For This Mama, Prematurity is Year-Round

My hands are weakly wrapped around the wheel.

My throat choked up as I’m holding back the pain inside from physically manifesting down my face.

“Happier” by Marshmello & Bastille is playing on the radio.

The twins are behind me securely strapped into their car seats.

I can’t see their faces, but I’m consumed with guilt-

Imagining the seeds of resentment planted in them by a day that I ruined. Potential joy that I robbed.

It just so happens to be World Prematurity Day.

I am a preemie mama, and I’m here to share my story about post NICU trauma.

This past November 17th marked another annual reminder of the many babies born too soon through World Prematurity Day. Unrelated to this day’s cause of a call to awareness for this medical tribulation, my family was invited to participate in a local charitable event for less fortunate members of the community to receive a meal and take home food donations and commodities.  As a single mother of twins, any outing we undertake has its logistical challenges. Unique to us, however, is the additional compounding factor of it currently being RSV season. Although this is my twins’ second winter, I have made the choice to continue to err on the side of caution and once again remain in semi isolation during the winter and early spring months. This means no large crowds and avoiding most indoor events and stores.

You see, although my twins appear healthy and happy on the outside, the fact is they were still born 12 weeks too soon. This means they entered the world before receiving necessary infection-fighting antibodies and have vulnerable lungs compared to their peers. At even greater risk is my son, whose water broke at 26 weeks, stunting lung development even before his birth. During his first couple of weeks in the NICU, he remained on critically ill status while fighting to overcome sepsis, respiratory distress syndrome, pulmonary hypertension, and a large PDA. And, while their known risk status makes them eligible for the monthly Synagis injection (a preventative shot against RSV) doses all winter, even the drug’s information website itself clearly states- “Children can still get severe RSV disease despite receiving SYNAGIS” (

I had originally hoped that since this particular occasion was limited to invite only that it may be a small somewhat manageable gathering for us, but as I pulled into the parking lot that did not appear to be the case. To make matters worse, as I opened my driver side door, I was immediately greeted by a former NICU mama’s most dreaded sound- a hacking cough nearby. I was then directed by a parking lot greeter to the first building for registration and breakfast and my heart sunk as I saw how full and enclosed the space was. Struggling to trudge the twins’ frame stroller through the parking lot gravel, I disappointingly let go of the thought of being treated to a meal I didn’t have to prepare myself while sitting down for a minute to get a break and relax. After finally arriving at the door, I asked another event volunteer if it was possible to skip the meal and just pick up the donation box but was told I still needed to enter to register. Fear crept up my neck as I entered in and joined a long enough line to know there would be a significant wait. I tried to save myself more sorrow by keeping my eyes away from the buffet style breakfast spread that I would be missing out on.

As soon as we stopped moving and my little ones realized we had arrived at our destination, they immediately decided it was time to get out of the uncomfortable infant carriers and play. They both started whining and arching their backs to push out of the straps. On cue, both the presence of babies in general and that they’re twins drew attention from those around us. Within seconds I was surrounded by outstretched arms of strangers leaning forward into the seats and offering their assistance. Everything started to become a blur for me. All I could hear over the sound of my heart beating faster as I impatiently willed the line of people to dissipate was the phantom beeping of the cardiopulmonary monitor. Was this another desat? Did a wire just get loose again? Where is the nurse?  I started singing “Twinkle Twinkle Little Star” to settle the twins, but they were adamant to get out and on the go. The women around me kept insisting on lending a hand and I could hear their frustration with my dismissal mounting – “I can take one- if you’ll let me help you”. I tried not to make eye contact to minimize my shame. “I got it,” I muttered in no particular direction.

After managing to check in with my two fussy toddlers, I finally made it back outside and to my car. I pulled around to the second building, where a man came up to my car window and asked, “how can I pray for you?” “I’m losing my mind.” He chuckled and thought I was joking. He responded by re-wording my confession- “Okay, so you don’t want to lose your mind.”

