NICU Parents

After getting over the initial fear and anxiety of finding out I was pregnant, I was excited to share the experience on social media. My husband and I moved two states away after college, so social media has been my main way of staying connected with old friends.

I carefully planned how I would make the big announcement, as we nervously waited through the first trimester. After sharing the news, I was thrilled to find several people on my newsfeed were also expecting within months of myself.

We made the journey together, from our sheepish admissions of eating things we shouldn't, to our maternity clothes woes.

Then, one night after work, about a month before my due date, I noticed that my feet were particularly swollen. I had worked all day and then taught a night class, so I figured I just needed to cut back.

But, the swelling didn't get better, and I started having mild headaches. I'd seen enough episodes of I Didn't Know I Was Pregnant to know that those might be signs of something more serious. So I made an appointment with my doctor, even though I was just there a week ago. My blood pressure was high: that, combined with the swelling and headaches pointed to me having preeclampsia: a pretty serious condition for both Mom and baby.

We agreed I would monitor my blood pressure at home over the weekend on bed rest and report to the hospital if anything went up. We went to the hospital once, but I wasn't admitted, and was sent home with a prescription for blood pressure medication.

On Monday we went to my scheduled appointment and were sent directly to the hospital for induction. I was diagnosed with mild-to-moderate preeclampsia, and since we were only 4 weeks from our due date, they decided to induce.

After 24 hours and no progress, we were told to shower and get ready for another round of stronger induction medication. 

My husband went home to shower, and I showered in our hospital room. Immediately after stepping out of the shower I started feeling really weird and light headed. The nurses came in and reattached the monitors, but couldn't find the baby's heartbeat. They hooked up another device, which set off an alarm that sent several doctors charging into the room. I was given oxygen and told we had to go immediately for an emergency C-section. 

In the most terrifying few minutes of my life, I pleaded with anyone who would listen to call my husband, but they never did. They found and then lost the baby's heartbeat, and suddenly I was gone. 

When I woke up, my husband, mother, and doctor were there. Slowly, I learned the details of my son's delivery, and that both my husband and I had missed it. 

My baby wasn't breathing when he was born, and the cord was around his neck. The doctors were able to resuscitate him, but his breathing continued to be very labored. While they were figuring out what was causing his breathing problems, he was placed in the Neo-natal Intensive Care Unit (NICU).

This meant that not only did I miss my son being born after months of anticipation, but I also couldn't touch, hold, or even see him for 18 hours after he was born (the earliest my doctor would clear me to get out of bed considering I had just been gutted like a fish).

I asked my nurse to come get me as soon as I was allowed, and eventually wheeled my way down to the NICU. The nurse there was so amazing and loving that I felt at least a little better knowing she had been there when I couldn't.

Miles in the NICU, the day after he was born.

Miles in the NICU, the day after he was born.

Seeing that tiny little thing hooked up to all those wires and machines was very overwhelming. You feel so grateful they're alive, but so afraid of literally everything else.

Eventually, Miles was transferred to another NICU, better equipped to deal with his condition, and he came home after about a week. He's a happy and healthy kid now, but I learned so much during my week as a NICU Mommy.

I learned how much it hurts to see your friends post pictures of their healthy babies snuggled up in their hospital room post-delivery when you haven't even been allowed to hold yours for two days.

Me holding Miles for the first time, after being transferred to John H. Stroger Jr. Hospital of Cook County.

Me holding Miles for the first time, after being transferred to John H. Stroger Jr. Hospital of Cook County.

I learned to be grateful every day. Despite being a month early, Miles was over 7lbs and relatively healthy besides a partially inflated lung. The other kids in the NICU seemed to be in much more serious shape.

And I learned that I felt embarrassed to post on social media about Miles' health issues, delivery, and complications. I felt cheated and almost ashamed of not having the traditional birth story. No sweet pictures of my husband seeing his son for the first time. No embarrassing but beautiful photos of me looking a mess with a fresh-faced babe in my arms.

I was fortunate enough to have Emma and the Nelsons in my life, who had a NICU experience a couple years prior. So, I always knew I had someone who understood what I was going through. But for all the other NICU parents out there -- you are not alone, and your story deserves to be shared, even if it's non-traditional. 

Thank You!

What a journey this Kickstarter campaign has been! In the last 48 hours of the campaign, we raised over $5k to see our project reach 115% of our funding goal!

I feel incredibly humbled and motivated by this experience. It was so much more challenging, exhausting, and exciting than I ever imagined. In a lot of ways, it was only the beginning!

Our next steps are to finish the illustrations, design, and layout for the book. I know our illustrator has been incredibly motivated by all of the kind words and interest in her art, so I feel confident we'll be right on track. We'll definitely be keeping you updated, starting with sending out surveys to confirm package details and shipping information next week.

