but for me spreading awareness is something that should be done all year long. I want to share one more story with you. A story about a beautiful little girl named Vivian. Her life on this earth was way to short however the impact that she has made in my heart and in the hearts of many others is immeasurable. I would like to thank Vivian's family for writing this beautiful blog post and sharing their story with us. We will continue to fight for awareness in honor of Vivian and all of the other children born with congenital heart defects.

Faces of CHD: Vivian's Story

A very wise man, my father, once told me that he thought I was touched by an angel. That has been something I have returned to many times over the past year and a half. When our daughter was diagnosed with HLHS, the last thing I felt was blessed. Our lives were turned upside down, and we were thrown into a foreign world filled with tough decisions, careful planning, and living moment by moment. But even now, after our little girl has passed away, I feel like I have been touched by an angel because Vivian was with us.

On December 1, 2010, Vivian came into this world SCREAMING. It turned into a little joke in the Cardiac Intensive Care Unit at CHOP. Jake and I talked to many nurses who said that they haven’t been her nurse yet, but then, with a knowing look, they would say, “But I was here on the day she was born.” She was wheeled from the delivery room and screamed the whole way down the hallway, past the family, and through the CICU. It was like she wanted everyone to know that she was here, and she was a force to be reckoned with. We decided at that moment that we would fight just as hard with her. Vivian’s life was filled with many unknowns, and she persevered through some of the hardest procedures anyone should have to face, especially a baby. She had three open heart surgeries, dozens of heart catheterizations, countless needles pricks, ECMO, and a total of four extended stays at the hospital, including her last one that last for almost three months. Through it all, small victories were won and special memories were made. On May 23, 2011, Vivian passed away because of a blood clot that traveled through her man-made shunt, which was providing blood flow to her body. At the time, she was under anesthesia for a smaller procedure compared to the ones she had already endured and was with the same nurses and doctors who had been taking such excellent care of her. We have been told that the some of the nurses were outside the room chanting her name or holding their breath while the doctors tried their best to save her. We know they loved her as much as we did and many thanked us for sharing her with them. Vivian had an amazing family and extended Heart family, and if love could sustain us, she would still be here. 

We have learned so much from Vivian during the very short 6 months she was with our family. She taught us that each moment counts because that is how fast things can change. We learned that the world is filled with amazingly intelligent people who save lives on a daily basis. We learned how to put our full trust in people who are a lot smarter than us. We learned that there are generous people all over who volunteer their time or success stories to help lighten the load for others. We learned that sometimes our family must live apart so we can be there for each other. We learned that love and support is all around us, but it is just hidden in the shadows, and emerges when we need it the most. We learned that a little baby can be so imperfect on the inside but can also be the definition of perfection. We learned that the only thing anyone can do for their child is to love them as much as they can for as long as they can. 

I shared these lessons in a speech I gave at Vivian’s benefit. This beautiful celebration of her life, which was organized by some amazing friends and family, was such a joyful party full of hope and was held just two days before Vivian died. That is how fast things can change in a Heart Family’s world. We learned so much from our little girl while she was here, but we are continuing to learn from her and be inspired by her strength and the impact her little life had on so many people. Though my Heart Baby is no longer here, I still feel the same things that I felt when she was with us. I still live my life day by day, not looking too far into the future because it is frightening. I still smile and feel happiness, but there is always a cloud of sadness that hangs over. I still ask myself, “Why us?”, but I know I wouldn’t give up the time I had with my little lady. I still hope for the future of other babies with the same condition. I am still searching for the purpose of it all, and I hope to one day pay forward all the kindness that was given to us. I know that I am lucky to have had the time with her that I had, and I try daily to put life into perspective and cherish the things that are truly important. Because the bottom line is that Vivian was here…she was loved…she was an example of how to persevere through the hardest moments of life. 

We loved her recklessly and passionately, and I am so glad we did. 

Faces of CHD: Colt's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. Thank you to all of the families who have allowed me to share their stories with you. These are the faces of CHD.

Day 7: The Story of Jakob Colt Frisbee

My husband and I were thrilled to find out we were expecting after trying for 2 years. We were over the moon when we found out we were having a son when I was about 22 weeks along, we had a daughter, and a son would make our family complete! Every time I had a check up my doctor told me the same thing, he is perfectly healthy and he had a good, strong heartbeat. I was so excited, getting his nursery ready and having his baby shower were leading up to what I thought would be a normal birth.

When I went in to be induced on May 26, I would soon find out just how wrong I was. Jakob Colt Frisbee was born at 2:39pm after 8 hours of intense labor. I knew something was wrong as soon as he came into the world, he was not crying and his hands, feets and nose were bluish looking. The silence of the nurses and the doctor were also a dead giveaway. The cleaned him up and he began to cry, they immediatly hooked him up to a pulse-ox meter so they could watch his stats, which they told me could be low because he might have gotten some fluid in his lungs while he was being born, they let me and my husband hold him and feed him and everything seemed ok until they moved me into a regualr room, but Colt did not go with me he was took to the NICU for further observation due to his oxygen stats being in the low 80's. We began to grow impatient for them to bring him into my room so the rest of the family could see him, so my husband called out nurse and asked her when we could see our son, she said a doctor would be coming in to talk to us soon, and thats all she could say right now. My heart sunk, my mothers intution knew something was terribly wrong with my new baby boy.

