Isabelle’s Story

On October 6, 2016, I had a routine ultrasound. Everything looked great! Our baby was a healthy weight, had a strong heartbeat and was in a perfect gender-revealing position. I was overjoyed to find out we were having a little girl and could not wait to share the news with my husband. I ran home with a pink, sparkly cupcake and a balloon proclaiming, “It’s a Girl!” It was one of the happiest days of my life. I wish I could have relished in the moment just a while longer.

isabelle premature babyMy life turned upside down two weeks later. On October 20th, I started experiencing cramping and other worrisome symptoms. I was referred for another ultrasound where I was told the baby was fine and that I could head home. The next day, my symptoms were back but associated with strong contractions. I was admitted to the high-risk pregnancy ward of our local hospital where attempts were made to stop the oncoming labor. The treatment and medications worked but only for a few days. On October 25th, the day I was preparing for discharge, I knew something was wrong. I voiced my concerns to nurses and the high-risk pregnancy fellow but they were disregarded when the decision was made to release me. My OB-GYN had not even been consulted at the time.

Later that evening, my husband took me back to the hospital. I was in labor and there was no stopping it. Isabelle Grace Casey was born shortly after 12 AM on October 26th. She was 23 weeks old, weighing a mere 1 pound, 6.9 ounces, which is about the size of a chicken breast. For such a small baby, she was incredibly fierce. She came out kicking and screaming, and earned an Apgar score of 8.

Although she was strong, her 150 days in NICU were incredibly painful. We lived in constant fear she might have brain damage, intestinal perforation, an infection, heart disease or lung failure, among a host of other issues. Isabelle lived in a closed incubator for 4 months, and an open crib during her last month. She was covered in Aquaphor to help protect her very delicate and fragile skin, as well as wires to monitor her heart and oxygen levels. She also had a feeding tube, IVs to transmit blood and other life-saving medications, as well as baby sunglasses to protect her eyes that were still fused together. Isabelle also developed aggressive retinopathy of prematurity, and her retina could have detached had it not been for the cutting edge treatment provided by the ophthalmologists at Inova Fairfax. Throughout her stay, Isabelle was often referred to as a “rockstar” because she was so tough, to the point where she would remove her wires and feeding tube, and would confuse her doctors, nurses and physical therapists by shifting positions completely unassisted. She was feisty and determined to live from the outset.

Isabelle and ToddThroughout our NICU journey, we received unwavering support from the March of Dimes’ volunteers. With friendly smiles, they were always willing to listen. Many were former NICU parents and could empathize with our experience. They organized plenty of activities, offering a welcome distraction from our terrifying ordeal. At one event, I remember receiving a blanket and a baby hat. In my mind, it was the first tangible sign that Isabelle would actually be coming home!

Today Isabelle is a happy, curious and tenacious little girl who keeps us on our toes. She has blown through some of her milestones – walking at 11 months, self-feeding with a spoon and putting together 2-word phrases at 20 months.

I support research being done by the March of Dimes into underlying causes of preterm labor because I dream of a world where all babies are born at term. Preterm birth is the leading cause of death for children under 5 and I want to see this statistic improve. In our case, a preterm labor cause could not be identified and our only takeaway was “sometimes bad things happen to good people.” No mother should ever have to hear this, and no mother should have to wait two full weeks to hold her baby for the first time, not knowing if it will be the last.

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