Hi. I’m Kora.

Kora’s journey was short, but it was filled to the brim with many, many things. As a first time mom, I was rather naive to the things that could happen to us… in pregnancy and after delivery. It won’t happen to us, right?

You never want to believe that you will be the 1 in 10 who will deliver prematurely.

You never want to believe you will be apart of the 1 in 4 who lose their child through pregnancy or infant loss.

But it did, in fact, happen to us. My beautiful daughter was delivered urgently at just 27 weeks and 1 day gestation. Here’s our story…

On October 31st, I set out to my local hospital after experiencing contractions and reduced fetal moments. I had been having “labor like” contractions for over 3 weeks at this point, but I was confident they could stop it again… they had before! I also figured that the reduced movement was because of the contractions. When your baby is that small, they’re difficult to feel while you’re actively contracting.

Upon my arrival, I was taken to the OB department where they do their usual assessment and questions. Everything seemed okay until they got the Doppler out and couldn’t find her heart beat at first. Three other nurses quickly came into my room after my nurse stepped out and said she needed help with a concerning tone and appearance. One of the nurses eventually found her heartbeat, but it was super slow. 54bpm to be exact. They quickly called the OB doc, who called ultrasound to come and check. Ultrasound confirmed that my daughter’s heart rate was reliably in the 50-60’s. The OB then called out to a larger hospital with a NICU, and I was rapidly transferred in a fixed-wing plane with the expectation that I would deliver her so she could be treated for her 2:1 heart block.

When I arrived at the larger hospital, I was greeted by a couple physicians, nurses, and other supporting staff. They got me all settled and decided not to deliver my baby despite the concern for a 2:1 heart block. Her heart rate had gone up to a more appropriate range, but it had virtually no variability (0-5bmp), which isn’t favorable either. My body knew, though. At 2 in the morning on November 1st, my water broke. I was rapidly put on a magnesium drip and given steroids to try to help her lungs out. Her heart rate/rhythm became worse, but despite this they STILL delayed delivering her until the MFM doc came in at 8 in the morning to “look at things.”

When he got there, he honestly took his time to review things and come into my room to speak with me/round. It was around 12:30 when he finally came and spoke with me. Around 2:30pm, Kora’s heart became so concerning that a different OB finally opted to deliver her via c-section. She came into my room, pushed a rapid response, and my room flooded with people. They rushed to prepare me for a section while a neonatologist came to council me on what delivery this early could entail. It was chaotic and I truly didn’t understand what was happening at the time. So many people were talking to me and over each other, rapid firing questions at me, all while my nurse was tugging on my IV line as she was reaching over top of it to the cupboard to grab supplies.

Kora was delivered at 2:43 pm and the NICU took over her care as I stayed in the OR because of a postpartum hemorrhage. She was resuscitated and intubated, then whisked away.

I struggled immensely with nausea and vomiting after I got back to my room. I’m not kidding- I couldn’t even think about drinking water or I’d start dry heaving. This delayed me from being able to go the NICU to meet my daughter for the first time. Nearly 12 hours later, I finally was able to meet her for the first time and it was so bittersweet.

Meeting your baby on the outside is a feeling nobody can truly describe, but if I had to attempt to put it into words- it’s a feeling where the world stops, for just a moment. You’re filled with so much emotion, ranging from a pure bliss to an anxiety that is different from anything you’ve felt before. But seeing her hooked up to all these monitors and machines… a tube down her throat to help her breathe… it’s devastating, to say the least.

Kora’s first couple of days of life were relatively unproblematic. She got a couple of blood transfusions, and the course followed what was expected of her. But on her third day of life, she developed a grade four brain bleed. This is a significant bleed that held the ability to drastically change her course. However, her bleed remained stable, as well as her labs. On day five, I got to hold her for the first time. It was nerve wracking, but it’s the thing I was waiting for at that time. On day 7, she managed to be extubated, on accident, but successfully switched over to cpap. On day 8, her bleed got slightly worse and she held a little more of a risk for everything that comes with that, including herniating. Over the course of the next few days, she remained stable. But on the 12th day, I walked into the NICU early in the morning and was immediately greeted by a scene of chaos. People everywhere, consent papers… the devastating news of NEC that required surgery. She was severely acidotic and was intubated again. She was extremely sick. After her surgery, she seemed to stabilize relatively quickly for all she had been through. But early the morning of the 13th, she quickly decompensated. While they were coding her, I was completely alone. Her neonatologist stepped back to speak with me, and this is when I found out that they had no idea that there had been a concern for a heart block. An EKG was performed, which revealed a complete heart block. Several medications were administered and they continued to try and get her back. Eventually, the neonatologist checked her eyes and said the worst thing someone in the healthcare field could say- “fixed and dilated.” She stepped back and spoke with me, and I had to make the hardest decision I had ever had to make in my life at that point, which was to stop CPR.

She was rapidly placed into my arms and extubated and I held her for her last few minutes of life. At 6:50 in the morning, her time of death was called as I sat in that chair, sobbing harder than I ever had before, wishing that my baby would just come back. That she’d be okay. I ended up in a state of disassociation, this couldn’t be real.

My family arrived soon after and were devastated by the news as they gathered around us.

#mypregnancyjourney #prematurebaby #infantlossawareness #nicumom #nicu