As promised, the doctor came in and in a very matter of fact way told us that they believed our son had a heart defect which was causing his oxygen to go below normal but they needed to trasnport him to Children's Health Care of Atlanta Egleston because they were the best pediatric cardic hospital in Georgia and our local hospital could not deal with such complex issues. Only hours after giving birth to my son, I watch him and my husband leave via. Angel Care to Atlanta, GA to see what exactly was wrong with him. I was made to stay in the hospital until the morning so my doctor could give me the ok to leave and make the 2 hour drive to Atlanta. Once there I was met by my husband who said very little and looked rattled with sadness as he clutched some papers in his hand, he lead me to the cardiac ICU where our son was being looked after by a team of nurses and doctors around the clock. The sight of him with IV lines and tubes going into his little body was almost too much for me too handle. A nurse lead me over to him and got me a chair, I cried as I stroked his tiny hand.

A doctor came over to me and began telling me what was wrong with my son. It's a very complex defect he said, it's causing his blue and red blue not to mix properly which in turn was causing his oxygen to be lower then a normal baby. He told me it was called double outlet right ventricle with transpostion of the great arteries, with a straddling mitral valve and a non-restrictive VSD. I had never heard of such a thing before, a nurse began explaining it to me in terms I could understand which I think only made it worse after I realized the severity of it. What can be done I asked thru my tears, well the doctor which I now know as Dr.Wolf, said we aren't sure just yet, his heart defect is complex we are looking at a few options, one is an arterial switch and the other is called a Glenn shunt. We want to moniter him for a while and see how he does breathing on his own, we may end up not doing a surgery until he is older and bigger.

He spent the next 3 days in the cardiac ICU, and was then moved to the cardiac step down unit, where he spent 3 more days. I was sitting in his room holding him when Dr.Majhd Machol, a doctor who I just love and think is the absolute best at what he does came in, he explained to me that they would be sending Colt home to get bigger and a little older before they preformed the first surgery, which surgery that would be they still did not know. I was so happy, but going home meant a lot of responsibility on mine and Robert's end. They set us up with Dr. Jane Todd a cardiologist in our home town that Colt would have to see once a week, he was on meds for swelling, acid reflux and blood pressure, he also required breathing treatments once or twice a day. I didn't care all I knew was that my husband was on his way down to Atlanta with my daughter to take baby Colt home for the first time since he had been born!

Once home we had a wonderful homecoming with balloons and family ready to greet baby Colt. We showed him his room for the first time, and I got to bath him for the first time and put some of HIS clothes on his. I was so happy, the sleepless nights that came along with having a newborn didn't even bother me, I would sit up all night with him if I had to, anything was better than being in that hospital.

The next couple of months he did well, he was able to celebrate my husbands, mine, and my daughter's birthdays, all which were in July. On July 30, I got a call from one of his doctors, Dr. Martha Clabby, she was calling to tell me that his cardiologist here in Dalton was a little concerned with Colt's visit the previous day where his oxygen stats had been in the low 70's, they wanted Colt to be down at CHOA first thing in the morning for a cardio cath, so they could see why his stats where dropping. I was so worried, thinking this might be it, time for the surgery. Robert, myself, Colt, and my in-laws made the 2 hour trip back down to Atlanta and this time was way more emotional for me that last time, I cried the whole time, while we were checking in, while we were waiting to be took back to the cath lab and while Robert and I waited with him in the room while a tech did a EKG and ultrasound of his little heart. Colt was tired and cranky because they wouldn't let him nurse and that made it worse on me.

They doctor who was doing the cath came in and explained everything to Robert and I, and whisked Colt away. 3 hours later they called and said everything had went good and we could come see him. He was pale, and they telling us he was going to have to have a blood transfusion, so we signed the papers, his breathing was hard and that worried me, I kept looking under his blanket at his chest which looked like it was doing so much work just to take a single breath. They then informed us that Colt would be staying overnight because they wanted to observe him for 24 hours. I broke down because I didn't know if I could handle being at the hospital by myself again, my husband, who was the only one working, had to go back to work the next day. With a heavy heart I said my goodbyes to my husband and inlaws and settled myself and Colt into the all too familar cardiac step down unit.

