The Story of Evan, Part II

Broken Heart, CHD, Congenital Heart Disease, Hospital visits, Strong kids, Uncategorized

The doctors were finally able to tell us with confidence that Evan would live. So, we continued to prepare for his birth. We knew he needed to be born in a town two hours from our home at a hospital where there were pediatric heart specialists. As the pregnancy reached its final weeks, each appointment was suspenseful. Would this be the week? Finally, the day came for my appointment and I knew on the long drive down that this would be it. I had been feeling different and could tell time was drawing close. My mom went with me and we prepared to stay if needed. Sure enough, after my examination, they said “You want to have this baby today?” Evan was ready. The labor induction process went relatively smoothly and he made his appearance in about 6 hours. The room was full of doctors, specialists, nurses, and students who knew about his condition and were anxious to see how he was doing.

Evan looked perfect. His head was perfectly shaped, he had all his fingers and toes, and I immediately fell in love. No one would know his heart was all mixed up inside. The fact that he was born at this time and place when technology was able to give the doctors a glimpse of his problem before he was ever born was a tremendous blessing.

They gave us a few minutes together and then transported him to the NICU where he would stay overnight for close observation. The next morning, I received a call on the room phone. It was Evan’s pediatric cardiologist. He told me Evan looked great, they were moving him out to the cardiovascular nursery and we would be able to go home in a few days. We were expecting the possibility of heart surgery before he would go home so this was wonderful news. In a few days, I dressed him, we loaded him in our car and made the long drive home. I was able to bring my baby home; another blessing.

Evan was a great baby. He didn’t sleep through the night which was exhausting, but he was a joy. Because of his heart’s arrangement, he was getting too much blood pumped into his lungs. When he would feed, he would sweat a lot because his body was working so hard to eat and breathe. At 4.5 months, he had his first surgery. The surgeon cut him under his left arm and put a PA band on his pulmonary artery to restrict the blood flow into his lungs. This helped him breathe better. We had to be careful about picking him up and had to carry him a certain way due to his incision, but he had survived his first surgery. We had survived seeing this little baby be taken into surgery and we were amazed by the doctors, nurses, Evan’s strength, and by the support of our friends and family.

Not many people look at devastating and life changing situations as blessings. When you look for blessings though, you WILL find them. I am one of the blessed CHD moms who brought their baby home from the hospital…so many never get to do that. I am a CHD mom who knew before he was born that there was a problem so we could get help from specialists; not all moms have that. I choose to find blessings.

More about Evan and additional blessings coming soon.


A Broken Heart

Broken Heart, CHD, Congenital Heart Disease, Hospital visits, Parenting, Strong kids, Uncategorized

My son has a broken heart. It wasn’t caused by love or loss. It’s been that way from his beginning. Technology, medicine, and doctors work to keep it functioning. It has been the source of pain; mental and physical.

When someone makes an expensive purchase, they want the best and seek perfection; no flaws. We take our children as they are though…with their imperfections. My child happens to have a broken heart. His body is covered with scars; visual reminders of this broken heart. There’s a scar under his arm, another down the center of his chest, small ones on his wrists, puncture wounds on his stomach, small bites on his neck and wires inside holding his bones together. He’s not scarred intellectually; but there are mental scars; scars I cannot see. They are scars of fear, dread, worry, and memories of physical pain. All this and his attitude remains positive. He is a chameleon disguised by his clothing which hides his life map of scars. He blends in with other young adults. He is a warrior disguised as a regular man; not a warrior that fights others, but a warrior that fights for his own life.

Watching your child in battle is terrifying. I fear he will be lost after every fight and dread the approach of new foes.

I also admire his courage and stand in awe of his bravery. He may not recognize his own strength, but I do. I cherish every day, month and year as his mom.

My son may have a broken heart, but he has a soul made of unbreakable steel.