On This Day...

On this day, 5 years ago... I was 6 months pregnant. It wasn't an easy pregnancy. I spent months 2-6 alternating between cursing this child for being such a (literal) pain and crying myself to sleep for fear of losing him.

On this day, 5 years ago... I laid in antepartum. My water had already broken. I was 28 weeks pregnant. I was bargaining. I'd do anything, if only... "Please," I begged, "Let him be safe..."

On this day, 5 years ago... my BFF stood by my bedside on what was simultaneously one of the worst and best days of my life. She was there for the contractions, the scare, the emergency c-section, everything. I will go to my grave grateful for those moments.

On this day, 5 years ago... I called my mom at 6 am to tell her my water had broken. And even though she was a state away and supposed to go to work, she found a replacement and got in the car and drove a 3-hour trip in a little more than 2 hours to be there.

On this day, 5 years ago... Handy Man barely made it in time for his son's birth when the antepartum nurse failed to mention the severity and timeliness of the situation, leading Handy Man to believe he had time to run through a drive-through. Handy Man balanced the world on his shoulders in those days, and I still wonder how he held himself and all of us together.

On this day, 5 years ago... a baby boy was born. Silent. A neonatal team whisked him away and immediately worked their magic.

On this day, 5 years ago... a man we call "Dr. John" fortuitously was the attending in the NICU. He made some calls that day that still matter... to this day. We will never forget him or what he did on that day (and on the many to come) that changed the life of a child and his family.

On this day, 5 years ago... I learned tough new words. I entered the life-changing war zone called the NICU. No one who goes through those doors comes out the same person. If baby is there for a week or a year, it is a tough place to live... even for a day.

On this day, 5 years ago... our son survived his premature birth. We wouldn't fully understand what that meant, or how critical those first hours were until much later. Starting on that day we learned to appreciate grams, breaths, ounces and minutes.

On this day, 5 years ago... I made a resolution to never forget NICU families and how much that baby boy overcame to be who he is today. Trouble ultimately spent 3 months in the NICU - coming home on his due date, weighing 5 lb and 1 oz.

*

On this day, 4 years ago... we celebrated a first birthday. Our infant son weighed about 12 lb, and had recently learned to sit on his own. He was on oxygen, high calorie formula, and rarely left the house. He was meeting miletones, although delayed, and was a beautiful, happy, baby boy.

On this day, 3 years ago... our boy turned 2. At 18 lb, he was crawling, but not yet walking. He had a handful of words. He would finally walk a few months later, and put words together to communicate. He was still on oxygen, still rarely left the house. He was bold, happy, and charmed the world with his dimple and lashes. He became drug free this year - a huge milestone.

On this day, 2 years ago... our sweet, now bespectacled toddler turned 3. He was about 20 lb, still on oxygen - and would be until Independence day. That year freedom really rang for Trouble when he was finally able to take off his oxygen cannula. He was 38 months old.

On this day, 1 year ago... 4-year-old Trouble blew out the candles on his birthday cake for the very first time. He was surrounded by those who mean the most to him - his cheerleaders, family and friends - who got to witness a milestone that so many take for granted. Untethered by tubes, he ran around the playground with his friends, ate cake with his Nanie, and had the best birthday party a kid could have.

On this very day... our Trouble turns 5. He is an absolute miracle of a child. He weighs in at a whopping 26 lb, and although he may look like a toddler to those who don't know him, he is strong and scrappy. He has overcome more in 5 years than many will in a lifetime. He loves life! And we know that because of people like Dr. John and nurse Diane, his cheerleaders, friends, family and loved ones - that this is only the beginning of a very happy ending.

On the warming bed, in the NICU, 1 week old.


1st time Daddy holds him 2 1/2 weeks; Blanket made of washcloths. Nitric oxide.


NICU Homecoming - 3 mo old - with a 12" ruler.


Age 2


Age 3


Age 4


Age 4

HAPPY 5th BIRTHDAY, TROUBLE!

Trouble's PreK Learning Tools

Blogger's photo uploader crashed over the weekend, so I've not been able to get this post up. I've been hesitating to blog too much, but I know there are other parents out there that struggle with what to do and how to teach their children who don't follow a normal learning curve.

Over and over medical professionals tell me what a miracle it is that Trouble walks, talks, and breathes. Recently, Trouble was examined by an older doctor - someone who has been in this business a long, long time. He told me, "When I read his medical records, saw this boy's history... well, this is not the boy I expected to see. He is a medical miracle."

