The Heart of the Matter

Having children is one of the greatest joys that life can bring you. The excitement you get from the moment you find out to the very first cry when they’re born, the feelings are so overwhelming you can’t help but cry.

Let me tell you the story of my little superhero whose heart needed some fixing and in turn caused me to address the deeply embedded issues within my own.

My little Avery—AJ for short—was born April 26, 2017. He was born a little earlier than we had expected, but if we didn’t deliver him neither of us would have been here today. I hadn’t felt well all that morning prior, so when my doctor had me rush over to the hospital we knew it was time. They prepped us for surgery and in we went.

After about 15 minutes, my little guy was born. Weighing in at 6.1 pounds and 18 inches long, my little nugget, as my doctor called him, came out screaming. Not more than a minute later they rushed him off because they weren’t able to clear his lungs of the amniotic fluid, or so they thought.

They whisked him off and my husband went with them.

An hour later in recovery they told me that he was still under observation. Naturally I panicked. I couldn’t help but think something was wrong. Another hour went by before they brought him to my bed to feed and bond with him. They still said that they needed to check to make sure he wasn’t having any difficulty breathing throughout the night so I just stayed up and held him, watching him sleep.

When the nurse came in I told her he seemed to be breathing rather quickly and was a little worried. They took him to have some tests run—the normal ones that they do to make sure they baby is medically cleared to leave the hospital. That’s when they discovered the hole in his heart.

Immediately I called my uncle, Dr. Richard Allen Williams, to inform him of AJ’s diagnosis. He told me to have the doctor that he would be following up with contact him so that they can discuss a solution.

I was so glad to have my uncle relay the medical terms which sounded so scary to me and give me the assurance that the baby would be fine, but he made my husband and I aware that until surgery can happen, we would need to monitor him closely.

You see, initially they said it was only one, but we later discovered that there were three all significant in size. In the lower chamber of his heart there was a large hole in the ventricle divide and when he cried, blood could potentially push through the hole and towards his lungs. He also has two holes in the upper chamber which they had said may close on their own but not likely without surgery.

Hearing this I became devastated and depressed. I started to wonder what it was that I did wrong to make my baby have to go through all of this. I would watch him sleep breathing rapidly because we also found out that he was in a constant burning state with his heart rate. We struggled to pump enough milk to support his weight gain even when we fortified it because of this.

So for the first five months of my baby boy’s life, we were in constant watch. Making sure he didn’t cry to over exhort himself. Feeding him solids to put a little bit of weight on him, though it didn’t help at all. Giving him medication that slowed his heart rate down and made him sleep so heavy. Going to doctor appointment after doctor appointment only to be told he’s not thriving and he’s not improving. A mother can only take so much before breaking down.

Finally we got the thumbs up for surgery, and the phone call for the date. I was sitting on pins and needles every day just waiting to hear, "Let’s get in there and fix this little guy up."

Fast forward 30 days later, October 30, 2017. It’s 5 AM and we arrive at the children’s hospital of Atlanta Egleston location and are greeted by Dr. Kantet and his surgical team. They took my little guy to the back and we just waited. They said surgery would be over by 12, but when they got inside they noticed the main valve that connected to the arteries leading into both sides of the heart was cleft. So that required more time to close. Finally at 2 PM, he was out of surgery. My husband and I rushed up to see him, and I couldn’t believe my eyes.

There was my little buddy lying motionless on the bed, tubes everywhere. My heart began to break as I watched him be supported by the breathing machine. As soon as I entered the room his monitors went off. He could sense me and he even stared at me with his glazed over eyes. They asked me to leave so that they could remove his tubing and allow him to wake up more.

When we returned, he was woke looking around. He fixed his eyes on me and was trying to cry. He even tried to take out his own tubing to try to crawl over to me to be picked up.

I was amazed and so were the doctors. They told us the next morning that he could be moved to his own room. The next morning he was sitting up ready to nurse. I had spent all night pumping to make sure when he was ready to eat he could just go for it, but he wanted me to hold him and give him what I called mommy love.

After three days of being in the hospital the doctors told us that he was doing great and we could take him home. We had to continue to monitor him to make sure his surgical area was healing, and of course taht he was breathing. He was placed on pain and blood pressure medications until he saw his cardiologist four weeks later for follow up.

It was definitely a trying time but we made it through. We recently celebrated his 1st birthday and had the superhero theme, honoring his toughness for such a little person. He’s not busier than ever, and we couldn’t be more excited. We just want to watch him grow and soar.