The Horton Family

The Horton Family

Linda and Vicki Horton share the NICU story of their daughter — Emma Horton.

Our daughter Emma was born at 25 weeks 2 days. She weighed 1 pound, 12 ounces. My pregnancy was a miracle from the beginning.

At age 42, via artificial insemination, I was given less than a 5 percent chance of getting pregnant. My then wife (same gendered parent family), and I decided to try anyway and see. Well, I got pregnant on the first try. We were ecstatic. My first trimester was difficult due to morning sickness, but by the second trimester I was feeling great and enjoying being pregnant.

I started to feel Emma move by week 22. Soon, we knew her movement patterns and we were reassured by my feeling her move throughout the day. All was going well until one day it just wasn’t.

I didn’t feel her move like usual and we immediately went to the doctor. After my third day of coming in saying something didn’t feel right, they could see via ultrasound that my cervix was opening. We were sent immediately to Northside, where the perinatologist told me he could feel Emma's foot. The plan was to spend the next few months in the high risk pregnancy unit until she came.

That night, a neonatologist came and explained to us what would happen if Emma was born at 25 weeks. How little developed she’d be, her odds of survival, the length of the average NICU stay. We were scared to death. They gave me steroids to speed up her lung development and IV medication to stop labor. We started making plans for me to be in the hospital for the next few months. Instead, she was born the next morning. I started hemorrhaging and they had her out within 15 minutes. Had I been home, we both would have died.

We spent five months in the NICU. It's an experience so surreal that you can't truly understand unless you experience it. It's a combination of constant terror filled with moments of great hope. The doctors, nurses, respiratory therapists etc. are not only caring for your child, but are your only guides in a landscape you can't even begin to navigate.

The smells, the constant sounds of monitors beeping, the overwhelming worry and fatigue, all become part of you. We were blessed in that we lived only 30 minutes away, so we could be at the hospital daily.

I was there 10-12 hours per day and my wife was there 6-8 hours a day while still working a full day. We did this 7 days a week for five months. I cannot imagine having to have been apart from her and not being able to see her during the week, as families who lived far away had to do.

Because we could come regularly, we were able to hold Emma. It's called Kangaroo Care: where you hold your baby skin to skin. It helps them grow and develop. But even coming daily, fear was constant. Emma was on life support for three of the five months and every morning I woke up wondering if this was the day she would die.

On day 10, her lungs collapsed. I was so distraught that I couldn't even hear the doctors. Fortunately, my wife could listen for me and tell me what was happening. I'm a strong woman, but I couldn't even comprehend what they were telling me due to the abject terror I was feeling.

The NICU is a lonely place. Not while you're there, but once you're home for the day. In the NICU, you are surrounded by the most amazing medical warriors you could ever hope for. The doctors and especially the NICU nurses are there to help parents as well as the babies. They became our lifelines. But I didn't realize that our friends and family would distance themselves from us. I understand why — it's very hard for anyone to just sit with you in that horrible space of "we don't know if she's going to live or die today" and be able to handle it.

So as most people drifted away, the amazing friends/family who stuck by us were highlighted. They cried and laughed with us as we faced an unknown abyss every single day.

The NICU is also a place of incredible hope. Miracles happen each and every day. Our doctors constantly reassured us, after countless failed attempts to get Emma off the ventilator that Emma would not go to Kindergarten on a ventilator. And on that day, three months in, when she finally came off of it, they all rejoiced with us.

Emma is now six years old and doing wonderfully. She had lots of physical, occupational and speech therapy for a few years. She went into glasses at 9 months and has childhood asthma. I'm smiling as I type the last line because in the NICU, you'll hear: if you baby ends up only wearing glasses and having asthma, then that's a blazing success.

She's small for her age and likely always will be. But I'll end by sharing what she says to us on a regular basis. We called our NICU babies (us and our amazing posse of NICU friends that we made there) "warriors," because that’s what they are. And our little warrior often turns to us and says: "I may be small, but I do big things!"

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