And while it takes my breath away each and every day the boy who he is, I am still the one (along with the loving support of Handy Man) who has to help guide and teach him to become the man he is meant to be.

This task feels gargantuan.

I have been pouring myself into forgetting everything I once knew about early education, and trying to relearn from the perspective of a special little boy who needs *more*. Most kids pick up things like letters, numbers, and skills necessary for life from everyday life. This boy has proven over and over that he is not just any little boy. ;)

I have researched Montessori, independent learning centers, tactile learning, and incorporating advice from his occupational therapist. This is what we've come up with so far:

Abadaba Alphabet, book and CD

School Zone, Same or Different?

Kumon's First Book of Tracing

Kumon's Amazing Amazes

Kumon My 1st Cutting Book

Textured Tactile Letters and Numbers


Touch Boards

Zip Snap Button Buckle Lace Tie Manipulatives

Jumbo 15" letters for decorating

Handwriting Without Tears PreK and K materials





Lauri foam lacing, puzzle, tactile Primer Pack and Math Discovery Kit


My Little ABC Coloring Book

Bead and Rod Sequencing, Pattern Kit

Shape Sorting Clock

Window Clings to practice letters

Glue dots - fine motor

ETC Get Ready for the Code

ETC Get Set for the Code

ETC Go For the Code

Besides the regular preK skills, we will be focusing on life skills: dressing independently, brushing his teeth (without the tears), bring able to think through the steps of getting ready to leave the house, getting ready for bed, etc.

I will be adding Montessori resources, and hopefully incorporate the life skills from June Oberlander's Slow and Steady, Get me Ready.

It's a big task, it'll be a big year, but I think both he and I are ready.

Braving the Interstates in Iowa

About 3 hours into our normally only 2.5 hour drive, moving at about 15 mph on a major interstate, we had one of those scary driving moments. The roads were terrible; a layer of mushy, sloppy snow covered ice and frozen sleet. The semi ahead of us was spinning and no longer able to make it up the hill. That's when it started sliding back down toward our van.

Handy Man put our achy, old minivan into first and willed the van to move out of the way. The tires spun, the engine revved and the semi was sliding backward down the right lane of the interstate toward us. The left lane was moving, and Handy Man tried to get the van to catch a patch of snow and pull out of the way. We sat for what felt like an eternity in slow-motion spinning our tires uselessly on a patch of ice.

Just when I thought we'd be pushed back down the interstate by a 10-ton truck, the tires (recently replaced - thank you, Handy Man!) caught the snow and we pulled out of the way as the semi slid to where we were just moments before. I could tell Handy Man was near panic; it's one thing to have a semi heading right toward you, but when it's heading right for your entire precious cargo, 3 of which are young boys, it's an almost unbearable amount of pressure. He stayed remarkably calm, considering the potential danger we were in.

It's amazing what northern drivers put themselves through each year. I have had more than enough of this weather. If it wasn't absolutely necessary to travel in the snow I would avoid it entirely. Thursday night however, was tricky. The weather wasn't nearly as dangerous near us, and we had to get Trouble to appointments on Friday at a Children's Hospital 150 miles from home.

I'm happy to report that we made it safely. It took us 4 hours to drive the last 120 miles of the trip. The boys were disappointed that the Ronald McDonald House was full and unable to accommodate us. We were able to stay at a hotel near the hospital that had a 100-foot waterslide. It was so much fun after a long day of grueling appointments to spend the next morning playing in the pool and sliding down the waterslide.

As for the appointments themselves, like any time one needs to spend an entire day at a children's hospital, it's never what a parent wants a child to endure. Trouble was a trooper for 8 solid hours of evaluations. It's more than any 4-year old should have to tolerate. He was so well-behaved and tolerant. Handy Man and I were so proud of him.

Another QnA at LWM3B

Here are some of the questions from my comments and inbox lately that inquiring LWM3B minds want to know.

Q: You have awesome music, Darcy. Where can I get myself some tunes?

A: Well, first will someone please go tell Kysha that my music is awesome? Even when my 4 year old helps? Okay, next I say exercise caution when deciding if you want music. A lot of people find this feature extremely annoying. Bloggers who like to have a lot of windows open at the same time (uh, me) have crazy things that happen when our own blogs are open... then we go visit our friends. Want an example? Open my blog and the Nester's blog at the same time. Another example? Abba is blaring when I'm trying to hear my future daughter-in-law sing itsy bitsy spider. It's madness, I tell ya.

