The Race is On! - Go TEAM EARLY OLLIE!

Like a lot of folks, I think, I knew nothing about prematurity before Ollie was born. Unless you know someone or have been there yourself, the common thought (I think) is that premature babies are just born small. Or, maybe not born small, but that babies born too early just won't make it.

We all know now that ain't the truth.

Babies born too early are small, true. But they also face different challenges that I never considered. Take eating for one: babies develop their suck, swallow & breathe reflexes around the 34th or 35th week of gestation. I thought it was just something babies knew how to do right away (which is true for term babies), and never thought that Ollie would have to "learn" how to eat. Because he was born before that reflex was developed, we struggled with feeding him when he started on bottle feeds. He would forget to breathe, or dribble his food out because he didn't realize he had to swallow, or he'd have the breathe and swallow part down, but forget to suck.

And breathing.

The reflex that we do day in and day out. Premature babies forget to do it! They forget to breathe! Isn't that odd, to think about? But it makes sense. They're not supposed to breathe for weeks yet, of course that won't be part of their essential skills yet. He's not supposed to be breathing yet, he's supposed to be swimming in amniotic fluid.

Pretty crazy, when you think about it. The things that you'd never expect to encounter, because premature babies are just small.

Sooooo not true!

So the race is on. The race is on to help the March of Dimes raise money to find out even more things about premature babies and help them through their rough patches.

It's not a race, per se, it's a walk. But you get the idea.

The March for Babies is an annual walk that year after year, raises money to help keep that research going for ongoing development of methods of keeping babies alive that, even 20 years ago would have faced a far more devastating prognosis.

So, this walk we're talking about, it's something I feel compelled to participate in. Ollie benefited many many times over from the things the March of Dimes has researched, so I have to give back. It's common courtesy, really. The give-and-take of friendship.

The March for Babies Event invites Walkers to participate by asking their friends and families to sponsor them in the effort to reach a goal dollar amount. Even if you can't participate, you can still donate to the cause, helping Team EARLY OLLIE! reach our goal.

My goal for my team is $250.

That's about $3.00 for every day he spent in the NICU.

So, you'll see in the next few days, a ticker somewhere here on this-here blog that shows how close we are to our goal. It's easy to donate, and I know Ollie would thank you if he could talk. Now, he might blow a raspberry in your direction or grab your nose, but without this research, he probably wouldn't be able to do anything.

I'll also be updating on our fund-raising progress and ask for you to sign up to come walk if you can. I'll also walk-through the donation and sign-up process when I get that, too.

Walking's easy. Walking's fun. Walking's good for you....and good for premature babies!


Here's the details.
Our Milwaukee-area Walk is Saturday, April 24th, registration begins at 9am with a 10am start time. It's a three-mile tour of Milwaukee's Lakefront, starting at O'Donnell Park. It costs nothing to sign up, but I will ask that you work a little bit to raise money for TEAM EARLY OLLIE!

I speak from experience....it really is a good cause. And if the weather's nice, the Team Honoree might be there!

Breaking Up with Medical Dramas

When I worked, my Friday mornings were filled with conversations with workmates dissecting last night's Grey's Anatomy. We loved Grey's Anatomy and watched its spin-off, Private Practice. Not with the same dedication as I did with Grey's, but watched it occasionally.

I would say week after week that I'm not watching Grey's anymore. Somehow the writers found the central line to my emotions. Long before those infamous pregnancy hormones began in earnest, I would be curled under my comforter, crying when Denny died. And when O'Malley's dad died? Neighbors probably thought a real tragedy happened in my apartment.

Then Ollie came.

Essentially living at the hospital, I wasn't home anymore on Thursday nights to keep up with these stories. My very own personal medical drama took over. DVR'd episodes would go unwatched. At home, the last thing I wanted was to be reminded of my drama unfolding 20 miles away.

I took a break; lost track of the story arcs, had no idea what was going on anymore. But when Ollie came home, I slowly dipped my toe back into the pool.

