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.

Penelope is NINE Months Old!

Baby girl, you have grown so much this month! You are becoming the cutest little person and we love seeing your personality come out. You are our greatest love and achievement.  I can't believe you are nine months old! That means you'll be one in only three short months. I still think your birthday is in April instead of February. I wonder how many years it'll take for my brain to get that straight. 

Adjusted Age: 7 months

Weight:  17lbs and 3oz (32%ile term scale)

Height: 27 inches (23%ile term scale)

Head Circumference: 18 inches (92%ile term scale) Your body is finally catching up to your head!

Diaper Size:  Size 3

Clothing Size: 6-9 month clothes

Diet: You are eating 6 ounces every 3 hours and baby or table food twice a day. You usually eat about 2 ounces of baby food per sitting.

Sleep: Naps are getting slightly better - it really just depends on the day. You are still a huge fan of one longish nap and then 2 additional cat naps. I guess that is how your body works. We are finally sleeping through the night again! You usually sleep 8:00pm -6:30/7:15am 

Baby Gear Love: Jumperoo, walker, ball pit, car toy, laptop toy, piano toy, mini teddy bear, Poppity-Pop Dino, activity table, school bus and passengers, your set of keys, your drum, your Poppin' Pals toy, stuffed animals, and your soft blocks.You pretty much love anything with lights and music, things that you can open and close (although closing is your absolute favorite), and balls.

Milestones/Firsts:  You are now trying to pull yourself up on your knees when you play and it is the cutest thing. You are also big into crinkling your nose when you laugh or smile and it melts our hearts! I haven't been able to get a good photo of it yet. You love to play now more than ever. You are so good at entertaining yourself and I no longer have to sit right beside you. You have figured out that your tongue can reach food on your face while you are eating so you spend a good portion of meal time licking your lips. You are able to propel yourself forward in the walker and love exploring the house and animals by yourself.

Likes:  Belly sleeping, singing, talking, laughing, playing, standing, snuggling with Mom, playing with Dad, blowing raspberries, being tickled, rocking, splashing in the bath, watching the cats and dog, petting Barnaby (because he's the only one who will get close to you),  pinching Mom's face and pulling Mom's hair, making lots of noise, giving kisses, shopping and sitting in the shopping cart (you especially love it when people stop to talk to you!), putting everything you can in your mouth, baby puffs and MumMums.

Dislikes: Poopy diapers, not being able crawl, taking things away from you that  you shouldn't have, and the animals running away from you.

Things I Don’t Want to Forget: Seriously, your crinkle face! I hope you continue to do it even when you are all grown up. One night this month while eating, you puked all over the dog and it was so comical. You both got baths that night. How you look in your trapper hat - you are the cutest!

We love you more and more each and every day.You bring so much joy to all those who meet you. I found this quote and I love it so much;

"Those who pause in their world long enough to get to know yours, will know what it’s like to meet a true, living miracle, and I am thankful I was chosen to be part of it all."

Penelope is EIGHT Months Old!

Beware of a picture overload!

You are a hit at church every Sunday! So many people come up to talk to you, and know your name and I have no idea who they are. You love it too - you get so excited when people talk to you. You are one popular and well loved girl. 

Adjusted Age: 6 months

Weight: No well visit this month, but you are around 15.5 lbs.

Diaper Size:  Size 3

Clothing Size: 6-9 month clothes

Diet: You are eating 6 ounces every 3 hours.

Sleep: You are still pretty inconsistent when it comes to napping and some days you won't nap unless I'm holding you. You are a little better than last month about sleeping through the night. I'm not up with you every night now, which is much appreciated. You are in a much better mood when you sleep through the night. 

Baby Gear Love: You are a huge fan of your Jumeroo, but we only let you play in it 10-15 minutes at a time. We have changed your activity play mat to a ball bit and you adore it! You are really into picking up the balls. You still like the Moby and other baby carries, but don't like to be in them too long - you need to wiggle! You love you car and laptop toys. 

Milestones/Firsts: You are a pro sitter! We are so proud of you! Now that you are sitting, you are really into playing so I think we need to get some more toys for you. You babble all the time and love to talk! You clearly say "Momma" and "baba" and say them more often so I think you are starting to understand they have meaning. You say "Momma" a lot when you want my attention. You also give me kisses now, which melts me into a puddle on the floor.

