I’m not ready, but I have to be because I am a Heart Mom

We’re getting closer. I try to stick to the nuts and bolts, but my heart and soul so easily weep. I have to hand you over again soon, too soon. And I have to trust and let you go because I am a Heart Mom.

I never anticipated joining the Heart Mom Club. I didn’t even know such a club existed. Once you join, it’s not one you’d recommend to anyone. Yet, here we all are with a lifetime membership we never signed up for.

This is the story, a peek inside a CHD heart mom’s head as she steels herself for her infant daughter’s upcoming open-heart surgery.

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What is a heart mom?

A heart mom is a mother to a child with Congenital Heart Disease (CHD), a mom to a heart warrior.

CHD heart moms care for their medically complex heart babies in extra special ways. They have to learn all about how the heart and cardiovascular system works, and their child’s unique anatomy.

They may have to act as their child’s nurse regularly checking oxygen saturation and breathing, giving them medications, and feeding them through a tube. Countless cardiology appointments, specialist appointments, therapies, tests, procedures, and surgeries are a part of their life.

They learn to always advocate for their heart kids. Through these experiences and watching their child’s strength they grow and become warriors too.

Why me?

I am the mom of a heart warrior. I am a heart mom.

I became a heart mom halfway through my pregnancy when my daughter was first diagnosed with a Congenital Heart Defect.

After delivery, I spiraled through a nightmare as my daughter’s heart was more complex and she needed an emergency transfer. She ended up needing surgery within her first week of life. Otherwise, she wouldn’t have survived.

Thereafter, we had to do everything in our power to get her to gain weight, grow, and get ready for her big repair.

To survive past 1 or 2 years old, she required a second open heart surgery.

I am a heart warrior mom.

Ignorance is bliss…or bleak

They say ignorance is bliss. Do you agree?

Apparently, I do not enjoy bliss, because I prefer to know ALL the details. Give me the good, the bad, the ugly.

I get it though. Ignorance or innocence can be a blissful state. There’s less worry. I understand the appeal.

Regardless, I like to do my research ahead of time. I want to know what to expect – the typical scenario, and any potential atypical scenarios. Dreaming of the ideal, and grounding myself in the reality of possible setbacks.

In preparation for my daughter’s arrival, knowing she would need open-heart surgery, I gathered a massive list of questions to ask her heart surgeons, cardiologists, and other hospital and heart medical team members.

This exercise helped me feel some sense of control in this uncontrollable scenario. And I felt I could better advocate for her when I knew and understood more.

The problem is, depending on what scenario you’re dealing with, the anxiety storm can grow and grow to an untamable extreme.

And, as any seasoned heart mom will tell you, expect the unexpected.

You can do all the research and ask all the questions, but no CHD journey is the same.

It’s impossible to know exactly what will happen and how it will all go. There are too many variables and risks. Even when dealing with the same Congenital Heart Defects, each child’s heart is unique and their CHD journey will vary.

So is it better to know more or less when it comes to your child and CHD? Is it better to be face-to-face with a bleak reality or look at a distance in bliss?

The truth is there’s no right answer. Every parent will have to decide this for themselves. Not everyone deals with stress and hardships in the same way, and that’s okay.

The Nuts and Bolts

As we approached my daughter’s second heart surgery, my rational mind went to the concrete details.

We’ve been here before. We did this already. SHE did this already and showed us her incredible strength.

Her first open heart surgery at a mere 3 days old was in California at a top pediatric heart hospital, Children’s Hospital Los Angeles.

For this second open heart surgery, we were bringing her to Boston, Massachusetts, to another top hospital and esteemed surgeon at Boston Children’s Hospital. I felt confident about our plan and her CHD care team.

Now she was older, 6 months old, and bigger. They say they do better, and usually, have an easier time handling the surgery and recovery when they’re bigger than as newborns.

Despite the different locations and the different hospitals, I generally know what to expect.

I previously met all the physicians and professionals involved in this setting and understood their roles.

