So NOW what, Sleep Expert Book Writer Lady?

I used to know two facts about Ollie. He was one of the best sleepers around and he'd never go for the Beef Jerky idea from a recent Feeding Evaluation.

Turns out they were both wrong.

I finally worked up the gumption to try a Slim Jim with him. After a month of not really progressing with eating as I'd hoped, the worry about him actually getting a chunk off was finally outweighed by the goal of getting him actual food as his main source of nutrition.

It's really hard to give a baby Beef Jerky. It feels so....Britney Spears. Like I ran into the Quik Trip barefoot to re-fill his bottle with Mountain Dew. While I'm at it, do I stop at Starbucks for a baby-sized Carmel Frappuccino for him to slurp on?

I'll tell you one thing: it's odd leaving the gas station with a bouquet of Slim Jims; it's downright bizarre knowing it's for a 1-year old.

And, crazy thing here. Get ready, because I'm about to blow. your. mind.

He likes it! He chews on it, working on desensitizing his gag-reflex while enjoying the mild kick of beef jerky, little multi-tasker. It's a perfect snack for babies with eating challenges. Its tough skin keeps him from really biting anything off, but his jaw muscles are working that bit of jerky and he's learning to chew. And his little baby fists can snatch up that stick with surprising efficiency. So it's working, this Slim Jim Jerky idea.

What's not working are his sleeping habits.

He slept through the night for months, since June. I was proud of the little guy. For any milestone envy I got from hearing about what other babies his age are doing that he hadn't yet mastered, I had that little nugget of consolation. Yeah, but Ollie sleeps through the night.

Then, starting with his first ear infection, he'd wake up once in the night. Nothing big, just out of the ordinary crying that was happily soothed away by a minute of shhhh-ing and finding his puppy blanket.

The ear infection went away, but the night-waking remained.

Then he got sick again. Our once-a-night-wakings went to twice-a-night-wakings. But, still I wasn't worried. He was sick and still easily lulled back to sleep. I could continue doing this while researching Sleep Training methods that would help him learn to put himself to sleep.

In the past week, though, things have gotten really outta control here.

We're the "Before Family" starring in any book about getting your child to sleep through the night.

No matter what book you're looking at, there we are. Child awake from midnight to three, mom desperate to get him back asleep. Child wondering why it isn't play time, mom wondering what happened to her sleeping baby.

I shhhhh him; he cries. I pat his belly; he kicks his legs. I, out of options, pick him up to snuggle him to sleep; he wakes upon put down and blows raspberries.

If it weren't 2:30am, and we weren't on the fifth put down, it'd be pretty funny. If I didn't get to eat at the unlimited buffet of sleeping through the night for a good 6 months, it wouldn't be so devastating. If it were summer time and Matty didn't have to work, this new development would feel more manageable than it does now.

Insert big, enormous, dramatic, feeling-sorry-for-myself SIGH here.

I don't know what happened, I just know that something has to change.

I picked up the book "The No-Cry Sleep Method" a couple weeks back, knowing that our habit of snuggle-to-sleep would have to soon change. Getting him to bed involved a good routine of bottle, quiet play-time with Matty, then the hand-off to me to snuggle him to sleep. (Of course it was my job, Matty's arms are too long.) While I knew that he wasn't learning to put himself to sleep, it became a comforting habit for both of us. What mom doesn't enjoy that time with her baby, him sleeping soundly on her chest?

But in the back of my mind, I knew he has to be able to put himself to sleep. He's become accustomed to sleeping on someone, noise and rhythm of my breathing, close heartbeat and warm arms surrounding him in a cozy cocoon. More importantly, it has to be a mommy-cocoon. No daddy-or-grandma cocoon is good enough, it has to be mommy's shoulder he lays his head on to drift off.

So, with these habits firmly entrenched, how would he be able to fall asleep alone, flat in his crib, with only his puppy blanket for security?

Yeah, um. He can't.

I'm realizing my rookie mistake.

According to the "No-Cry Sleep Method" book mentioned above, there are ways to teach him to fall asleep on his own, without going so far as making him "Cry It Out." So, yesterday, according to the book, I bought a soothing CD of rainforest sounds to play while I still snuggle him down. We are to play that CD during the snuggle-down, for naps and nighttime, so he starts to associate those sounds with sleep. The goal is that one day, in the not-too-distant future, just playing the CD will make him sleepy. One day, I will be able to put him down, in his crib, awake, with that CD playing, and he will drift off to sleep soundly and happily.

