Thursday, March 28, 2013

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 

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 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 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. 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

1 comment:

  1. So happy to see your ohana grow and thrive. Your girls are so cute!