The Story of a Little Heart Continues

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Over the next two years Adam continued to undergo various tests, procedures and surgeries and we continuously witnessed miracles. At 6 months old, we learned at a routine cardiology appointment that Adam was going into heart failure. He was admitted to Cincinnati Children’s that week for a cardiac catheterization with the hopes of repairing the pulmonary conduit through the catheter (rather than putting him through another open heart surgery). Through the catheterization they were able to successfully place three stents in order to open up his collapsing grafted artery. In subsequent cardiology appointments, his cardiologist continued to marvel at how Adam’s little aortic valve just chugged along. It was always leaky, but somehow his heart didn’t mind.

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The Story of a Little Heart (Part 3)

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7/03/12

My Dear Adam,

The best day ever. I held your tiny body in my arms for the first time since you were born three weeks ago. For the second time, I snuggled you. For the second time, I smelled your sweet hair. For the second time, I relished the softness of your baby skin against my face. I’m engraving this moment in my heart forever so I can close my eyes and return to it again and again. I haven’t felt so much peace and warmth and love in so long. I love you, my dear sweetheart.

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The Story of a Little Heart (Part 2)

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6/15/12

Dearest Adam,

You are 4 days old today and you are having a life-saving surgery that will fix your heart and allow you to live a normal life. Last night was a restless one. I hate sleeping in hotel beds. Daddy and I arrived at the hospital around 6:30am. We had the opportunity to hold you one last time before the surgery. I took a peek at your perfect little body – the last time that I would see it in its perfect, unscarred form. Knowing that your heart was failing you, I listened to your heavy breathing as your lungs worked harder and harder to oxygenate your body. I wished that I could give you my breath and somehow make your heart whole so you wouldn’t have to go through all this.

The surgical team seemed to be moving in slow motion as they walked through the doors of the CICU and toward your room. I didn’t want them to take you. Not yet. I wasn’t ready to let you go. We followed the team into the staff elevators and meandered through a maze of white, sterile hallways that led to the operating rooms. It was a force beyond my own strength that allowed me to put one foot in front of the other. As I walked, I watched you lie there – so small and fragile in the big bed. When we reached the OR, the anesthesiologist assured me that you would be comfortable.  I tearfully said goodbye. They pushed you through the doors and I had nothing else to do but wait… Continue reading

The Story of a Little Heart

It’s 2 am. I can’t sleep. Too much clutter in my mind. Writing helps me to de-clutter. I usually write in my journal or write letters to my boys. I was re-reading some letters that I wrote to Adam in the first year of his life. Our sweet Adam is only 2 and already his life story is a miraculous one. As we are striving to spread awareness of congenital heart disease and support for CHD research (and with Adam’s 2nd heart surgery approaching in just a few days), I think that sharing Adam’s story with you might go a long way. And, although the feelings I’ve expressed through these letters are personal, I share them as a testimony that our Heavenly Father is real and that He loves us. That we have a Savior, Jesus Christ, and that through Him, we can do all things…

6/11/12

My Dear Adam,

I have been blessed with the sweetest of angels, and that angel is you. I thank my Heavenly Father daily that He sent you to me. So much has been asked of you already, my sweet baby, and I’m afraid it’s only the beginning. God sends his children to Earth to learn and to grow. We’re all faced with trials – some more difficult than others – but I promise you that He will always be there to succor you. Throughout your life you will experience much physical and emotional pain, and you will be asked to bear hardship and sorrow; however, the joy and happiness and love that you experience will be so much greater. We all have a purpose in life. Everyone has a story to write. I can’t wait to see who you become, little Adam. What great opportunities and happiness lie ahead for you. My little sweetheart, this is the beginning of your story…

Last night I went into labor. It wasn’t unusual for me to have contractions, but these were a bit stronger and more frequent. Around 6:30am, when Daddy leaned down to kiss me goodbye, I whispered to him, “Honey, I think I’m in labor.” Daddy told me he would meet me at the office. I got up, fixed your brothers some breakfast, took a shower and did some laundry. I also packed my bag, because after all, this just might be the day.

I got to the doctor’s office around 10:30am. It was determined that I was already about 7cm! I said, “Well, I guess I should probably head to the hospital then!” As we drove toward the hospital, my mind was racing. I had anticipated this day for 9 months. Admittedly, I was scared to meet you. I knew of your heart condition, but I didn’t know what to expect at your birth. Would you be sick? Would I get to hold you? Would you look like the baby I had envisioned in my daydreams? We arrived at the hospital around 11am, and Daddy and the nurses made me as comfortable as possible. I progressed quickly and before I knew it, I was wheeled to the O.R. and it was time to push.

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Little Heart. Big Cause.

Our little heart angel

Our little heart angel

Our son, Adam (now 2 years-old), was born with a major Congenital Heart Defect called Truncus Arteriosus. The defect is complicated but essentially means that he was born without a pulmonary artery (one of the two major blood vessels that extends from the heart). At just 4 days old Adam underwent a life-saving open heart procedure to repair his aortic valve, insert a human donor graft to act as his pulmonary artery and to give him hope. Since then he has endured several other procedures for his heart. Unfortunately, the pulmonary artery graft is not his own tissue so it will not grow with him. As such, Adam has many more surgeries and procedures in store for him, unless doctors and scientists are able to perform more research and develop better solutions. In three days our little Adam will undergo another open heart surgery to give him a new pulmonary graft and to replace his aortic valve, which is now deteriorating. Continue reading