The next day the doctors that I had became so familiar with came and to tell me the plan for that day, a procedure called a balloon atrial septostomy, what that meant was that they would go in throught the IV line from the cath the day before and take a wire with a tiny razor blade and go thru one of the holes in Colt's heart to make it bigger so more blood could mix, hoping to by him a little more time before the surgery, they still wanted him a little bit bigger and older. They took my baby away for the second time in 48 hours and I was alone in his room, with my thoughts, which can be a bad thing for me. 3 hours later he was back, asleep but with good news, all had went well with the procedure and he oxygen was staying in the mid 80's and he wasn't on any oxygen at all, that was with him breathing on his own! I constantly sat and watched that oxygen moniter for the next 3 days, it became a love/hate relationship, everytime it would get close to 81 or 80 I would say a quick prayer that it would not go below 80! Finally he was able to go home, they told me the next time they say me it would most defintely be for surgery, they keep telling me that this was only a temporary fix. We went home and resumed our "normal" life of cardio visits every week and his round the clock meds, hoping that it would be at least 6 months until we had to go back to CHOA for the surgery. We were wrong again.

On August 31, we were at his cardiologist in Dalton for a weekly visit. The nurse who was checking his oxygen levels looked worried as she read the numbers on the meter, she went and got Dr. Salee. Colt's oxygen was at 61, they said he could not wait he had to go back down to CHOA immediatly via ambulance. So we were off to Atlanta again, I called my family to let them know I would call them as soon as we made it down there and I would let them know what they decided to do.

Once down at CHOA Colt was back with the familar nurses and doctors of the cardiac step down unit,the doctor was concerned his oxygen was staying in the 60's and he said they would feel more comfortable if he was in the CICU, I lost it and broke down at the thought of having to spend the night in the waiting room without my baby, but whatever was best for Colt. The next morning I waited on news from the cath lab, and the doctors, hoping that they would decide something for sure. They did. Around 5 that evening after my in-laws had came down to keep me company his doctor told me that they decided surgery could not wait and he would be having his first surgery a Glenn bi-directional shunt the next morning at 6am. I was relieved and devistated all at the same time, I called my husband and parents and told them to get down there as quick as they could. They did and we were all together praying and crying for Colt's safety during surgery.

The next morning I was unable to hold him because he was hooked up to so many cords, and IVs. My husband and I walked with him to the door of the OR, kissed him and said our "see you laters". We waited in the surgery ICU, and 3 hours later his surgeon came out to tell us the surgery had been a success and he was resting in the Cardiac ICU and we could all go see him later. We finally got to see him about 2 hours later, he looked so pitiful with his newly bandaged incision and what seemed like millions of IVs and tubes, and a ventilator running thru his tiny body. I stroked his hand and whispered softly that Momma was here. I wanted to take all his pain away and make it my own. My family came in to see him and once they were satisfied that he was going to be ok they all made the drive back to Dalton, where we live.

My husband and I stayed and slept in the waiting room until 3 days later he was moved into a regular room so we could be with him 24/7. He was doing so good after such a major surgery, they were letting him bottle feed again, and he was smiling a little. My husband and I figured we would be in the hospital for a few more weeks but much to our surprise only a week and 4 days after having surgery Colt was given the Ok to GO HOME! His doctors were so pleased with his progress, his oxygen was staying in the high 80's low 90's and his incision was healing good. We were a little scared to pick him up seeing as though his breast bone had been cut, but we went thru an after surgery class that told us how to care for his incision and how to and not to pick him up. We also left with about 5 different prescriptions. The first week Colt was home was hard, he was cranky and sore, and cried A LOT! He went and saw his regular cardiologist one week later and they were pleased with how well he was doing with oxyegn at 88 and the EKG and Ultrasound of his heart looked good, we went back down to Atlanta two weeks later to get an Xray of the breast bone and so his surgeon could check his incision. He was very pleased with how well he was healing and told me and my husband we were doing such a great job with him at home and they hoped they wouldn't have to see him again until he was 3 or 4 for his next surgery which will be the Fontan.

Today Colt is a happy and playful 8 month old. He loves to eat, play with his big sister, and watch Elmo in his jumper. We have learned how precious and short life can be and now we are so much stronger as a family because of what we have been through. I never take anyone or anything for granted anymore.

Faces of CHD: Alexia's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. The next post was written by an adult Heart Survivor. Thank you so much Alexia for sharing your story and being an inspiration to us all. These are the faces of CHD.

Day 6: The Story of Alexia Boesen

I was born December 29th,1985 at 2:35 am. I was born by C-section at 42 weeks gestation I was prenatally diagnosed with hydrocephalus and it wasn’t until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSD’s and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done. I was hospitalized for a month after that. At six months old I had the Blalock-Taussing shunt put in and I was hospitalized for 2 weeks following that surgery.

When I was eighteen months old, circumstances changed as did my living situation. I now was in an area that had access to better medical care. I was now seeing a cardiologist in San Francisco named Dr. Stanger. Shortly after I began seeing him, he told my mom and grandmother that there was a pediatric cardiologist in Sacramento and that I should be seen by him because it was much closer and much easier than making the 2 ½ drive to San Francisco every six months.

So by the age of 2, I was seeing a new cardiologist in Sacramento. He was kind and patient and dealt with the incessant questioning by my grandmother. In more recent times it was a joke in our family that Dr. Juris was scared of my grandmother. My mother allowed my grandmother to ask most of the questions when the three of us went to the appointments.

