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Sofia’s Story Surviving Baby Apnea

Updated on June 15, 2013

Premature Babies with 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 In Premature Babies - Treatment For Apnea In Babies

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

A Parent Of A Child That Forgets To Breath

Sofia

Please stop talking to the angels and stay here with mommy

The Power Of Touch

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.

Out Growing Apnea Monitors - The Best Apnea Monitor For Home

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.

The Ronald McDonald House

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.

Home on An Apnea Monitor

Sofia was released on an apnea monitor and pulse oximeter after 69 days in the two hospitals

Home Sweet Home

Home Sweet Home
Home Sweet Home
sleep apnea of prematurity survivor
sleep apnea of prematurity survivor

Surviving Apnea

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.

Have You Ever Had a Child In The Hospital?

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      anonymous 3 years ago

      I have she has scared me three times, 1st premature six weeks, and high jaundice, 2nd she had a convulstion and 3rd I though she would wake up but she is fine. Heart warming, much appreciated story thanks so much for sharing this because it makes you realise how lucky you are

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      anonymous 4 years ago

      A heart-warming story, I'm sure Sofia will achieve her fullest potential

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      mommateaches 4 years ago

      Your story made me tear up. Beautifully written. I can imagine it was difficult reliving these memories in order to write this. I am so glad Sofia is thriving!

    • profile image

      linsm76 4 years ago

      As a mother who, after 5 1/2 months, lost her preemie baby before he ever came home, I am happy for you that things turned out well, and now you have healthy girls rather than having to live with that fear every second of the day. 19 years later, I did have a baby girl that survived. She is 20 now.

    • profile image

      kimadagem 4 years ago

      No, but I've cared for plenty of children *in* the hospital - I used to be a NICU nurse. I know how scary that whole situation can be for a new parent (and in your case, doubly so because you had two) but I'm glad your girls got past their "early start" in life and are now doing well.

    • chi kung profile image

      chi kung 4 years ago

      wow, your story gives other people strength and hope - wonderful you shared your story!

      wish you and your family all the best!

    • favored profile image

      Fay Favored 4 years ago from USA

      Such a beautiful family. Thank you for sharing Sofia's story with us.

    • FanfrelucheHubs profile image

      Nathalie Roy 5 years ago from France (Canadian expat)

      Beautiful and inspiring story! Glad your little girl is now better

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      Tamara14 5 years ago

      I am so sorry you had to go through such pain. Yes, nothing touches me more than the sadness of sick children in hospitals. I was so lucky with my both girls I guess and I'm glad your precious little Sofia is a big strong girl now :) I wish you and your family many happy and healthy moments together.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @anonymous: Thank you for visiting

    • profile image

      anonymous 5 years ago

      What an amazing story. Thank you for sharing it with us!

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @Elsie Hagley: Thank you so much!

    • chas65 profile image

      chas65 5 years ago

      I was familiar with apnea, but had not heard of this with babies.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @chas65: Yes sir it is common in premature babies most babies outgrow it by their original due date.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @jolou: Thank you! Yes they are healthy, happy three year olds now!

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @Sonia DB: Thank you so much

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @JoshK47: Thank you for reading Sofia's story

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @MJsConsignments: Thank you for taking the time to read Sofia's story

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @flycatcherrr: Oh yes! Our house is very noisy with two three year olds and a six month old but we wouldn't have it any other way.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @designsbyharriet: Thank you so much! Yes we are truely blessed to have healthy children.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @Jogalog: Thank you for reading Sofia's story. I pray her story touches the lives of others the way she blesses our lives everday.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @CatJGB: Cat I'm so sorry to hear about your baby! Thank you for reading Sofia's story

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @Titia: Thank you for reading Sofia's Story. Sleep apnea in babies is very scary. I pray Sofia's story will help other parents who are experiencing the same hardships.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @Stazjia: I am so sorry for your loss. It is heartbreaking to hear about sick babies or babies that never get a chance to enjoy life. We expect so much joy when a new baby arrives. I think sometimes life has a way of snatching our feet from under us.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @KathyMcGraw2: Thank you so much Kathy! I so sorry to hear of your friends loss. Apnea is very scary! I know Sofia's ordeal will eventually be a memory. We have so much to be thanful for.

    • Morgannafay profile image

      Morgannafay 5 years ago

      Thank you for telling your story Gina. I can't imagine what you and your hubby must of gone through. I'm glad it's a happy ending though, and you got your two beautiful baby girls growing up and happy. :) Big HUGS

    • Elsie Hagley profile image

      Elsie Hagley 5 years ago from New Zealand

      Great lens, brought tears to my eyes. Glad to see they are doing okay now.

      Blessed.

    • jolou profile image

      jolou 5 years ago

      What a touching story. I can't imagine how hard that must have been for you. So glad your little girl is doing well now.

    • Sonia DB profile image

      Sonia DB 5 years ago

      Thank you for sharing your story, best wishes to you and your family.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @Morgannafay: Thank you for the support Shannon! It means a lot to me. We are so blessed to have three healthy, happy and beautiful babies

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @victoriuh: Thank you! Yes she is doing great she is a feisty three year old now!

