Sharing Nora’s Story to Raise Awareness About NEC

Written by Nora’s parents, Johnny and Cassey

We sat down to start writing Nora’s story on the nine-month anniversary of her passing. It felt fitting to spend our 4th of July sharing our girls’ story in her honor. 

Nora wasn’t born early because she was sick. She was born early because I was sick.

Nora was born at 23 weeks and 5 days, weighing a small but mighty 1 pound 3 ounces. She was born via emergency C-section due to my HELLP Syndrome diagnosis. A few days after her birth, I learned what a true miracle it was that we got to meet our sweet girl at all. Many hospitals aren’t equipped to save babies less than 24 weeks old. Had I been at a different hospital an hour away in any direction, I may never have met Nora alive. 

Thanks to the hospital, my primary care team, my L&D team, and the NICU staff, Johnny (my spouse) and I got to know her, including her perfectly almond-shaped eyes. We have pictures and videos of her. We know that Nora snored like her mom (earning her another nickname, Snora). We know that she slept like her dad with her elbow in the air and the opposite hand over her face. We know that Nora had a perfect sweet-and-spicy personality. We got to know our daughter on the deepest level, all because of where we were.

Our NICU stay was mostly normal. Nora had good days and bad days, but the good outweighed the bad. She was stable. Nora acted exactly how her care team expected an uber-micro preemie to act. We celebrated increased feedings, dirty diapers, and PICC line removals. We read stories to her, helped care for her everyday needs, and sat perfectly still for hours during kangaroo cuddle sessions. To this day, our little peanut is loved endlessly.

For about a month, we kept going two steps forward, one step back. Nora started improving so much that we began talking about removing her ventilators. Despite a little bit of osteopenia, or thinning bones, our medical team believed she was stable enough to try breathing on her own. The osteopenia would be monitored, and dietary changes would be made if necessary.

Nora spent two wonderful days not only breathing on her own, but thriving. She wasn’t even two pounds! It was a lot less intimidating to hold her without all of the medical equipment attached to her.

Sunday, October 3rd, 2021, we had a BIG day filled with storytime, a video chat with family members, kangaroo cuddles, and (my favorite part) her first big girl bath. Due to the medical equipment, she previously needed sponge baths, but because she was off the ventilator and her skin was getting healthier, we were able to bathe her in the tub. Our girl hated the bath at first, and in typical Nora style, she let everyone know it. That bath became such a monumental memory of our NICU stay. It was a taste of normalcy, a new way to bond, and the first and last time we heard our baby cry.

Post-bath, our spunky girl was so relaxed, she slept better than she had in a long time. Around 3pm, Johnny and I decided to go home and let her rest. Around 8 p.m. we got a phone call from our night nurse saying Nora was struggling a little. We were told this can be normal when a baby gets off their ventilator — sometimes, they get tired of trying to breathe on their own and need a little extra support. We were assured everything looked fine; they just wanted to let us know she’d be put back on the ventilator. We were told to keep resting at home; they’d call if anything changed. 

Around 6 a.m. on October 4th (the next day), we got another phone call from the NICU. We were told they thought Nora had an infection and she was pretty sick. My husband and I headed to the hospital.

What happened next is a bit of a blur. I felt like I was floating, watching the scene from above. I remember someone on the phone saying, “We have multiple critically ill babies. I need you to be more specific.”

I remember chaos and noise in what was normally a very quiet part of the NICU. I remember our medical team telling us they successfully got Nora hooked up to one ventilator, but she needed the double support from a second ventilator again. I remember a surgeon on standby in case bedside surgery was needed. 

I remember the world’s kindest nurse sitting with Johnny and me, giving us detailed information on what was happening. They were never able to reconnect Nora to the second ventilator. Her condition had deteriorated too quickly. I remember chest compressions and her medical team asking if they should keep trying or stop CPR. We kept begging them to try. Even if it meant we would have to provide extra care for Nora, even if it meant she would become disabled, even if it meant our picture-perfect family suddenly looked different. 

We begged. We prayed. We cried. After about 40 minutes of CPR, we heard the sentence no parent should ever have to hear: “I am sorry. There’s no heartbeat.” 

We lost our sweet firstborn when she was 33 days old.

Nora’s official diagnosis was Necrotizing Enterocolitis Totalis, or NEC-T. This devastating disease acted fast, impacting everything in her intestines. It had been only ten hours since that initial phone call. NEC acts not in a matter of days, but in minutes and hours. We want families to know that you can do everything right, yet NEC can still steal your baby. We were where we were supposed to be, in a well-known hospital equipped to handle micro preemies. We only fed Nora mother’s own milk. Nora’s care team — the most intelligent, caring group — checked for signs and symptoms of NEC. NEC is awful, and we cannot wait for that bittersweet day when the NEC Society declares we live in a world without this devastating disease.

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