"Welcome to Holland"

I first shared this essay on the blog 2 years ago, while Connor was still in the NICU.  At that point in time, we were almost to the halfway point of our stay… Connor had doubled his birthweight and was finally just over 4 pounds; he had also survived 1 emergency surgery (with 2 more to follow in the coming weeks). 

The first couple of months during our NICU experience, I found myself grieving… not because I had lost a baby, but because I had missed out on the experience I had hoped for in having a baby.  (Does that make sense?)  My pregnancy, for the first 25 weeks, had been textbook.  No complications whatsoever, mild morning sickness and discomfort, I was even under the expected weight gain to that point.  So naturally, my head was in the clouds – imagining what his “birth”day would be like… in March, not December.  I wasn’t planning on an emergency c-section at almost 27 weeks, and I certainly wasn’t planning on a roller coaster 120-day NICU stay, either.

Don’t get me wrong – I count my blessings every day that Connor is such a miracle… such a fighter… and that he is doing unbelievably and remarkably well, all things considered.  I know that we are one of the lucky ones in regards to premature birth, and I don’t take that lightly, or without immense gratitude.  We came away from our NICU experience with a wonderful new family – full of amazing doctors, nurses, therapists, support staff, and fellow NICU parents – that we would have never gotten the chance to know, had Connor’s “birth”day been normal.
   
I originally found this essay on a blog written by a fellow NICU mom (and now imaginary friend), Megan, about her miracle sons Crew and Dex.  The author of “Welcome to Holland” is Emily Perl Kingsley – a writer for Sesame Street since 1970, who penned the essay after her son, Jason, was born with Down’s Syndrome in 1974.

Since our time in the NICU, I’ve forwarded this essay to many people, those struggling with unmet expectations for how their births went, how they’ve ended up in the NICU, or how they’ve found themselves a parent of a special needs child.  I turned it into a printable, with the thought that it could be easily passed along to others in need.

To download the 8.5”x11” PDF for printing, simply click on the image above, and a new window will open to the download location in 4shared.  Save to your computer, and it’s yours!  (I recommend setting your printer to “borderless printing” if you print this yourself.)

UPDATE – I’ve also created this print in a smaller version, with 2 per page.  Download can be found here.  (Again, set your printer to “borderless printing” for best results.)

I’ll be posting this project to some of the link-up parties listed here:

Under the Table & Dreaming	Kuzak’s Closet	I Heart Naptime
Heather Lynne/Raising Memories	The DIY Show-Off	Keeping It Simple
Sew Can Do	The Girl Creative	Sumo’s Sweet Stuff
Making the World Cuter	C.R.A.F.T.	Skip to My Lou
Mad in Crafts	I’m Topsy Turvy	Sugar Bee Craft Edition
Tip Junkie	Oops! I Craft My Pants	Crazy Domestic
My Delicious Ambiguity	Today’s Creative Blog	Hope Studios
Lucky Star Lane	Someday Crafts	Blue Cricket Design
Sew Much Ado	Bargain Shopping Paradise	Night Owl Crafting
Somewhat Simple	My Backyard Eden	Creations by Kara
House of Hepworths	Fireflies and Jellybeans	Beyond the Picket Fence
Everything Etsy	Tatertots and Jello	6 Inches of Ribbon
Fingerprints on the Fridge	A Few of My Favorite Things	It’s a Hodgepodge Life
Fun to Craft	Tidy Mom	The Shabby Nest
KojoDesigns	Chic on a Shoestring Decorating	Just a Girl
Seven Thirty Three	Beat Until Fluffy	A Little Lovely

Half Baked

Recently, the book Half Baked, by Alexa Stevenson was recommended to me. 