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @sockii: Thank you for the visit sockii. I pray my story reaches other parents in similar situations. I know we desperately needed information and support when the girls were in the hospital.

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      Mamabyrd 5 years ago

      @luvmyludwig lm: I can't thank you enough for sharing your story! I wish I could buy you a cup of coffee and give you a big ole hug.

    • Mamabyrd profile image
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      Mamabyrd 5 years ago

      @Expat Mamasita: Thank you for taking the time to read Sofia's story

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      JoshK47 5 years ago

      Thank you so much for sharing - and, no, I haven't, though my younger brother was when he was born. Blessed by a SquidAngel.

    • MJsConsignments profile image

      Michelle 5 years ago from Central Ohio, USA

      An amazing lens and an even more amazing story! Blessed!

    • flycatcherrr profile image

      flycatcherrr 5 years ago

      Such a moving story - so glad there's a happy ending! You must just revel in the chaos of a household of healthy happy growing children, after all you've been through.

    • designsbyharriet profile image

      Harriet 5 years ago from Indiana

      You have truly been bless and I am so happy that everything turned out and your children are healthy and happy.

    • Jogalog profile image

      Jogalog 5 years ago

      I'm so glad your daughters recovered and you got through this. I was in tears reading about it as I imagined how terrible it could be.

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      CatJGB 5 years ago

      I have a friend who had a premature baby, born at 29 weeks. He's now 4 yrs old and she still can't bring herself to look at his NICU photos.

      My 3rd baby was stillborn last year, so any traumatic baby stories bring me to tears, thank you for sharing your story.

    • Titia profile image

      Titia Geertman 5 years ago from Waterlandkerkje - The Netherlands

      I've never come across a child with apnea in my surroundings. It sounds frightening, not knowing when it will occur or not. Thanks for sharing your story, it might help others, I'm sure.

    • Stazjia profile image

      Carol Fisher 5 years ago from Warminster, Wiltshire, UK

      The baby of a dear friend had a minor infection aged 10 months and she ended up with brain damage which left her with cerebral palsy. Apparently she had an inherited condition that made this inevitable if she got an infection. My friend's parents were dead and her sister was too far away so I went to stay with her in hospital. It was a terrible experience to see this baby so ill when she had been happy and healthy the day before. I had to be strong for her parents. They didn't know if she would live or die or, if she did survive, how much brain damage there would be. It turned out she was badly affected physically but not intellectually and is now 13 years old.

      Your story made me cry particularly as I had a stillborn baby and suffered so much grief. She would be 38 years old now if she had survived.

    • KathyMcGraw2 profile image

      Kathy McGraw 5 years ago from California

      I have a friend who lost her young son to this, then her twins were born with problems. It is hard, and no one that hasn't gone through it can totally understand. Glad to hear that Sophia outgrew it....and hopefully you get to the point where it is just a memory and not a heartache.

    • victoriuh profile image

      victoriuh 5 years ago

      My nephew struggled with sleep apnea after he was born, but it wasn't as severe as your daughter's. I am so thankful that she is doing better.

    • sockii profile image

      Nicole Pellegrini 5 years ago from New Jersey

      A touching and beautiful story. Hopefully it will give strength and support to other parents who may be facing similar challenges.

    • luvmyludwig lm profile image

      luvmyludwig lm 5 years ago

      Ok, I''m crying now. I feel for you and your family. I don't know your exact struggles, but I've been there. My son was born prematurely, but thankfully he was a big baby even though he was early. His lungs were not ready and they collapsed the day after he was born. He was air lifted to a children's hospital the day he was born because he was struggling to breath. I had just turned 18. I signed myself out of the hospital the next day against dr's orders after a c-section and rode 3 hours away to the hospital.

      I stayed at the ronald mcdonald house. "Our bodies had betrayed us and our children were paying the price." that sentence is the first time I've heard someone express that feeling so well. I spent my time at his bedside when they'd let me and in the nursing room alone hooked up to a pump when I wasn't at the ronald mcdonald house. I spent my time clutching that little blanket doll they gave me to wear at night so he'd get to know my smell. Even when there are other's around that is the loneliest feeling in the world. To just not know if your child's going to pull through...to feel guilty and wonder what you'd done wrong....it's too much for any woman to go through.

      We were lucky, my little guy went home when he was 2 weeks old, the day before I graduated high school. For the first few years bronchitis and breathing treatments were our constant companions. He's 12 now. Due to the high levels of oxygen he received at birth (they think or either he was born that way) he's missing 85% of his hearing. They believe it's due to nerves being damaged from the high levels of oxygen.

      I'm not meaning to write a book here, but I just wanted to let you know that you're not alone. It's ok to still think about that time, it was traumatic, even 12 years later I have my days where I feel that guilt and shame again. I know in my head it's nothing I did, but it's not easy to put out of your mind. I still cry especially when I hear about other angels like yours, but it's not as often now. Many hugs to you and your family. Your girls are beautiful!

    • Expat Mamasita profile image

      Expat Mamasita 5 years ago from Slovakia

      An amazing story. Thank you for sharing it with us. xx