School of Lyla

I have learned that Lyla was just testing us last week when her surgery was cancelled.  She was trying to make sure us parents could handle minor medical setbacks that are bound to happen during surgical recovery, but we needed to learn how to ride the medical jargon rollercoaster without freaking out. We’re ready this time… hands up and everything.  (We just found out that her new surgery date will be 11/10.)

I have learned how to hands free pump, feed her a bottle, and book her a doctor’s appointment via speakerphone all at the same time.  That being a mom is the meaning of multitasking. And the meaning of hard work with the biggest pay off – a big fat check of belly laughs.

I have learned that we tend to take the delicate human body for granted.  In good times, we don’t think about how our smooth heart walls were designed flawlessly when we were the size of a poppy seed. Or how every breath we take goes on without a hitch, without even having to think about it.  My daughter’s heart was not designed without error.  The thought that her heart will stop beating on its own, that a machine will breath for her…makes you realize just how intricate these bodies that we consume really are, and you need to thank your lucky stars if you were blessed with good health.I have learned never to leave the house with purple slippers on, without a diaper bag containing milk, and without a cell phone.  Yes the one day I ventured to do all 3 while dropping Troy off at the ferry 10 minutes down the road, was the moment our car decided to malfunction. Thank God they have a Dunkin’ Donuts here on every corner.I have learned that our souls seen through the eyes are too deep of a thing to just be done once our hearts stop beating. To believe that my loved ones and I will keep on going when we close our optic gateways for the final time is the essence of comfort.  It took me a long time to get to this.

Speaking of eyes, I have learned that an exhausted baby who refuses to shut hers for some reason can make the longest of nap-less afternoons filled with fusses that will pierce your ears.  Along with that, I’ve learned that 2 glasses of wine each night is not considered alcoholism – it’s considered survival. And even if the only thing that you got done that day was 1 load of laundry, you’re still a miracle-worker Supermom. I have learned that sitting on a park bench, watching the whispy trees blow, is the best therapy one could ever ask for. Forget the 4 walls of an overpaid doctor’s office, forget the $300 sessions.  Just go find a tree.

I have learned that infant socks are meaningless.  I put a pair on her, 2 minutes later after a couple of kicks – Bam.  Lifeless socks without feet on them on my floor.  The main problem: there are 32 pairs of infant socks in her drawer.

I have learned that the meaning of life is the network of relationships we form, and the common denominator of love. Fuzzy sounding, I know – but think about it.  Hence why I seek to form so many connections through my writing. Hence why I feel such strength through the hard times.I have learned that I am a mom.  And a new-prospective wife, sister, daughter, granddaughter, niece, cousin, friend, neighbor, and stranger.  A new kind of stranger is my favorite part.  I pick a particular line in the grocery store to greet the boy in the Extra Chrom Club working the checkout, or bring a cart over to an elderly man who just pulled into the parking lot.  The world is such a better place if you’re willing to conquer the simplest of tasks – to just be a kind unknown.

A Bad Day Turned Good

Lesson learned: don't let doctors scare the shit out of you.

We went in today for our CBC bloodwork, but Children's said they would not be able to confirm 1 of 3 possibilities until next week as they test for autoimmune neutropenia (basically means prone to bacterial infections but the disorder is short term). We were told if that was negative, then it's a lingering virus or the worst case of congenital neutropenia (very sick kid, no white cell production). Repetitive blood counts with white cells eventually coming back up would equal a virus, but it will probably take a while to come back up. If they never go up, a bone marrow biopsy would be able to confirm congenital neutropenia. All of this would delay surgery for months.

Troy & I thought we were going in for just another CBC (complete blood count), not an intro to Neutropenia like that was our diagnosis. The doc sat there and lectured us on it for 30 minutes. We walked away thinking our babe was going to be a sick little kiddy. Just one more thing to worry about. The rug was pulled.

At 7:30pm the surprised doc called to let us know Lyla's white count is back up from 500 to 1600! IT WAS A VIRUS! That bugger of a virus had us all scared, but now I'm so thankful it was just that! Your thoughts and prayers were answered, and I can't thank you enough. New surgery date to come!