My first episode once Ollie came home was a heart-wrenching story of a little girl with cancer who's dad couldn't accept his daughter's fate. He spent his last moments with his daughter not cuddling and snuggling with her, but frantically trying to get her to Mexico for some miracle treatment.

You want to know when I cried? The first shot of the daughter with a nasal cannula on her face. I had no idea how her story would end yet, the very first shot had me sobbing.

I wasn't ready.

Now that Ollie is thriving, without a nasal cannula on his face, I can visit Seattle Grace again, but now without tears. I can get wrapped up in the drama that is finally so unlike my own that I can believe it. With no medical education, I don't know how likely or unlikely a patient's case is, I can buy the story off-the-rack, no alterations needed.

Until they take the path into micro-preemies.

Grey's Anatomy and Private Practice have both had me a bit sour this season. With their dramatic story lines that include the special drama that is reserved for parents and families of preemies and micro-preemies, I have to admit, I feel a little exploited. Nothing like having your own real-life situation that's so dramatic that a prime-time medical drama is written around it.

Using story lines that are written for the utmost in drama, these arcs can either flash me back to Ollie's NICU experience, complete with worry, tears, uncertainty and pain, or they can make me realize that the writers research the worst possible scenarios for a medical situation.

It's their job to rile up emotions, but with preemie stories, they tend to miss the mark a bit.

On Private Practice, it was reinforced to the parents of a 25-weeker that having a surviving micro-preemie is a tiny chance, given his birth. It was cruel to let him live on a ventilator and with a feeding tube. They were hurting him by hoping for a miracle.

The pulse-ox monitor wasn't even on! Pshaw...Those doctors don't know nuthin'.

In the end, the story behind this 25-weeker on Private Practice had the parents tearfully said their goodbyes to their baby, pushed by the doctors to end his suffering.

I realize that these story lines are written for high viewership. I realize these writers probably took a quick few glances at some worst-case scenarios of preemie-hood and pounced on them. I realize I don't watch medical dramas to be educated on cancer, premature births, bombs in or poles through the abdomen. I realize in an hour-long drama, they don't have time to dedicate to a true story of preemie success.

But shouldn't they feel some sort of responsibility to educate on the better sides of real-life medical dramas?

Wouldn't they want to reinforce the idea that our medical advancements aren't just for the old and feeble, but also for babies who are dealt huge odds against them?

Had that episode of Private Practice aired a year ago, it would have crushed me. Parents with a child in the NICU have so much stacked against them. The last thing that they need is anyone telling them that what they're doing for their child is cruel, causing suffering, and outside reality that a baby born that early could survive.

If anything, the prop-master should have made sure the light was on on the pulse-ox monitor.

A year since Ollie's been discharged, we were able to watch the episode. We even paused it a couple times to discuss our experience and what we learned versus the drama being shown. We pointed out the things that made this an unbelievable story, rather than buying the idea straight off the rack. And, while that baby's story is truly a worst-case scenario that could have happened, I ended the show with a feeling of sadness and heavy hearts.

Not because they didn't do everything to save the baby, but because there are parents in the world, going through a similar situation. Right now. Today.

Parents who need a positive story right now didn't get it. They got a worst-case scenario gleaned from medical information for high ratings, and that, truthfully, honestly and whole-heartedly, sucks.

I would write more about how much that sucks, but my 28-weeker, who was less than 2 pounds at birth, who lived on a ventilator for 10 days and ate through a feeding tube for months, who had parents who prayed for miracles and got them, is waking up from his nap.

the models on the cover of Parenting Magazine are not my mom's age anymore, but mine

This fact of life hits me occasionally: I'm a frickin' grown-up.

When did that happen?

Every now and then I get this feeling, this shock that I'm an adult. It hits unexpectedly most times. When I'm setting up the coffee maker for the next morning, making a dinner that includes vegetables or talking to my husband about Ollie's development concerns. It hits...

I've changed. I'm a grown-up with grown-up responsibilities.

It's sometimes a little jarring.

