Sofia’s Story Surviving Baby Apnea

I am not sure my heart will every completely heal from Sofia's stay in the hospital. I mourn for the times she was alone in a hospital crib and the times I couldn't cradle her in my arms. I hated knowing that she needed me and I couldn't always be there.

My daughters were born nine weeks premature. They were immediately taken from the operating room and placed in an isolate in the NICU. I wasn't able to see them for nearly 48 hours. It is very hard to see a newborn baby covered in wires inside of a strange enclosure. It is not how you imagine your children being introduced to the world.

Sofia is my second born child. She was born exactly one minute after her twin sister. Sofia battled apnea of prematurity for the first eight months of her life. This is Sofia's story of survival.

Photos by Gina Birdsong

Apnea of prematurity is common with premature babies.

It did not rear its ugly head in our lives until the girls were nearly two weeks old. They would both suffer the occasional episode when they would forget to breathe and their heart rates would drop.

Our pediatrician gave us daily updates on their progress. The girls were placed on low doses of caffeine, a common treatment for babies with apnea.

My husband and I were living at the hospital. I couldn't bear the thought of going home without them.

Abby was responding to the caffine. She was having less apnea spells and required less physical stimulation but Sofia's apnea spells were becoming more frequent and severe.

I can clearly remember the first time I witnessed Sofia stop breathing. We were sitting in the NICU holding the girls. The nurses were all preoccupied with a baby that was very sick and being transported to another hospital. Sofia was sleeping soundly in my arms. The pinkness of her skin suddenly turned an ashy gray and the alarms began to sound. We had been warned that she had suffered from apnea spells during the night but this was the first time I had witnessed it happen. I gently rubbed her feet and called her name but the numbers on the monitor continued to drop. My husband reached over and brisky rubbed her chest. We saw her little body gasp for air. I couldn't move or cry. I was in shock. It was as if I was watching her die in my arms but had no way to help her.This was the first of many times that we would see Sofia stop breathing

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Stimulating a Baby With Apnea

My husband asked the tough questions.

Could she suffer brain damage? What would happen if someone didn't hear the alarms? What if she wasn't stimulated?

The answers were simple. She wouldn't suffer any long term affects as long as she was stimulated within 30 seconds. The harsh reality was that she would die if no one touched her.

The Power of Touch Photograph by 2aTPhotography

We had been at our local hospital nearly five weeks when the decision was made to transport Sofia to a children's hospital.

Our doctor entered our room to give us her usual update but there was a noticible change in her demeanor. She informed us that Sofia had stopped breathing twenty two times throughout the night. They had run out of options. She was not improving. We had one day to get our affairs in order because she was being flown to a children's hospital three hours away. Abby would have to pass a car seat test before she would be released from the hospital.

I could see the worry on the faces of the nurses the morning we left our hospital. Abby had passed her car seat test but she had not made it through the night without an apnea spell. Our doctor was taking a big risk releasing her from the hospital on an apnea monitor and pulse oximeter but she knew it was best for our family to stay together. My husband and my mother would be driving with a five pound new born that had never left the hospital. I would be accompanying Sofia on the flight to Fort Worth, Texas.

I felt as if my heart was being ripped in two. I wanted desperately to be in two places at once. I feared that the neonatal team wouldn't hear Sofia's monitors over the sounds of the propellers. I worried that my husband would not be able to stimulate Abby on the highway if she stopped breathing.

Both of our daughters came home on hospital apnea monitors. They quickly began to outgrow them around 6 months of age but Sofia was still having apnea spells in the middle of the night. We purchased the Angel Monitor for her protection and our peace of mind.

Treatment For Sleep Apnea In Babies

I wish I could say that Sofia was cured from her apnea at Cook's Children's Hospital but that didn't happen. She was never diagnosed with a medical condition. She simply needed more time to grow.

The Ronald McDonald House and Cooks Children's Hospital would be our home for 29 days.

I will never forget the feeling of sitting alone in the dining room of the Ronald McDonald House. I would watch as small children would return from their daily chemo therapy treatments. I didn't want to be there. I didn't want to have anything in common with the people that wondered in and out of the room. There were many women with swollen bellies and empty arms. I knew they also had babies in the NICU. I could see the hurt in their eyes. We shared the same guilt of not being able to carry a baby to term. Our bodies had betrayed us and our children were paying the price. We all sat in silence. The absence of children's laughter was deafening.

I will never be able to express my gratitude to the Ronald McDonald house and its volunteers.

There is sadness that surrounds sick children and their parents. The Ronald McDonald House embraces them and provides a haven from the coldness of the hospital.

One Breath At A Time

Sofia has completely outgrown her sleep apnea. She is a feisty little sister to her twin Abby and a helpful big sister to her new baby brother. She has her daddy's sarcastic sense of humor that makes me shake my head in amusement. I can't imagine life without her. She has a sparkle that lights up our lives. I know she is destined for great things.

Our house is very chaotic during the day but at night there is a calmness that falls over our home. I quietly sneak upstairs and check on the girls . I can't help but place my hand on Sofia's chest. I feel her warm breath on my cheek and watch the slow rise and fall of her chest. It is summer time and her short sleeve pajama top reveals a tiny scar on her left shoulder. It is from the medical tape that tore her delicate skin when she was a baby. It is the only physical evidence of her struggle with apnea of prematurity. Our lives are very busy with three young children but we do our best to take life one breath at a time.