Makes sense, in a Pavlov's Dogs sort of way.

But, and this is the part I'm struggling with. Everything else the book says, I'd already been doing out of instinct and this no-sleep thing is getting worse, not better.

So NOW what, Sleep Expert Book Writer Lady?

Is it as easy as sleep-que-association? Will using this Rainforest Retreat CD really be enough to "train" him to fall asleep on his own?

I don't know, but then again, I didn't know that Slim Jim would help him eat.

Maybe its indigestion that's waking him up.

Happy Home-Coming Day, Ollie!

One year ago today, we got to leave the NICU with our baby.

We packed up his little outfits, collected his souvenirs, learned how to work his monitor and oxygen, fed him there one last time for Auld Lang Syne and walked through the double doors. With our Ollie.

For months, we came and went at least twice a day without him. Knowing that he needed to be there was little consolation to leaving the hospital, day after day, without a baby.

But we got through it. Prayers said were answered and our little buddy made it through his rough start.

Now we were going at it alone. No nurses to feed him in the middle of the night. No doctors to read his charts and tell us he's doing great.

It was just us.

Our little family.

It was terrifying and freeing in the same breath.

Terrifying because although we'd met him months before, we didn't really know him. Up until that point, his nurses had the insider information on how to soothe him. They had the confidence of feeding hundreds of preemie babies to do it with an expert hand.

How do we soothe him? How much will he sleep? How do we cut his fingernails? Will BobCat sit on him out of jealousy? On top of that, he would still sometimes freak out while eating and maybe-kinda-sorta forget to breathe and set off his apnea monitor. Aaaaand, maybe sometimes his oxygen tubing would get stuck on things on the journey from the bedroom to the living room.

Things regular parents go through, right?

But finally! Finally! We didn't have to get dressed to see him! He was in the very same room! Every squeak, grunt, moan, growl he made, we were there to witness it. We didn't have to hear about the cute thing he did when he was awake before...we were there to see it ourselves.

It. was. awesome.

That first night home, I remember waking up in the middle of the night to his little squall of a cry. I was excited. I felt like I'd been a benchwarmer in a big game, and the coach finally tapped my shoulder to go in to win it. Armed with all my skills I'd learned but never used, assessing the situation, we asked: Is he hungry? A bottle was unwelcome. Wet? Fixing that option didn't settle him down, either.

Thinking it was too quiet for him (the NICU environment is somewhat noisy) we played for him a soundtrack of Little Einstein's classical music. I held him while he calmed down and fell asleep staring at me. He had fallen asleep while I was holding him before in the NICU, but never in the middle of the night. Never when he just needed to be held. It was finally at that moment, that I actually felt like a mommy, 84 days into the experience. It was a giant leap as we became the resident Ollie-Professionals.

It's been a year now, since he came home. This day feels more special than his actual birthday in a way. Because this day was filled with anticipation, excitement, preparations and happiness. We couldn't wait for this day for months, and it was finally here.

This is the day our family was finally complete in the most honest form of the word.

Happy Homecoming Day, Ollie!

You are my most favorite boy in the whole world.

--------
I can't do a post about how awesome it was to have Ollie home without giving a huge thanks to the staff at West Allis Memorial Hospital, to our friends and family who prayed for and cheered him on from Day One and most importantly, a Thank You, Lord, for keeping him healthy and in our lives.

Getting the TEAM together.

Okay, we're 36 days out from this year's March For Babies. Here's what to do if you either

a) want to sign up for walking and be part of Team EARLY OLLIE!

or

b) help us reach our goal of raising $250 for the March of Dimes.

For those reading who can walk (Saturday, April 24th), please do this...

Visit Team EARLY OLLIE!'s team page at the March of Dimes

and click on the "JOIN THIS TEAM" Button under the image. It will ask you to enter your name, your PERSONAL fundraising goal, which will be put into the "TEAM EARLY OLLIE!" Bucket, and some other key information. Nothing scary, I promise.

You will be shown different ways to stir up interest and create ways to inspire your friends and family to donate to your personal goal, helping fill our bigger bucket.

Right now Team EARLY OLLIE! has only one lonely member. Me. So, don't make me be the only one!

For anyone who can't make it to the walk, but wants to donate to our bucket, here's what you can do. Click on the Purple Badge over to the right. I just did this; it'll take you to MY page at Team EARLY OLLIE! and you can donate to my goal of $250.