If you still want music after all that... here's how you do it. Scroll down my blog... waaay down. See the very bottom footer? There is a little music widget down there. Click it. It should take you to the site where you can make your own. That easy. It's free. I love free. And Kysha... you can also skip to ABBA if you want.


Q: Did you ever find more PB Loco?

A: Yes! But not at the SuperTarget. I made the 1/2 hr trek to the closest one only to find all they had was Sun Dried Tomato and some Jungle Banana flavor. Blech. Luckily for the boybarians, their Nanie loves them very, very much. She sent us a case of PB loco and I wish I could have recorded Einsteins whoops of joy and the way Picasso danced around the kitchen. We currently have 3 open jars and Einstein has eaten a variation of PB Loco for every meal since then. Okay, I have had my share of it too. Thanks, Nanie.


Q: Did your elliptical machine ever arrive?

A: No. After two days of "unreachable conditions" the freight company tried to ship it back... to the pacific northwest! Can you even believe it? Today, Handy Man called me and told me he drove to a town about 45 minutes from here to pick it up from the freight company. My Lenten Promise starts tomorrow; the elliptical will be here late tonight!

(Update: As of 10 pm Friday nite - it's here! Handy Man is assembling it right now! Dainty, I am already cursing your name for this.)


Q: Are all those cute girls your college roommates?

A: Nope, but they are just as fun as a whole gang of college girls! I met those amazing mommies through the March of Dimes. They are all mommies of miracles, both survivors and angels. We come from all over the US and try to get together a few times a year. Not only are these women some of the strongest women I know, but they dedicate oodles of hours to volunteering. They are very selfless when it comes to making sure other families find the NICU a less terrifying place than it was for us. It is very empowering to have a set of girlfriends who truly understand the ache, fear, isolation, grief, hope, triumph, and joy that starts (and sadly, sometimes ends) in the NICU. There are others, too... that couldn't come that time, but that I've talked about in my blog before. You can meet most of them over there on my blogroll. 'Cept for Dainty and ksc. They're slackers like that. But McTriplet Mommy, Miracle Monster Mom, Phamily Matriarch (Chuc' Mung ` Nam Moi'!) and Little Wonders (Happy birthday to the Wonder Triplets!) are all clickable. So is QuadMom... she's coming for a girls' weekend tomorrow! In case you were wondering... thats 2 sets of triplets, 1 set of quads and a partridge in a pear tree.

Q: How did you make that adorable picture of your boys over there -------> on your side bar?

A: Photoshop. By making all three photos the same width, in the case of my blog about 175 pixels wide, I was able to stack all the pictures into a single image. Then using the text feature, I just wrote their names and ages on each one so you could see the boybaric creatures I blog about all time. I'm thinking of adding Handy Man over there, too. Wouldn't that be *handy*???

Q: So... is Handy Man really a "handy man"?

A: Hahehehaeahhooohoohheahehaha! Hooohee, that's funny! While he is handy, it's just a fun moniker. Handy Man is actually a residential designer. That means he designs houses, like an architect - only his degree is in Urban Design instead of architecture. This is also why there is usually a plethora of blue prints in the background of my photos.


Q: You said in a blog that you're a "work at home mom". What do you do?

A: I am a web moderator for a NICU Family Support site. I work part-time from home. The site provides parent-to-parent support for families who have a baby born too soon, a baby born with birth defects, for families who have experienced pregnancy or infant loss. It is an excellent and sound medical resource as well as a place of hope and comfort for so many parents who are at their most fragile. I am proud to be part of the team that makes sure there is a soft place for NICU parents to land.

Q: How are you ever going to recover from this?

A: I never will. But maybe this pic of me and Handy Man will redeem myself a little bit. I no longer have a mullet and I wear more sensible clothes now. I'll try to find the one of me at 14 in a HUGE men's XL shirt of Bart Simpson that says, "Don't Have a Cow Man." (Nanie do you have that one somewhere?)

Doesn't Handy Man look like a little boy??? Awww, he's so cute.

That's it for this installment of QnA from YOU. Thanks for playing along.

Wordless Wednesday at LWM3B

edit, for clarity: These are from November's hospitalization. We are still home! Thanks for your well-wishes though. Trouble appears to be on the mend.

They're baaaaacccckk!

I had my suspicions. Handy Man had his. Trouble starting throwing up again on Sunday. Again Monday. More on Tuesday. Also on Tuesday came the fun addition of poopy puddles. Worse on Wednesday. By Thursday it was undeniable.

Does this all sound familiar?

The bugs that landed Trouble in the hospital in November have managed to fight back over the flagyl. He is sick again. What gave it away?

