Photo by: SilentObserver

Surviving Prematurity: One Mom's Perspective

by Michele Brown
Photo by: SilentObserver

It was a Thursday in late August and my daughter Jocelyn and I went to the park for a play date. I spent much of the afternoon resting on a blanket while some of the other mom’s chased after the kids. I watched as Jocelyn perfected her walking skills, having just put one foot in front of the other two months earlier. I was six months pregnant, tired, and a bit more uncomfortable than I was accustomed. On the walk back to the car I started to feel pressure, as though the baby was sitting extremely low in my belly. Once in the driver’s seat, I looked down and realized I was bleeding. My daughter Aja decided that she couldn’t wait to meet us, and she wasn’t going to be bothered by a little thing called a due date.

Following an emergency c-section, I was told that I had a placental abruption. That’s the what of what happened. The why remains a mystery. And although thoughts of why still creep in between my morning coffee and changing diapers, the only way I could stand to get out of bed each morning was to put the questions aside and accept the situation as it was, and move forward. Aja weighed 1 pound, 15 ounces when she was born. The doctor said to expect that she would remain in the hospital until her original due date, which was three months away. What else we could expect would change from day-to-day. “One step forward, two steps back.” This was said again and again. I think at that moment I was still in shock, and all I really wanted to do was see my baby girl. I had been able to see her for just a moment as she was whisked by me in the operating room. When I saw her again a few hours later, she was in her incubator in the NICU. It was her new home. When you spend as much time in the NICU as my husband and I did, it quickly changes from a terrifying place to a place of comfort. It started out as a place of unrest, with beeps and alarms, and constant poking and prodding. The first time I saw a nurse handle my daughter I was horrified at how rough she flipped her over. Soon I realized that Aja was stronger than she looked.

There were days, in the beginning, that I could barely stand to be there. In truth, I continued to visit because I thought it would look bad if I wasn’t there. But for nearly a month I couldn’t hold her, and at most I could touch her hand. It was hard to watch. Looking around at other babies in the room, all bigger than my daughter, it seemed as though she would never grow. It was not long before we encountered complications. Aja had to have heart surgery to tie up an open vessel, and she did get an infection, separate from the surgery. These events happened within the first month and a half, and then we slowly started to see real progress. The nurses and doctors talk about the benefits of holding your baby, and once I was able to hold her, we really started to see improvement in her overall health. I know that we had it luckier than some of the other parents. We lived within five minutes of the hospital, and my mother had just recently retired and was able to be there whenever I needed help. The entire situation was so stressful, and I can’t imagine how much worse it could have been if we were far away or I wasn’t able to visit on a regular basis.

Through all the stress I think that it was my daughter Jocelyn that saved me from falling apart. She was so young at the time—just 13 months old—and she had no idea what was going on. She woke up each morning and needed to be fed and changed. She wanted to play and have fun, just as she had the morning that Aja was born. I had to keep her life as normal as possible, and in return she kept me smiling and laughing. In any other circumstance I may have spent hours on the Internet searching for information. Yet this was not a normal situation, and after one simple search it was clear that there was too much information out there—scenarios that could inflict a sense of fear in me that would be hard to shake. I have never thought of myself as an overly positive person, but my method was that of positive denial. I never imagined that Aja wouldn’t come home, and I had to be happy and strong for her when I visited. I also couldn’t think beyond her homecoming, for issues that may pop up in the future.

Aja has been home for four months and she’s doing great. Her milestones are smaller than other babies her age, like the moment she stopped clenching her fists, or the night she first slept with her head turned to the left rather than the right. There have been numerous doctor appointments, to check her eyes, her kidneys, and her overall health. We have regular physical therapy appointments to check on her torticollis (stiff neck) and general motor skills. There could be cognitive problems in the future that we have yet to encounter, but Aja constantly amazes me. She now weighs over 12 pounds, and she smiles constantly. She is the toughest person I have ever met, and she has taught me to be a stronger and more dedicated mother to both my girls.

Michele lives in Oakland, CA with her husband and two daughters.

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I have a grandson who was born at 25 weeks... he is now 5 years old.,we encountered problems as he grew older but the whole family including friends and neighbors were very supportive he is growing up to be a normal kid except of course for his asthma but now that he is learning how to swim his asthma attacks had been lessened..therapy ..patience and lots of hugs are all that he needs

we named our daughter Miracle because she is simply amazingly just that. Born at 28 weeks, the doctors said she wouldn't even make it that long. My water broke at 17 weeks. she's now 13 months. she's small but very she is doing basically everything a full term child is at this age except walking but she does holding on. She also had Pda surgery as well as laser eye surgery. She is healthy and a blessing. exercise with your lil one and pray over her...