The synopsis from Amazon reads:

“A funny memoir about struggling with infertility and giving birth to a not-quite-two-pound premature baby? Blogger Stevenson manages to pull it off. In this tragedy with a happy ending, Stevenson goes through in vitro fertilization (IVF), gets pregnant with twins, loses one of them, but delivers a surprisingly healthy daughter, Simone. The tale is full of funny moments. Stevenson’s husband, Scott, nicknames their IVF project “Science Baby.” When she is still carrying two fetuses, Stevenson jokes, “My goal was a modest one: to get 50 percent of the babies out alive.” Later, after Simone is released from the neonatal intensive care unit, Stevenson notes that the sound of crying makes her happy, not frustrated. “Baby crying? Well, that means she’s breathing!” Even though the book offers plenty of comic relief, how many parents of full-term babies will want to wade through every detail of Stevenson’s fears, drugs, and checkups? It’s the readers who are in Stevenson’s shoes who will seek out and smile at her inspiring tale of hope.”

The author, Alexa, was a blogger at Flotsam, before she was a published author.  She posts there quite frequently, and I find her style funny and refreshing. 

I could probably say I’ve got at least a mild case of PTSD (self-diagnosed) as a result of our NICU experience – the most terrifying 4 months of my life.  In time, I know I’ll get better and stop asking myself all of those pesky “what ifs?”. 

It’s a small club of which I find myself a member – the one that includes parents who at some point in time came close to losing their child, or wondering if they were going to make it to the next day.  (I don’t even attempt to truly know what it feels like to have lost a child.)  This is not a club for which anyone would volunteer.

I enjoyed this book immensely… I laughed, I cried, I commiserated.  So much of her NICU experience was uncannily similar to mine – I found myself able to relate on so many levels.  Reading her memoir was cathartic for me.  This is a book I will definitely pick up again in a few years time. 

Currently, there are 28 reader reviews posted on Amazon – all but a small few rated it 5 out of 5 stars.

For any of my fellow NICU moms, both in real life and imaginary – if you’re interested in reading this book, please let me know – I’d be happy to send it to you as a loaner.  :) 

2010 NICU Reunion

Just stylin’…  Connor in his Halloween “costume” at the reunion.  Since it was dang chilly out, and he was sporting his first black eye (another post)…  meet our PRIZE FIGHTER!  (We opted for warmth this year – last time we were more clever.)  This year’s event was held at Blackberry Farm.  Even though the temps were low, we loved being outside, enjoying the beautiful fall colors (Chicago is gorgeous this time of year).  The venue was perfect – not only could you participate in activities offered at Blackberry Farm (carousel, train ride, hayrides, etc), but the hospital also set up some fun games and crafts for the kids to enjoy.  Free samples and coupons for Pediasure didn’t hurt either.  :)  The photo in the bottom left corner cracks me up!  We’ve recently taught Connor “touch down”… and apparently he recognizes the movement as a cheer.  While watching other kids play the bean bag games (which was probably his favorite part of the whole day), we noticed that Connor would raise both arms (TOUCH DOWN!) each time a bean bag was thrown… it was the funniest thing!  He cried when we pulled him away from the action to mingle with other families.  Connor had a fun time walking around, interacting with the other kids, and just people watching.  He DID NOT enjoy the carousel ride, and refused to sit on a horse… so, that’s us (middle left photo), on a bench, going ‘round and ‘round.     Oh, how we love Dr. Ahmed!  (He’s one of our favorite neonatologists and took amazing care of Connor during his NICU-stay.)  We tried to get Connor to show off his walking skills, but he was a bit unsure of himself on the uneven ground.   Another highlight was catching up with the Nelsons.  Their daughter, Natalie, was Connor’s longest-term neighbor in the NICU.  Fifteen months ago, we got the two of them together…   …and look at them now!  Too, too cute.  :)  Watch Connor attempt to make it to first base… 

 

What a fun way to spend a fall afternoon! 

Much thanks and appreciation to the NICU staff for pulling together such a great event each year.  We so enjoyed seeing those nurses, doctors, and staff that we don’t get to see on a regular basis.  Their tireless efforts during Connor’s first 4 months helped us to get where we are today.

Baby steps.

So proud.

After Connor was born, he developed a fairly serious intraventricular hemorrhage (grades II & III on either side of his brain).  The neonatologists at the time didn’t really know what to tell us.  Only time would tell if and how badly Connor’s brain would be damaged by the bleeding.  We were told to prepare ourselves for cerebral palsy, issues with motor skills, and/or learning disabilities, at the very least.  Luckily, while Connor was still in the NICU his IVH resolved itself, and no further intervention was necessary.  This past April, his neurologist said we’re in the clear for any lingering IVH issues, and that all Connor really has to overcome right now are developmental delays due to his prematurity (born at 26w 6d gestation).  (I’m still not sure what he meant by “in the clear” – at the time it was good news, and I didn’t question it – I think it’s too soon to tell what, if any, learning disabilities Connor might have.) 