No, I’m already on my way there. Of course, I wanted the kind strangers to help. Of course, I want to enjoy the rare treat of a prepared meal. Of course, I wanted to take my children to the play area and inflatables in the other building and let them have fun. Get their energy out. Be kids. Get gawked at and ooo’d over for being twins and little and cute. Be normal.

But instead this is our reality. Having to ask if an event will be indoors. How many people will be there. Being accused of being a “germaphobe” even by friends and loved ones. Especially by friends and loved ones. Having people avoid visiting us because they’re uncertain about the ‘requirements’ to visit. Deciding it isn’t worth the fuss and leaving us abandoned instead. Feeling isolated, misunderstood, burdened. Alone.

Everyone says germs are “good for you”. That your baby needs to build an immune system before they get to school. But not everyone has seen their baby in the hospital for months. Poked and prodded daily.  Prongs in their nose, wires stuck on their body, mouth covered by tape and a tube down their throat. Uncertain if they will even come home. If today is the day they will take a turn for the worse.

I exited the driver side door and approached the side door expecting the worst.

But there was no spite or resentment.

As I pulled the first door open, I was met with my son’s usual wide cheesy grin.

My daughter was peacefully asleep.

The moment had passed for my toddlers’ short attention span.

We were home. Safe. Healthy. Our whole family together. No longer separated by one twin being left at the hospital while I took the other home first. Would they for sure have gotten sick had we stayed? Maybe, maybe not. Is it worth the risk? For our family, not yet.

I am a former NICU mama. And I am still dealing with post-NICU trauma. For my family, prematurity awareness is not just one day- is it year-round.

By: Valerie Frost November 20, 2018

Valerie Frost is a mother, scholar, and lifelong learning enthusiast. A Garden State native, she is a former Kindergarten teacher now tackling Stay-at-Home Mom life with single parenting of boy/girl premature twins. She recently completed her M.Ed. and has a passion for creativity, health, and personal well-being.

Giving Tuesday

Everyone has a day that changes them. A day that never fades from memory. May 3rd, 2010, is that day for me.

Before May 3rd, I was an excited, first-time expectant mother—doing mom things, picking out crib sheets and relishing those first faint kicks of my long-awaited little one. I couldn’t wait for August 11th, my due date.  Unexplained, unstoppable labor changed everything. My baby was coming and he was coming fast.

I delivered my son by emergency C-section. I had no idea what happened. What could I have done differently? The guilt ate at me for weeks as I watched our tiny two pound miracle fight in his isolette. The next several months brought many amazing highs and frightening lows.  Our son showed more strength that I knew one person could possess.

After we brought him home, I had time to reflect on our NICU journey. Despite the hurdles my amazing baby had overcome, I was still struggling.

Was it normal to hate my body for failing its most important job?  

Was it normal to cry every time I saw a happy pregnant woman with her hand laying across her round tummy?

Why couldn’t anyone help me understand that it was okay to feel the way I felt?

There was no one around to offer me a lifeline.  No one to say that these feelings of loss, guilt and breathlessness would eventually ease.

I don’t want any other parent to feel the way I did those months after May 3rd.

At Graham’s Foundation, our sole purpose is to provide parents with that lifeline. To be the kind and gentle voice that offers support and encouragement in a parent’s most terrifying days. Today is Giving Tuesday.  Please help us ensure that parents get the support and resources they need.  The NICU is a lonely, frightening place.  But it doesn’t always have to be that way.

