March For Babies 2013

This year's March for Babies was another beautiful sunny day in Waikiki.  The walk begins at 7:30 am in Kapiolani Park and we started out fresh and energetic.  But by the time we hit the turn-around point, the morning sun was blaring, all the babies were fed up with being in their strollers and we were soon a group of slightly sweaty, flushed walkers carrying adorable babies and pushing empty strollers=).

This is our third year walking the March for Babies and I think we're only now starting to get the hang of it.  After showing up so late last year that no walkers were in sight and we had to make up our own impromptu race course, we were right on time.  We were dressed from the oncoming heat despite the chill of the morning air and were actually there to be able to start with everyone else.  We were joined by Scott's parents, Papa and Nana Lee, Scott's brother, Stanton, and our friends, Joy, John, and Jess (we seem to have a lot of friends with "J" names).  And this was the first year for our friends, Tom and Grace, whose twins spend their first few weeks of life in the NICU as well.  

We might have been a little vague in explaining the walk to them as they thought we were leisurely strolling around the park and so Tom walked the course from Kapiolani Park to Magic Island and back in his rubbah slippahs.  What a good sport!

Even though we are no pros at this walk, I was still surprised at how emotional an experience it was.  Many of you know our story so well, and I feel like we have the biggest support network in the world.  We proudly wear our "Team Slugger" shirts designed, created, and printed by Roketo and the girls wear outfits, home-made by yours truly, tired-stays-up-all-night-with-iron-on-designs mama.  But I found myself walking in a sea of walkers with shirts that told their own stories of heartbreak and survival.  I couldn't help but cry, both in sorry and in joy as I saw families celebrating their miracles.  Children that started off weighing just a pound or two...now healthy toddlers, if-not a little hot and grouchy riding in their strollers.  Miracles.  This was the word that came to mind.  There's no other word it.  Their little frames amazingly strong, they were survivors.

I smiled at a little boy riding on his dad's shoulder with proud mama just a few steps back.  We struck up a conversation, exchanging birth weights and days spent in the hospital sitting by an isolette.  Smiling now...because this truly felt like a celebration...a parade past Waikiki tourists...waving and smiling with  unfettered joy.

And then there were the tears that you couldn't hold back when you saw T-shirts with angel wings stenciled around names.    Large groups and families still proudly wearing those shirts, still showering that child with love even if it was only a memory.

We were most impressed by this humongous crowd for Team Arianna and Team Brianna.  They actually had a group stretch before the walk started and carried a huge banner.  After the walk, I was able to find their website and read Nicole's story of her twin girls and we even connected through email. 

This was my brother-in-law's first year walking with us and the first thing he said when he saw the crowds was "wow, this is huge."  It is...you wouldn't expect it to be.  But it is amazing how many people have been affected by prematurity.  Which is one of the reasons why we're so proud to have raised money for the March of Dimes.

Team Slugger Hawaii was once again joined by Team Slugger NYC, led by BC classmate Yong and his family.  Their team keeps getting bigger and bigger every year. 

Thank you!!!  

Two and Half Years + March of Dimes Fundraising

Slugger at 2 1/2 years

To help us reach our annual goal, please visit our fundraising page 

www.marchforbabies.org/for_daddys_girls

Age:  2 years 8 months old

Weight: 26 lb (still in the 25% percentile)

Big Events:  X-Ray, CAT Scan, surgery, and 2nd trip to ER, first trip to zoo, first trip to Sea Life Park, first gig as a flower girl at Uncle John-John's wedding

Milestones: counting to 14, all letters (upper case and lower case),  starting to hold real conversations, really embracing being a big sister

Every three months, Scott and I find ourselves saying "this is our favorite age."  Then Slugger gets a little older and we decide "no, this is our favorite age."  I wonder what age she'll be when we no longer hold that sentiment=)

Slowly but surely, I'm seeing her morph from a toddler into a little girl.  Envisioning her going off to school was never something I could even imagine, and now I see the very real possibility.

We had a few scares which I'll explain.  I'm always hesitant because the worry that this knowledge might someday hinder her, whether it be access to healthcare coverage or whatnot.  That's one of the reasons why we use her nickname, but still, probably not perfect.  But, I know, somewhere out there is a worried or a grieving mom who will stumble upon this blog and read it backwards and forwards, because that is what I did on many a tear-filled night...so I still hope we can share our story openly...for now.