It was nearly a year ago this month, that Connor purposefully rolled over by himself for the very first time at 9 months old.  At the beginning of May, he started crawling at 16 months old.  He began pulling himself to stand at the end of May, at 17 months old.  Not unlike our other preemie friends, we work really hard to achieve each and every milestone.

At the end of physical therapy last Friday, Connor did something amazing…  it had been a busy session – he’d spent time with the exercise ball, time on the slide, on the swing, and he’d even done some gait training on the treadmill.  While his therapist was making me a quick copy, we looked down and suddenly HE WAS WALKING!  Just 4 or 5 steps, all on his own!

Unfortunately, Brian wasn’t able to attend the session with us, but we rushed home, ever hopeful that Connor would “perform” again.  Sure enough, he was able to show his new skills to Daddy.  :)

Without any encouragement from us, the little rock star showed numerous times how he can stand “with no hands” in his pool.

A few days later, with the bribe help of the phone, I attempted to catch him walking on video.  Like a carrot dangled in front of a horse, Connor will gravitate toward anything with buttons.  Please don’t mind the video quality below… I was flying solo this particular evening.  It’s really hard to capture this AND be the one he’s trying to walk to!

Daddy came home about an hour after this video was captured, and I’m happy to say that Connor repeated his great feat… and even walked the length of the family room rug – 10 feet! – before losing his balance. 

So, we practice walking and standing every day.  The only thing really holding Connor back right now is his own confidence – we know he’s more than capable (you should see how fast he can cruise!).  He’s figured out how to throw tantrums, so practice time is not the most fun time of the day.  But, as we have with everything else, we all push through it.

Obsessed with buttons, Connor’s figured out (all by himself) that with the help of some of his toys, he can turn the TV on and off.

LOVES to spend time in his pool!  

Not gonna lie… both of us have shed quite a few happy tears over his latest accomplishment.  We couldn’t be more proud of this amazing little boy!

The stats of 18 months old

Saw Connor’s pediatrician this morning…

At his last well-check (at 15-months) he was 19 lbs. 13 oz. and 27” tall.

His current stats:

Weight – 21 lbs. 2 oz.

Height – 30”

Head Circumference – 46.75 cm

So, for the growth charts, this puts him in:

GROWTH CHARTS	Adjusted Age (15 mos.)	Actual Age (18 mos.)
Weight	10th percentile	5th percentile
Height	20th percentile	slightly below 5th percentile
Head Circumference	50th percentile	25th percentile

Pediatrician’s pleased, we’re pleased…  it’s all good.

For development, according to the tests the pediatrician grades on, for social/personal, fine motor, and language, he’s testing at his chronological age of 18 months.  For gross motor he tested out at 9-12 months.  {?!?!}  Whatever.  We’re seeing a PT on a regular basis, and I think Connor is doing just fine.

We have a referral to go see a pediatric dentist about his teeth coming in.  Sadly they’re stained (we hope that’s all that’s wrong with them) from the antibiotics and vitamins he’s always been on… and might be decaying from the meds.  Yay.

Next appointment with the pediatrician?  Not until he’s 2 years old.  Yay!

My friend, Teresa, who had 26-wk preemie twin boys over 10 years ago (and a full-term boy over 2 years ago), made an interesting comment the other day.  She said that when you bring a full-term infant home, that’s it… no one’s intervening, you don’t have a dozen different opinions coming in from everyone about what’s going on.  But, when you have a preemie, no matter what level of complications they endure, you have a barrage of people constantly telling you what to do, and what you’re doing wrong.

Don’t misunderstand me… I believe that the intervention can be good for the entire  family, if it helps the baby to progress.  But, with so many different opinions… it’s such an intrusion sometimes.  (And running from appointment to appointment is beyond exhausting.)  You constantly have to measure it against your own parental instinct and intuition.  It can make you so weary!