I generally think of myself as being about 16 and still la-la-la-ing my way through life.

When did this all-important, but almost imperceptible change take place?

Possibly, it was college graduation, unleashed into the world, using my hard-won education to better my life, by uh....telemarketing and receptionist jobs and a brief-but-eye-opening detour into door-to-door sales. Duped by cleverly worded newspaper ads, I walked a quaint town selling discounted Golf foursomes. In 80 degree weather, cute high heels and full-on "business" attire, learning the suggested hand gestures to use to gain more sales. Clearly, this was a mistake an adult wouldn't make.

Perhaps when I moved out on my own? Without roommates to blame things like electricity-cutoffs and missed telephone calls on, suddenly I'm responsible for all the bill-paying and dish-washing. But that's all day-to-day grind stuff, anyone with any amount of common sense realizes you wash the dishes before you get roaches.

Another option is a combo. A one-two punch of personal milestones. Marriage and parenthood. Nothing like settling into newlywed life with joint bank accounts and matching cellphone plans to help you to the conclusion that you're kinda like your parents. Add to that a tiny newborn to drag you kicking and screaming into adulthood.

But that's not spot-on, either. I considered (but clearly not bought into the idea) long before I met Matty and Ollie was born that I had evolved. But changing my last name to reflect a new identity was part of the evolution.

I'd considered the idea that maybe I wouldn't ever be a parent, but it happened, in a completely unexpected fashion that really threw us for a loop.

And I completely rearranged my life to keep Ollie in it.

Is that when you become a grown-up? Rearranging the things that are important to make room for someone or something else? That subtle change of priorities when you actually leave work on time and exchange your sporty(ish) two-door for a sedan? When you're introduced to someone who makes you realize that It's Not All About You anymore?

It's a combination of everything. But every now and then it hits me. I'm not 16 and la-la-la-ing through life. I dress appropriately for the weather, don't mind Elton John, feel a buzz after one amaretto sour and eat leftovers. I drink coffee, use coupons and plan meals. I'm in bed by 10 and straighten up the house before turning out the lights. I call the cops on suspicious behavior in my neighborhood. I've taken note that the models on the covers of Parenting Magazine are not my mom's age, but mine.

Now I know how my dad felt when he saw Paul McCartney on the cover of the AARP's magazine. How can this icon of my generation be on an old-folks publication? he asked in the same way I wonder how someone my age can have a family, a house, a respectable car and vegetables for dinner.

This just in...

Ollie loves Charlie Daniels.

There is a Geico Insurance commercial, part of their series of "rhetorical questions." Does Geico car insurance save you money on insurance? Does Charlie Daniels play a mean fiddle?

The commercial comes on, he stops what he's dong to watch. Big smile, undivided attention, toy left abandoned during Charlie's 30-second solo.

Commercial ends, Ollie cries.

Back it up and give Ollie instant happiness.

This Week in Ollie History...

A year ago, Ollie was living in the NICU of West Allis Memorial Hospital. Plugging his way through growth and eating challenges, occupational therapy, extra oxygen, bradycardias and apneas, hernias. In all, he stayed 84 days.

Going through this time of year, I often think of what we were doing "last year at this time." As in, "Last year on this day, Ollie weighed two pounds." When January 20th rolled around, I thought, "last year on this day, he wore clothes for the first time."

This week in Ollie's history was a turning point for us. We got lots of great news and big steps forward in his growing.

This week last year, we got the news that his ROP (retinopathy of prematurity) was resolving itself. ROP was a big scare for us, and other preemie parents, since it can lead to blindness. It's thought that too much extra oxygen before a premature baby's retinas are fully developed causes scar tissue to develop. In severe cases, the retinas detach from their...retina holders? and laser surgery is used to put it back? Something like that, anyway....Stevie Wonder is blind from ROP. (Did you even know that Stevie Wonder was a preemie? See!? Lots of things learned when you know a micro-preemie!).