When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. So in June of 1990 we drove down to UCLA. I had a cath done to check the pressures and so that the surgeon who would be operating on me had an idea of my cardiac anatomy. After the cath my family had a meeting with Dr. Hilel Laks who was to be my surgeon. Dr. Laks was torn between the Fontan and a new experimental surgery that he thought I would be a good candidate for.

So we were sent back home so that he could do his research now that he had an idea of what my cardiac anatomy looked like. In Early August we went back down to UCLA where Dr. Laks told us that he thought I would be a perfect candidate for the experimental surgery he wanted to do.

My Double Outlet Right Ventricle repair surgery took 10 hours. The recovery from this surgery was rough and I coded twice during the 3 week long hospital stay. But finally the day came to leave the hospital and go back home.

The kitten was a gift from my grandmother’s husband
after my surgery at 4 ½ years old.

When I was six, I was kicked out of the special education class I was in. My teachers said that I was too bright and that staying in this program would severely limit me. The goals that were set for me at IEP meetings were being frequently met and exceeded.

When I was eight years old I caught pneumonia in February and I missed 2 months of school. Thankfully I was able to remain at home with no hospital visits. Two years later when I was 10 years old I caught pneumonia again. This time I was home for a month.

About six months later I went in to see my cardiologist and he ordered a cath. After the cath he told my mother that I needed an aortic valve replacement. My mother told him no and that I was doing too well for her to put me through that. My mom lived in denial until I was 12. Then it was almost too late. Winter break during sixth grade was hard. I was filling up with fluid. I was coughing a dry cough and dry heaving. I was also sleeping on 6+ pillows because I couldn’t breathe. I was also sleeping in a strange fashion. I would sit Indian-Style and then lean over with my hands tucked under me. I knew it was heart related but no one else seemed ready to believe that. I underwent test after test to see if anyone could figure out what was going on. There were doctors considering a GI issue so I was hospitalized for that. Tons of bloodwork was also done.

It wasn’t until the beginning of February that I voiced my thought to my grandmother. We were walking the halls. I was in my wheelchair with my grandmother pushing me. I said “What if it’s my heart?” My grandmother immediately said “It’s not your heart”. On February 5th, I proved I was right, I aspirated. The last thing I remember is doctors shouting orders. They were demanding drugs. I was on the vent for a week before the surgeon came to my family and said that I needed an Aortic valve replacement on that day or I was going to die. That afternoon I was rolled into the OR. 12 hours later I came off of the OR table. I was in no means out of the woods yet, but I was stable.

I continued to have problems. My sats were so unstable that I couldn’t be moved without my sats taking a significant nosedive. As a result of that I developed a Stage 4 bedsore on my tailbone that will never fully heal. I was on the ventilator for a month and the first solid food I ate when I was finally off the vent was green grapes. I don’t think green grapes had ever tasted that good.

2 weeks later, on March 19th I was discharged. I could not return to school until seventh grade but thanks to the kindness of my teachers, as well as my grandmother’s tutoring I was not held back.

In June 2005 I was told by Dr. Juris that I would need a second Aortic Valve replacement. I was heartbroken as I was told when I was 12 that the first replacement should last 10-15 years. However I was starting to experience symptoms that were indicative of heart failure. Dr. Juris wanted to do this at that point because my right ventricular function was still really good.

June 13th,2005 I had my heart cath. Because I was second case I had to stay overnight at the hospital. In the weeks that followed it was decided that we would go with a mechanical valve this time because the valve life was 25-30 years. The only drawback was Coumadin and the frequent blood draws that I would need. I decided it was worth it to avoid surgery for a long time.

Monday July 11th,2005 I arrived at the hospital at 5:30am and by 6:30am I was ready and waiting to get going. Of course I didn't get moving until 8:00am. I don’t remember rolling down the hallway to the OR at all. The next thing I remember it’s Wednesday and they are pulling chest tubes. I didn't get the second tube removed until Saturday along with the urine catheter. The following Tuesday, just 8 days after surgery I was released. It was my shortest hospitalization following surgery and I would have been out sooner but some old arrhythmia issues had resurfaced. It took me several months to get my energy back but I finally got it and I felt better than I had in a long time.

It took me a long time to figure out what I want to do with my life but just recently I have come to the realization that I want to teach preschool. I am very close to that goal already and I look forward to being able to make a difference in a child’s life and in the lives of their families.

Faces of CHD: Zoe's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. Thank you to all of the families who have allowed me to share their stories with you. These are the faces of CHD.

Day 5: The Story of Zoe Renée Fultz

After years of struggling with trying to conceive, pregnancy loss, infertility, countless day of heartbreak and tears... we learned we were expecting twins August 1, 2011. We thought this would be a perfect story ending, but that was not the case...

Our journey to be parents took us down another road of struggles and battles. On March 1, 2011, at 18 weeks pregnant, Zoe was diagnosed with Hypoplastic Left Heart Syndrome and Dylan with Down Syndrome and Esophageal Atresia. This was absolutely crushing and left us with wondering if there was any hope for a positive future with our children.

