"One day, I want to write a book"

I am an only child and while I loved to play with my friends and neighbors, I was also a kid who always had my nose stuck in a book (still am!) and was constantly writing. Diaries, journals, short stories, plays. I even finished my first novel around age twelve. It was a journal-length mystery starring myself and three of my cousins as we searched (and found!) a missing girl. The book was aptly titled Missing, and I decided that I wanted to be a writer when I grew up.

I got older and entered the world of junior high, homework, and sports. I continued to keep a journal, but time and distraction led to decreased time for writing stories. Life went on to high school and college during which time all writing time was spent on essays and projects. I moved on to graduate school where I earned a degree in physical therapy and beyond that, the real world, forty-hour-a-week life began. I no longer had homework so I was able to return to sticking my nose in books for pleasure, but I didn't write at all. I worked toward a specialization in pelvic floor physical therapy, got married, and after four years, became pregnant with twins.

The twins were born at 24 weeks, 1 day. PLOT TWIST.

All the details of our journey can be found in my book or in future blog posts, but today, I want to focus on the writing.

During our time in the NICU, I jumped on Amazon and scrambled for information. Where were the books out there telling stories about micropreemies (ideally, ones who overcame the obstacles and were living happy, health lives)? There are books about EVERYTHING on Amazon - but oddly enough, there were very few on micropreemies. (Note - in the past six years, there have been about four additional books come out that I would have loved to have at the time that are now available for people going through this). I began to keep a journal, not intending at the time to later write a book. I wanted to keep track of the details, I wanted to remember everything so I could share the details with the twins as they got older. I wanted even the tiniest fact ingrained in my memory. The blood pressure cuffs that were the size of an ipod shuffle. The scalp IV's. The first baths. The sounds. The smells. The seasons.

When the twins were about three years old, an idea began to form. Between meal times, diapers, therapies, and playing, I began to think "what if?" And "is it possible?" I glanced through my NICU journal and tried to type pieces of our story on the computer. Nope, not going to happen. I bought a trusty journal, just like the ones I used to write in when I was twelve, got a pen, and began to hand write what came in to mind, and sure enough, the words began to come. I hand wrote the initial draft of Learning to Breathe in that journal, waking up before the kids to write and furiously recording every event I could remember during naps. I then began the process of typing the story, printing, editing, sharing with friends who gave ideas, running the whole thing by a NICU nurse to check for accuracy, and around a year later, Learning to Breathe was officially finished and available online. It's been two years and because of, well, life with two six-year-olds, I haven't marketed as much as I would like, but now is the time! As of this year, our book is now available in paperback AND ebook on Amazon with future plans to come.

I want to share our story. It's the real thing - the highs but also the lows, nothing sugarcoated, but ultimately, with a happy ending, and I want it to be out in the world to help others. The twelve-year-old me always wanted to be an author and now, thanks to our unique journey, I have the chance.

Not the normal Valentine's Day

So our Valentine's Day this year began on February 13 when an orthopedic surgeon reconstructed my deltoid ligament (a major stabilizing ligament in your ankle) and added cadaver tissue grafts to several osteochondral lesions. Brian requested Kenyan cadaver tissue so my running splits would improve - results TBD.

Anyway, because of this, we were pretty low key this year, but that didn't stop the twins from having an AMAZING time at their first elementary school Valentine's Day party and card exchange. Hannah chose JoJo Siwa cards, and Gavin picked scratch and sniff (tacos, pizza, cookies, and donuts).

"As Long as They're Healthy" ... but ... What if They're Not????

What do you do then? How do you share with everyone else while you're barely holding it together yourself? What do you do when your babies arrive before they can open their eyes, before they can manage one breath, before they can even emit the tiniest of cries?

This was the first medical crisis I had been through. Are the answers the same for those diagnosed with cancer, those caring for an ailing parent, those shouldering the burden of a new diagnosis for themselves of their child? I can't say, I can only say what worked for me - and by worked, I mean I made it through. I'm still making it through. I have never made perfect choices and never will as I am still learning how to do this mom thing every day.

Forget take it a day at a time. Take it an HOUR at a time, sometimes a minute. A day is a huge amount of time - twenty-four long hours during which eight million things can happen in the NICU so just pause and think about the smallest, next step. Sometimes that's a thought. Sometimes it's an action. Sometimes it's to cry. Sometimes it's to step forward and demand something. Sometimes its quiet, sometimes bold, sometimes massive, sometimes just a breath.

Take what you need. Leave the rest, whether until later or never. I'm a reader and a researcher so when the twins were born at 24 weeks, as soon as I was able, I was scouring for information. I had an encyclopedia-sized book called "Preemie," and I joined some micropreemie Facebook groups. Within an instant, information came flooding in - brain bleeds, death rates, blindness, seizures, intestinal death, cerebral palsy, learning disabilities. I left the Facebook groups until a few months later when the babies were stronger. They may be helpful to others right away, but it wasn't for me. Use it if it helps you. Unfollow if  it doesn't. I changed my approach to the "Preemie" book - preemies certainly do not start at the beginning and move steadily through their journey so why was I forcing myself to read it that way? No retina damage yet - skip. Intestines currently clear - skip. There was plenty to gentle delve into while setting the rest aside for well, hopefully never. If you want guests, allow them, If you don't, don't. If you wake up at 3 am and have a question for the NICU, call. If something seems wrong, speak up. Don't hold back, don't feel guilty. Some days will be good, some days will really just suck, but it can be done, and however you can do it is just fine. Keep steady and keep breathing. If there is one lesson to be learned from a one pound baby, it's just that.

Some days all you have to do is breathe.

Welcome!

Hello and welcome, everyone!

I am so excited to finally start this blog designed to share our story (as written in my book, Learning to Breathe), to empower parents traveling difficult journeys (and let's face it, parenting is tough for everyone!), and to provide a safe space for people to come together in order to support, learn, and share about all things preemie, special needs, infertility, NICU, and - well - really just about anything "life" in general.

A little introduction for my new friends here...my name is Heather Evans, and I am the 38 year old mom to 6 year old boy/girl twins. We live in a suburb of Kansas City with my husband (their amazing dad), our two cats, and our crazy Pomsky puppy. Our story is long - hence, the whole writing-a-book thing - but I'll give a short summary with more sharing of  memories as time goes by.

After four years of infertility battles, my husband and I finally became pregnant with our twins. I went into premature labor, and after ten days in the hospital battling to keep the babies inside, Hannah and Gavin were born via emergency c-section at 24 weeks, 1 day gestation. They were 1.5 pounds each and were born unable to breathe on their own, even unable to open their eyes. I describe the details in my book and will share more here over time, but we spent four months in the NICU, seven weeks on ventilators, and six months on oxygen. We battled severe intraventricular brain hemorrhages (bleeding in their brains), heart vessel surgery, infections, and a massive battle learning to eat.

BUT. Despite this being the scariest time imaginable, there was also joy. People we met who saved our twins lives over and over, no exaggeration. Friends and family that stepped in to help however they could. Therapists over the years who have cared for my children as if they were their own.

Since our time in the NICU, Gavin has been diagnosed with cerebral palsy and last year, he had neurosurgery and orthopedic surgeries in St. Louis. We have had PT, OT, and speech services in our home, in school, and in outpatient clinics. The twins are now in kindergarten (!!!), and I am learning to navigate the world of homework, packing lunches, bus stops, and kids who are gaining stronger opinions each day. I also work 30 hours a week as a pelvic floor physical therapist, my other passion second only to my family.

So again - WELCOME!

I am excited to share our past and future journeys. While we have some unique situations because of how our kiddos began, we are also just a regular family, learning as we go!