When she was six months old, I noticed a bump on the top of her head.  We took her to a specialist and he identified it as a cyst.  He asked if she had to wear head gear in the NICU.  We were so surprised that he thought to ask.  He said it was common because that was one of the pressure points, it was just a harmless cyst and would most likely come and go.  And it did disappear.  But as she neared her second birthday, it felt like the bump was back.  Just the cyst, I thought.  Fortunately, her second year check-up came up quickly and I mentioned it off-handedly to the pediatrician.  She felt the bump and said, no, this time it isn't a cyst, it feels different.  She said it was probably nothing but scheduled us for an X-ray.  X-ray showed a lesion on the bone and the doctors said, once again, probably nothing but we need more info to determine what it is...so we scheduled a CAT scan.  That was a lot more scary because she had to be sedated.  The scan still couldn't help them identify it but it did show something there.  So, we opted for surgery to remove the lesion and have the bone tested for abnormalities.

I must say, after all this crazy girl has been through, I wasn't too worried.  She always exhibits these strange and scary things but then amazes everyone with coming through with nothing wrong.  Still, it was about that time that my cousin, just 31, died of brain cancer and we learned that 2 family members had brain tumors.  So we scheduled her surgery as quickly as possible.  Nothing but praises again, the surgery showed no growth, the bone test came back absolutely normal.  We'll continue to monitor her, but she sailed through the whole experience with flying colors.  She shocked us by having no after-effects from the big day...she was trying to do front rolls in our living room that night, stitches and all.   That gave us heart-attacks.  But she didn't seem to know she just had surgery.

We still have to do some follow-ups to keep monitoring...and she also has a follow-up with the cardiologist to see how her heart is doing.  But beyond that, all of our expectations have been greatly exceeded.  We still remember the sit-downs the NICU doctors and NPs had with us two and half years ago.  She could experience delays at any time in any given skill or behavior.   There could be some down the road.  But as of now, we just haven't seen a single hint of it.  She's a charming, sassy, brilliant little genius.

She picks up things so quickly.  Thanks to shows like "Super Why" she knows the entire alphabet, upper case and lower case letters and recognizes numbers.  She knows colors (pink and purple are her favorite) and shapes (I was surprised when she pointed to our light fixture and said "diamond").   One day, Scott told her she could have a cookie and she said "I want five."  We were floored, thought she just got lucky.  Except at breakfast, she ate all her favorite Vienna Sausage up so I gave her one more.  She then told me "I want two."  I put another one on her plate and she said "I want three." Bwwaaaahaa, this girl is going to be fun to watch!

She sings and dances constantly...she's not very graceful in the dance area yet.  I think she's too heavily influenced by Yo Gabba Gabba so I can't really blame her.  She loves the movie "Tangled" which she could watch every day, but she also asks to watch "Monster's, Inc" and "Shrek."  

And how awesome is it to have a conversation with a toddler.  Her favorite new question is "What you doing, mommy?" She tells us when things scare her and she always insists on looking at the moon first before going into the house when we come home at night.

She loves to take pictures.  She knows where Scott keeps his digital point-and-shoot camera and she takes a billion pictures of just our living room.  It's also cute that she's heavily influenced by Peppa Pig, because I hear her telling her subjects (like the TV or the toilet) "Ready...Steady...Go!"  Her poor baby sister, Sunny.  Slugger likes to take pictures of her up-close and personal, 3 inches from Sunny's face with the flash firing away.

Speaking of Sunny, they had a bit of a rough start.  When we brought Sunny home, Slugger seemed to hope we would just forget about this new baby.  She'd try to cover her with mounds of blankets and pillows...I guess, out of sight= out of mind.  We couldn't ever leave the two alone together.  Somewhere, Slugger just fell in love.  She just loves her little sister.  If I ever try to take just Slugger somewhere, she'll spend the ride howling for her baby sister.  And no one can make baby Sunny smile the way her older sister can.  I realize things might change, but I love this.  I never realized how much a parent just hopes that their children love each other the way their parents love them.  I hope they will be there for each other.  Always.

I love that they look so different from each other.  When Sunny was born, Scott and I both marveled at how much she resembled the twins.  She still had her own look but I thought this wonderful gift gave us just a hint of what our twins might have looked like.  But Sunny is not her sisters, she's her very own unique person.  She's a whole different world.  She brought a lot of healing into our family.  She brought in a wealth of new experiences and memories to temper the bad we still carry with us.  We returned to the very same hospital for her delivery.  Actually, she was delivered in the very same operation room as her big sisters and Scott had to get dressed in the very same room where just 2  years before, he had to wait...scared and alone.  As a precaution, they had a RT and a NICU nurse present (one of our NICU nurses from Slugger) and I started to freak out.  It was like it was happening all over again...I started to sob hysterically and our nurse, Carey ran over and held my face and prayed until I felt peace and calm take over.  And from that moment on, everything was new...and better.  The next minute, Scott was by my side, cracking jokes and then Sunny was born.  A perfect little princess with a full head of hair, a mellow, happy baby who is just thriving beautifully.