Finally, I just want to say, thank you so much. Thank you to everyone who contributed, shared, interviewed, blogged, called, texted, or shouted about Emma Goes to School from the rooftops! 

Thank you to the Nelson's for making me a part of your family, to Emma for inspiring and motivating me to be a better person every day, to Sage for bringing my ideas to life and Jennifer for keeping us both on track. And finally, an extra special thank you to my husband Brad, I am not exaggerating when I say this project would not have been possible without your help. 

Stay tuned for more details as we make our way closer to printing the first copy of Emma Goes to School, and making this dream become a reality. See you this Fall! <3

Emma Goes to School, available for pre-order now!

Meet Sage "Sagums" Steiner, the 13-Year-Old Illustrator of Emma Goes to School

Writing Emma Goes to School wasn't a difficult process. I'm not trying to brag or anything, it was just that I had really great inspiration. It doesn't hurt that my target demo of 3-5-year-olds isn't too critical yet either.

With a compelling story and the promise to pay them (eventually), I was approached by more than a handful of talented artists when I started looking for an illustrator. When I was contacted by someone who said their 12-year-old niece, Sage, was an artist, I was intrigued but also pretty hesitant. Until I saw her work.

Illustrated by  Sage "Sagums" Steiner , illustrator of  Emma Goes to School .

Illustrated by Sage "Sagums" Steiner, illustrator of Emma Goes to School.

I fell in love with her characters, and her subtle nod to gamer/anime culture within her art style really appealed to me on a personal level.

I honestly felt like her portfolio was the most impressive and in-style with what we were looking to do. And, although hiring someone less experienced than myself in the book publishing realm would mean more work in the long run, I really felt like it was worth it if I could give her a platform to really let her work shine.

Illustrated by  Sage "Sagums" Steiner , illustrator of  Emma Goes to School

Illustrated by Sage "Sagums" Steiner, illustrator of Emma Goes to School

In a recent interview, someone asked me what it has been like working with a (now) 13-year-old in this project.  Honestly? It's been pretty great. 

You can see all of Sage's work at sagesteiner.com, or follow her on Instagram @Sagums

First ever sketch of Emma, Illustrated by  Sage "Sagums" Steiner , illustrator of  Emma Goes to School .

First ever sketch of Emma, Illustrated by Sage "Sagums" Steiner, illustrator of Emma Goes to School.

A Day In The Life

Imagine you're at the grocery store with a one, and almost-3-year-old.  Your one-year-old is his usual rowdy, charming, and engaging self.  He smiles, waves, and interacts with everyone and everything around him.  You catch strangers smiling and waving at him, and he does the same back. 

But, it's not the same for your 3-year-old.  Instead of smiles and waves, you sense stares and whispers.  People can see that she's far too old to still need the bib she's wearing to catch the excessive drool she likes to rub her fingers in and stare at.  When she occasionally lets out a high pitched scream, you can feel other parents looking at you and wondering why you aren't doing more to correct her behavior. 

Now your one-year-old is getting cranky and throwing things out of the cart.  While you deal with that, the three-year-old starts wildly slamming her body against the seat in the cart.  "I know," you whisper to her, pleading for her little body to calm itself, "We just need milk and then I promise we can go."

Now you're at the checkout and your body tenses as you hear the question you always dread, even though it should be so simple.  "Hi there!" the woman scanning your 5 bags of frozen ravioli (that's all the 3-year-old will eat this week) says, while smiling back at your 1-year-old, "Your kids are so cute, how old are they?".  You stare down at your items on the black conveyor belt and mumble "1, and almost 3." so you don't have to see the perplexed look on the cashier's face while she tries to figure out which is which, and why neither seem to be at a typical 3-year-old stage.  

Thankfully the 3-year-old's body seems to be seeking less input, and her self-stimulating behaviors are now mostly limited to playing with her spit and staring at the magazine rack next to her.  You breathe a sigh of relief when the cashier hands you your change without asking any more questions and you head out to your car.

This isn't my story.  I mean, parts of it are, but my reality is that I have one child and he's the typically developing charmer.  The other part of my reality is that for 45 hours a week, I am a caregiver for an almost 3-year-old girl with Autism and a rare genetic disorder called Schaaf Yang Syndrome.  I've been in her life since before she was born, and I love her fiercely, even though she's not my own.  

I can tell when she's having a "stim" day, I know when she's just avoiding her therapy rather than physically unable to participate, and I know that she is much more aware of her surroundings than she gets credit for.  I know that both she and her parents are warriors, and I wonder every day if I would have the strength to be the kind of parents that they are.

Emma is beautiful and unique and her story deserves to be heard.  I really hope that Emma Goes to School can help children learn to embrace their own unique differences, while showing the rest of the world that they deserve to be celebrated.

