Robbie's Story:
Shortly after coming home, Robbie went into heart failure. we brought him to the ER, they transferred him to Yale by ambulance. He was given MANY drugs and I was taught how to administer them. we were there a week. His day started at 5 am with his first dose till his last dose at midnight. I slept him in my bed so I could watch him to make sure he kept breathing. He was good about two weeks on the meds. One day I noticed he'd slept all day(which wasn't so unusual since he was so week. He'd only eaten 2oz of formula all day and his breathing was weird and he was pulling at the ribs. I rushed him to the pedi, who looked scared and had me take him to the ER, they pushed us right through to Nicu. They gave him oxygen, and a feeding tube, and told me to call my priest. We had a baptism for him in the hospital, which I knew was really his last rights incase something went wrong, Robbie was transferred to Yale Children’s Hospital. They remembered us when we got there. Robbie had his surgery July 17th, 2005 at seven weeks old. They found an additional hole in his heart and sewed that when they patched the other hole.
I can tell you I have never seen anything as horrible as what Robbie looked like in that bed after the surgery. I was told he would be paralyzed the first night so he wouldn't hurt himself. He did, for just a second open his eyes and smile at me, like to tell me he'd be okay. He was a miracle. truly. It was a horrible journey, but the reward is someone I could never express in mere words his meaning to me. This child saved my life and restored my faith. 4 days later he was home like nothing happened! He was a whole new kid! He was weak for a long time, but he didn't even have pain meds when he came home! He's amazing. He has had great follow ups since and now only has to be checked every three years!
He is a healthy 6 year old now, hehas no idea he was ever sick! I've tried to explain but he doesn't get it yet. He's still a little small but within healthy limits. He'll need no additional surgeries. I tell him all the time that the Dr's fixed his heart, and he fixed mine. He is my best friend.
Logan's Story:
Our seemingly perfect existence was shattered at Logan’s two week well child check up when our pediatrician uttered those fateful words, “I hear a heart murmur.” He immediately sent us down the hall for a chest x-ray and EKG. The entire time I felt like I was having an out of body experience because it did not seem like it was really happening. “What? A heart murmur? How can there be anything wrong with my baby? Not my baby!”
After the tests we returned to our pediatrician’s office to await the news. They called me back to a room where two doctors were standing looking at Logan’s chest x-rays and pointing at his tiny little heart. My heart raced and my knees felt like they were going to buckle when I saw the look on their faces. It was sadness. They saw what appeared to be a very large hole in his heart but they weren’t 100% for sure. What concerned them the most was that the x-rays showed he was in heart failure. To say that I cried my heart out upon hearing those words is probably an understatement. I was completely devastated and terrified out of my mind.
They sent us home with an appointment to see a cardiologist at the University of Iowa Children’s hospital in three days. Those were the longest three days of my life.
We saw the cardiologist after undergoing many tests including an echo. The final diagnosis served as a big blow. Not only did Logan have a large VSD but he also had four other very complex heart defects, all life threatening. We were shown a picture that illustrated his D-Transposition of the Great Arteries, Double Outlet Right Ventricle, PulmonaryStenosis, Right Aortic Arch and his Large VSD. His current oxygensaturations at the time of his diagnosis were 66%. Normal is 100%. He was dying. They took him from us immediately and performed a procedure in the cath lab to save his life. My husband and I were in a constant state of fear. We cried and we cried until there weren’t any tears left to cry. It was heartbreaking and we were scared for the precious life of our child. The next three days Logan was in the NICU and during that time we learned all about his condition, how to take care of him and were informed what the future would hold for our son. Many surgeries.
We got to take Logan home for two weeks before he began to decline again and it was time for his first heart surgery, the Bt Shunt. One of the hardest things I have ever had to do is hand my baby over to the arms of strangers. To entrust them with his life.
His surgery went well but his recovery was long and full of complications. We spent 31 days in the hospital following his surgery through focal seizures, breathing issues, feeding difficulties including a severe oral aversion and bloody stools. When he was finally discharged he came home with many new accessories, a feeding tube and numerous medications. Life was definitely stressful for a while and sleep was almost unheard of with tube feedings every three hours twenty four hours per day and severe acid reflux. The one and only thing that helped us to survive that madness was the fact that we were beyond grateful to still have him with us. We knew full well that the odds had been against us and that other families had not been so lucky.
Since that time Logan has underwent two more heart surgeries, one his full repair-the Rastelli Procedure with RV-PA reconstruction using a Contegra Conduit at 10 months old and the other at 3 years old to replace his conduit with a homograft and to remove muscular growth in his RVOT. Both surgeries resulted in more post surgical complications from airway issues to Dresslers Syndrome. Both were later resolved.
Today Logan is a happy five year old boy and so full of life. He is currently in preschool and preparing to embark on his new journey in kindergarten next fall. A huge milestone for a little boy who has endured numerous heart surgeries and other procedures. We have watched him overcome so much and struggle through many complications along the way. Logan’s heart story is far from over though and he will need more heart surgeries in
the future since his homograft will not grow with him. He currently is being monitored by his cardiologist for a few little issues and had a loop monitor implanted last year to try and determine some unexplained episodes he was experiencing.
We have learned so much in the past five years. A lot about life and much more about HOPE! Although we cannot foresee the future for our son we have the faith and belief that all things are possible.
You can follow our journey and learn more about Logan’s story by visiting our blog at www.whenlifehandsyouabrokenheart.blogspot.com
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