The smell. Aren't you *so* very glad to be reading this blog right now?! Giardia has a very distinct, unmistakable odor.

And Trouble definitely smells like Giardia. He is back on a 5-day course of flagyl, and then another recheck next week. Hopefully we'll be able to handle it here at home this time. The hospitals are filled with cases of flu and RSV and I really don't want to end up back there again.

This poor kid. He's such a trooper. Thankfully, our friends, the McTriplets, got Trouble this adorable Cars bed for his 4th birthday that makes sleeping in Mommy's bathroom so much more tolerable. Thanks again, McTriplets!

The Fantastic Five

What a fun contest! It was fun to see all the weights and to try and guess how some of you reached the number you did. What a fun bunch you are!

Sooo... what did these 5 amazing children weigh at birth?



They weighed exactly 8 pounds 0 oz. - an even 8 pounds. Go ahead. Gasp.

My first born son weighed 8 lb 7 oz by himself - nearly 1/2 a pound more than all these 5 warriors together. So seeing those numbers should really make you FEEL something.

We live in America. Some of us live in Canada. I have a few regular readers from Italy and Australia. But the point is - we live in a time and in nations where birth weights like that should not be acceptable. 5 children should not be born weighing less than many singletons.

So... to continue the awareness. WHO is more at risk to have a preterm baby?

*if you were born prematurely yourself, you are 3x more likely to have a preemie.

*if you have given birth early before. One estimate says if you delivered early on 2 births, the guesstimate for your 3rd birth would be up near 100% chance of premature delivery.

*if your sister gave birth early, or you see a familial correlation with the women on your mom's side of the family. Studies are emerging that suggest there may be something in your genes that increase your risk.

*if you are African American, Caribbean or Black American, it is estimated that 1 in 6 black women give birth too soon. This discrepancy is not okay! In some parts of the country, 17% of Black Americans are having babies preterm. Studies are being done to find out if this is genetics or environmental.

*stress. if you have high stress levels (financial stress, hunger, long work hours, relationship stress, abusive relationships, etc) your chances go up.

*your age. Teen pregnancies and advanced maternal age (pregnancy over 36) are more likely to deliver early.

*if you are carrying twins or more, especially high-order multiples, very few triplets and up reach term.

* if you used reproductive assistance, or fertility help, your risk for delivering early is higher.

*if you are irresponsible with your pregnancy. Smoking, drinking, drug use, no prenatal care. This should be obvious, but in some parts of the country (Kentucky, for example) 1 in 4 pregnant women continue to smoke.

*unknown infection. There is a correlation between periodontal disease (see your dentist before you get pregnant!) and preterm birth. Also some bacterial infections can start spontaneous labor.

But the fact remains that in 1/2 of all preterm births, the mothers had NONE of those risk factors. Many people assume preemie moms are teens, moms of high-order multiples who took fertility drugs, smokers, living in poverty, etc. And while those are all factors, most women don't fit that profile.


So what were my risk factors? Why was Trouble born so soon?

I get asked this all the time. From the above list, my only risk factor is family relationships. My first cousin had a 26 weeker. My grandmother had a daughter "somewhere around her 7th month" who lived for a short while. Her cousin also lost a baby born early. It is possible that something on my X chromosome (from my mother's side) is messing with the gestational clock. It could be coincidence. My water broke. I was not in labor. I had no contractions. Babies cannot survive without amniotic fluid. And while the bag of water can sometimes repair itself and replenish when there is a leak, Trouble and I weren't so lucky. 52 hours after my water broke, Trouble was born via emergency c-section because my placenta started to abrupt. The only noise in the room was the hustle and bustle of the OB team, the neonate team and the anesthesia team. Trouble was born silent. He was too little to cry.

Those 5 children have beat some incredible odds. It's too late to turn back the clock on their births. So, as their parents, we can only work to try and prevent this from happening to another family.

To the parents of those fantastic five, who I am lucky enough to call friends - you are amazing souls. Thank you for letting me share your beautiful kids with the blogosphere. I am so proud of all those kids, and each of them makes my heart pitter-patter with great pride.

Congrats to Tammy at Evergreen Eclectic Academy. You nailed it with the guess of 8 pounds even. Shoot me an email to claim your bag.

Today is Prematurity Awareness Day

Tuesday, November 13 is National Prematurity Awareness Day. Buildings will be lit in pink & blue for babies, communities will hold Roll Calls and Light Stars. And here at LWM3B, it means CONTEST!

