At our 20 week ultrasound; the tech seemed to be struggling with something. She said she couldn’t get good angles on some of the organs; but she would get the doctor to check. We kept joking that the baby was already being difficult and waited for the doctor.

Within minutes of the doctor looking, she said she didn’t like what she saw. The baby definitely had heart defects and her organs were mismatched in her body. They scheduled us for a fetal echo the next morning. It was the longest night of our lives.

The next morning and then with a subsequent appointment at CHOP, our baby was diagnosed with 5 different heart defects, including hypoplastic left heart; as well as heterotaxy, an organ disorder. After them telling us all of the issues and the surgeries and survival rates; they asked if we wanted to terminate the pregnancy. My husband and I didn’t even look at each other and both said “no, that’s our baby” at the same time.

Little Lucy is a week old today and has already had her first open heart surgery. She’s a complete fighter; she’s already attempting her first bottle just over 24 hours after her surgery. She has already exceeded every expectation. We have been able to feed her, bathe her, hold her. I’ve experienced more love in 7 days than I ever knew was possible.

She will definitely need at least 2 more open heart surgeries and we need to watch her other organs to make sure they continue to function in their chosen places; but she’s here and she’s thriving so far.

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