On March 25, 2011, at 21 weeks 4 days pregnant, we lost our sweet little boy. Our hearts were broken but we still had to fight for Zoe. I was unexpectedly admitted to the hospital with preterm labor on April 28, 2011. After countless days of trying to stop labor, Dylan was born peacefully sleeping on May 5, 2011 at 2:21 am.

That same morning I was sent to surgery to save Zoe from making a debut. We became a popular miracle at the hospital as labor stopped and Zoe continued to thrive. At 34 weeks pregnant and 8 very long weeks of hospital bed rest I was finally allowed to return home. This lasted exactly two blissful weeks.

Zoe decided to make a statement of her strength and was born on July 4, 2011. She arrived in this world like a little firecracker ready to battle for her life. At just seven days old on July 11, 2011, Zoe underwent her first open heart surgery, the Norwood, under the care of Dr Starnes at CHLA. After almost eight weeks of ups and downs she was discharged on August 25, 2011 to go home. We spend the next four months loving every moment as she continued to thrive and beat all odds.

On January 19, 2011, at just over six months old, Zoe underwent her second stage surgery, the Glenn procedure, again under the care of Dr. Starnes at CHLA. She had a spectacular and speedy recovery of just six days and home on the seventh day. What we hope to be Zoe's final surgery, the Fontan shouldn't be for a couple of years.

Graduating from "interstage" is wonderful and we now have a taste of what "normal" life is like. We cherish very moment with our daughter and are thankful that she is a part of our lives. Her smiles brighten our days, her giggles warm our hearts. Her half of a heart is more whole then we ever imagined.

For CHD week Zoe's family has decided to sell a heart awareness wristband (Pictured above). Their goal is to sell 200 of these bands! These are available for $5.00 each and will be going out by mail starting February 10th. All proceeds will be donated to help other families who face life with a congenital heart defect. Please help them spread hope and awareness while showing your support for their heart warrior, Zoe.


If you would like to purchase a wristband please email celebratezoe@gmail.com

To learn more about Zoe click here.

Faces of CHD: Xavier's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. Thank you to all of the families who have allowed me to share their stories with you. These are the faces of CHD.


Day4: The Story of Xavier Thomas Ross

My husband Nate and I were so excited to find out what we were having. We had been calling the baby "furda". As in this is "furda" baby. Silly I know. I was so ready to give my little peanut an identity. I thought for sure that I was having a girl. We started that appointment off with the ultrasound. She started pointing things out to us. The brain, lungs, legs, spine, arms, face. Xavier was face down, so she had to really work to get some pictures. All she said about his heart was that she was getting a good heart beat, but that she could not get a good picture. She said that it was most likely his position. She gave us the news that it was a boy. I was so excited. My heart was beating so fast. We left the room and she said to wait for the doctor. I can't explain it, but my heart never slowed down. I remember thinking as we were waiting, that I might pass out it was beating so fast. I just decided that it was because I finally knew that I was going to have a son and went on ahead sending out text messages with the good news.

Then we saw the doctor. She was very calm. She just said that she could not see all the chambers of the heart. She said it could be something. It could be nothing. Since he is in such a difficult position, she wanted us to go to a high risk doctor to get a 4D ultrasound done. Something inside me knew that something was wrong. I cried the whole way home. It would prove to be a very trying week in our lives. At that time I can honestly say that it was the worst week of my life.

So we all know how the story ends. High risk doctor informs us that our little baby boy will essentially be born with half a heart. Amnio is done...and the stages of morning begin. It was only about 3 hours between leaving the high risk doc and arriving at the pediatric cardiologist but if felt like a lifetime. My parents made the 4 hour trip from PA to be with me. It was such a blessing to have them there. We were not really presented with much hope from the high risk office. She really could not explain HLHS to us or give us any hope that anything could be done. She was grossly misinformed. I walked into the cardiologist office feeling like I was walking to the electric chair. He took us into his office and asked some general questions. Then with the warmest smile on his face he said..."If this is HLHS..I have places to send you where they can fix your son's heart. Its not going to be easy, but he can life a normal, healthy life". I am pretty sure that was the first time we took a breath since the week began. I knew at that moment I would go anywhere, pay anything, see anyone to give my baby boy a fighting chance!!

Xavier Thomas Ross was born on May 28th, 2011 at 8:04 pm. He was so pink and had big beautiful eyes and a wrinkly forehead. I loved him the minute I saw his little face. He did well and we were able to spend some time with him before he went to the CICU. He spent four days just chilling out and fliting with the nurses. On Wednesday, June 1st, 2011 he had his first open heart surgery called the Norwood. He did well and only had two set back during our first month in the hospital. He went home on June 22nd, 2011. He did great at home and had his feeding tube out by August. He had his second open heart surgery on Thursday, October 13th. It was hard to see him in so much pain, but he was such a tropper and went home in a week. It took about two months for him to really strat to act like himself again. Now he is thriving dispite HLHS...He is winning his fight. He still gets his Lovenox shots and still take medicine, but he is a normal, happy 8 month old!! And we are super proud of him.