Look at these gorgeous children. So I am biased because that little one on the right is my little Trouble, but I adore these 5 amazing kids. Their stories are all different but they share one thing: premature birth.




Your task is to guess their combined birth weight. Simple enough, right?

Rules:
Closest wins.
Only one entry per IP.
All entries in by Wednesday November 14th at 11:59 pm.
In case of tie, time prevails - so pick an original weight. ;)
Family of the above pictured cuties don't count. They already know.
Winner will be announced Thursday.

Prize is a "brown bag" prize. What that means is that Trouble has helped Handy Man put together 3 prize bags. The contents of the bag(s) and the bags themselves vary between $20 and $80. Winner will choose Bag #1, Bag #2 or Bag #3.

Bags are themed: Metro Mama. Family Fun Night. Smart Cookie.

Enter now! And tell a friend, but enter first - you've got this one in the bag!

H-O-M-E! Home! Home! Home!

"There's no place like home.... there's no place like home!" Dorothy in Wizard of Oz.

"... may be surrounded by, all these people I, still feel all alone, I want to go home." Michael Bublé, Home.

" Homeward bound.... wish I was... home - where my love life's waiting silently for me." Simon & Garfunkel, Homeward Bound.


Years of music and movies carry this theme and today I feel it with them. Trouble slept through the night for the first time in exactly 3 weeks. He woke up this morning and said, beaming, "I sleeped all night in mine own bed in mine own room." He looked content. Never has my own bed felt so wonderful and cozy.

The IV was pulled and home we came last night. So far so good. Trouble's med schedule is at 7 am, 3 pm, 11 pm - so the hours aren't the best but he only has a few more doses. No more throwing up, no more yucky diapers. In fact, starting tomorrow, he'll be back in big boy pants. :)

Hopefully this is the end of that chapter. Here are some pics of his journey. Thank you again for the love and support. It is in those moments, when you rally around him, that my heart swells. Thank you.

Hanging at Status Quo

This has been such a tough bug to kill. Trouble is still in the hospital. Today is day 6 in the hospital and day 20 since his symptoms started. Poor guy feels like he's been sick forever.

Yesterday they pulled his IV around 3 pm, but his nurse woke me at 6:30 *am* (clearly she and I haven't met ;)!!) to tell me that Trouble had no urine output in 14 hours, and they needed to restart his drip. Because he has chronic lung disease from his premature birth, adding fluids always needs to be monitored closely so his lungs don't get over-saturated. This makes his oxygen saturation level drop, so he's watched by pulse-ox. As I write this he is sitting at 95% and munching on some pancakes. His belly is still big, but not nearly as distended as he has been. Gone are those freaky looking bowel loops, so even though he's back on IV, it's still progress.

He accidentally pulled his own NG tube this morning, which completely freaked him out. Hopefully, they won't need to reinsert that; it's so traumatizing to be tied down and have a tube forced down your nose and throat. He will be very upset if that needs back in. I'm hopeful that we've rounded that corner.

We were hoping to go home today, but that was when he hadn't thrown up in 24 hours and he had normal urine output. He threw up again since then, and still hasnt peed. *sigh*

Handy Man is coming to hang out with Trouble for awhile today; I'm getting restless looking at the same 4 walls since Monday. I feel like an impatient Mom wanting to leave when Trouble can't, but it's so hard not to get restless. I miss my big boys so much, I've already read 2 books, and the shower here creeps me out.

Hopefully my next update will be from home. :)

The Diagnosis

... Of all the things I would have guessed, it wouldn't have been this. Rotovirus, maybe, gastroenteritis, bacterial or viral, quite likely. But an intestine full of PARASITES?! Never!

Trouble has Giardia. And much to my disgust, this is one of those nasty microbials spread fecal-orally. *gag* This means Trouble ingested either water or food containing feces laced with parasites. Possibility two, is that he touched a moist surface and put his hands in his mouth. Either way, as a mom, it leaves me reeling with an unshakable feeling of revolt and disgust for these nasty, opportunistic creatures residing in my little guy's gut - wreaking havoc on his entire GI tract.

He's on a 5-day course of a flagyl to kill these nasty parasites and let his belly go back to normal. For now, he's bloated but much more comfortable. I'll post some pics when I get a chance. For now, I have only my phone to do these updates - no computer or laptop.

I send warm thanks of gratitude and appreciation for holding Trouble in your thoughts and prayers. The outpour of love and support touched me. I've read all the messages to Trouble who smiles warmly with each token of love. Thank you.