Donate Now

In hope,

Heather McKinnis

Thoughts On World Prematurity Day

Today is World Prematurity Day.
It’s just over 3 and a half years since we started our journey with prematurity and damn it I wish I knew back then just how much it would become a part of me. Of us. I don’t know why I thought it would be different. Maybe I thought it would be over once we left the hospital. Or once we got that tube out. Or once we managed to survive all of the firsts. Maybe I thought that the effects would decrease over time, that the memories would fade and be forgotten in all of the mayhem of life, family, work and fun. Maybe I just thought that time would heal, because that’s what everyone says. But I really wish I knew then that none of that is true. That it actually doesn’t matter how long it’s been, it’s still raw and terrifying and painful and you just have no idea when it will pop up and smack you in the face. 
Prematurity – it isn’t just a word anymore. It’s me. It’s us. It runs in our veins now. It’s in the air that we breathe in our home, it’s in my cups of tea and it’s waiting to nestle close to me in bed each night. 
Oliver was fed with a nasogastric tube up until he was 19 months old; the effect of Prematurity was taped to his face everyday. We have roughly 25,436 flannels in our house gathered from multiple family members over time to help us manage the years of vomit. We have syringes and medications in boxes. Casts of his brother’s feet are on our wall, and next to our bed. 
Prematurity ripped our family apart and has also somehow become the glue that stuck it back together.
Oliver won’t be a ‘preemie’ forever, he has become a kid, and he will become a teenager and an adult. But his brother won’t. Our walls are covered in photos that are beautifully full of our miracle boy, but they are also glaringly empty of his partner in crime. So prematurity will travel with our family forever, because it is synonymous with parenthood for us. It became our journey and we will travel this road forever. We missed out on so much, but this is what we have.
But some days I really wish I knew how heavy that would feel. And I wish I knew that some days it would feel like a gift, a unique special journey that was just for us, and some days it would feel like a giant wall, cutting us off from everyone else while we try desperately to claw our way back through.
Written by Rebecca Clews.
Preemie Parent to twins
One here on Earth, One in Heaven. 

Have You Checked Out Every Tiny Thing and Hello Preemie?