For MY reasons to donate to the March of Dimes, read here or here to be taken to the March of Dimes website.

Please...your donation is appreciated, so, so much. Five dollars, whatever you can contribute. It goes to a great place.

Thank you!

Cough, fever & chest x-ray - who knew it'd be a great day?

Starting Tuesday, Ollie developed a bit of a cough. Nothing too big, but certainly a new addition to his daily repertoire that we noticed it. He takes it in stride, a cough and a smile as he goes about his baby-business.

Matty suggested I call the doctor and I replied that he doesn't have a fever, so it's probably nothing. I checked on him before settling into bed on Wednesday night and came out with the news, "so much for not having a fever."

He was warm, but sleeping soundly.

Thursday was a different sort of day.

We woke up at 7, he ate, and went down for a nap around 8:15. He slept until noon, woke up, ate a bit, and was napping again 45 minutes later. All with a fever of about 102.1.

A four-hour nap definitely isn't part of his daily repertoire. So, true to Matty's prediction, I called the doctor.

We were able to be seen at 3:45 that day and got a full work-up.

Ears look fine, throat looks good, lungs sound perfect; it's probably viral, with nothing really to do but wait it out. Except...hmmm...given his weak lungs, we better look into this a little further.

I've written about Ollie's lung issues before and any mention of a cough kinda sends doctors into a tizzy. They want to make sure that pneumonia isn't moving in or that his lungs aren't being further insulted by another sort of infection.

We were sent for a chest X-Ray.

We hadn't had a chest X-Ray since April of last year, when we added Pulmonology to his list of specialists. And that was an experience. Held down by sand-bags and Matty, he screamed through the procedure. (Crying's good, though, they say. It opens his lungs up for a great view of the landscape.)

Now that he's older, I thought it might be a little easier. I hoped so, anyway, since Matty wasn't with us.

Not really.

Once they're able to support their heads, babies are strapped into a tiny electrical-chair-looking device, shirtless. Velcro straps around his feet, belly, head and with his arms strapped down next to his head.

True to form, he cried during the procedure; I almost did, too.

It lasted all of two minutes until I could cuddle the anger and fright out of him.

Before we even left the hospital, I got the call from the doctor with the report that his lungs.....



LOOK GREAT! So, SO much better when compared to last year's view.

HUZZAH!

He really is truly growing out of his Chronic Lung Disease! They said this would happen as he grew, with new, healthy lung tissue overgrowing and overpowering the damaged parts caused by his early start. But with a name like "chronic" it sounds like something he'd have forever, right?

So, YAY!

Despite the cough, the fever, the sleepiness and a bit of crankiness, Ollie is continuing to get healthier. Despite the months of supplemental oxygen, his lungs are getting over their initial weaknesses and problems. Despite the worry that a cough could turn into something more sinister, we got great news; he's still getting stronger and healthier.

It was great news on a not-so-great day. And I am ridiculously proud of his lung-growing abilities.

***Editing to add***
Today, the day after the day we had yesterday, Ollie feels much better. His fever seems to be gone and he thinks I'm funny again. Phew. I was missing my captive audience that thinks I'm hilarious.

WHAM! there it is again.

Today's education: babies are susceptible to RSV (respiratory syncytial virus), with symptoms generally cropping up as a cold for older kids, but worse for babies. It's the Number 1 cause for babies under one year old to be hospitalized.

For premature babies with a history of lung issues, it's even scarier.

RSV is one of those things that really, really made us want to go to a one-income household, since babies in daycare are so germ-generous. It's been recommended many times that we enforce a strict "lock-down" and keep Ollie away from the general population during RSV season. So we do. We missed my nephew's 5th birthday party and had a very scaled down get-together in honor of Ollie's birthday. Thanksgiving and Christmas were a source of contention with all the school-age nieces and nephews around, and with every cough I heard, I assumed it was The Plague and quickly moved to the other side of the room.

On top of all that prevention, Ollie also qualifies for Synagis, a monthly shot of anti-bodies that prevents RSV from moving in and infiltrating his lungs. It's not a vaccine, like the flu-shot, so it "dies" in his body after about 30 days or so. And, given Ollie's weight now (22 pounds, 4 ounces!) he needs two shots. Every month, during RSV season (November through March here), he gets a shot in both chunky thighs.

We have a Visiting Nurse who visits the house to administer his dose. I always feel so bad for him on these days. She comes in the morning, during his happiest time of day. Today she arrived when we were finishing up breakfast and he was happily stealing the spoon from my hand to bang it on his tray.

