What it feels like to be a mother of a child with CHD

“The doctor will be in to discuss the results with you”

This is the sentence that began the petrifying road I was soon to discover. As I was getting an echocardiogram on my unborn child’s heart, I asked “Is everything okay?”

With the response I got, I knew everything was in fact, not okay. With my thoughts racing through every possible scenario I could think I of, I waited. I waited for what felt like hours.

I waited for the doctor to come in and inform me of something that not even the worst possible scenarios in my head could compare to.

My first born child has a heart defect.

As the doctor was discussing the surgeries she was going to have to have, I couldn’t hear her. I saw her lips moving but I wasn’t hearing anything she was saying.

I could feel the tears running down my face, but I couldn’t move to wipe them away.

Fast forward to delivery day:

It’s 3 am. I’m 36 weeks 6 days pregnant. I wake up to go to the bathroom. I feel wet. The bed feels wet. First thought: my water broke early! I was wrong. I turn the light on and I see that the “water” was red. I was laying in a puddle of blood.

We rush to the emergency room to discover that I had a second placental abruption. I was going to undergo a c section that day.

The nightmare was about to become reality. My child was going to be born into a world that would be unsafe to her because of her own body. My body couldn’t protect her anymore. Terrifying.

I delivered her and they took her from me. They took her in a helicopter 2 hours away from her mother. The person that she is comfortable with. The only person she knows.

Fast forward to surgery day:

My mind was racing. The tears were flowing and I was wondering if my tiny 6 pound baby was going to survive through someone literally cutting her chest open and stopping her heart.

I handed my child into that surgeons arms, hoping and praying that he could keep my child alive.

As she was in surgery, I was praying that when they took her off of bypass that her heart would beat again. I prayed that God would let my child live because I had no idea what I would do without that sweet baby.

Fast forward to 1 month post surgery:

“She’s one of the sickest babies on the floor”

This is what a doctor told me. How do I go back into that room and tell my daughter that everything was going to be okay when I wasn’t convinced that everything would be? I was losing faith. Who wouldn’t in that situation?

At this point every bump in the road felt like an immense mountain.

Everyday felt like years. I didn’t know what was wrong with my baby and I didn’t know if she was going to make it though this.

It was weeks and weeks before the doctors figured out what was wrong with her, but when they did things started looking up.

Fast forward to going home:

“Today you are going home”

A sense of calmness and perturbation came over me. Physically I was ready to be out of the hospital room that I had been in day in and day out for nearly 5 months.

But mentally, I didn’t know if I was going to be able to care for my child in a setting that didn’t have advice and helping hands at all hours of the day and night from professionals that deal with these kind of babies everyday.

“What ifs” filled my mind. What if I’m not strong enough to do this? What if she stops breathing at home?

I swallowed my thoughts and I loaded my baby in my car and we went home.

More recently:

Some days I feel like super Mom and other days I feel like a terrible mom. A mom that doesn’t do enough. A mom that isn’t taking the best care of her baby.

The anxiety of her future surgeries seems to overwhelm me most days. I try my best to hide it because I don’t want my baby to sense it. I try to stay busy and I try to pretend that it’s not going to happen. That her battle is over.

But in reality, her battle has only begun.

This year has taught me a sufficient amount of lessons.

Never lose faith.

There is still love in this world. I watched doctors and nurses care for my child like she was their own. They treated us like family and THEY are the reason my child is alive and the reason that my spirits were kept up most of the time. They give you hope in ways that no one else can.

Take help when it is offered during tough times in your life. People that care about you want to help. Let them.

If you’re afraid, that means that you are brave. You can handle this because God decided that you needed this tough time for a reason.

Appreciate the small things in life because those are the most important. Cherish every smile that your child makes. Every laugh. Every sound. Every move. Every cuddle. Cherish all of it because God wanted you to have those moments.

God is with you every single day. My child is prove of that.