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Heart Warrior Stories Robin A.

This is a story about baby Max. His mommy is Katie, my daughter. I’m Na (short for Nana) – the name given to me by Max’s big sister Olivia.

I remember the day I went with Katie to her monthly cardio appointment. After the fetal echo, the cardiologist drew us a picture and explained that baby Max had Dextrocardia, atrial situs invertus, atrial ventricular septal defect, double-outlet right ventricle, upstairs/downstairs ventricles, heterotaxy syndrome. She was so sorry and explained what to expect after Max was born and sent us home with information. I left in shock but with a mission to tell everyone that I knew and met to pray for baby Max. I attended the final 3 prenatal visits. The last one was on September 28.

Max was born on September 29, 2020, during the global pandemic. Within one week the doctors were pleased with how well he was managing on his own. The anticipated PA band surgery was put on hold and Max was discharged after 12 days – much shorter than previously expected. Our little heart warrior rocked the NICU during a pandemic.

Big sister Olivia was happy to have her baby brother home, although she did say he cries a lot. But that’s what most babies do.

Weekly pediatric and cardiologist appointments continued during the first month Max was home. Although you couldn’t tell from pictures there was anything wrong with him, but on the occasions, we could see him you could tell his little heart was working hard.

On December 23, 2020, during Max’s weekly cardiology appointment he went into respiratory arrest. He was admitted into the ICU and on December 26 he had his first surgery to put a shunt in. Thankfully Katie is close to the hospital and both sets of Olivia’s grandparents so she could spend every day and most nights with Max. Everyone was kept updated via social media, phone calls, and video chats. I can not thank the doctors and caregivers at Monroe Carell Jr. Children’s Hospital at Vanderbilt enough.

Amazingly Max was discharged 24 days later.

Yesterday, January 31, was Katie’s 30th birthday. I’m so proud of how she has taken on all of the responsibilities that come with CHD. It will be a long road of doctors, medications, surgeries, but I know that Max is in great hands.

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CHD baby with mom