Likes:  Belly sleeping, singing, talking, laughing, playing, standing, snuggling with Mom, playing with Dad, blowing raspberries, being tickled, going for walks in the stroller, reading books, rocking, splashing in the bath, watching the cats and dog, pinching and pulling Mom's hair, sitting in your highchair and playing while I prepare dinner, petting the cats and dog, and Baby MumMums.

Dislikes: You get bored easily with activities so I try to rotate you through your toys and activities to keep you interested. You get really upset and throw a big fit if we take something away from you that you shouldn't have. You greatly dislike that you can't figure out how to crawl. You lay on you belly and kick your legs like a madwoman and pound your hands into the floor. I feel so bad for you. I don't think your arms are strong enough yet, but your legs are.

Things I Don’t Want to Forget: The funny faces you make when you taste something new - it kills us every time. Your baptism, surrounded by some of our family and our church family who loves us,  We have a recording so you can watch it when you are bigger!

Penelope's Nursery

Here's a photo dump of Penny's nursery. Sorry I haven't shared any photos until now. I had so much fun putting it together. Some of my plans changed and some projects were ditched due to her early arrival but I like how it turned out. It's my favorite room in the house...but that might have something to do with her...

Penelope is SEVEN Months Old!

It is such an honor and joy to be your parents. You are the light of our lives. We so love watching you grow each and every day.

Adjusted Age: 5 months

Weight: No well visit this month, but you are around 14.5 lbs.

Diaper Size:  Size 2

Clothing Size: 3-6 month clothes fit you perfectly but we might have to switch you to 6-9 month pjs soon.

Diet: You are eating 5-6 ounces every 3 hours. You still usually want a bottle after we breastfeed and once a day we offer you baby food or mashed soft food.

Sleep: You are still pretty inconsistent when it comes to napping and some days you won't nap unless I'm holding you. You have become a terrible sleeper at night. I feel like we have a newborn again! I am hopeful it is a phase that is short lived. 

Baby Gear Love: You are enjoying your Jumeroo more now and even have fun spinning the toys. Your love for your activity mat continues and I think we'll make the switch to the ball pit soon. You love your little piano and your stuffed animals. 

Milestones/Firsts: You are prop sitting and I don't think it'll be long before you are able to sit up straight! We have started offering you a sippy cup with water when we give you food. You LOVE it and are getting so good at doing it yourself. You have no interest in holding your bottle though.You use both your hands equally well and have been passing toys between your hands for some time now. You babble all the time and love to talk! You clearly say "Momma" and "baba" but I'm not sure you know what they mean yet. You are now reaching for me if some one else is holding you or if you are playing on the floor and love it so much. 

Likes:  Singing, smiling, talking, laughing, standing, snuggling with Mom, playing with Dad, raspberries on your tummy, blowing raspberries yourself, being tickled, going for walks in the stroller, reading books, rocking, splashing in the bath, watching the cats and dog, pinching and pulling Mom's hair, sitting in your highchair and playing while I prepare dinner. You are really into hearing your own voice and there are days you scream for hours...just for fun.

Dislikes: You get bored easily with activities so I try to keep you on a rotation to keep you interested.  Sometimes we even put you in the stroller and push you around the house! The dog likes that too! You get really upset and throw a big fit if we take something away from you that you shouldn't have.

Things I Don’t Want to Forget: Just how precious you are! Your face lights up when people talk to you, especially when it's Mom or Dad.  I think you might be an extrovert, but we'll have to wait and see. It is so much fun to watch you discover new things - like your voice.

Penelope is SIX Months Old!

I can't believe you have been with us for half a year, or that you are half way to one year old. These months have flown by, but at the same time, we cannot imagine what life was like before you. Something was missing, and it was you. You fill our hearts and lives with so much joy and love. 

Adjusted Age: 4 months

Weight: 13lbs 13.5oz (10%ile term scale)

Length: 25 inches (14%ile term scale)

Head Circumference: 17.125 inches (82%ile term scale)

You are in the double digits, baby!! You've gained 10lbs in 6 months! We are SO proud of you!

Diaper Size:  Size 2

Clothing Size: 3-6 month clothes fit you perfectly in the length but are still pretty baggy on you. You are long and lean.

