Summer summer time.....

Can we all just throw up our hands now at everything going on in the world? What on earth, 2020?

So first of all, I want to make it very clear that I thank God every night that my family remains healthy. As of this blog post, COVID-19 case numbers are staggering, reaching around 70,000 new cases per day and close to 1,000 deaths. I've heard horror stories from patients who work in hospitals about how what was once a "COVID floor" has now overflowed into patients all throughout the hospital with triage deciding who has the greatest chance and deserves the vent and ICU bed. All I can do is squeeze my kiddos and take things day by day.

So home school finally ended (though about to start back up - back to that in another post!), and the kids and I were beyond done with it. As much as I love the twins, I am certainly not a trained teacher and definitely do not have the gift of patience that teachers possess. We made it through, and the twins are officially first graders. While originally planning to do summer school, I finally pulled them out when the schedule still hadn't been decided until a few days before and I had to assign my patients to my work schedule. We try to do a little school at home, but the twins are full of dramatic sighs about such dreadful things as - reading - because it remains very hard for them.

Here's the thing, though: I don't want to dismiss this entire time of COVID because (and I mean absolutely no disrespect here to those who are sick and those who have lost loved ones) there have been silver linings and special movements. The twins learned to ride two-wheel bikes (HUGE for preemies!). Hannah finally got her ears re-pierced a year after they unexpectedly grew shut due to a mom-fail at dance recital. The twins are becoming absolute FISH in the pool. I started a new job at a pelvic health specialty clinic that I absolutely love. When our trip to California got canceled, we drove to Arkansas and had an absolutely amazing time swimming, boating, and fishing. Hannah lost her first tooth.

I was worried the twins would fight more during quarantine, being together so much, but oddly (knock very firmly on wood), they've actually become closer. They have "sleepovers" in each other's rooms about half the days of the week. I hear them having little conversations with each other. Don't get me wrong; they are still siblings and I do hear lots of "Han-NAH!" but overall, I've been pretty impressed.

Wear your masks, people. Protect preemies and others who are at-risk. Wash your hands. Then wash them again. Stay home if you're sick or if you have been exposed. Think of others and not yourself. My children have been on ventilators - trust me, it's not fun for anyone - let's all help each other out and be in this together.

Macaroni for breakfast - and everything else homeschool!

I grew up with my mom as a teacher, and when I found out I would be homeschooling the twins for a while due to COVID-19, I had visions of nicely organized days and beaming students. Needless to say, taking two six-year-olds out of their routines and away from their TRAINED teachers as well as occupational therapy, speech, special ed, etc.  - we've had our ups and downs. We've had days when my one who is a sensory seeker is literally jumping on the couch (no, that's not allowed, but yes, it happens) and days where my little one who has ADHD spreads out reading one simple kindergarten story over an hour and a half because after every two words, he dramatically throws his arms out to the side declaring, "This is so hard! Why do I have to do this?" And yes, I fully understand that this is not unique to preemie and/or special needs parents - we're all doing our best out there in this new (for most of us) world of home school. Sometimes I have it together and sometimes, one of the kids wants macaroni and cheese for breakfast and I'm like, "you know what? Sure, let's go with that." 

I had expressed some concerns (okay, I probably sent a fairly desperate email) to Gavin's teacher and special ed teacher regarding the lack of focus and major distractability. None of this is new, but I wasn't sure how much being out of his normal setting was throwing him off - or was he seriously wandering all over the classroom at school, too? Turns out, yep, pretty much. I had a virtual call with everyone on his team and while they can't give me this suggestion, when I mentioned discussing medication with his pediatrician, they seemed very encouraging. 

So that's where we are. The call to the pediatrician goes in Monday and we get the paperwork for me and his teacher to fill out. 

I remember in the NICU - when being presented with so many scenarios - cerebral palsy, wheelchairs, blindness, deafness, possibly never living on their own - when things like "learning disabilities" comes up, I blew it off completely. I could deal with that later - lots of people deal with that. But now that it's reality - yeah, it's for REAL. Mad respect for all you parents who have been working with this for a while, and I'll take any suggestions you have!

Meanwhile, we've been really enjoying all this extra time together, and Hannah is about to lose her FIRST TOOTH any day!

Still not sure what to say

So this blog had just started and I was all excited and then - coronavirus. Forget about what to write, I have had no idea what to think, just like everyone else. We're all scared. I'm scared because my kids are high risk, and I know what it's like to watch your child on a ventilator. Their lungs are compromised, particularly Gavin's. This virus is so horrific to so many, and I'm terrified. Most people are, and I wish I knew what to say.

These last few weeks have brought back all of the anxiety of the NICU and the first couple years afterward. The breathing treatments, the oxygen desaturation, the extreme fear of germs, of grocery stores, of gas pumps, of the knowledge that even a cold could be deadly (at that time). The most important part of my day is giving Gavin his twice daily treatments for his asthma, making sure we have plenty stocked in our cabinet while also pushing vitamins, probiotics, water, fruits, and vegetables into all of us in any way possible. We sanitize. We stay home. We wave to our neighbors from twenty feet away. And then we pray.

I allow myself only about four news checks per day to avoid overwhelming anxiety. I focus on trying to switch my physical therapy patients to virtual treatment and home schooling the twins. We walk our dog, and everyone in our neighborhood politely crosses streets and keeps compliant with social distancing. The twins play in the backyard and drive their battery-powered car in the cul de sac, yelling hello to their best friends next door when they call down from an upstairs window.

And we wait.

Currently, the twins are missing their friends, but they're happy with all this extra mom and dad time (or so they say!). Our dog is loving all her walks. And we focus on this time together, taking everything day by day, just as we did six and a half years ago on Tulip Lane in the NICU.

Love to everyone, and stay healthy.

"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!