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I myself have been through a similar experience, both of my children were born prematurely with no apparent reason. My son was born at 26wks weighing just 1lb 9 1/4oz and my daughter was born at 28wks weighing just 1lb 11oz! They are now 14 and 10 and live very bit the normal life! They are little monkeys but i count my blessings every day knowing how lucky i am that they are here with me today.

My daughter was born at 27 weeks, after my water broke at 25 weeks. Although we experienced many of the same ups and downs that you describe, Michele, I'm happy to report that Zoe is pretty darned typical now at eight years of age. The casual observer doesn't notice anything different. The good news is that everything you're experiencing now will all be a blur in a few years. Definitely get hooked up with local social services for early intervention with OT, PT and speech therapy, as needed...

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When I read this article it mirrored my experience to the tee. I was pregnant with identical twin girls when I had to have an emergency c-section due to pre-eclampsia at 29 weeks. My twins were also whisked away and transferred to a totally different hospital. Ava and Grace also had identical congenital heart defects. Ava spent 120 days in the NICU while Grace spent 89 days...

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our little bundle of fun was born at 28 our bathroom. she weighted only 2 pounds, 6 ounces and was 14 inches long. i had no ideal that i was in labor when i went to the bathroom at quarter to two on the morning of dec...

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Michele, I'm totally with you on the milestones being smaller and more precious. My son wasn't even as premature as your daughter or some of the other moms' babies, but I am an avid scrapbooker and have done my best at least for his first 3 years to record every little accomplishment he has made. He is almost 4 now, and with working full time and taking him to therapies, etc., I am starting to fall behind...

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I have a 29 weeker who is now 10. He is just like any other 10 year old. 99% of the time I don't even remember that he was a preemie...nor do I tell new people anymore.

Good Luck. You will be surprised how fast it goes and the NICU seems like a distant memory.

HI Michele. I read your story and wanted to say we both have MIRACLE BABY'S. When i found out i was pregnant i was very happy, didn't think i could have kids. 3mths into my pregnancy, doc told me i was going to have complications, my son kidneys weren't developing and i had low amniotic fluid my son wouldn't survive, whether i have a still birth, or he would die at the time of me giving birth. He gave me option to go thru with the pregnancy or have abortion...

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Thank you for posting your story. I too had a preemie and he was so small, it's hard to even imagine it again, but you really took me back. I remember the NICU becoming a comfort and the milestones being small but so much more important. I'm glad your baby is doing so well, and that you are too.

I, myself, was a premature baby. I was born at 28 weeks and weighed something around 2lbs. I have been well-loved and centre of my family's life. I used to get sick often when I was a kid but I got over sickness as I entered to adulthood. I have a life long blood disease called Thalassemia. I have energy issue with my body. I need to eat often or else I faint. I am 23 now.. My mom used to worry with my learning skills. Oh but I can learn just as everyone my age does...

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You are at the begining of your journey and I wish you well I also hope it only gets easier. I wanted to share the story of the young man my daughter is seeing. He too was born prematurely and is now 25 years old...

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Miralce babies are a blessing!

As the Proud parent of an ex 25 weeker, I can say we sure had everything against us. As the known cliche against all odds! The whimpy Bottom of the barrel kid I had!

Thus he wanted to have his grand debut at 20 weeks, and thank Goodness for modern tehcnology & meds, he held on 5 more weeks.

It sure has been a roller coaster ride, born at 1Lbs 8oz...

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My youngest son was born just six weeks early - labor was induced due to pre-eclampsia. He was born blue and was whisked away to the NICU. His lungs weren't fully developed, and he spent 21 days in the NICU. He was one of the largest babies there. Right next to him were twin girls born at 26 weeks who were under two pounds when they were born. They had been there three months and were at almost 5 pounds when my son was born. They went home before he did...

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My son was born at 28 weeks and weighed 2lbs even and was 13" long. It was a long road to travel and I remember all the worry and fear that would creep in each night when I had to go home without him. I had two little girls home at the time, 5 and 8, and I always felt like I wasn't giving them the time they needed, but there was only one of me! Today my son is a healthy, hearty 17 year old high school junior...

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