To read more about Xavier check out his blog:
xaviersheartjourney.blogspot.com

Faces of CHD: Bodie's Story

It is Congenital Heart Defect awareness week!  Each day this week I am sharing the story of amazing heart warrior. I want to thank the Bennett Family for allowing me to share their story with you. Bodie was born a few months before Jacob. He was such an inspiration to me, this little boy is the true definition of a warrior. Keep kicking butt Mr. Bodie, we love you! 

Day3: The story of Bodie Isaac Bennett

On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously low resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7lb13oz and 20.5in.

 He had his first open heart surgery, the Norwood, on February 22, 2010.

He had a fairly rough recovery before finally coming home at 6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds (thickened) by mouth. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. The next day, they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor decided to try pacing Bodie externally. Within an hour, he turned around. A week later, he had his second open-heart surgery, to install a permanent pacemaker and change out his shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed to the CTICU and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the CTICU again in critical condition. He was again intubated and given medical support as they determined that he had an MRSA infection in his blood. He then spent 6 weeks in the hospital on IV antibiotics (5 of those weeks were spent in the CTICU as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections).

The day he finished his antibiotics, he was discharged! He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home!

On September 13, 2010, at 7 months old, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. By all accounts the surgery was a success. He was extubated the next day and home 4 days later! 

Bodie has been home since then (other than a 1 night stay for a virus induced tachycardia (high heart rate) in August 2011) and is thriving. He is now a rambunctious almost 2 year-old. He LOVES to climb (on ANYTHING) and is in a perpetual state of motion – we call him the “tornado with legs.” Honestly, other than getting more winded than your average kid (which he doesn’t let stop him AT ALL) and giving him meds 3 times a day (which is no harder than giving a kid Motrin or Tylenol – it’s not nearly as bad as it sounds), he’s just like any other little boy. If you don’t see his scars, you’d never know what he has been through. He is a ball of fire and keeps us laughing all day long. We are loving watching him grow up with his big sister.

We know Bodie has at least one more surgery in his future, the Fontan (probably Spring/Summer 2013, although it’s really up to his body and when he needs it), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS. And he will need pacemaker maintenance for life. But our lives are so normal right now. When we embarked on this journey, I could never have hoped our lives would be this good. Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family.

We could not be more blessed to have Bodie in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love. We love our little man and would walk this journey again in a heartbeat!

Click here to read more about Bodie!

Faces of CHD: Corbin's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. I can't thank my next guest blogger more for sharing her story with us. Ruth has gone through more than any parent ever should. Despite what she has gone through, she is constantly fighting for our heart kids and has dedicated her life to spreading awareness and saving babies. Ruth, I am honored to call you a friend. 


Day2: The Story of Corbin Walker Caruthers

When I first got pregnant, I had never heard about heart defects and how they affected 1 in 100 babies. I didn’t know they are the most common defect in newborns. I also didn’t know there was a way to help detect heart defects, called pulse ox. Now I know. I know a lot about heart defects and I want to share what I know.

February 20^th, 2011 I gave birth via C-section to a tiny, wrinkled, little boy named Corbin. He looked like a little old man but I loved him instantly. We had no clue to the hardships he would endure for the next three months as he fought for his life.  Corbin had an interrupted aortic arch, ASD’s and VSD’s (which are  holes in the heart), double outlet right ventricle (problems with the structure of the heart), and aortic and pulmonary stenosis (narrow veins). All of this was caused by Williams Syndrome. a genetic disorder presented at birth where one tiny little section of one gene is deleted. It messes with the elastin which is why many Williams Syndrome kids have heart problems. Corbin’s defects were pretty significant, and the doctors had a hard time deciding what kind of procedure would be best.

Corbin underwent three heart surgeries to try and fix his heart. He was an amazing fighter and I am so proud of him. He touched a lot of people while he was in the hospital and there were many tears the day he passed away. His room wasn’t just full of doctors and nurses, but of people that cared for and loved my little boy.

It has  been eight months since he was taken to Heaven, and every day I make it my mission to spread awareness of heart defects and pulse ox. I want to reach as many people as I can so that every mother will know what it means if her babies hands and feet turn blue. Or if their child is breathing heavily and can’t nurse and breath at the same time. I just want to plant that little seed of knowledge so that when someone needs it, they will remember “pulse ox” and they can ask for help.

Thousands of babies are born each day. Some of them will have Down syndrome, some will have autism, and some will have heart defects. It is possible. It does happen. And it is common. Sometimes I feel like I’m talking to myself, that other people aren't listening. Then I receive a message from a mother asking about pulse ox. They tell me they are pregnant and they heard my story and want to know more about pulse ox. In those moments, Corbin is with me. He is helping to save other lives and I am so proud that he is making a difference. So no matter how many people read this, I hope it will reach that one person who needs it the most. They will read that pulse ox is a cheap, non-invasive test that can save their babies life and they will do something about it. Whether they simply repost and share or they tell their friend or sister that is expecting. Some way the word will be passed and lives will be saved!

