The Journey Summed Up – Baby with half a heart

When I was pregnant with my son, my first child, I wanted to be sure to never do anything to harm my baby. I gave up my favorite Starbucks coffee, I took all my vitamins and drank a ton of water. That’s all I needed to do to have a healthy baby right?

I wish it were that simple. I did do everything right, yet here I am writing a blog about my life as a heart mama. I never pictured motherhood to be like this. I pictured a beautiful moment leaving the hospital with my healthy newborn boy and celebrating his arrival with the family. That just wasn’t in Oliver’s plans.

Oliver came into this world, arms swinging. A fighter since birth. When he came out he didn’t cry. The nurses ran him out the door in a rush. 4 hours go by and I still haven’t met my son. I knew something was wrong when the Doctor said his Oxygen was only in the 80’s and that he needed oxygen. Luckily, the nurse heard a murmur, an echo was done early the next morning and then the Doctor came to us with the news.

I thought childbirth was going to be the worst pain I would ever experience. I was so wrong. Finding out my son was born with a rare heart defect was. Half of a heart. How is that possible? I felt like my world was crashing around me. I was in shock and couldn’t hardly speak. I knew I had to pull myself together to be strong for my boy, and have the doctor’s explain to me what is going to happen.

At just 5 days old they did open heart surgery on my son just for him to live. 11 excruciating hours. Felt like eternity. All I could think about was how unfair this was. Not just for us as parent’s, but for my sweet baby. He didn’t ask for this, he didn’t deserve this pain, this struggle. I wished I could pray it all to go away.


2 1/2 months went by and we were looking at finally going home. Oliver decided that he wasn’t ready. He went into cardiac arrest and they started compressions. 10 minutes went by, no pulse. I screamed, I cried. I held his fathers hand, both of us trembling. 30 minutes goes by… 40… 50… an hour. I couldn’t breathe. They put him on life support for 3 days. During that time Oliver had 2 seizures and a stroke. He was in heart failure and they flew him to a hospital to put him on the heart transplant list. He was 1A on the list for 4 months before they did a repeat MRI and found fluid in his brain that caused them to take him off the list. They explained to us how he would be a vegetable and there is nothing they can do, and we had to think of quality of life.

As a mother, hearing this was hard to absorb. I didn’t want to believe it. I thought to myself… They are looking at the wrong MRI, that’s not my son’s MRI… What do you mean nothing you can do? I felt of course that I needed to make sure there were no stones unturned so through tears, I asked a billion questions. That there were no surgeries to fix this? Will a shunt fix this? The surgeon said a shunt in his brain wouldn’t help him, and if I made him go through that would I be pushing my son into his grave or do I want to bring him home to spend time before he passes. I hope those of you reading this never have to make these decisions. I wouldn’t wish this on my worst enemy.

So, after 162 days in the PCICU he finally got to come home, to feel the fresh air in his hair, and the warm sun on his little cheeks. We decided to create a bucket list for him. We want to do everything we can with our boy and make up for lost time and create beautiful memories. The thing is, we don’t know how long he has, and you never know what miracles could happen. Doctor’s are truly amazing at what they do and can often predict, but they aren’t God.


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