Kirstin (author), Emma (inspiration), Sage/Sagums (illustrator)

Kirstin (author), Emma (inspiration), Sage/Sagums (illustrator)

Why I Wrote Emma Goes to School

I honestly never set out to be an advocate for children with special needs, or even a children's book author for that matter.  But, I think like most people who find themselves passionate about a cause, it started with just one person.

In the spring of 2014, I was finishing up my Master's degree in Sociology. My nights were spent neck deep in research on teen parents and reruns of "16 and Pregnant", and my days were spent working with kids in real life as a nanny.  I was working for amazing people, who treated me like a part of their family, definitely one of the perks of the job for a small town Michigan girl with no family in the city. 

The Nelson's (Kim and Justin) had an almost 2-year-old son and a daughter on the way. In the biz, we call this 'job security'.  Everything was going pretty smoothly until one weekend about a month before their due date.  Kim's water broke unexpectedly, and Emma was delivered via emergency c-section.  After an uneventful pregnancy, we were all surprised to find that  Emma had some difficulties following delivery.  

At first, it was the physical things, doctor after doctor examining this poor little newborn. Terms like, 'truncated', 'trisomy', and 'decreased life expectancy' started coming up.  The Nelsons were originally told with 90% certainty that their daughter had Trisomy 18, a chromosomal disorder in which only about 10 percent of children reach their first birthday.  

Emma Nelson, 2014

Emma Nelson, 2014

After what seemed like an eternity of waiting for test results (but was really about a week), Trisomy 18 and a host of other disorders were all ruled out.  We began to accumulate a list of diagnoses and disorders Emma didn't have rather than figuring out what she did.

Eventually, Emma came home, and without a diagnosis to help explain what was going on with Emma, we did what we had to.  Which was accept the unknown and move on in finding a treatment plan that focused on Emma, rather than a diagnosis.

If I'm being honest, I felt pretty hesitant about becoming a caregiver for a child with special needs.  After all, I didn't know the first thing about feeding tubes or the variety of therapies Emma would need.  But, as I assume most parents and caregivers of children with special needs discover, the basic requirements aren't that different. Emma didn't need me to be an expert on physical and occupational therapy, she just needed love, patience, and guidance, just like any other kid.

Emma Nelson, 2017

Emma Nelson, 2017

Even after learning to join Emma where she is (instead of dwelling on what is or isn't to come), I still found myself spending nights thinking about Emma's future.  This time, from a social level.  I knew Emma would have all the love and guidance she needed from her amazing immediate and extended family, but how would other children react to Emma?  What would her first day of school be like?  How do you explain to children that young that sometimes people just look and act different, for no reason other than that's just who they are?

So this is why I wrote Emma Goes to School.  Inspired by all my concerns for Emma's future, I decided to imagine a fictional world in which children's anxieties about being different were put to rest, and each and every character learns to love and own their differences and those of others.  I wrote Emma Goes to School to inspire Emma Nelson, to show her that her differences are beautiful, and make her special and different, but never less.  

If this book could communicate that message to even one other child struggling with anxiety over their differences, then it will the second greatest thing I have accomplished in my life (after becoming a mother).

Emma of Monstoria, inspired by Emma Nelson

Emma of Monstoria, inspired by Emma Nelson

Kickstarter Launching May 1st!

Exciting news, our Kickstarter is launching on Monday, May 1st! Thank you so much to everyone who has taken the time to engage with us on social media, as well as supporting our cause. Now, let's make Emma Goes to School a reality!

Emma Goes to School Stickers!

We recently got our first batch of Emma Goes to School merch! We ran a contest on our Facebook and Instagram pages for a chance to win some stickers, and Emma Nelson was very excited to choose the winners. Congratulations to Brent Johnson, Josiah Sell, and Jane Kaup, and @prodoula!

Emma Goes to School Stickers
Emma Nelson picking the winners of the Emma Goes to School social media sticker giveaway contest

Emma Goes to School Supports Autism Awareness Month

In support of National Autism Awareness Month, we are very proud and excited to introduce you to Emma's friend, Jesse! Jesse is a quiet monster with a passion for all things science. Although his downcast eyes sometimes get confused with disinterest, Jesse is usually just keeping an eye out for misplaced pieces.

Illustrated by Sage "Sagums" Steiner

Illustrated by Sage "Sagums" Steiner

Introducing Sage "Sagums" Steiner, Illustrator of Emma Goes to School

Introducing a very important part of the Emma Goes to School team, our illustrator Sage "Sagums" Steiner! I was so lucky to find such a talented artist to bring my vision to life, it's hard to believe she's only 13 years old!

Introducing Sage "Sagums" Steiner, illustrator of Emma Goes to School