Zora has been diagnosed with an extremely rare Congenital Heart Disease and was unexpectedly hospitalized the week before Christmas 2021.

All donations will go to supporting Zora and her family during and after surgery. Anything helps! This was completely unexpected and the family is facing unknown expenses.

Read on for Zora’s story, originally posted by her mom on Facebook and follow Zora’s journey at https://www.facebook.com/Updates-for-Z-103804465509361

Zora and I woke up yesterday (12.21.21) around 8:30 and she wasn’t feeling well. She was a little warm, wouldn’t eat, and wouldn’t open her eyes for very long. She’d been coughing since Sunday night, so I assumed she was just dealing with a cold. I gave her to Austin and helped the kids clean their room.

At 10:30, Austin got up and I went to get Zora ready for the day. She was looking a little pale, but she’s pale in general, so I didn’t think too much of it. Still, something nagged at me. I laid with her on the couch, trying to keep her warm, but I noticed her lips looking a little purple and feeling a little cold. I wrote it off for a bit, thinking she was just cold, and I took her to lay in my bed under the covers. I googled RSV symptoms and noticed that she checked a few boxes. She was also putting more effort into breathing than usual. My gut told me to make an appointment with the pediatrician and they had one available 20 minutes later. So I took it and we loaded the kids into the car and drove over.

Once at the pediatrician, they were getting her blood oxygen levels and they couldn’t get a read above 47-50 (normal is 100) and the pediatrician heard a heart murmur that concerned him. They decided to call EMS and transport her to the pediatric ER at St. David’s North. I rode in an ambulance for the first time holding hands with my 7-week old daughter, praying she would be okay. I cried a lot.

At St. David’s, there was panic in the nurse’s eyes as she looked at Zora and saw how “dusky” she was — a delicate way, I’ve learned, of saying she was gray. I watched as they poked and prodded her, swabbed and suctioned her. RSV positive. Her oxygen was still incredibly low. I watched her vomiting bile and bubbling at the mouth. I watched them try for IV lines until her veins blew. I heard her cry for me while I could do nothing but sit and watch and cry and pray.

They put her on high flow oxygen, maxing out at 100% to help her breathe. They took blood panels and viral screens and X-rays of her chest where they saw excess fluid in her lungs. It was around this time that they ordered an echocardiogram because her murmur was so loud they couldn’t hear breath sounds on her left side. After what felt like ages of them looking at her heart, we were told she has a VSD (Ventricular Septal Defect), which is a hole in her heart between the lower two chambers of the heart. We were told that it was possible the hole would close on its own, but they’d have to do further imaging to know better what was happening. I continued crying and pretending I was okay.

I was not okay.

Enter echocardiogram number 2. Eavesdropping only gave me so much information, but I heard some alphabet soup being thrown around and knew something was up. Around this time, her breathing is still not where it should be and there was discussion of intubation and ventilation to transfer her to Dell Children’s Hospital in order to provide her better, more thorough care. Thankfully, the intubation was never necessary and she was transported on high flow oxygen.

I rode in an ambulance for the second time in my life, sitting in the front seat while the transport team talked to Zora in the back about what a beautiful girl she was. I only cried a little.

I was still not okay.

The PICU at Dell Children’s was a whole different experience. Everything was still serious, but less chaotic. I felt sure of her care, but also sure that I was going to lose my mind if anything happened to her. They did more poking and prodding and scanning and suctioning.

She was put on a bipap machine at 100%. She had a low grade fever. They needed more X-rays and another echocardiogram. Echo #3.

We were transferred to the Cardiac Care Unit. She was taken off of bipap and Precedex. She’s put on high flow oxygen - 8 liters at 70%. She was stable, cardiologists come in and talk to us.

Yes, she has RSV.

Yes, she is stable.

But she also has a Congenital Heart Defect. Not only does Zora have VSD (a hole in her lower chambers), she also has ASD (a hole in her upper chambers), and her heart flow is swapped. Her upper right chamber is connected to the lower left chamber, and the upper left chamber is connected to her lower right chamber.

Her blood flow is all over the place, there is mixing of oxygenated blood and deoxygenated blood, and her heart is working pretty hard to compensate. Her oxygen sats are low to mid 80s, which is her normal for now.

I can barely grasp that fact. My beautiful, strong, feisty girl has a rare heart condition. And she will never have a normal heart. She will need heart surgery and management for the rest of her life.

This is everything we know for now. She is currently on 6 liters of oxygen at 50%. She is off of Precedex and is wide awake and making her opinions known.

My daughter is strong.

My daughter is brave.

My daughter will never have a normal heart.

My daughter will need open heart surgery.

My sweet Zora Lucille.

And that’s okay.

Because I’m her momma, and I’ll be her rock. Even when I’m crying and praying.