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My Journey as a New Heart Mom

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Twenty-six weeks ago, I was numb. I had just walked out of my anatomy ultrasound and had been told something was wrong with my baby and I needed to come back the next morning for a fetal echocardiogram. My husband and I drove home in silence, we cried, we prayed, and we held each other.

Twenty-six weeks ago, I was elated. I had just sat down with an ice cream cake, my favorite pregnancy craving, and opened the envelope that held our baby’s gender. My husband looked up at me and said, “It’s a girl!” We cried, we smiled, we prayed, and we named her.

That next morning, I was terrified. The cardiologist was saying a bunch of terms I didn’t understand to the tech. We waited for her diagnosis. She had hypoplastic left heart, double outlet right ventricle, pulmonary atresia, and a hole in her heart. She also had heterotaxy, an organ disorder. I couldn’t breathe. We walked out of that room steadfast in our journey to keep her and to love her for as long as we possibly could. I collapsed in my husband’s arms. I adjusted every expectation I had for my daughter’s life and my own.

That afternoon, I was a sponge. I soaked in every single piece of knowledge I could on her conditions. This was not good. The outcome looked bleak. I learned the terminology. I learned the surgical pathway. I learned the survival rates. I found the miracle stories.

baby wrapped in heart blanket

Eight weeks ago, I was numb. Literally. My epidural had really kicked in and I was being wheeled into the operating room for an emergency c-section. My daughter’s heart rate was showing distress with each contraction. We couldn’t wait any longer. My husband got into the gear. I kissed my parents. This was happening. We waited with bated breath.

Eight weeks ago, I was elated. Before the doctor could even tell us she was born, we heard her cry and scream. This was the greatest feeling in the world — especially when you don’t know if your baby will be born able to breathe on her own. My husband went to be with her and I talked to all of the doctors about my daughter. They came out to tell me she had red hair, on Saint Patrick’s day! I laughed.

That next morning, I was terrified. We were going to meet with her surgical team for a plan. I was also hoping I could hold her and wasn’t sure if I was going to be allowed. The team gave us their new plan, and we knew she would be having surgery within the week. I didn’t even know my daughter yet and I was signing consent for procedures. I asked to hold her, and they said yes.

That afternoon, I was a sponge. I soaked in every single moment of my husband and I holding our daughter. I watched her grandparents hold her. I took hundreds of pictures. I was beginning to think my daughter might be a miracle story. I was in love, completely.

Seven weeks ago, I was numb. I was handing over my 6-day-old infant for open heart surgery. We stayed up all night, rocking her and cuddling her. We took even more pictures. We walked her to surgery, as far as they would let us go. We talked to her surgeon. We waited. We paced. We cried. We prayed.

Seven weeks ago, I was elated. The nurse called, she was out of surgery and had done well. We could go see her in about an hour. We met with her surgeon and he explained that her surgery was successful and that he was able to close her chest and he felt confident she would bounce back quickly. My daughter was a rock star.

That next morning, I was terrified. She was still intubated. She was still hooked up to a million wires and tubes and medications. Would she ever be healed? How long would we be in the hospital? I prayed to be able to hold my daughter again, to be able to feed her. We took shifts at her bed.

That afternoon, I was a sponge. She was having a speedy recovery suddenly. I was listening to every nurse and doctor explain when tubes would be pulled, what medications she would be on, and how soon I could hold her.

Yesterday, I was numb. I was numb because when you have a chronically ill child, you can never fully exhale. You are always waiting for something to go wrong. I checked her weight, her temperature, her heart rate, and her oxygen saturations, all numerous times. I drew up numerous medicines every time my alarm went off.

Yesterday, I was elated. We hit our feeding goals and weight gain. She smiled at me more times than I could count. We went for a walk and she slept. She did tummy time and she didn’t scream the entire time. We hit milestones we were never guaranteed and I was sure we would never see.

Tomorrow morning, I will be terrified. Every single day, I live with the fear of losing my daughter. I live knowing her heart is incredibly fragile and that her organs are complex and could misfire at any moment. I will pray and I most likely will cry. I will over-analyze every single second of the day.

Tomorrow afternoon, I will be a sponge. I will soak in every single thing, good or bad. I will take hundreds of pictures and videos. I will share her story and listen to others. I will fight with her and for her. My own heart will hurt because of how much I love this child. I will realize that my daughter truly is a miracle.

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Originally published: May 14, 2017
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