by Kim and Jon Avila

(Reprinted with permission from "Preemies Today," November 2005.)

(Editor's Note: Kim and Jon Avila are long-time members of the ACB. Both were scholarship winners and currently belong to the Old Dominion Council of the Blind and Visually Impaired.)

Katelyn Elizabeth arrived at just 26 weeks gestation on Nov. 16, 2004, National Prematurity Day. The couple of hours I spent in the hospital before Katelyn was born, I reflected on my career as a teacher for the blind and visually impaired and all of the students I knew who have retinopathy of prematurity (ROP). Despite my anxiety, remembering my students gave me hope that my daughter would lead a healthy life.

Yet, when the obstetrician told me I had to deliver immediately, my heart sank and the tears poured from my eyes. Even though many of my students were born earlier than Katelyn, I still feared for her life. I knew the chances of healthy survival were in our favor with medical advances to treat premature infants, but it was still devastating. My husband, our pastor, a neonatologist and I all prayed for Katelyn's well-being.

Katelyn came into the world weighing 1 pound 14 ounces and was 13 inches long. The first minutes of her life progressed as expected for a 26- weeker; later, this would not be the case. As my husband and I made our way to the Neonatal Intensive Care Unit (NICU), the neonatologist who prayed with us earlier met us at the door to deliver the news. Katelyn had a very rare and life-threatening pulmonary condition, her blood pressure was barely registering and about 30 other things were wrong that I couldn't comprehend. The doctor explained all of their efforts to save her precious life were failing and one final attempt with an experimental nitric oxide therapy would be made. If the treatment did not work, Katelyn would not survive. They let us see her for a few minutes before making us leave. For the next two excruciating hours we were not permitted back in the NICU. Once we were allowed back in, another physician met with us and explained that Katelyn had started slowly responding to the nitric oxide. He listed many concerns about her health and the very prominent threat of her not surviving, but she was fighting very hard to live.

Minute by minute, and after countless prayers, Katelyn began to improve. Within six days the oscillating ventilator and nitric oxide were removed. Her blood pressure began to stabilize without the help of medication and all other ailments were showing signs of improvement. Later, head and heart sonograms revealed no sign of hemorrhaging or damage, she passed her hearing test, and she does not have ROP.

Throughout the 70 days we spent in the NICU, Katelyn's doctors and nurses warned us that Katelyn would be in the hospital for months, but she surprised all of us. On January 25, 2005, we took our precious miracle home, just 10 weeks after she was born. She was not even due for another four weeks!

Bringing Katelyn home was incredible. She was still on oxygen, an apnea/bradycardia monitor and a pulse oximeter; it took three of us to load a five-pound baby in the car! The next several weeks were exhausting, exhilarating and wonderful. I learned so much about my daughter in one night that I never knew while she was in the NICU. Katelyn talked in her sleep, she sang when she was awake and she loved to eat! Katelyn ate constantly from the second she came home until she reached 10 pounds two months later.

Week by week, Katelyn got stronger and the need for monitors and oxygen decreased. By mid-April, all of Katelyn's equipment had been removed, the kidney fluid and spots she had from birth were gone and we rejoiced that our beautiful, wireless, happy baby girl was healthy.

Every day Katelyn does something new. She gets very excited to hear and play the piano and absolutely loves swing music. She gets sad when things are too loud, but laughs hysterically at Daddy's silly faces.

Over the summer I enlisted support from early intervention services to assess and help Katelyn with fine motor skills. She currently receives occupational therapy once a week. As a special-education teacher, I know the benefits of early intervention are crucial for child development. As a mother, I know my job is to let my colleagues help Katelyn reach all of those milestones that may be a little more challenging since she had a rough start. Katelyn is making good progress with her fine motor skills and the gap I noticed in her development months ago is barely noticeable now. I remember telling many of my students' parents to be patient with their children, do not compare and not to be anxious for the future, because we just don't know if there is anything to be anxious about. Now I am following my own advice for my own daughter.

Katelyn reached one of her preemie milestones this fall: she got her first cold. Even though she was sick, she still managed to learn new things, play and be just as fun-loving as ever. Doctors are still monitoring her for other health issues that may arise from her prematurity and pulmonary condition. However, we are not going to be anxious because we don't know if there is anything to be anxious about.

Katelyn still loves to eat, but her weight gain has slowed down. At 8 months corrected age (11 months chronological) she is 15 pounds 10 ounces and is 26 inches long. Katelyn is on the brink of crawling; she loves to roll over, scoot, sit and is quite the wiggleworm. Katelyn has great language skills and is two months ahead in this area.

As I hold Katelyn while she sleeps, I can still see that tiny little preemie I held for the first time when she was barely 2 pounds. Except for some chubby cheeks, it's amazing how her facial expressions and mannerisms are just the same.

Katelyn will turn one this November! The past year has been a journey, but the 10 weeks in the NICU now seem like a small wrinkle in time. Katelyn has come such a long way and is a happy little girl with a big heart from God.

Update, January 2006: Katelyn has made great progress over the past few months. She has caught up nicely, crawls, gets into everything, pulls to standing and is trying very hard to walk. Early intervention specialists say she will most likely be dismissed from services very soon.

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