We still have our moments, when Slugger is snuggling with us on the couch, or twirling around singing like Princess Rapunzel, we wonder what that moment would be if her sisters were still here in our family. There are still moments alone when I let myself remember and cry.   Life...living gets easier but remembering never does.

In a few weeks, our family will be doing our annual March of Dimes walk.  Once again, Slugger will wear a shirt with the names of her two sisters...but now we are blessed with yet another little girl to celebrate what our amazing little 2 lb 4 oz 26 weeker has accomplished and survived...and to always remember two sisters we wish were here to spoil and hug and kiss and just watch grow up.  But all in all, we are taking every day for what they are...blessings.  We are blessed.

We are so blessed.
To help us reach our annual goal, please visit our fundraising page www.marchforbabies.org/for_daddys_girls

Slugger- 2 years old

Slugger

Age:  2 years old (and a month)

Weight: 25 lbs.

Height: ~34" tall

She is in the 25% for her age for weight and height.

Schedule:

~8 am Wake up

     She asks for milk right away which she drinks while watching "Mickey Mouse Clubhouse"

    Breakfast time

Noon- 1.5-2 hr nap 

2 pm  Lunch

5 pm Snack or early dinner

7 pm Snack or second dinner

10 pm Bedtime

Foods

Favorite: 

She loves scrambled eggs (fresh from our two egg-laying chickens, no salt or pepper), turkey bacon.  She takes after daddy in that she loves meat, sausage, bacon, kalua pig.  You have to give her the turkey bacon at the end of breakfast or she'll only eat that and nothing else.  She has started to eat cereal and milk out of a bowl with a spoon.

She loves apples and grapes but I think apples are her favorite.  Still true to her first loves of broccoli and zucchini.  And sadly, she recognizes the drive-thru of McDonalds and we hear "ies....ies....ies" from the backseat as she asks sweetly for french fries.

She's a horribly picky eater (just like her mom).  We struggle to find things...she'll try most things but she just won't eat most of it.  She'll eat a few bites and then proclaim she's done. Whereas if you give her something you know she'll like, she'll eat four times as much.  She's an avid snacker on goldfish crackers and veggie fries.  We hope between that and broccoli, she gets enough nutrition in the day.  She also seems to alternate meals.  She'll eat well at one meal and then hardly anything at the next meal.  She is going through a milk phase and asks for it throughout the day multiple times.  Just water and milk for this girl.

Language

It's awesome to reach a point where her comprehension is advancing.  All we have to do is ask and she'll help us find the remote, or throw something away, or bring something to us.  Her vocabulary is growing but it is still limited.  However, that doesn't stop her from having full conversations with everyone and herself.  Her favorite thing to to do is to call us by name

"Mommy?"

"Yes, Slugger."

"...baby babble"

pause

"Mommy"

"Yes, Slugger"

"...baby babble."

And this might continue on for a while or so.  Words she knows well

Mommy     Daddy    Nana    Papa (Grandpa Pat)     Stanton (uncle)     John-John

Baaaa (Brad)    cow    moo   hor-hee (horse)   minnie ( for both mickey and minnie mouse)

il (milk)   peash (please)    moa (more)    wawa (water)    eeyore and elmo (bedtime stuffed animals)

Scah (Scott, which she likes to yell out)

She went through a phase where she sang "Old McDonald" constantly and thus that became the theme of her 2nd bday party.  Now, I never hear her sing it...her new song is Twinkle, Twinkle Little Star.  She can't talk  yet but she does the melody and sounds out the words and it's shockingly dead-on.

She also counts.  You can tell by the intonation and the fact that she's pointing to things as she does it...but it doesn't become intelligible until she hits "eight...nine...ten."  She can't count one...two...three.  But she knows 8-9-10.  Scott is trying to teach her 7...and we figure we'll work backwards from there.

She loves to sing.  She sings to herself (all babble and self-composed melodies) in the bathtub or when she's playing by herself.  We have a napkin holder at the table and it has a metal rod with a bulbous end...it becomes her meal-time microphone that she likes to use.