November at LWM3B

I have a big month planned here at LWM3B! I'm excited about new bloggeriffic things: more to come on Trouble's amazing start, a chance to meet 5 incredible ambassadors for a cause near and dear to me, I'm working on another surprise, and hopefully a few Weekly Reports thrown in there, too. Stay tuned!

But first - an update on Trouble. Trouble is still sick. It's been 2 weeks. We spent about 5 hours at the children's hospital yesterday trying to find out why. His symptoms have ebbed and flowed over the last 2 weeks, but he hasn't shaken them. Incidentally - this is something that ties back to his premature birth; his organs and immune system just aren't up to par with his peers. When other kids get the sniffles, Trouble gets pneumonia. When other kids get a 'tummy bug', Trouble loses 2 lb and can't shake it for weeks.

"Mrs. Handy Man, are you comfortable with the care you're receiving about Trouble's growth and size? Have you been instructed on how to modify his intake to increase calories?" asks the attending.

Those of you who know me well are rolling your eyes or laughing. But with each new doctor (and this ER doc was a new face to us) comes the same shock and surprise that a 4 and 1/2 year old weighs 23 pounds.

"Mrs. Handy Man, your son is extremely underweight for a boy his age. It is quite alarming how far his measurements deviate from the growth curve. His weight is surpassed by most children on their first birthdays and certainly by their second. Are you working with someone to correct this?"

Correct this! If it were only a case of a few adjustments here and there. Maybe a milkshake or so. If only...

Anyway, his labs were okay so we're waiting on stool and urine samples so we can take them back. Since nothing is going through him right now, nothing is coming out either. If he continues not to urinate, we'll go back tomorrow for IV drip. Since his poor little hands are already scarred from pokes, and his arm is bruised from yesterday's blood work, I'd like to avoid an IV. If you're the praying type, please send some up for Trouble. It's been a rough day for him.

---

Onward and upward!

A couple months ago the March of Dimes announced a contest for regular families to make a video PSA (public service announcement). The winner not only gets the fantastic $5000 cash prize, but the video will be used as a TV commercial.

Now we get to decide the winner! There are 3 finalists, all with beautiful stories. Vote and help decide who gets the prize, and which PSA you feel tells the message best. Vote here!

Then you can tell your child's story; after all Every Baby Has a Story. Come make a beautiful scrapblog (it's like blogging meets digital scrapbooking - and it's FREE!). Your child will get his own URL and you can make a beautiful page to share the miracle that is YOUR baby. You can send it to grandma, your Aunt Donna and the hot guy from 7th grade to show off your beautiful family.

Check out some examples here and here, and go make your own here.

I'm working on our Weekly Report and hope to have it up soon. If you make a scrapblog, I'd love to see it! Come back and share the link. :)

Premature Birth Matters to Me.

Trouble in the NICU

November is Prematurity Awareness Month.

All the causes seem to have a month these days, and especially come spring, it seems every cause pulls at you to support what they believe in. And most of these causes are great ones.

This is why this one matters to me. If you haven't, please read Why I Missed My Own Son's Baptism. It's a brief essay on Trouble, with photos of his birth.

Prematurity Awareness matters to me because for once - no one is asking you for money. The point of the events this month are only to raise your awareness. No strings, no 1-2 punch for the wallet.

So, what should you know about premature birth?

1 in 8 babies is born too soon in America. That means you or someone you know was born too soon.

Prematurity is the leading cause of newborn death. More than SIDS.

A baby born in Cuba, Cyprus or Slovenia is more likely to survive than a baby born here in the US - despite huge economic disparities.

It's costing YOU money. The average medical care for a preemie is 10 times greater than a full-term baby. Trouble's first year was over $250,000. 11% of insured babies are born prematurely. That means your health insurance costs go up as the rate of premature birth goes up.

These babies take months, and often years, to catch up to their peers. Some never can. Babies born too soon face developmental issues, cerebral palsy, blindness, deafness, respiratory issues, learning disabilities. And your child may be healthy - but these children will be in your child's classroom. 1 in 8, remember?

Premature birth isn't just "something that happens to someone else". It isn't a distant, far away problem. It's effecting over 1/2 million families each year. And these mothers - they aren't drug pushers or alcoholics. These are regular families who get prenatal care, who do everything right - families like mine. But it doesn't have to be that way. Change is possible. But first, you need to be aware.

And now you are.

Thanks.

---

YOU can help spread awareness! Post the PAM button on your blog for the month of November. You can tell your readers to head over here and read about Trouble. Or send them to Share Your Story - where more than 21,000 members have come together to support NICU families.



