We are the Face of Prematurity

These thoughts about our time in the NICU have been floating around in my head for 9 months and I thought today, World Preemie Day/Preematurity Awareness Day would be an appropriate day to find the words.


Born at 31 weeks and 5 days, Penelope is the face of prematurity. We are the face of prematurity. She is 1 in 8 nationally and 1 in 10 worldwide.

This image is one I'm fiercely protective of. One I refused to even share with my sister or mom until Penelope was about 3 months old. Blake and I were very selective of the pictures we shared of Penny, cropping out as many tubes and wires/leads as possible, because this is not how we wanted our family and friends who might not ever get to meet her in person to remember her by. The hospital was in lock-down mode because of the crippling flu season and only parents and grandparent were allowed in the NICU. But her story is a story of hope and one that needs to be shared. This is no longer the first thing I think of when I think of my sweet baby girl.

I have a strong emotional connection to this photo. Even now, 9 months later, my heart beats faster, my chest tightens so much that it is hard to breathe, and of course, the tears flow like a waterfall. This was taken around 3am on Feb. 10, 2014, the morning after she was born. I had requested that my nurse wheel me down to the NICU so I could hand-delivery my freshly pumped milk and see my baby girl. As I sat there in my wheelchair, looking at my sweet girl born too small and too soon, my heart continued to break into a million more pieces. Her nurse asked me if I wanted to hold her - of course I did, who wouldn't want to hold her precious newborn baby...but I was so scared. I didn't want to hurt her and I didn't know how to hold a baby like her. This was the second time I held her, and the first time I was able to hold her more than a few fleeting seconds. It was a bit awkward with the CPAP apparatus (Continuous Positive Airway Pressure; while Penny was breathing on her own, the CPAP helped her lungs respond appropriately. After all, this is something she shouldn't have to do on her own for another 8 weeks and 2 days), her IV, and leads, but the nurse loosely swaddled her and made us both as comfortable as possible. As I sat there holding her, sobbing my eyes out, and praying with all my might, telling her I was so sorry my body failed her like it did her siblings I never had the chance to meet, that I loved her more than anything, it was such a powerful emotional moment. Her nurse then asked if I wanted her to take our picture. I declined, I didn't want to remember her like this. I felt this was all my fault, This shouldn't have happened. But she insisted and I'm so glad she did. This picture means so much to me and is one of my most prized possessions. My face says it all; so much love, fear of the unknown and what might be ahead of us, terror, profound sadness, gratefulness that, for now, she was surpassing expectations, worry, joy, and a million more. Just before she snapped the photo, I remember telling myself to suck it up and smile because when Penelope is big enough to understand and we show her this picture, she needs to know that her Mommy believed in her from the very beginning.

A preemie paci far too big for her.

By the time Daddy played milkman and delivered the next batch of pumped milk, the CPAP was gone.


Being a preemie is much more than being too small and being born too soon. It is also learning how to do things much sooner than you physically should. It means growing in the safety of a plastic incubator instead of your mommy's womb. It is learning to suck, swallow, and breathe all at the same time - things full term babies are born automatically knowing. It means learning to regulate your body temperature. It is being naked for the first days/weeks until you are no longer a resuscitation risk who might require quick medical attention that clothing might hinder.It means fighting for life every hour, every moment.

Being the mom of a preemie and NICU life means missing out on a lot of firsts, things that some parents take for granted. I wasn't the first to hold her, I wasn't the first to comfort her, to wrap her in a blanket to keep her warm, to calm and soothe her when she needed it, to change her diaper, to see her eyes open, to give her a bottle, to dress her, to give her her first bath, to change the sheets on her "bed." It means listening to the cries of the term babies that get to room-in with their parents when your daughter is not even in the same area and being cared for by strangers, It means leaving the hospital with empty arms. It means pumping around the clock and stressing that you aren't making enough. Sitting beside her bed, for hours every day with your chair as close as possible and your face inches from the plastic that surrounds her, watching her sleep because she can't be out of the incubator or from under the phototherapy lights for too long.

Preemie paci and diaper that are HUGE compared to her.

It means pushing the thought that the incubator looks like a clear plastic baby coffin from your mind several times a day. It means having the nurses exclaim what a big size she is at 3lbs and 14oz even though she is the smallest baby you've ever seen. It means relishing in those 60 minutes a day you do get to hold her. It means living your life on a 3 hour schedule. It means washing your hands until they are dry and raw. It means listening to the constant beeping of the monitors that at first scare you to death because you don't understand the alarms and every time they sound you instantly think your daughter has stopped breathing, then after a while they comfort you, and then panic you again when it is time to take your baby home and their security isn't going with you.

It is wrestling with your maternal feelings because you aren't your daughter's primary caregiver and at first you must ask permission to hold, touch, kiss, comfort, and worry that she doesn't know you are her Mommy. It means feeling completely inadequate to care for your child. It means dealing with child mortality and being equally heartbroken and at a loss for words and being profoundly grateful for your daughter's life when a sweet child lost theirs in a pod close to you - and feeling like a monster when you thank God for it not being your baby (that was the toughest day). It means seeing a older, tough looking man (tattoos and Harley shirt and all), maybe a grandpa, crying his eyes out by the NICU entrance (probably so his family wouldn't see - maybe he was expected to be the rock of family) with so much brokenness and pain and not knowing whether you should allow him privacy or hug him because you understood. I regret not hugging him. It means crying or being on the verge of tears all day.

When you are finally able to participate in the hands-on-care every 3 hours, it means learning to change diapers through two arm holes in the incubator while navigating cords and your baby's impossibly thin and frail limbs with pliable bones that feel like the tip of your nose that won't harden until closer to her due date. It means learning the importance of weighing the diapers to ensure her body is working correctly. It means learning how to properly take her temperature and praying when the thermometer beeps that the reading is in the acceptable range. It means learning how to use her feeding tube and asking to hold it while the milk drains so you feel like you are feeding your baby. It means waiting patiently to breast and bottle feed.

It is being moved to tears because you are so overjoyed the morning you come in and your baby is wearing clothes for the first time. It means rejoicing when you are able to hold her longer and participate more in her care. It means feeling more confident when the nurses let you have more alone time with your baby because it means they know you are capable of caring for her and meeting her needs. It means never wanting to let her go in an attempt to make up for all the snuggles you lost the first couple weeks. It means timing  your visits around feedings so you can participate and the doctor's rounds so you can physically speak with her doctor.

It means jumping for joy when they ask you to bring the car seat in for the car seat test because you've heard that means you might be going home very soon.It means celebrating each step forward, not matter how small.

Most babies don't come home until their due date or after. We were beyond lucky that Penelope came home at just 35 weeks - a whole 5 weeks before she was to be born. She is a true miracle.


And when you go home the worrying doesn't stop. You worry about her getting sick, you worry about germs and RVS and the flu and other sickness that mean a much more difficult outcome for your little baby. You worry she'll stop breathing, you worry she won't catch up and meet the milestones, you worry, worry, worry.

If you are pregnant, I beg of you to learn the signs of labor and preterm labor. Don't be like me and read them once and think you'll be able to gain more insight and knowledge from your weekly doctor appointments. I never even made it to my bi-weekly appointments. Don't think you'll be able to rely on your birthing classes. Penny actually came home from the NICU a couple days before our birthing classes were scheduled to begin.When I PPROMed (Preterm Premature Rupture of Membrane = my water broke), which only happens in 15% of pregnancies, at 31 weeks, 5 days, I knew nothing about premature birth. I am writing this so that doesn't happen to you. Our story could easily be yours. Educate and empower yourself.

You can read more about Penelope's birth story here.