Diet: You are eating 4-6 ounces every 3 to 3.5 hours. You usually want a bottle about an hour after you nurse to top you off. This month we will start exploring solids.

Sleep: You are still pretty inconsistent when it comes to napping, but we can usually get you to take a several hour long nap and the rest of the day you take little cat naps. You are sleeping through the night like a champ! You still fight sleep at night, but we can usually get you to sleep between 8:30-9:30 pm and you wake up sometime between 6:30-7:15 in the morning.

Baby Gear Love: You are enjoying your Jumeroo more now and even have fun spinning the toys. Your love for your activity mat continues. We can't wait for you to start sitting so we can turn it into a ball pit. When you are in the Moby, you don't automatically fall asleep anymore but now enjoy looking around.

Milestones/Firsts: You are rolling from back to tummy. We are practicing sitting, and I think you'll gain your balance soon. You try to crawl, but can't figure out how to use your arms, so you end up using the side of your face and get upset when you can't move very far. You can scoot across a blanket this way, though. You are a big wiggle worm and even wiggle while being held. You love to stand and your legs are getting so strong! You are also getting much better at playing by yourself.

Likes:  Eating, singing, smiling, talking, laughing, sitting while supported, standing, snuggling with Mom, playing with Dad, raspberries on your tummy, reading books, rocking, splashing in the bath, watching the cats and dog, and running errands.

Dislikes: You still aren't a fan of  not getting fed fast enough, toys that don't fit in your mouth, and gas. Other than those irritants, you are a very happy girl.

Things I Don’t Want to Forget: You think it's hilarious to grab my hands or shirt while I'm trying to change your diaper or clothes. You love the games you play with Dad and think he is the funniest. When a cat or the dog get close enough, you reach out to pet them. They seem to still like you - I hope that continues when you are mobile.

You are such a sweet girl and I love that you are such a fan of Mom and Dad. We see little bits of your personality coming through and can't wait to see more of that as you grow. You are such a
delight!

Penelope is FIVE Months Old!

Every new stage is my favorite stage! It's exciting watching you discover new things and start to "play." You are so precious and we love you so much.

Adjusted Age: 3 months

Weight: No well visit this month but you are around 12lbs.

Diaper Size:  Size 2

Clothing Size: 3-6 month sleepers and pants, but you are still in 0-3 month rompers and dresses.

Diet: You are eating just under 5 ounces every 3 hours and we have ditched the nipple shield! Most of the time you still want a bottle after we nurse. I'm pumping less often since you are eating better which makes me very happy.

Sleep: You are still pretty inconsistent when it comes to napping, but we can usually get you to take one long nap and the rest of the day you take little cat naps. You are sleeping through the night like a champ! You fight sleep, but we can usually get you to sleep between 8:30-9:30pm and you wake up sometime between 6:30-7:15 in the morning.

Baby Gear Love: Your favorite is still your activity mat. You still like being in the Moby but love your stroller for walks. Your new favorite toy is your Whozit. He keeps you very entertained! You are still a little tiny for the Jumperoo but we put a thin box underneath so your feet can touch. You like looking at the lights for about 5-minutes before you want out. 

Milestones/Firsts: You are rolling from tummy to back and back to side. You love to grab things and put them in your mouth and get very upset if an object doesn't fit. You are chewing on everything, but don't have any teeth yet. You are discovering your hands and feet. You LOVE to kick your feet and grab them.

Likes:  Eating, singing, smiling, laughing, snuggling with Mom, playing with Dad, raspberries on your tummy, reading books, rocking, warm baths, and watching the cats and dog.

Dislikes: Not getting fed fast enough, toys not fitting in your mouth, and being bored. 

Things I Don’t Want to Forget: You change and grow so fast. It's pretty incredible and awe-inspiring to watch. You are so perfect.

Penelope is FOUR Months Old!

You are getting so big! I love looking at pictures of you from when we were in the hospital because it's hard to remember you that small. You used to fit inside my tanktop! There's no way you could do that now. You've come so far, sweet pea, and we are so incredibly proud of you. 

Adjusted Age: 2 months

Weight: 11lbs 11oz (5 %ile term scale)

Length: 23.5 inches (10 %ile term scale)

Head Circumference: 16.25 inches (84 %ile term scale)

Diaper Size:  Size 1 We will probably have to move you up a size in the next couple weeks.