For the button: Add html, copy and paste in your side bar, change all the ( and ) to < and >.

(center>(a href="http://www.marchofdimes.com/prematurity/">(img src="http://i237.photobucket.com/albums/ff293/my3boybarians/NovPAM.jpg"/)

Vrroooom Vrrrooooom!

Before heading off to Kansas City, I was told that the Bikers for Babies event there is huge. I was expecting a lot of bikes and a lot of black leather.

I was not disappointed.

This year more than *8,500* bikers showed up - most decked in black leather, bandannas, chaps and boots - to show their support for America's most fragile and most innocent little ones. Seeing 8500 cars parked in a single place is impressive, but seeing 8500 revving, loud motorcycles is something else entirely. It was impressive.



Most impressive - these biker dudes and this event raised not 1/2 million, but over $600,000 for the March of Dimes and their fight to save babies! That is an impressive amount of money for a single day in this fantastic Midwest city. I also got an opportunity to meet one heck'uva mover'n'shaker, Ed Hale. Ed and his posse of bikers raised $70,000 for this event. And how'd they do it? They didn't secure big corporate backing - they did it dollar by dollar, *dime* by *dime*. Ed, you are one upstanding guy! We should all be so generous and charitable.

Ed Hale with Trouble and Princess Leia. Ed raised over $70,000.

Oh my! How's that for dedication?!

As the mother of one of the babies who benefited from the life-saving research funded by March of Dimes grants - I realize how precious each and every dime is and what it can mean to the life of a child and to his family. I was touched by everyone who participated, volunteered and raised money for this event.

As an employee I was impressed. But as a mother, I was humbled.

It was also my friend Dainty's birthday. She was the hostest with the mostest.

D - Thanks for letting Trouble and I crash. Hope your birthday was as fantastic as you are. We had such a nice time with your family. Hugs to Princess Leia and Little Ewok.


Me, Dainty and Ms.S - it was a weekend away with the girls (and Trouble!)

Trouble poses with Dainty and Princess Leia.

Oh - and I rode on a bike for the first time ever. Eek! Am I a biker babe or what? Next time, I'm totally getting black leather chaps. You can laugh at how out of place I look in my dapper yellow MOD Staff shirt. ;)

Math Stuff and Biker Dudes

I promise to come back with a weekly report soon. I haven't taken pics yet, but I'm so pleased with Happy Scribe copywork. Rave, rave, rave. Because they have a topic - such as birds, planets, or history - Einstein and Picasso aren't thinking about the writing itself but focusing on the topic and that has made some, well... Happy Scribes. ;)

Einstein has finished his second grade math books. I spent the last couple days looking over the third grade stuff. I don't think it would be too challenging for him, but looking ahead I do fear he is going to outpace himself before his logic-solving abilities are strong. I've decided to spend a few weeks, perhaps even a couple months doing the Intensive Practice, Zaccaro's Primary Challenge Math and a few extra pages from Horizons all while solidifying the multiplication and division facts. We'll spend some time with fractions, graphs, measuring, money, telling time - all which he considers "fun stuff" because there's not much problem solving involved at this level. Perhaps around Christmastime I'll feel better about jumping into the 3rd grade materials. He is only 7. Perhaps someday I'll regret slowing him down a little, but such is the risk for the oldest child, I suppose. I'm learning how to do this right alongside him. I can only do what I think is best and hope it's for his long-term benefit.

This weekend Trouble and I are off to see Princess Leia and our friends The McTriplets at a big Bikers for Babies event. I've never been to this one, but last year they raised almost half a million dollars for the March of Dimes, and there is something about tough guys with soft hearts that gets me. Also, my friend McTriplet Mommy will be speaking and telling her boys' stories to the crowd. Hope those tough guys packed their Kleenex. Those McTriplets are amazing little boys.

Picasso is getting glasses on Monday. This has been a few weeks coming. Once he started reading daily (when we started "first grade" in July), I noticed his eye has been crossing. Amblyopia and strabismus are nothing new to us, Trouble has them and is also cross-eyed without glasses. Isn't it odd such a thing would strike twice in the same family? Picasso is not at all trepidatious and very much looking forward to picking his very own pair.

