Just 3 months before graduating our last of 4 children of our blended family, I went to my annual appointment and was told I was expecting and was just short under 20 weeks pregnant! We knew that very day we were going to have a girl! Just 2 days later I had a few signs things were not right and ended up seeing a high-risk doctor. After having another ultra sound, I was told that I had placenta previa, vasa previa, and velamentous cord insertion. We knew from that day on that my pregnancy would not go beyond 35 weeks, but 35 weeks was our goal. At that point we knew right away that we would have a preemie and we knew what some of what would be involved. Just a year earlier, my sister and her husband had micro preemie twins who were born at 25 weeks, both weighing 1lb 10oz. We rode the up and down rollercoaster with them throughout their 128 day stay in the NICU before they were able to go home as a family. We also saw them keeping their kids in isolation from the rest of the world, and all that entailed, just to keep them safe while they built up a better immunity. We knew that this meant a long road ahead of us. But we knew at 35 weeks our baby had a good chance of being born very health and that our NICU stay would not be too long.
However, due to plecenta issues, we only made it to 29 weeks 3 days, and Jaylee Jo was born on April 17, 2018, at 5:49am, weighing 2lbs 14oz. Fortunately, Jaylee was born without big complications for us to overcome. Her biggest hurdle was just the fact that she was born early and would need her body to develop. Jaylee struggled to come off of oxygen. She did receive surfactant, a product whose research was funded for by the March of Dimes, in order to help her breathe. Once she was able to start feeding, she did not take to it very well. She had to breathe and take a bottle at the same time which was hard for her. After working with therapy on feeding, she had one incredibly great week so, we were finally able to go home after 76 days, on July 1. The day after her due date. Jaylee went home on oxygen and an apnea monitor.
However, this is not where our story ended. Once home we immediately began having feeding problems. We were on a strict feeding schedule of every 3 to 4 hours 24/7. She would barely eat and everything she did eat came right back up. She came off of oxygen September 2, 2016 and was released from her apnea monitor and pulmonary October 31, 2016. However, we started seeing OT and ST at Bryan in October due to the fact she would not take her bottles. Her weight was plateauing and she was not growing the way she needed to. She was keeping everyone including her doctors, therapists, and her family, on their toes. On December 6, 2016, she had a Nasogastric (NG) tube placed and within a week she was taking nothing orally and all her nutrition was through the tube. We had gotten the tube just in time. Even with therapy she would still not take anything orally due to oral aversion and on February 27, 2017, a g-button was placed, which she continues to have today. Our life continues to revolve around feeding schedules and therapy, but Jaylee has got to the point where she is putting food in her mouth, swallowing some, but spitting most out. She is also now drinking a variety of fluids. She still gets the majority of her nutrition from tube feedings but is making progress and continues to be able to lessen the amount of tube feeding she gets.
Our family has seen the growth of 3 miracle babies who would not be here without the research funded by the March of Dimes. Our family has been supporters of the March of Dimes since 2015 and we will continue to do so in order to help support the March of Dimes in their continued funding of medical advancements, advocacy and the much-needed resources and support they offer NICU families.
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