We recently had a chance to ask Trish Ringley, a nurse and the founder of both Every Tiny Thing and Hello Preemie, some questions about what has inspired her to create products and resources for preemie parents. Here’s what she had to say:
How did your work as an RN inspire Every Tiny Thing? What need did you see that wasn’t being met?
As a bedside nurse, for years I was pretty clueless about the enormity of the struggle preemie parents truly face. Parents so often put on their best face when they’re with their baby in the NICU, trying to be strong, which means the staff may not have any idea how much they’re suffering. I know I was in the dark about it until I decided to start a blog about the NICU. That’s when I started reading more online articles, participating in preemie forums and reaching out to preemie families. That’s when I started to learn more about how truly difficult it is for families. 
So I’ve learned more about what parents are really craving away from the bedside. Through emails and meetups, through online forums and coffee dates with friends, I’ve learned that parents feel alone, confused, under-informed and extremely stressed, regardless of the severity of prematurity. 
There are so many needs not being met, it’s hard to even know where to begin. I wanted to help make the NICU space feel more welcoming, because for me as a nurse it is a welcoming place, but I know for parents it isn’t. I saw parents being left out of so many fun newborn experiences, like spending time in a nursery that feels comforting, and I knew it could be helped with a little bit of creativity. So NICU Crib Art was born, and then I just kept on creating whatever new ideas I dreamed up.
How did the response to Every Tiny Thing shape the development of Hello Preemie?
With Every Tiny Thing, I wanted to create items that bring joy to parents. It was the outlet for my creative side, and it was about making products to comfort any parent in the NICU, not just preemie families. 
But the truth is that the vast majority of my customers and followers are preemie families, and the needs of preemie families are unique. So I decided to create a new site devoted 100% to preemie families through raising awareness of all the resources that are available to preemie families. 
Two things I kept hearing over and over and over again were:
#1 -“I wish I knew about that back when my baby was still in the NICU.” Whether they’re talking about a journal to write in or a support group to join, too often parents don’t know about a helpful resource until well after it would have been most helpful.
#2. “I stayed away from the internet because I didn’t want to be scared or overwhelmed.” 
So it became my mission to create a positive and inspiring place where parents can learn all about everything that’s helpful on a preemie journey in a timely manner. Whether it’s products to buy when your baby is still in the NICU, books to read, support groups to join, questions to ask, survival strategies to try, words to use when talking with friends and family… if it’s gonna help a preemie parent, I want to share it. 
There are a lot of resources out there – what sets Hello Preemie apart? What special role does it fill in a parent’s journey?
You’re so right – there are TONS of resources out there! My goal with Hello Preemie is to inform preemie parents about all of them.
What sets Hello Preemie apart are a few things:
1. I am committed to focusing on the positives. Parents tend to stay off the internet when they need help with their preemie because they can’t handle the scary stories, the worst-case-scenarios, the tragic outcomes. They just want to stay in a place of positivity and hope, and I believe they deserve that.  Unfortunately, their avoidance of online research is what keeps them from learning about so much of what’s available to help them. So I want to build a site where families feel safe, where they know we’re gonna stay on the positive side, sharing successes and inspiring each other. 
2. I want to share everything – not just my ideas, not just products to buy, not just groups to know about, but all of it. Everything I think preemie parents will love to know about, I want to share. 
3. I bring to this project my 20+ years NICU nursing experience which I think is unique and helpful in its own way. I’ve cared for thousands of babies and their parents in the NICU over my career. That breadth of experience, coupled with technical knowledge about prematurity and the workings of the NICU, plus a passion for advocating for parents allows me to bring a unique perspective to the world of helping preemies and their families.
What forms of support are NICU families still not getting and why?
Some hospitals are doing amazing jobs, and it’s important to keep that in mind. But it’s easy to be discouraged, because all too often parent’s aren’t getting the support they deserve. In many instances, they’re not getting included in their baby’s care as often and as early as they could be. They’re not being connected with other parents so that they have someone to talk with. They’re not being taught about PTSD, why they may suffer from it and how to get help with it. They’re not empowered to be an integral part of the team caring for their baby. They’re separated from their babies at a time when bonding and togetherness are crucial. 
In my opinion, it takes our American model of health care a long time to adjust to new research and new ideas, particularly when it comes to the more emotional aspects of medical care. We’ve made tremendous advances in saving babies, and ensuring they have the best long-term outcomes medically, but there’s still so much more to do to support the emotional well-being of the entire family. 
But it’s not all bad – things are getting better every day! There is great emphasis now on developmentally supportive care in the NICU, family centered care, skin-to-skin holding & use of breastmilk and it’s really making a positive difference. There are organizations like Graham’s Foundation and many others out there working to make it better for preemie families every day. The key is making sure parents know all these things, and that’s why I’ve started Hello Preemie – to ensure that all parents know what’s possible.  
Do you foresee yourself running Hello Preemie yourself for the foreseeable future or is your hope that it will grow into a project with staff and multiple initiatives?
I envision running this website on my own for the foreseeable future. While I definitely need help with some aspects, such as graphic design and accounting, I am the type of person who loves to tackle new challenges, learn new things, and I’m loving the process of growing this business on a very personal level.
When a parent first comes to Hello Preemie, what’s the best way for them to use the site?
Most of the exciting action with Hello Preemie is on Instagram. It’s where I reach out to preemie families with a feed that is inspiring, fun and positive. It’s becoming a place where parents are supporting each other, sharing discussions and ideas. Every blog post I write is announced there, too, so it’s the best way to keep in the loop. 
But for everyone who’s not on Instagram, visiting the Hello Preemie website and reading through the blog posts is the next best thing. Actually, when you’re at the website, I’d definitely recommend signing up for the newsletter. I’ve found a way to deliver only the emails that are relevant to wherever you are on your preemie journey. So if you’re a parent of a preemie who is still in the NICU, you’ll receive a newsletter with information just for that. If your preemie is home from the NICU, your newsletter will be filled with useful information for that part of your journey. And for everyone else, the “friends and family” version of the newsletter offers great information for supporting parents of preemies at any stage of their journey.
What will success look like for Hello Preemie? How will you know when you’re truly fulfilling your purpose?
I have to say that it already feels successful because the connections I’m making on Instagram are already so inspiring. Every day, I hear from new parents with questions I love to answer, I learn new tips & tricks that I can’t wait to share. So even if Hello Preemie didn’t grow much bigger, it’s still a success in my mind.
But I have big dreams for Hello Preemie, hoping to inspire and teach ever more families when they need the help. So I’m looking forward to growing my Instagram following, and possibly even partnering with companies who are relevant in the preemie world. Paid sponsorships will allow me to keep the site running and growing. But here’s the important part about that – because I am in charge here, I get to decide who I will partner with and who I won’t. I only mention products and work with brands that I feel awesome about. I’m not going to try to make a buck if it means working with companies I don’t admire and believe in. 
The best way I know I’m fulfilling my purpose is when I hear a preemie mom or dad reach out to say that my words have helped them. That’s what it’s all about. There is nothing better than hearing that I’ve helped someone through this tough time.
Some days it’s easy to feel that it’s not enough. Hello Preemie can’t make every preemie healthy, I can’t make every journey easy, and I can’t make prematurity go away. But I try not to let that stop me from doing what I can. If I can make a family’s day a little brighter, or if I can share a bit of knowledge that helps them feel more empowered, it’s been successful. If I can help them feel a little normal, as if they have a friend who understands and is here to help, it’s been successful. If someone recommends Hello Preemie to another preemie parent, it’s been successful. 