We learned two weeks earlier that Ollie was developing scar tissue on his retinas and was diagnosed with Stage One ROP; it could progress worse, or start resolving on its own. Stage Four is the most severe. Jeez, yet another thing to pray about. During this week in Ollie's history, we learned it was resolving itself. HOORAY! Two weeks later, we would be cleared and only have to have another checkup in a month. (By the way, if you ever have the option of watching a baby eye exam, don't do it! Look away.)

Even more exciting, this week in Ollie's history was his movin' on up from his Isolette(R) incubator to a BIG KID, OPEN AIR, NICU CRIB! Gone were the portholes to maneuver through when getting him dressed! No more was the puzzle of trying to figure out how to change his diaper from the side, rather than positioned at his feet! Finally, I had a mom's ability to simply pick her child up when he cried.

A GIGANTIC MILESTONE for NICU babies, that switch from incubator to crib. It meant he was one step closer to those big double doors. It was tangible, visible, positive proof that he was getting better. He could maintain his temperature! It happened a little early, actually. He was supposed to weigh 1800 grams (just under 4 pounds) but they evicted him from his Isolette at 1783 grams; I didn't settle into the idea that he was surely out of his box until a couple days had passed. I didn't want to sell my wagon in case he wasn't ready for the car.

Wrapped up tight in footed jammies, knit hat and fleece swaddler, he was our 4 pound Baby Burrito. Snug as a bug, he looked around at his new surroundings and seemed to focus on the things that made the move with him: his pictures of BobCat and Li'l Baby Kitty and me and Matty. Things that seemed to give him comfort as he kicked the tires of his new home.

He didn't have to go back into the box.

Now that we're heading into Spring, the memories are getting easier. On his birthday this year, I felt a little blue, given his birthday wasn't the most wonderful day of my life. In fact, with all its trauma and uncertainty, it was a bit of the opposite. Just remembering the daunting feelings as we just started down the path that was Ollie's first three months was enough to bring on a melancholy mood.

But now, "Last year this time," we were rounding second and heading for third and the memories are getting easier to think about. We would still have about a month to go in his NICU stay, but it was a busy month for everyone and it went fast.

He stayed out of the Isolette, we moved back to our window seat, he worked on his suck, swallow & breathe coordinations and had his hearing test. We brought in our carseat so his oxygen levels could be tested while he sat in it...a BIG indicator that your NICU student was soon graduating. We studied our Infant CPR DVD and passed our test, made the first doctor appointment and "roomed in" in the parents' rooms to make sure we knew what we were doing with him round-the-clock.

Instead of remembering that "today last year, he had a blood transfusion," I'm remembering that feeling of relief, happiness, delight that he was getting better. Growing bigger. The artificial womb that was his incubator, maintaining his temperature and keeping him isolated was no longer necessary.

It was a great week.

Lone Star Belt Buckles and Faded Old Levi's?

We like cowboys. We think they're cool. Cowboys roping. Cowboys riding. Cowboys in their cool pearly snap shirts sitting around a campfire, eatin' their jerky...what's not to like?

But mommas aren't supposed to encourage this behavior. Just ask Waylon...or Willie.

We recently had a feeding evaluation for the little bugger. Ollie has decided it's a neat trick to gag and cough when fed anything chunkier than the very smoothest purees. Give him a baby cracker, and he wretches when he bites a bit off. He has thrown up the entire content of his stomach when a Gerber Puff reached the back of his mouth.

Nothing comes easy with this little dude.

So, I called my case worker at Birth to Three and scheduled an evaluation.

We set up shop in the kitchen. She sat and watched as Matty fed him his favorite treat, sweet potatoes. She observed as he picked up a Puff, marveled over his pincer grasp and noticed when he went red and readied for a throw-up.

She didn't freak out when he gagged, she made him forget about it! She distracted him when he wretched and made him smile, rather than vomit. These people are so knowledgeable.

She left us with some tips on how to get him to eat chunkier foods: Crunch some Puffs into his purees to get him used to a new texture. Give him a carrot to chew on, to let him experience some stronger things in his mouth. Brush his gums to desensitize an over-reactive gag-reflex. REMEMBER THAT HE'S NOT GOING TO CHOKE ON A CRUMB!! Give him a stick of Beef Jerky.

um...humina-wha...?