The good news is that Connor’s pediatrician is now questioning whether or not we need ongoing follow-ups with his neurologist and ophthalmologist.  Goodness knows we could certainly handle 2 more specialists off our plate!

And on that note… we’re back to our previously scheduled posts.

18 months old

Dear Connor,

Just 18 short months ago, you surprised your father and me with your miraculous birth, and ever since, you’ve never ceased to amaze us.

Because I don’t want to forget how fun you are at this stage:

• You know how to give the best kisses and hugs – they’re so sweet (even the open-mouthed ones you offer)!  You’ve recently associated “love” with kisses – and it’s to die for. 
• I don’t want to forget how you love to giggle, and are developing quite the sense of humor right now.  Sometimes, you’ll cruise on over and just start laughing out loud, for no reason, until I chime in, too. 
• You love to be tickled, and will guffaw over the slightest touch on your back. 
• You have to try whatever we happen to be eating, and are adorably relentless until you have a morsel of it in your mouth.  Your current favorites are yogurt, kiwis, and strawberries.  You’re getting much better about drinking fluids, and just recently figured out that the sippy cup is not the enemy. 
• You absolutely love to go outside, and checking the mail is one of the highlights of your day. 
• You’re just beginning to enjoy storytime… which is good, because there are a lot of books we want to read to you.
• Baths are a special time for you and Daddy – he lets you splash and play and be silly (whereas bathtime with Mommy is all business). 
• When you go to sleep at night (and you are such a good sleeper – nearly 12 hours every night with 2 naps during the day), it’s so funny how you “require” at least 2 binkies – one for your mouth, and one for your right hand, which you tuck behind your back. 
• You love to play catch with Daddy – catch with Mommy doesn’t bring the same amount of giggles and joy to your face. 
• You’re cutting at least 3 teeth at once right now, and one’s your first molar – which explains a lot about the mini tantrums and fussiness you’ve been having lately… I’ll have to remember to cut you some slack. 
• When you’re around other kids, we love how talkative you become – you definitely want your voice to be heard.  You understand so much right now, but for some reason still insist on calling Daddy “Yayaya”.  You’ve also started “singing” lately, and new syllables come out of your mouth every day. 
• You’ve mastered quite a few animal sounds, know how to locate several body parts, understand which room is where in the house and which toy is which, and we’re so impressed!
• You get excited at the prospect of going shopping (probably because we still don’t take you out very much), and are such a good boy to sit so patiently in your stroller until we’re through. 
• You have a keen eye and adoration for anything electronic… anything with buttons to push.  One of your favorite toys is the spare, battery-free TV remote, because it looks just like the one that operates the TV.  You already understand that seeing the DVR menu means that your show will come on and you shriek in excitement until it plays.  You absolutely adore “Yo Gabba Gabba”… DJ Lance is your favorite… you’d be happiest if I let you watch it all day long.  When Daddy’s working from home, you love to pop into the office to say hi… but we can’t leave until you’ve had a chance to play with the mouse. 
• Now that you’re mobile, you’ve figured out that you can run from the camera.  So, for the next while, many of the pictures I’ll be able to get you to hold still for will happen while you’re strapped in your high chair. 
• And how you love being mobile!  We have to make sure you’re all gated in, or not take our eyes off of you for a second, because you’re much too quick these days… and you’re not even walking yet!

There’s so much more I want to remember, I’ll have to start keeping a list.  If you would just slow down… for a few minutes…  ;)

Connor, you’re a wonder and an absolute joy!  We’re so grateful that you are our son!!

Love, Mommy & Daddy

------------------------------------------------------------------------------

June 11, 2010

Always on the move! – June 16, 2010

What… doesn’t your kid kiss the TV remote, too?? – June 16, 2010

Spike. – June 10, 2010

Scenes from the High Chair – June 16, 2010

Taking a break from his new friend, the sippy cup. – June 16, 2010

The face he gives the camera about 85% of the time now. – June 11, 2010

Big, 18-month-old BOY! – June 16, 2010

Hidden treasure!

For over a year, this photo was Connor’s first picture.  Taken just 2 hours after he was born, it was the only one I knew of taken on December 16, 2008.