Clothing Size: 0-3 months are fitting just perfect. It's amazing what a difference a month makes and how much you've grown!

Diet: You are eating just under 5 ounces every 3 hours. You are getting even better at breastfeeding. Sometimes I can even trick you and ditch the nipple shield. I hope we can stop using it by the end of next month.  I'm still having supply issues (even though I've tried just about everything I know of to get it up) so you get about two bottles of high calorie formula a day. Your Doctor says that this month we can transition to regular formula since you are growing nice and big.

Sleep: You take one long nap (1.5-2 hours) a day and the rest of the time you take a bunch of short 20 minute naps. You are pretty much sleeping through the night and only have a night-time feeding every once in awhile. You do, however, wiggle your arms out of your swaddle which wakes you up around 4:30 am and then you want to be in Mom and Dad's bed for the rest of the night.  

Baby Gear Love: You love your swing, bouncy seat, Moby wrap, activity mat, and fishy toy, and the ceiling fan. You are into playing now, which has been so fun to watch!

Milestones/Firsts: Your neck muscles are getting stronger everyday! It's much easier for you to keep your giant head at mid-line now which means even better head control. You are smiling and laughing, which we LOVE so much! You are starting at bat at toys on your activity mat too. You love to babble and have conversations with Mom and Dad.

Likes:  Eating, singing smiling, laughing, the ceiling fan (you could watch it for hours), snuggling with Mom and Dad, playing, rocking, and warm baths

Dislikes: Being stopped at red lights, and not getting fed fast enough. 

Things I Don’t Want to Forget: How big/small you are. You seem so huge to us, especially considering where you started, but I know in only a few sort months it'll be difficult to remember you being this small. Every month is so different; you grown and learn exciting new things. My Momma's heart says you are growing up too fast. Next thing I know you'll be in high school.

Penelope is THREE Months Old!

You are getting so big! I love looking at pictures of you from when we were in the hospital because it's hard to remember you that small. You used to fit inside my tank-top! There's no way you could do that now. You've come so far, sweet pea, and we are so incredibly proud of you. 

Adjusted Age: 1 month

Weight:  No Well Visit this month, but you are around 10lbs

Diaper Size:  Size 1. The newborn size was getting a little narrow, so we made the switch last week and they are a little big. They almost reach your armpits!

Clothing Size: 0-3 months, but they are HUGE! Newborns were too short so I moved you up. You are a long and lean girl. I was a little sad packing up all the newborns but am so excited to dress you in all the cute 0-3 months clothes that I bought you while I was still pregnant and those that Auntie Amanda lent us. 

Diet: You are eating just under 4 ounces every 3 hours. I no longer have to fortify Momma's milk so you are getting less calories a day, but still growing nice and big! We are still working on breastfeeding and you are doing so much better now that your sucking muscles are getting stronger. Sometimes I don't even have to pump afterwards. I'm still having supply issues so you get about one bottle of high calorie formula a day.

Sleep: You are awake much longer during the day and only get up once during the night, usually somewhere between 2:30am and 3:30am. You are sleeping much better now that we swaddle you. More sleep has been so wonderful! When you were still inside, you always woke me up around 3am with all your kicking and I see now you were just preparing me for your night-time awake time. 

Baby Gear Love: You love your swing, bouncy seat, Moby wrap, activity mat, and fishy toy, and the ceiling fan. You are into playing now, which has been so fun to watch!

Milestones/Firsts: Your neck muscles are getting stronger everyday! It's much easier for you to keep your giant head at mid-line now which means even better head control. You are smiling and laughing, which we LOVE so much! You are starting at bat at toys on your activity mat too. 

Likes:  Eating, singing smiling, laughing, the ceiling fan (you could watch it for hours), snuggling with Mom and Dad, playing, rocking, and warm baths

Dislikes: Being stopped at red lights, and not getting fed fast enough. 

Things I Don’t Want to Forget: I love the way you snuggle into my neck. It is pretty much my favorite thing. If you aren't close enough for your liking, you'll kick and push your legs against me in a mock crawl to push yourself closer to my neck. It's the only way you'll fall asleep. You are so precious and we love watching you grow and notice new things in your environment. Your little smile lights up your face and explodes our hearts. You are our little miracle.