Beef Jerky. Really.

The savory favorite of cowboys at home on the range.

A trip to Pick n' Save left me confused. What flavor of Beef Jerky will a one year old like? Teriyaki? My instinct tells me that Black Pepper wouldn't go over well, same for the Hot Red Pepper. hmmm...Sweet and Spicy?

I left empty-handed.

I just can't wrap my head around feeding my li'l pardner Cowboy Food. What's next? Pickin' guitars and drivin' old trucks? Lone Star Belt Buckles and Faded Old Levi's? I'm supposed to be encouraging him to be a doctor, or lawyer, or such.

So what do doctors eat?

Dear Oliver, I hate to tell you this....

But you're sitting.

You don't realize you're doing it, but you are. You're sitting unassisted while you play with your "Starter Laptop," pushing buttons to make the kitty meow, the boat toot its horn and the airplane fly overhead.

You are sitting.

You are sitting when you play with your stacker, removing the plastic doughnuts from its stem like a pro.

You are sitting.

You are sitting when you lean forward to see what the cat is doing, what that noise is outside (the garbage collectors), to reach your toes or grab for the remote.

You. Are. Sitting. Unassisted.

Why won't you do it in the middle of the floor?

The SS Oliver

We are fans of storage bins. The plastic ones that store everything from old clothes to Christmas ornaments. They are sturdy, durable, and most importantly (when it comes to basement storage) are tight enough to keep spiders and other creepy crawlies from setting up shop in our storable goods.

Given my long-time love of the storage bin, I wasn't too surprised to see Ollie's Occupational Therapist walking up the driveway with one. I assumed she noticed our clutter and was good-heartedly helping us straighten up. She's done things like this already, noticed something we need and surprising us with a visit with that very item.

De-cluttering was not the trick she had up her sleeve.

Turns out, the storage bin was the latest weapon in her arsenal geared to get Ollie upright.

Ollie spends a couple hours each day in his bin, strengthening his sitting muscles. Its sides are slightly higher than shoulder-height, and the smallish size prevents him from straightening his legs, forcing him to "circle sit" with the bottoms of his feet together. The higher sides give him stability for when he starts to topple, and teaches him that his arms can be used to catch himself.

Ollie's love-affair with the bin wasn't as instant as mine, however. His first couple sits proved stressful for him, but once his beloved Puppy blanket was in there with him, it wasn't so terrible.

In fact, he seems to like it.

We've named it the SS Oliver. With a pull-handle-string (actually speaker wire), it also doubles as a Choo-Choo-Train, with him being tugged around the house in a new game.

Whatever works with this kid.

Matty and I commented that we never would have thought that a storage bin would be a helpful tool, and had we thought of it, we certainly wouldn't have told anyone.

It seems wrong, to mention that Ollie's hanging out in his storage bin, but you gotta admit, it's pretty cute.

I don't think they were the same tears of pride that I had streaming down my face.

Having a premature baby is so unlike any other journey in parenthood. First there's the terrifying prospect that this tiny creature pulled from your belly very unexpectedly just might not make it. Then as you absorb and process all the concerns from the medical aspect, you reach the point of asking the question, "will he be alright?" The true question being, "what mental and physical challenges will he face?"

Truth is, early on, no one can answer these questions. Only time will tell.

Ollie and I are entering a No Man's Land of sorts.

At 13 months old (actual, 10 months adjusted*) he isn't able to sit independently yet. Up until a few weeks ago, putting him into a sitting position would cause tears of frustration for both him and me. His arms would flail, his hips would thrust upward and out, and he'd straighten out like a board, all accompanied by a soundtrack of yelling so loud I was afraid a neighbor would call Child Protective Services.

He was perfectly content to lie on his back, chew on a toy, and kick his feet ferociously, and I let him. If having him sit was so awful, why make him do it? He's been through so much just to survive that he's entitled to a little laziness now, right?

eh, not so much.

