Sometimes six years in the CHD world does not seem like an awfully long time, and sometimes it feels like we have been here forever. When I think back on the early days of my daughter’s diagnosis and birth, I am amazed at the obstacles we have overcome.
We would learn something was amiss during the 20-week anatomy scan. My husband, oldest daughter and I headed to the doctor’s office not expecting anything unusual and trying to get the oldest excited about being a big sister. We left with an uneasy feeling and an appointment with a high-risk doctor.
The next week, we heard words that completely shattered us, “There’s something wrong with the baby’s heart.” From there we were directed to a pediatric cardiologist who formally diagnosed the baby with pulmonary atresia and hypoplastic right ventricle. Except for our parents and siblings, we told no one the baby was ill. We lived with the guilt and unknown from May to August until we finally had enough information to tell extended family and friends. It was a scary time living in the unknown, but at the same time, I am eternally grateful for the technology that allowed us to know early. It allowed us to prepare for her birth by having a team in place and being at a hospital that could help her immediately upon her arrival.
August arrived and so did our warrior. That was probably the worst day of my life thus far. I was filled with anxiety, and I just wanted to be pregnant forever because I knew she was safe there. We had been warned that she would be blue at birth and would most likely not cry upon being born like heart healthy babies do. The doctors were right and wrong … upon arrival she let out a mighty cry, which surprised everyone. According to my husband, as soon as they cut the umbilical cord she was “blue as a Smurf.” I was able to get a quick glimpse of her (through my tear-stained glasses) before they whisked her away and passed her to the NICU through a window in the OR. It would be three hours before I got another glimpse of her and two days before I would really be able to see her. But I think back on it, and I think her cry was saying, “Mom, I’m going to be OK.”
She was 8 days old for her first open heart surgery. Though everything seemed to have gone according to plan, the 3 a.m. phone call from the hospital said otherwise. We were asked to come to the hospital immediately, something had gone wrong. My husband and I arrived as quickly as we could (I was still moving quite slowly recovering from the C-section).
The surgeon was already at the hospital trying to figure out what had happened, and we were immediately kicked out to the family waiting room. We sat in the waiting room watching as medical personnel came running up the hallway, some half-dressed, some with equipment. My heart sank because I knew they were going to my baby’s room. Finally, the surgeon and the on-duty cardiologist came to speak with us. We were informed that a clot had formed in the shunt, so they took it down, cleaned it out, modified it and replaced it. However, her pressures were too high, and they had to leave her with an open chest on ECMO. I really thought we were going home that night to plan her funeral and explain to our 3-year-old why her “baby” was never coming home.
Then, I realized she was going to be a fighter. By the end of that night she was breathing over the machine, and she was off ECMO less than 24 hours after being placed on it. Her chest remained open for a couple more days until they were able to get fluids off her little body and figure out the medication that would work best for her. She was 3 weeks old when I finally got to hold her in my arms and snuggle her and look at her. I knew we had a long road ahead, but at that point I also knew she was up to the task.
Today, she is a feisty, stubborn, snuggle-loving sweetie. Her other surgeries were easier to get through (though still mentally draining) and eventually (with lots of reassurance from family and professionals) I no longer felt guilty. We live each day and have found what our “normal” is. This is not a life I would have chosen, but it chose us, and the four of us travel together hand in hand.
Catherine Lobien resides in Central Florida. She is a wife and mom of two girls. She works as a Paraeducator at the local school district.
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