An Adult Preemie Tells Her Story

I reached out to Graham’s Foundation because I am always trying to find other Preemies who are now adults, like me. They asked if I’d be interested in telling the world more about my experiences and how being a Preemie has impacted my life.

I am 65 years old and was born 3 months premature in 1953. I was in an incubator for 3 months, which was common back then. I have spent some time contacting researchers and foundations involved with prematurely born children. My hope was to try and see what other preemies in my age group are like in terms of personality, strengths, and weaknesses.

I have never met another Preemie, and the researchers seem surprised that I made it this far! I have seen the video titled “Preemie Voices.” I see now that I was quite lucky! I have some minor health issues as I am nearsighted, had cataract surgery in my 40s, and am a little hard of hearing.

Unfortunately, I had a very tough time growing up which was more a function of having a narcissistic and alcoholic mother and a father who checked out emotionally early on. I”ll be the first to admit that I have been anxious from age 3 on. I wouldn’t go to school as a child and was terrified of everything.

A funny yet sad example was that I went trick-or-treating the day before Halloween at around age 10 because I was anxious I wouldn’t get candy. Being very creative and resourceful, I told people I was going into the hospital to have my tonsils out! And, then went back on Halloween in another costume – all by myself.

The one suggestion I would make to new parents of preemies is to not let your children suffer if they are not fitting in at the school they are in. My parents chose to ignore my issues and spent time sending me to many therapists in order to try and change me to be more normal like my sister. It’s still heartbreaking to know that I was given up on and labeled “different” at a young age. It still makes me feel very alone as I am the last one left in my family and there was nothing I could do to because their minds were made up…

From what I have learned about other Preemies that I have read about or seen on video is that we are very strong, resourceful group! I have a fierce determination and will almost never give up once I set my mind to something! I also work out 6 days a week to keep in shape and to treat my anxiety.

Laurel is a healthy and active 65 year old who weighed 2lbs 4 oz at birth.

She has contacted different researchers and yet no one seems to know of another preemie who is in their 60s like her. She’d love to connect with other adult preemies to see if there are similarities in their personalities!

Laurel’s next blog will focus on coping with the differences that can be a consequence of premature birth as a teenager and adult.

If she can answer any questions, feel free to contact her at or by text at 650-704-7682.


I am a Proud Parent of a Preemie!

Today’s post comes from preemie mom Samantha. She’s a stay-at-home mom to two children, Cooper and Evynne, and is currently finishing up her Master’s degree and looking forward to the next chapter in her journey. Cooper was born at 32 weeks and is now 12 years old. This is their family’s premature birth story:

When thinking of the birth of your child, the last thing one wants to dwell on is the traumatic part. However, the day my son was born was the scariest day of my life.