He receives weekly Occupational Therapy sessions through a program designed for Premature Babies called Birth-to-Three or Early Intervention. Knowing all they know about preemies and their specific challenges, the goal is to catch delays early and help them work through them before it becomes a bigger obstacle. It's a great program. Not only do they keep track of Ollie's progress and help him along, but it's for us Parents who are the wallflowers at the high school dance. Shuffling our feet, awkward and gawky, avoiding eye contact with the Cute Boy, just because we're so unsure of what to do next.

His OT lit a fire under my dupa a couple weeks ago, saying that if he doesn't sit unassisted "soon," that we'll have to bump up his sessions to twice weekly. I love you, OT, I really do, but twice a week visits is a little much, don't you think?

So we're working on it. We're working hard on sitting. Stretches and exercises, moving and working out, our play time turns into something more substantial. (Do parents of termies have to do the same?) We started out sitting behind him, with him leaning up against our belly to play with a toy (thanks to everyone who participated in "Project Toys That Help Ollie Sit" for Christmas and birthday!) He would be so excited to play with this new toy that he didn't realize he hates sitting. But, he would get so excited about this toy, that his second reaction was to see if we were as impressed as he was. He would look at the toy, and look back up at us as if to say, "DO YOU SEE HOW COOL THIS IS????" In his twisting to gauge our response, he would flatten out.

Next came the leaning against the couch surrounded by pillows so he could simultaneously play and determine if our reaction was appropriate. Pull him further out from the couch and take away his leaning back abilities day by day and viola, he sat!

For three seconds. With a Boppy pillow around him.

BUT HE SAT!

I think my applause and cheering for his accomplishment scared his socks off, because he cried.

I don't think they were the same tears of pride that I had streaming down my face.

Premature parenting is unlike any other parenting journey. Wading through the fears of survival, the health concerns, the doctor appointments, the surgery consults, the OT appointments and feeding challenges. It sure can be lonely. But when he inches closer to reaching a milestone that we've been working on for months, it makes things sweeter than sugar.

So, my son's first birthday was a week ago.

Let me repeat that. MY SON'S. FIRST BIRTHday was a week ago.

Can you feel the incredulity in my voice?

Is this why he can no longer wear the cute tiny outfits from Target's Newborn section?

My son was born 3 months early. When he arrived so impatiently, he weighed 1 pound, 9 ounces; that's 711 grams for any metric-based readers. Just over a pound and a half. He was the size of a shoe, about the weight of a loaf of bread. I realize newborns are small, but they're not supposed to be that small.

Given the daily prayers for growth, the celebratory texts and eMails going out to family and friends announcing every gram put on, and the steak dinner in honor of reaching the two pound mark, I thought I would be immune to a Mom's wish for her child to stay small. The Carter's tagline on some hand-me-down outfits was, in fact, "If they could just stay little." When I first read it, I snorted. I literally snorted with contempt for those moms who *don't* want their child to grow.

He grew. He continues to grow. On his first birthday, he weighed 20 pounds, 12 ounces. He is now the weight of a car tire, an obese cat or a record-breaking fish. HE'S HUGE!

I recently, carefully and thoughtfully, went through Ollie's wardrobe. It was a daunting process. We waited for two months for him to be BIG ENOUGH to wear a PREEMIE onesie, and now that same outfit looks like it would clothe a cross-dressing Barbie doll. I unfolded a favorite froggy outfit from his first days at home and thought, "AWWW....where did my little tiny baby go?"

I wander through the Newborn department and sigh with mixed emotions. I couldn't wait for Ollie to fit in Newborn clothes. When he graduated to 3 month size, we celebrated; another happy text to update those who were there for the NICU journey. Now I miss the cuddles of a newborn, the tiny mittens he wore, the being able to lift him without a groan and "putting my back into it."

It brought tears to my eyes. I cried because my son has grown.

I'm getting like a regular mommy now, aren't I?