A couple of weeks ago, I  was messing around on Brian’s phone and stumbled across quite a find…  He had 4 more pictures of Connor, also taken when he was 2 hours old, that I had never seen before!

Looking at these photos of our tiny 2 lb., 6 oz. miracle son for the first time stirred up all kinds of emotions for me…

Sad that he has had to go through so much because he arrived too early - a lengthy NICU stay, copious appointments, and ongoing therapies.  Some days, it's just not fair that he's had so many hurdles to overcome.

Hurt that I couldn’t spend time with him those first few days of his life…  I saw him briefly in the OR and they speedily wheeled me past his isolette in the NICU on my way to recovery the night he was born.  But, due to a raging fever and the doctors’ concerns that I might be contagious, I didn’t get to see him again until he was 4 days old.  I wasn’t able to hold him until he was 5 days old.  Over a year later, it bothers me that I’m still pretty raw about it, and I hope one day it’ll be just a distant memory.

But, most of all, I’m…

Relieved and proud that Connor is such a fighter and is doing so well at nearly 16 months, all things considered.

Blessed to be Connor’s mommy!

Happy that he brings so much sunshine into our lives everyday… he’s one funny little boy!

Grateful that we all survived the entire ordeal, and for all the strength and support we receive(d) from our Heavenly Father, and loving family and friends.

Indebted to the staff, nurses, doctors, and therapists at RCMC for the expert treatment, knowledge, and loving care they gave to our son.

Joyous that Connor is a part of our family forever!

Connor finally joined us at home on April 14, 2009, after 120 days in the NICU.  We plan on marking this important day with a little family party each year… our first one is next week!

Grandma Rogers will be here in a few days, and Connor’s really considering crawling for the very first time while she’s here!  We saw his physical therapist this week and she’s bound and determined to make it happen in the next couple of weeks.  Which means more appointments for us, but it will all be worth it to get him developmentally caught up.  He’s soooo close!
 

Lucky

Though we didn’t really feel lucky at the time
(and unknowingly had another 27 long days left in the NICU)...

One year later, we most certainly do!!

Happy St. Patrick’s Day!

1 year old

We made it... Connor is officially a one-year-old!

While the first 4 months of his life in the NICU painfully dragged, the past 8 that he's been home with us have truly flown by.  Each day has brought new surprises, new discoveries, and new ways for our hearts to grow.

First things first, he.won't.stop.growing!

LATEST STATS

Weight - 19 pounds

Length - 27.5 inches

Head Circ - 46 centimeters

GROWTH CHARTS

Adjusted, he is about 9 months old, which puts Connor in the:

Weight - 50th percentile

Length - 50th percentile

Head Circ - 70th percentile

Unadjusted, on the growth charts for a 12 month old, Connor is in the:

Weight - 5th percentile

Length - 5th percentile

Head Circ - 37th percentile

Since birth, he has grown exactly 8 times heavier and is exactly 2 times as long! 

A.M.A.Z.I.N.G. 

Medically, it's been another relatively quiet month for Connor.

He had a routine eye exam in November - everything checked out perfectly!  No need for glasses at this point, and his ROP issue is still under control.  He'll continue to be checked every 6 months regarding his ROP, but that's to be expected.

Yes, he's still wearing the helmet... though obviously, not as much as he should be, as evidenced by all of the photos below.  :(  (I'm a bad momma.) 
He's supposed to have it on 23 hours per day, and I would guess that we average about 19-20 hours per day.
During one of his helmet adjustment appointments at about the halfway point of his treatment, their prognosis was still a total of 3 months in the 1st band.  (Yes, they're still talking about a 2nd band, which may not be for us.)  This means we shouldn't plan on it being over until the end of January. 
Connor has handled the helmet well, but to be honest, I have not.  He's harder to snuggle with it on, and I'm tired of getting clobbered in the face with it.  I hate the way it makes his head smell, no matter what we try to combat the stench.
He doesn't get out much nowadays, but in general, people respond pretty well to it.  During our recent trip to Arizona, everybody knew his name (obviously), and one flight attendant and TSA agent even stopped to ask thoughtful questions about why he was wearing it.  As his mother, the rude stares and even ruder double takes still bother me, but from now on, rather than letting it get the better of me, I think I'll just say to them, "He's CUTE, isn't he??"  
BUT, we have seen great progress in the overall shape of his head.
Just ask me when it's all over if I thought it was worth it.  ;)