While pregnant with my son, I remember daydreaming about and longing to hear his first cry after he was born. I was not awake when he was born, so I never heard his first cry. I don’t even know if he let out a cry when he entered the world. I think he did and I have convinced myself that I heard it, but maybe he didn’t. It all happened very fast. I don’t remember much, but before being putting under by the anesthesiologist, I do remember thinking, ‘Great, I am not going to be able to keep this one either. Please let me be able to keep this one.’

The day my son, Cooper, was born was just like any other day. I went to work and left around 2:00 to head to the doctor’s office for my 32 week appointment. Beside some heartburn issues and a recent gestational diabetes diagnosis, my pregnancy had been uneventful. There was no reason to think my appointment would be anything other than routine. Not too far into my appointment, I was instructed to head straight to the hospital to be set up on a fetal heart monitor. I was concerned, but had no idea that after a brief check of my son’s heart rate upon arrival at the hospital, I would be rushed into surgery. My OB appointment was at 2:30 on one end of town, the hospital was at the other end of town. My son was born at 4:07. It was fast.

Cooper was born prematurely due to a heart condition. His heart rate was very low and irregular. I will never forget the nurse who said to me after he was born they did not expect to pull out a live baby. Those words will stick with me forever. Once I woke up, I was able to see him briefly before they whisked him away to the NICU at another hospital in town. He was able to come home after 28 days in the NICU. He was under the care of a cardiologist and on heart medication until he was almost 4. He has had no other complications as a result of his prematurity. I realize we are fortunate, for sure!

Even though Cooper was born 8 weeks prematurely, I have often felt that I was somehow “unqualified” to distinguish myself as a parent of a preemie. Cooper’s circumstances were certainly concerning but not dire. We didn’t come home with wires or around the clock monitors or a plethora of medications to figure out. I realize there is a huge difference in having a baby born 8 weeks prematurely and having a baby born 12 or 15 weeks prematurely. However, for 28 days I had to come home without my baby; I am undoubtedly a parent of a preemie.

While the day Cooper was born was the scariest day of my life, 28 days later when he graduated from the NICU and we were able to bring him home was a happy, glorious day. I am not sure why I denied myself the distinction of “Proud Parent of a Preemie.” Somewhere along the way, I must have received the message that Cooper’s birth was not severe or traumatic enough to be worthy of telling. After all, he is here and he is healthy and he is thriving. In the NICU, I saw babies struggling and fighting much harder than Coop and parents who were dealing with much bigger issues than we were. Why would our story matter when the parents next to us may never bring their baby home?

Being a parent of a preemie is not a distinction anyone seeks to claim. Our stories all differ, but each of our stories are unique and worthy of sharing. Our awesome, courageous preemies deserve the story of their birth to be honored. Whether our experience required a NICU stay of a week or several months, it all matters and qualifies a parent to be distinguished as a “Proud Parent of a Preemie”. Honor your story.

A Journey of Courage and Faith: Our Preemie Story

Today’s post comes from preemie mom Lauren, who is an English teacher, wife to Danny, and mother to preemie Christian Hodges. She and her family live in the suburbs of Pittsburgh and enjoy house projects, as well as outdoor activities. This is their story:

My husband Danny and I eagerly anticipated a weekend getaway from cold, grey Pittsburgh to visit family in warm, sunny Naples, Florida for President’s Day weekend in February. I was just about 26 weeks pregnant, and while a lavish “baby moon,” wasn’t in our budget, we thought we could take advantage of a weekend visiting family and enjoying the beach – a welcome change from our busy work schedules and cabin fever. My doctor had cleared me for travel up to 36 weeks, and my pregnancy was smooth sailing after a scare in the fall, so I was feeling very confident about this trip.

We had both taken Friday afternoon off of work and rushed to the airport to make our flight. We braved ice-cold wind in the parking lot of Pittsburgh International Airport and hustled to the terminal, barely making take-off. As the plane was in the air, we passed the time by diligently working on projects that we had to take care of for work while dreaming about our weekend getaway – the last time we would be able to spend some carefree time at the beach together before the arrival of our baby boy.

Continue reading “A Journey of Courage and Faith: Our Preemie Story”

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