Why I Missed My Own Son's Baptism - An Essay on Trouble

I've been told that Handy Man brought in a digital camera to the recovery room so I could see our newborn son on the tiny 1.5" screen but I don't remember that. I remember the words "NICU", "think there's a problem with his heart", and "they think he should be baptized". My baby boy born three months before his due date was on a ventilator. He was born silent; too small to cry. He had a minor heart problem, a small opening, but it did not account for oxygen levels in the 30s. Thirty percent. He was blue and not responding to the efforts from the ventilator. In addition to his extreme prematurity, Trouble had Pulmonary Hypertension, Patent Ductus Arteriosus and was low birth weight for his gestational age (IUGR). He was on total "life support". Machines breathed for him, tubes fed him, probes and wires snaked out from his belly button, both hands, ankles and for a brief while, his head.

And so I missed it. His baptism was done in haste by the hospital chaplain, witnessed by a cardiologist, a neonatologist, a respiratory therapist, 2 nurses, his father and my best friend. But not by me.

He was put on an oscillating ventilator, given experimental levels of Nitric Oxide, a synthetic lung-moistening drug called Surfactant, Vi@gra, and hosts of multi-syllabic medications over the next three months. On day of life 11, it was discovered that the ventricles in his brain had filled and pooled with blood. He had a very big brain bleed. The hole in his heart closed after the second try of medication. He responded well to the Nitric Oxide. He received many blood transfusions. He had a PICC line, several IVs, daily heel sticks and chest xrays. Slowly though, the IV pole lost its ornaments, he was able to tolerate feedings, he was moved to a regular ventilator. On his due date, after 3 months in the NICU, Trouble came home. He weighed 5 pounds, 1 ounce that day.



Ultimately, this story has a beautiful ending. But not without a lot of middle stuff. I cringe inwardly when well-meaning people say things like, "it's amazing what they can do these days!" or "but he's fine now". Yes, it's amazing what they can do. Yes, our sweet little miracle, "Trouble" is fine now.

But there were quite a few days in between his birth and baptism until the layperson's "fine" prognosis. Premature babies are not just small babies. They are underdeveloped. And it takes years to develop what can be done perfectly in the safe home of a mother's womb if given enough time.



Trouble spent over 3 years as an oxygen-dependant child. His first 17 months he was also on an apnea and heart monitor - first at all times, later only at night or in the car - that would screech at us when his heart rate dropped or he stopped breathing. He had therapists with their own initials - PT, OT, ST, DT. He had a medication schedule so complicated we had to chart it.



Everywhere he went he was a spectacle - not that we went much of anywhere. The 'poor child' with tubes up his nose and stickers on his cheeks, dragging feet of hose behind him anchored to a tank in his stroller. Children stared. Grandmothers looked and smiled at me with faces of sympathy. At home, he had 50 feet of tubing. As he grew older and mobile he would get tangled around chairs, drag toys, and frustratingly reach the end of his tubing. Like a dog on leash, he would lay and howl while his big brothers roamed freely around the house. It was hard. Many days it felt like an unfair burden. I cried. A lot. He was so good-natured, tolerating years of those stickers on his face and tubes up his nose.



He celebrated his first, second and third birthdays on oxygen. No candles on his cake. No party. No germy McDonald's playland. No mommy-n-me classes. No preschool. No slides. When he was 2, he added glasses to his list of necessities he sported because he was cross-eyed. The very thing that had saved his life - oxygen - damaged his vision.

And you'd think a child forced to do all this would be unhappy, rotten, scarred. He wasn't. He was the happiest baby I've ever known. He charmed the doctors, nurses and therapists with his huge dimples, easy laughs, and flirty eye lashes. He was social, happy, loved his brothers, loved his books and his toys. He finally learned to walk shortly after his second birthday, and hasn't slowed down since.

I write this essay not for sympathy or even for empathy, but for understanding. Understanding of prematurity in general - kids aren't "fine", it isn't easy, this doesn't just happen to crack moms or those who don't see a doctor. Prematurity happens to healthy mothers who do everything right. We need answers for why this is happening to 1 in 8 births in the US.

But I also write this for understanding for Trouble.



Quite simply, he is a miracle. That word is used flippantly these days. But in the true sense of the word, my son is a miraculous creature. So when he wakes up in the morning and runs around the house swinging a light saber, it nearly takes my breath away. When he dresses himself, sings the alphabet, or says, "I love you, Mommy", I find a gratitude inside so deep and so sincere that I can't help but to know joy.

I used to long for the day when we could be an "anonymous family", to not stick out like a spectacle everywhere we went. And although I would never go back to those days of hauling tanks and equipment, some days I want to shout to the world so they understand how special this little boy is. I longed for him to be a regular kid at the park, and now that he is, I want to wear a billboard exclaiming how much he's overcome to be there. But still, deep in my heart, I find it nothing short of amazing that he is just a regular kid on the playgrou