There is currently a bill working its way through WV legislation. HB4327 was recently passed through the Health and Human Resources Committee at the House of Delegates and will be going to the Judiciary committee next. We hope to have this bill passed this year and name it in honor of Corbin. Pulse Ox testing is cheap, no-invasive an it can save lives.

Please help support HB 4327.

To get updates and alerts telling you how you can help get Corbin's Law passed in West Virginia please register at yourethecure.org

Learn more about Corbins Law, join the facebook page by clicking here.

Pulse Ox Advocacy Links:

• If you would like to help, please visit this page to find a pulse ox advocate near you! (http://corashopesanddreams.org/pulse-oximetry-screening-by-state/ )
• Here is a map showing which states have bills or have introduced legislation. (http://www.cchdscreeningmap.com/
• Pulse Ox information and Resources: http://www.pulseoxadvocacy.com/

To learn more about Corbin's Journey visit: http://thecorbinstory.blogspot.com

Faces of CHD: Aly's Story

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. Thank you to all of the families who have allowed me to share their stories with you. These are the faces of CHD.


Day1: The Story of Aly Jean Lincoln...

My husband and I had been married for 3 years when we decided it was time to add one more to the family. On November 14, 2008 I found out we were having a baby! We were ecstatic! For some reason, I just knew I was pregnant. I bought pregnancy tests and took one everyday for 5 days before that. I just had this feeling~ I knew we were pregnant. Finally, I got a positive one! (2 actually - one for back up :) ) For the next 6 months we blissfully planned for the arrival of our baby. We painted a nursery, we registered for gifts, we picked out a crib... the fun stuff. :) At our 20 week ultrasound, the tech was really struggling to get a good view of the heart. She kept saying, "I can see it, I just can't get a good picture of it." She didn't seem concerned, she just kept laughing that we had a stubborn little baby who wouldn't move the way she needed her to. We laughed right along with her and didn't think twice about it. Never once did it cross my mind something might not be right.

On May 9, 2009 I went for my level 2 ultrasound to get a closer look. I wasn't nervous at all. Again, it never crossed my mind something might not be right. Our world came crashing down that day.

Our daughter was diagnosed with Hypoplastic Left Heart Syndrome at 30 weeks gestation. We were devastated but we didn't give up. We were thrilled to find out that the University of Michigan was ranked 3rd in the nation for treating this CHD and was located a mere 2 hours from home. Our daughter, Aly was born at U of M on June 30, 2009.

She scored 8 out of 9 on her APGAR tests and did very well on the days leading up to her first surgery. Aly was born via C-Section so I was unable to see her until she was over 24 hours old.

It was 7 days before I got to hold her. And even when I did I wasn’t really “holding” her. I was holding blankets and tubes and wires with a little tiny baby in the middle of it all.

This picture was taken just moments before she was taken to the operating room for her first open heart surgery.

She had her Norwood procedure on July 6, 2009. She survived surgery and did really well until they got back up to the Pediatric Cardio-Thoracic Unit. She had a rough patch that evening of trying to get stabilized but pulled through.

Underneath that heart shaped gauze is a yellow membrane that was covering her chest. We could look through the membrane and actually see her heart. Her chest was left open for 4 days following surgery.

8 days later, she went back into the OR for a shunt revision. The shunt that had been placed in her tiny heart was narrowing at one end and had to be shortened. 14 days later, we brought our baby girl home for the very first time.

We struggled with feeding and gaining weight, as many heart babies do, but we made it to her Hemi-Fontan procedure on December 4, 2009. Aly did unbelievably well and we were home 5 days later.

In March of 2011, Aly had her final of the staged surgeries, the Fontan. She showed us, yet again, how amazing she was and we were home 8 days later. Life for Aly is so normal. She is only on two medications and has absolutely no restrictions. In fact, we just got back from our first trip to Disney World, where Aly rode every single ride at least once and was still running around the park, happy as can be. Aly Jean is absolutely my hero and she amazes me every day by her strength.

Follow us at www.alyjeansspecialheart.com to see what she is up to now!

Here’s Aly last week at Disney World enjoying her first Mickey Mouse Ice Cream bar…. For breakfast. 

CHD Week: Jacob's Story

Congenital Heart Defect Awareness Week starts tomorrow! This week I will be sharing stories of CHD warriors to help spread awareness. I thought I would kick off the week (a day early) by sharing Jacob's story. Most of you know his story but for those who don't , here is the story of my little heart warrior:

Jacob Baker

Hypoplastic Left Heart Syndrome
Intact Atrial Septum

November 18, 2009 was a day that I will never forget. My husband and I went for our 20 week ultrasound expecting to hear if we were having another little boy or a baby girl. The joy of learning that we were having another baby boy was short lived. Right after the ultrasound tech got extremely quiet and we knew something was not right. She told us that there was something wrong with the heart. We were devastated and so afraid for our son. The next day we went for a heart echo and his diagnosis was confirmed, our son was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where the left side of the heart is underdeveloped of not there at all. Jacob’s was small and completely closed off. He also had a restricted atrial septum. This is the only outlet blood had to move through his heart and children with that added defect have an even lower chance at survival. We wanted him to have the best chance possible so we decided to travel 9 hours to have him at The Children’s Hospital of Philadelphia.