He had no idea.

Those Synagis shots, from what I hear, are more painful than typical shots. Not only do we get the poke twice, but the medicine stings as it's going in. And, because we do it at home, there's no chance of simultaneous pokes by two nurses, so he'll just get settled down from the first shot and then WHAM! there it is again. Setting off a new level of tears and yelling.

I sort of feel bad for his nurse, too. She spends her days making babies cry from taking on this kind of care and Ollie is immediately suspicious when he sees her. His OT doesn't pull out a stethescope and listen to his lungs, she just comes to play. He knows This Lady is Different. And his mood imediately changes.

Smart boy.

He watches as she prepares. He gets weighed and measured. She gets my signature, then sets the shots up. Ollie does that holding his breath thing at first, then really lets it go. BobCat comes rushing in to see what's wrong.

He gives her such a look of insult and disbelief. Chewing a finger, tears still on his eyelashes, Why did you do that to me, lady?

We do it to keep you healthy, Ollie.

And then it's over. We got the last dose today for the year. He may qualify again for Synagis next season, he may not. This was his second year of receiving the shots and these are crazy expensive (I've heard about $1500 per shot) so the Insurance Company has to approve him. Right now, just this year, he's had $15,000 worth of anti-bodies injected.

Right now, he's over it. After a good nap and some snuggles, he's back to his regular smiley self. All he has left as evidence are the two dot band-aids that cover the sites and lungs that will stay healthy.

Thinking like a mom

Out of milk, I ventured to the grocery store at 9:30pm on a Sunday night. I actually don't mind going to the grocery later in the evening. I can do the self-checkout without feeling rushed, poke and prod the produce as much as I like, and spend some time actually choosing what I buy, rather than plucking things off the shelves without much thought.

But, as I said, it was 9:30 on a Sunday night.

There was a little girl there, about Ollie's age. Seriously, cute as a button with blond-ish curly hair and a big smile. Wide awake, wearing green-with-pink-polka dot pants and a pink jacket.

Can you see her? She's adorable, right?

My first thought when I saw her wasn't how cute she was, or how smiley. Not even a little milestone envy at how good she was at waving.

Nope.

The very first thought in my noggin was: How is she so awake this late? Why isn't she in bed yet?

I'm thinking like a mom.

This isn't to say that that thought went through my head all high-and-mighty. I know that different kids have very different schedules. I just wondered how this little ray of sunshine had the energy to be so awake at 9:30pm, when I had to change out of my jammies since I had been ready for bed about 2 hours before.

And this is too funny not to post....kitty adventures

The perfect yawn, caught at the perfect time for the perfect picture.

...because that's how he rolls.

We had a Physical Therapist drop by for an evaluation on Ollie the other day. There's obviously some frustration out of Ollie that he just can't move the way he wants to. Snugglins just don't cut it all day, every day for a big boy of 14-going-on-15-months, you know.

So, on top of the weekly Occupational Therapy that we're already getting, we're adding a dash of Physical Therapy every other week, to help him with different goals. Those goals being the basics: crawling and walking.

She noted that, while he has all the pieces to be mobile, he just hasn't quite put the puzzle together yet. She also noted that he must be a pretty smart kid to be able to think outside the box to piece together his own little way of chasing the cats and lunging for the camera.

Because of his delays, she put him at a 4-6 monther's level of development. BUT HE'S SMART! Someone other than GRANDMA SAID SO.

6-8 months delayed is pretty behind, when he's 12 months adjusted, but we're getting there.

Just recently, it's been getting to the point where I need to make sure my laptop's power cord was tucked out of sight, and my trips to the kitchen to refill my coffee cup have become much, much shorter. Because he's never in the same place I left him anymore. He rolls to kick the end table, to get to the wipes box and to bench press his rocking chair. (He was under it the other day, looking like he was changing its oil.) I've come back into the room to find him in a pickle under the couch on more than one occasion.

I lure him out with things he likes, but doesn't usually get. The camera is a BIG incentive for him. The lens-cover dangling from it is his Kryptonite. He'll do anything to get to it. Including sequential log rolls and venturing near The Mean Kitty.

So, before we know it, I'll be posting that he's taken his first crawling "steps," and then we'll really have to baby-proof.

I like how he's kind of easing us into parenthood.

Oh, and pay no mind to whatever horrible sound I'm making at the beginning of the movie. Unless you can tell me what animal I sound most like. An Emu, maybe?

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.