Milestones

-walks great

-runs

-can finally jump and get both feet to momentarily lose contact with the ground

-walks down the two stairs in our house without using a railing (scares us sometimes)

-climbs on everything

-can do a front roll (Uncle Ted helped teach her that)

-can draw amazingly well, loves to make circles and swirls

-just started putting two words together "moa peash" (more please)

-knows the parts of her body

-has fallen in love with pretending to cry or pretending to sleep

At 18 months, she was all about toys that made noise, music, or talked.  Now, she's obsessed with puzzles and books.  She has two books that she has to find things and those are her favorites.  "Where is this _______?"  She loves to draw.  We allow her to draw on herself.  Paper and her legs...okay.  Walls and furniture, not okay.

And she discovered the act of pretending.  At the end of every car ride, as soon as the car stops, she pretends to sleep.  She's actually got quite convincing that sometimes I think she's actually asleep.  She won't break character either as she helps you get her out of the carseat all with her eyes close.  She loves when we make a big fuss

"Oh, shhhhh, everyone, Slugger is asleep."

She starts to smile with her eyes still closed.

But if you bring up the idea of actual sleep...

"Oh, she's so tired...maybe she should go nai-nai"

She'll emphatically shake her head or say clearly "no,"  still keeping her eyes closed and the pretense going strong.  Then she loves "waking up" and we make a big fuss out of greeting her.

She's gotten a lot more affectionate.  She also watches more shows so she's happy to climb up on the couch and cuddle with you while she watches her shows.  We didn't realize she had so many favorite TV shows but she does watch them at her grandparents and babysitter's house.  It's not until she excitedly yelled out "Digo" while we were flipping through Netflix that we learned that she loves "Diego" and "Dora." "Super Why" and "Mickey Mouse Clubhouse" area also now permanently on our TiVo.  Still, her ultimate favorite and one that she starts going crazy as soon as it starts playing, Yo Gabba Gabba.  I can't stand that show so we rarely let her watch it at home...when she was sick, we let her have a marathon of YGG.

She hugs and kisses good-bye and has gotten really comfortable with the friends in our lives.  She wants to be anywhere but home.  She recognizes when one of us is putting on "outside clothes" and runs to the door.  She'll break down crying when someone leaves without her.  She's also become daddy's girl.  In my last trimester, I had a rough time so daddy and Slugger spent a lot of quality time together.  She still loves me but I do get jealous sometimes=)  I miss when she clearly favored me=)

We seriously love this age.  She's just adorable and fun.  She's quick to cry but quicker to laugh.  And now she's going to be a big sister.  Literally any day now.  Which is why I'm trying to quickly bang out this blog.  Part of my nesting routine was I put some serious headwork into her baby book and realized how valuable this blog was in looking up important milestones.

2 years and 1 month.  How amazing!!!

At the end of May, she visited her cousins on the Big Island and went

to her second rodeo.  I was nervous she would be terrified of cows and horses

up-close and personal but it was the opposite.  I had to run after her to keep her

from climbing into the pens with them.

She met her newest cousin, Anaiah, and got to play with her

favorite buddy, Zylin.  She's seen him just three times in her 

entire 2 year life but they have a closeness already.  She follows him around

and laughs at EVERYTHING he does.

Then a July trip in Maui to visit mommy's high school friends.  

We had a great visit to the lavendar farm.

And a small backyard party with family to celebrate her 2nd birthday party.

Theme: Old McDonald!

Her very first cupcake: Lemon cupcake no frosting...she LOVED IT!

March of Dimes 2012

It's that time of the year where we take the opportunity to  ask our amazing support team of friends and family to join us in supporting the March of Dimes.  2010 was a rough year but we've come so far since then and we don't want to forget the people and the medical efforts and tools that has helped Slugger get to be where she is at now.  We spent 81 hard days in the NICU, some of those days were and are still the worst days in my life, but I can't even express how much worse it would have been if Slugger wasn't here with us today.   March of Dimes sole purpose is to provide support and funding for research that has bettered the lives of premature babies and their families.

In 2011, Team Slugger was represented by members walking the March of Dimes Walk both here and in New York.   And we're doing it again this year!!! 

March of Dimes
April 22, 2012
Walk Distance: 5 miles
-starts at Kapiolani Park at 7:30 am

Please check out our fundraising pages and you can help us reach our goal.  But please don't feel pressured to give!!  Scott and I always talk about how there are just so many great causes, this is just one that hits home for us.  It's a way for us to show our gratitude and thanks just by showing up!  And we love the reminder of what a great group we have by our side.  If you want to show your support by joining us for the walk, you can choose to register or just show up to encourage us by walking 5 miles with us.

