I'm Jayme, married to Aaron who is in the USMC, WAHM...
In 2001, our daughter, my fourth child, Raime, was stillborn.
After Raime died, I had a miscarriage, and then we went on to have two more children, Olivia & Amelia. Then we decided we'd like to have one more... and started TTC & got pregnant right away. Unfortunately I had another miscarriage.
Not long after that, I got pregnant with Elora. This was my worst pregnancy- I had every symptom in the book. I had morning sickness, I had bleeding, cramping, you name it. They kept thinking I was miscarrying, or that her placenta was low & causing me to bleed.
At 23 weeks I was admitted to the hospital with preeclampsia. While it didn't get as severe as it did with Raime, they decided to do an emergency c-section at 25 weeks because her placenta wasn't functioning correctly. They thought she'd be safer on the outside- she had IUGR, and if the placenta shut down any further, it would kill her.
Elora was born weighing only 500 grams- they don't save babies weighing any less than that. Elora was a feisty baby- she had several complications due to her prematurity, but one thing she didn't have was any brain bleeds. I just *knew* once she got past all the other stuff... she'd be fine. As long as she was mentally sound, she could catch up physically.
Elora had several surgeries- she had digestive issues so they had to do exploritory surgery on her and discovered she had a meconium plug and a perforated bowel. She had a PDA ligation surgery. She had a second surgery on her intestines... and was finally digesting properly at 6 weeks old. She extubated herself one day, and we learned she didn't need the ventilator any more, she was fine on Cpap. Every day she got bigger and healthier.
Saturday, two days before she died, Elora was doing amazing. There was talk about upping her feeds, she was pooping, she was on 21% oxygen (room air)... The doctors and nurses were singing her praises.
Sunday morning she was doing so well they took her off of CPap & put her on the nasal cannula. That afternoon, NICU had called and said Elora was acting sick, and one of us should come down. The only other times they called us to come was for her surgeries.
I got in the car to drive down there & on the way got a call from Dr. N who did her surgeries on her intestines. They suspected NEC & he wanted to get in there ASAP and see what was going on, and hopefully save enough of her bowels for her to be OK. She was back on the vent.
I sat in the family room alone waiting for news of her emergency surgery. I just KNEW she'd be ok- I was thankful Dr. N came right away & could work his magic on her. She'd come through 3 surgeries just fine, what was one more?
He came in to see me after he was done, while they were getting Elora settled back into the NICU to tell me her bowels looked wonderful, there was nothing wrong. They weren't sure what the problem was... then the regular NICU doctor came in & told me that Elora had started developing a rash that is indicitive of a gram negative infection and that meant it was very severe. They put her on four different antibiotics, and wanted to do a spinal tap to check for meningitis, but she wasn't stable enough. They told me the infection was in her bloodstream, and it was sepsis. I still knew she'd be ok. She was our feisty fighter.
I sat with her most of Sunday night. Her blood pressure was dropping so they were giving her tons of fluids (saline) and blood products (platelets, packed red blood cells) to help increase her blood pressure in addition to several different blood pressure meds. She started swelling up to three times the size she was before. Her rash was spreading, but her blood gasses were improving slightly. She really was going to pull through!
Monday morning Elora's heart stopped. They were able to get it going again with chest compressions... it kicked in right before they were about to give her medication to get it going again. Aaron and the kids came down to be with Elora. We spent the day with her, watching her get sicker & sicker. Around dinner time, when they do the shift change, Aaron took the girls & Owen home to get stuff so we could stay the night- we lived over an hour away from the hospital she was at. Ethan & Evan & I went to dinner.
When the boys & I got back to the hospital I went back in to visit with Elora. Her blood gasses weren't improving any more & her heart rate was very high. She wasn't peeing any more despite the tons of fluid they were pumping in her, her kidneys were shutting down. Her heart rate had been slightly elevated all day, but it was starting to decrease.
It got low enough for them to start chest compressions again. There were so many doctors and nurses working on her tiny body. They kept giving her the meds to start her heart, but it wasn't working. No oxygen was getting to her brain. After watching it go on for what felt like forever, I asked them to just stop & let her go & let me hold her. Aaron hadn't come back to the hospital yet, he was still driving & on his way.
The doctors & nurses cried with us. They said they didn't see it coming, she had been doing so well. She was only 8 weeks old.