I no longer have to ask what every other medical term, number, and test means.

We already had some experience of our baby inpatient in a children’s hospital.

Our family and friends were lined up to help support us through our baby’s surgery.

I understood and anticipated all the wires, tubes, and lines.

I could rationalize the challenging reality.

The other side, however, isn’t always rational.

My Heart and Soul

Out of my brain and into my heart was another story.

For months we had been drowning in the intensity of specialty medical caretaking, NG tube feeding, regular parenting, and adulting. Bills going unpaid, texts going unanswered, care of ourselves deprioritized.

There was no time.

What we were dealing with was massive. And the emotions were enormous. But there was rarely time or space to recognize them, feel them, and process them.

I start to think…I have to let you go, even knowing they will stop your heart. It goes against nature.

My chest would tighten, a tear would slip, but then she would throw up again and I’d move into action.

While I was terrified of the pain and risks involved in handing her over. The emotions were not all negative.

If you can believe it, I even had some excitement. I was excited and eager for life on the other side, life after her big repair.

There was so much hope for an easier future, less intense care needs, and greater stability.

To get to the other side, however, was a very complicated and risky surgery that I couldn’t ignore.

Risks that could change her life for the worse. Chances were in our favor that things would get better, but there was no guarantee. When you’re already living in the <1% chance, those 1-2% risk factors seem a whole lot more real.

One day, a week before my daughter’s scheduled second open-heart surgery, I took to the page. I did this several times throughout the first couple of years. Writing helped me process some of my challenging emotions.

I settled into our chair, set up with two pumps and tubing – mine and hers – a breast pump and a feeding pump. This necessary routine forced me to pause for a brief period. And with this pause came many thoughts. Sometimes productive, sometimes anxious, sometimes nostalgic. Sometimes racing, sometimes creative, and sometimes appreciative.

A week before my daughter’s surgery, these are the thoughts that came to me. And, spoiler alert, her surgery didn’t even happen then as scheduled. We went on to live in this purgatory for an additional 2.5 months.

To the heart warrior moms

Fellow heart mamas, if you are a brand new heart mom prepping for your baby’s first heart surgery, their third or even fifth, I see you. I know how you’re feeling. It’s not easy and doesn’t get easier. I’m sorry you have to endure this unfair reality.

If you’re able to find any sliver of time to pause and reflect, I urge you to do so. Allow time and space for the emotions. I know you’re living in ultra-survival mode, and there really is no time, but you are important too. You cannot take care of your baby as well if you do not take care of yourself.

You’ve got this.

To the families and friends of heart moms

I hope reading this offers you a little more insight into the mind and world of a heart mom. I know it feels impossible to imagine and you might feel like you could never handle this. I know, because before I entered this world, I couldn’t imagine such a reality or being able to handle these things.

But a heart mom doesn’t have a choice. She’s playing the cards she was dealt in the best way she can. It’s an unfair reality. And she likely needs more support. This is where you come in.

Rally a village of supporters to help the family impacted by CHD.

To help heart parents get through their baby’s hospital stay, consider putting together a hospital care package for them.

If you have a family member or friend who’s a heart mom to a heart warrior baby, consider your words carefully, say this and not that to her.

Final thoughts

There is no choice. I have to be ready even if I’m not. There is no option to wait until we feel ready. They tell us when to be ready when we have to go.

The choice is between a chance at life and death.

Even though I’m not ready, I have to be because I am a Heart Mom. There is no choice in this matter.

There is no cure for Congenital Heart Disease. Some Congenital Heart Defects can be repaired, but someone with CHD will still need to monitor and manage it for life.

A life-saving heart repair cannot wait. As a heart mom, you have to endure the heartache to give your baby a chance. And yes, it is worth it. This is CHD.

Don’t miss!

• Supporting parents when their baby needs heart surgery
• Say this, but not that to a heart mom
• Creating a hospital care package for parents
• Becoming a heart mom during pregnancy
• A heart mom’s birth story
• Guide to CHD