Keao's March of Dimes Page

Allison "Astro"
26 weeks 1 day gestation
Birth Weight: 1 lb 12 oz
Jul 28-Aug 16 (complications due to NEC, an infection common most amongst preemies)

Rory "Gizmo"
26 weeks 1 day gestation
Birth Weight: 2 lb 4 oz
Jul 28-Jul 28 (aortic atresia)

"Slugger"
26 weeks 1 day gestation
Birth Weight 2 lb 4 oz
Walking strong at 20 months old!!!

20 months No need to adjust anymore!

Slugger:

Real Age: 20 months (a little over a year and half)

Weight: 23 lbs

Height:  darn, I have to find her stats from her 18 month checkup

Schedule:

7:30-8:30 Wake up (she squeals when we walk in the room and rolls around in her crib with her Eeyore)

Breakfast then playtime

11:30-12:30  Naptime (1.5-2 hrs long)

Playtime, meals, bathtime

9-10 pm Bedtime

Notice what is missing? That beloved second nap.  She gave that up around 18 months...we tried with no success.  We finally had to accept it is not coming back=(

Diet and Nutrition:

Favorite foods: scrambled eggs, bread and toast, rice, noodles, broccoli, zuchinni, freeze-dried yogurt and fruit snacks, apples, canteloupe, oh, and french fries

Won't eat:  still won't eat pureed or mushy things.  Tried applesauce again last week and she spit it out.  Other than that, she'll eat most things, just not as much when compared to her favorite foods

Milestones:

 All her teeth finally seem to be growing in...at one time.  She had two teeth and only two teeth for almost a year and then her two top teeth finally came in.  I kid you not, two weeks later, Uncle Ted was playing monster with her and she lunged on to a stair and hit her brand-new top tooth.  We had to take her the ER, she was gushing so much blood and her tooth actually was pushed back into her gums. It was pushed back ninety degrees and impacted her gums.   I was sure they were going to have to pull it...ah, she just got it!!   It was disgusting...but by the time we were admitted, she had calmed down and they just sent us to a dentist.  A dentist who did nothing...said that until they're two, baby teeth don't even have real roots and just held in by tendons so they move easily.  He predicted the tooth will just straighten out on it's own.  And it has been incredible how it started to descend and is straightening out. Now she's got teeth all over, molars and all.

She's a walking, running, and climbing machine.  She loves to climb on the couches and chairs and sit like an adult.  She gets this smug little smile on her face when she's sitting on the couch.  Last night, she pulled out a dining table chair and climbed up.  Uh-oh, how do people stop kids from climbing on tables?

Physically, she's a little athlete.  She has one ball that she used to play with a long time ago.  One day, she just started throwing it at us...good throws.  Scott and I were surprised since we never really taught her how to throw.  Maybe her babysitter holds softbal practice with the kids.

Verbally, she's a little behind some kids but ahead of some other kids.  We've stopped adjusting her age since she's really just like any other year and half toddlers out there, just on the smaller end (25th percentile for weight and height).  She's caught up.  And her verbal is picking up.  Some of the words she can say...

-dadddy        -mama, mommy, mom         -dampa (grandpa)       -nana
-jaja (johnjohn)        -baba    -bahl (ball)    -Charlie     -doggie     -duckie
-zylin            -andy (auntie)

Most of these words, she says umprompted, some of them she knows what they are...but does better when she repeats it right after you say it.  She also loves to sing her own compositions to herself...they sound like "do di do di."  Last night, I swear she was singing the "oy yoy oy" part in the reggae hit "Buffalo Soldiers."

Big Events:
-a fever (102) that did NOT result in a febrile seizure or trip to the ER!!
- a visit from her Big Island cousin, Zylin

My brother and his family were able to come up to Oahu for a weekend.  My nephew Zylin is just 3 weeks older than Slugger but a head taller and 6 lb heavier.  He's also super verbal...he can ask questions and talk your ear off.  They loved each other.   They would just sit next to each other and babble baby talk to each other.  Zylin loved to bear hug her..unfortunately, because of their height difference...his bear hug looked very similar to a choke-hold.  But Slugger just stood very still and let herself be hugged.  One morning, Slugger was at Scott's parents and Zylin just kept wandering the house in search for her asking everyone "Where's shasey?"

Zylin had an amazing effect on Slugger's talking.  Before that, we would try to say words to her but she would just stare at us in silence.  She knew we wanted her to repeat the word but she took pleasure in NOT saying anything.  Suddenly, she was trying to form words, she even learned to say Zylin.  It was so completely sad when my brother guys had to go back to the Big Island.  Slugger just cried and cried in the car (the video is so sad).

We are so excited to take her to the BI in May where she can see Zylin and her newest cousin, Anaiah!

Happy Valentines!!!

Here she is in her sweet Valentine's Dress (a Christmas gift from Aunty Joy)!