At the age of 31, Jessie Shuler was preparing for the birth of her first child. Despite being classified as a high-risk pregnancy due to antiphospholipid syndrome -- an autoimmune disease which causes improper blood flow and can cause development problems or even miscarriage -- Jessie remained calm and filled her days with preparing the nursery, working, spending time with family and reading all about ‘what to expect.’ However, no amount of preparation could have prepared her for what was to come.
On April 28, at just 26 weeks in her pregnancy, Jessie was at a routine appointment with Physician Partners – Maternal Fetal Medicine Specialists.
Specializing in the care of both high and lower-risk pregnancies, maternal fetal medicine specialists screen, test and monitor baby’s developments while working to manage complications and provide patients with the critical support needed during their pregnancy.
During her appointment, Jessie noticed something different she had never experienced before. The nurse’s casual demeanor had suddenly shifted.
“Every appointment is the same,” said Jessie. “The nurse does an ultrasound while we chat about updates, she reviews the screen, points out different developments, prints photos and gives them to me before the doctor comes in. This appointment I knew something was up. Instead of handing me the photos the nurse told me she had found something and excused herself from the room. Once the doctor entered the room I started to feel a familiar worry.”
Exactly one month prior, Jessie and her husband, Garet had received the news that her sister-in-law had lost her baby. Just five weeks behind Jessie’s due date, her sister-in-law’s experience and loss of her nephew was unbearable. The strength of their family carried them through the coming month but the fear and feeling of worry quickly returned when Jessie got the news she had dreaded.
William Dobak, DO, at Physician Partners – Maternal Fetal Medicine Specialists met with Jessie and explained their findings. Ella Kate’s heart, although healthy, was not getting the proper blood flow it needed to her umbilical cord. His recommendation was to admit Jessie to Tallahassee Memorial Hospital to get steroids which would help to mature her lungs.
Just 12 hours later Jessie was informed Ella Kate’s oxygen levels had begun to decrease. The possibility of having to deliver early was now a reality.
“An ARNP from the Tallahassee Memorial Newborn Intensive Care Unit (NICU) came down and met with us to explain what we could expect when delivering this early. I braced myself for the understanding that her skin would be thin enough to see through, she would probably fit in my hand, I wouldn’t be able to be with her for the first few hours after delivery and she would need around the clock care for months.”
Fewer than one percent of babies will be born before 28 weeks. In Ella Kate’s situation, she was one of 28 “micro preemie” babies to be born at Tallahassee Memorial HealthCare in 2017.
“All babies born at 26 weeks gestation will need help accomplishing the things they will be able to do on their own in a few short weeks,” said Judith Danford, BSN, RNC-NIC, Nurse Manager, NICU. “It doesn’t mean they are sick, it just means they are early.”
The NICU cares for over 600 babies each year who require specialized care. Whether they arrived too early or have health problems at birth the dedicated team of neonatologists and specially educated nurses provide the highest level of care at the region’s only NICU.
“Ella Kate made up her mind that she wanted to enter this world early and despite the little amount of time we had to prepare, the staff at Tallahassee Memorial made sure we were informed, comfortable and as ready as we could be,” said Jessie. “They were really so kind to us.”
Once Jessie and her husband, Garet were prepped, their doctor, Adrienne George, MD, OBGYN at Tallahassee Memorial HealthCare decided to schedule her C-section two days later on April 20th.
“Being that I wasn’t in labor, I was really nervous. I had some time to prepare but I had never done this before so having the support from the doctor, nurses and my family was so important along with my faith. Dr. George, Debbie White, ARNP and all of the nurses were so calm and helped set the tone for the room.”
At 1:12 pm on April 20, Ella Kate Shuler entered the world weighing just over one pound ready to give it her all.
“Debbie White who helped Dr. George in the delivery said Ella Kate came out kicking. All of the nurses assured me she was going to be a little fighter,” said Jessie.
Immediately after delivery Ella Kate was shown to Jessie and Garet and taken to be cared for while Jessie went into recovery. A few hours later the two were reunited and their journey in the NICU began.
“Once I was able to finally hold Ella Kate I couldn’t believe my eyes,” said Jessie. “She fit in the palm of my hand. I had dreamed of this moment for so long and was overcome with joy that she was finally here. No matter how small she was, my heart was bursting and I knew that I would do anything and everything to ensure that she made it through her NICU stay. She was so tiny but so strong. She is my miracle.”
Their 115-day stay in the NICU was one that will leave a mark on their family forever. Spending roughly 12-15 hours a day in the NICU with Ella Kate, Jessie connected with their team of doctors, nurses, lactation specialists and felt like they had a new extension of their family. With a complete team of doctors, nurses, lactation specialists and more, Jessie knew Ella Kate was being cared for by the best.
“We had everything we could possibly need and I knew we were being cared for by the absolute best. The nursing staff would go above and beyond to make our home away from home as comfortable as possible. Every single person was so thoughtful. I remember one nurse in particular, Kristy Cooksy, RN, would always do certain things around the holidays to make them as special as they could be. We were in the hospital for Mother’s Day, Father’s Day and 4th of July and Kristy would make art or pictures with Ella Kate so we had little keepsakes when we went home. It was so kind of her.”
A major turning point in their time at the NICU was when Ella Kate learned to eat on her own. Like most premature babies, Ella Kate had a lot to learn before she could accomplish this difficult task.
“For all babies in Ella Kate’s situation our first area of focus is the most important – which is breathing,” said Judith. “Once they get the support they need for breathing, and their respiratory system catches up, then we can concentrate on the next priority, which is eating. The biggest challenge for a pre-term baby is coordinating the tasks of sucking, swallowing and breathing. This is a very complex activity at this age. Their central nervous system has to be mature in order to accomplish what is needed, which is why we rely on the feeding tube initially.”
In most premature situations, a nurse will offer the baby their first bottle. The first feed is the time for assessment of the infant’s ability to successfully suck. Because the danger of choking is high, the experienced nurse is much better able to handle this milestone. Kristy sat with Ella Kate and patiently offered up her first bottle. The moment she started drinking, there was a unified sense of peace in the room – everyone felt a huge sigh of relief.
“We all just stood there and cried together. It’s really unexplainable when you watch your child drinking on her own after months of being on a feeding tube,” said Jessie. “Kristy was so sweet and saved that bottle for us marking how much she drank so we could keep it forever. This was a major moment for us because we knew she was almost ready to go home.”
On August 13th, Jessie and Garet received the news that Ella Kate was ready to go home. Although their experience was had been nothing like they had anticipated, they wouldn’t change a thing about it.
“You can’t begin to understand the emotion you go through during this process but the amount of support we received from everyone at Tallahassee Memorial HealthCare was what carried us through. We spent every day together and I have nothing but amazing things to say. The entire team of nurses, along with the doctors and support staff are all family to us now. I can’t thank them enough.”