Somebody adorable passed him a little virus, so after suffering just a runny nose in Arizona, he came home and developed bronchiolitis.  (He tested negative for RSV.)  Our pediatrician prescribed albuterol and a nebulizer, and we're down from 3 breathing treatments a day to just 1 now.  The whole time, while he's sounded horrible, he's never run a fever or lost his appetite, and has been a happy little camper.

We're also happy to report that he's finally outgrown his gastric reflux and we're officially off of Reglan!  Yippee YAY!  This means he's only on 2 meds now - an antibiotic and vitamins.  Easy.peasy.  :)

All kinds of firsts this past month...

While we were in Arizona, Connor began clapping, and will clap on cue if we say, "Yay, Connor!"  He also began feeding himself, using his thumb and index finger to pick up finger foods (pencil grip), and holding his bottle.  He began babbling with the letter B - boo's and ba's.  And once, he even shuffled his feet forward to walk, with Mommy holding his hands!

Just over Christmas, Connor finally mastered the wave!  He seems to prefer the flailing arm and hand variety, not quite "elbow, elbow, wrist, wrist".  Sometimes he'll open and close his hand, too.  

Lately he's been making lots of new sounds... he's got a full range of motor boat and engine purrs, and he loves to blow messy raspberries, much to our chagrin.  Each day is full of giggles, screeches, and singing (and that's just Connor).

Just in the past 2 weeks, Connor's increased to 3 solid meals per day, with 4 bottles of formula.  That's a lot of time spent eating!  He loves his puffs, cheerios, yogurt melts, and dried fruit - he can't get enough of snacks.  He also began eating gourmet Gerber MEAT meals this past week... so far, so good!  We're also really looking forward to starting whole milk at 15 months.

Developmentally, his pediatrician says he's right on track with his adjusted age of 9 months.  We'll take it!  YAY, Connor!

And now, his monthly photo album:

Not.quite.yet!  But, we're practicing!! - December 16, 2009

December 21, 2009

Super Sitter! - November 24, 2009

Letting it all hang out... - November 25, 2009

Shoes?!? What the...?!?! - December 1, 2009

Balance gets better every day - November 27, 2009

Teeth! - December 21, 2009

December 5, 2009

I just love watching him think! - December 16, 2009

Smug. - December 8, 2009

Nap with Daddy - November 27, 2009

December 9, 2009

December 16, 2009

Loves to play "catch" - November 24, 2009

Loves to blow raspberries... just imagine meal time.  :( - December 8, 2009

"Yay, Connor!"  Can't.stop.clapping! - December 16, 2009

You can see his first year in pictures here.

His monthly monkey mug shots can be seen here.

Just FYI, this marks the end of my monthly memes,

giving "scheduled" monster-sized updates on Connor's progress.

Not to worry, I'll still post all the news that's fit to print,

along with copious pictures for the grandparents.

(Sprik Space might be morphing from an all-about-Connor blog, 

to a little more of everything blog, as ever-elusive spare time permits, of course.)

November 26, 2009

Now that Connor is a year old,

both Brian and I are ready

to put this tumultuous year behind us -

we are so grateful for getting through it,

and excited for our future together as a family!

Father and son - November 24, 2009

We'll never know or understand why

Connor joined our family so early

and had to have such a rough go of things.

But, we do know

that we're so much stronger than we ever knew possible,

and that we have a loving Heavenly Father

who was there for us each step of the way.

This time last year, Brian and I can honestly say

we didn't know if we'd have Connor with us now.

We thank Him every day for the joy 

that this little boy has brought to our lives. 

Birthday Boy - December 16, 2009

We would also be remiss not to thank

all of you, our family and friends,

for caring about us, sending well wishes,

and praying for us and our little MIRACLE over this past year!

Your support helped to carry us when times were rough.

From the bottom of our hearts, THANK YOU!