Jacob was born on March 23, 2010. Within hours of his birth that Septum became intact and they were losing him. He was rushed in for an immediate heart catheterization to open it up. His xray showed his lungs were flooded and the doctors were afraid he would not make it. Jacob did make it, 9 days and 2 bacterial infections later on April 1st 2010 he was stable enough for his first open heart surgery (Stage1: Norwood). This was also the day we were able to hold our baby for the first time. Kissing him good-bye and watching them wheel him to the OR was the hardest thing I have ever done. I told him to be strong and that I loved him. Jacob did very well during his surgery and was off the ventilator 5 days later.



Jacob continued to improve however he had very labored breathing. He couldn’t drink much by bottle because it was too risky and to tiring for him. He had a g-tube and Nissen surgery done on April 20th. After a dose of Morphine I watched Jacob’s numbers on the monitor suddenly drop. The nurse ran in and started patting him and telling him to wake up. They continued to drop and I could do nothing but stand there and watch and pray. The resident ran in and put Oxygen by his face and they hit the alarm; a sound I never want to hear again in my life. The alarm meant they need the crash cart, it’s bad. As a parent every time you hear that alarm you are frozen with fear. About 50 doctors ran in, the room flooded so fast. Thankfully the oxygen brought him back and no further intervention was needed. His body had stopped breathing because the morphine was too much for him. I will never forget the fear I had that moment, thinking I lost him. It is not a feeling I would wish on any parent. It took a few days for the drug haze to wear off but he recovered from his surgeries and we were finally released to come home after 8 weeks in the hospital.



At 4 months old we went back to CHOP for Jacob’s second open heart surgery (Stage 2: bi-directional Glenn). They thought his septum had grown back and went in to cldear some more and a hole was punctured in the back of his heart. This is common when going back to get the septum. Thankfully he has an amazing Surgeon and he was able to (with difficulty) close up the hole and stop the bleeding. Jacob recovered amazingly well and we were home just 6 days later.



You would never have guessed he had just had open heart surgery. Jacob came home on Oxygen because his oxygen would drop whenever we tried to wean him at the hospital. He was on it for a month and then once fully recovered was able to keep his numbers where they should be.



Jacob started drinking by mouth and within a few months he no longer needed to eat by his g-tube. This kid has a HUGE appetite; he made up for lost time lol. When he turned a year old we had some more testing done because of his “unique” breathing. We learned that both of his vocal cords were paralyzed. Scar tissue had built up around the vocal cords tethering them together. His airway is the size of a pinhole. It is amazing he could even breathe without assistance. Only 5% of kids with the airway can breathe without a Tracheotomy tube and he not only has half of an airway but also has half of a heart!

Even though Jacob has continued to be able to keep his oxygen at a good level for his heart his breathing is dangerous for him. He is exerting too much effort just to breathe and as he gets older it will become more difficult. Doctors in the top two airway hospitals both agree that he needs a airway reconstruction surgery. He is scheduled to have it on April 25, 2012. They are going to first try to go through his mouth to cut the tissue and see if that works. If it doesn’t then they will have to go through his throat and use his rib to create a graft which will hold the airway open. We are so scared about this surgery. I guess because he is so happy and doing so well at home. I knew about the heart stuff, I was prepared for it. I knew that he needed that to live. I was not prepared for this. Jacob will also need at least one more open heart surgery (Stage 3: The Fontan) which he will have when he is 3 or 4 years old. It kind of depends on what happens with this airway surgery.



Jacob doesn’t speak much because it takes so much effort to breathe. He makes sounds and says 2 or 3 words. He is learning to use American Sign Language which has opened up a whole new world for us. I am so proud of him and amazed that he has found a way to communicate with us. It was so hard seeing him get so frustrated with not being able to communicate. When we learned about Jacob’s heart condition we were devastated. I never could have imagined that my life would have gone down this path. I hate that Jacob has gone through all that he has but I am blessed that he came into our lives. Jacob has taught me so much about the true meaning of life. He has taught me to slow down and cherish even the smallest moments. I won’t lie I still have days where I want to pull my hair out, I am a mom after all. The point is that even in those moments I realize how lucky I am to have those moments.




This life is scary; a little cold makes me worry that it could take him from me. This life is also beautiful; watching him smile and play like any other child. His smile is brighter than anything I have ever seen. I have formed relationships I never would have known had it not been for Jacob. I refuse to spend my life fearing Jacob’s death, instead I spend it focusing on the beautiful life that we were given. Jacob may need a transplant one day, but the way I look at it is 30 years ago his diagnosis was 100% fatal. Today some centers have a 92% success rate. Who knows what they will come up with in another 30 years. Where there is life, there is always HOPE!