Surgery Postponed.

Surgery is postponed. Lyla's bloodwork today showed a severely low white blood cell count, which either means a virus or a whole other can of worms with a low immune system disorder. Surgery is postponed until further testing on Thursday. No other words but...Exhausted.

Where’s the Pause Button?

This is it. This is the age I want to freeze Lyla at. Like when your daydreaming about cuddling and playing with your unborn baby before you’re even pregnant, and you envision this little pudgy ball of smiles that just adores you as Mommy? You know, the ones you had after seeing those mushy Pampers commercials and thought “Oooooo, I want one of those!”  Lyla is now at a place where her features are cross-roading my babyitis dreams, and I want her to stay right here.The time where she constantly smiles as big as the Grand Canyon every time I talk to her.  The time where she’s starting to be buddies with Winnie the Pooh and Glow Worm.  The time where she fills out all of her cute outfits with itty bity baby rolls, even the hats fit with that teeny head of hers!

She’s Weeble Wobble sitting, appreciating the crisp fall air on our walks, and gazing out the rear window at the flashes of sunlight blurring through her favorite trees on our drives.   Wheels On The Bus instantly stops a cry, she girlishly giggles when she gets undressed as my fingers brush under her chin, and addictively belly laughs when you kiss her tummy.

   Everywhere we go it’s “Oh.My.Gosh. You have the most adorable baby!” as we parade down the aisles of Target in her ballerina outfit, complete with a tutu and fake lace up slippers.  Duh, of course I do.  She’s so curious to pick everything up, eager to say “Ooooo that Koosh Ball feels cool in my hand” or “Now, we’re talkin’ on the gums”. And of course I want to freeze time as it’s 2 days before surgery, and that precious skin is still zipper-scar free.

I’ve been doing a lot of extra snuggling, some extra Naps on Mom time.  We danced in the sunroom today to a little Into The Mystic  - nothing like a little Van to make everything right in the world. 

And Iiiiii, want to rock your gypsy soul

Just like way back in the days of oooolld

And magnificently we will flow, into the mystiiiic

Just getting my cuddles in before I can’t hold her so tight for 6 weeks.  Really for the first couple of days post-op, not even be able to pick her up at all.  But the moment that gives me nightmares and causes me to go silent when envisioning is the pre-op nurse holding her arms outstretched for me to hand over my perfect-to-me daughter.  Has haunted me from day 1.  I wish I could stay with Lyla until she falls asleep to dreams filled with milk – a really long dream this time - but rules are rules. Instead we will impatiently wait on October 12 until those relieving words are reported back, “The surgery is done and you can go see your daughter now.”

But since freezing time is impossible, we’ll just go out and make the most of it.  Yesterday, we found HEAVEN. ON. EARTH.  Literally.It was straight up out of What Dreams May Come.  And get this – it’s right around the corner from our neighborhood.  The conserved land is called World’s End because of the northernmost point overlooking the Atlantic Ocean.  I was blown away from the rolling hills scattered with tremendous fields of tall grass, the water’s edge backlit with the Boston skyline that met the green hills with such great contrast of color, and the perfectly carved out carriage pathways canopied with the architecturally planted trees that reminded me of the Gone With The Wind section of Government Blvd in historic Mobile.

The only problem is – it’s October! Why did we not discover this in May?! Oh well, I guess it’s not going anywhere over winter. Get a load of this peacefulness…

And then it came to me with the whole cartoon light bulb hovering over my head. I whispered to Lyla as we were having a bottle and Dad was napping, “Lyla! This is the 100 Acre Woods we’ve been reading about!  I think Pooh Bear lives in that tree, and Tigger is bouncing down the path just around the corner.  But I think you’re Piglet with the way you’re chugging this milk.”  Trust me when I say that those books can give you a lot of insight now as the adult reader!  Who needs Dr. Phil when you have Owl.  I am amazed by the simplistic messages that would make the world such a better place if the auto-pilot parents would just listen to what they’re reading to their children every night.  So if you’re feeling lost in life – read a Pooh book!

“Don't underestimate the value of Doing Nothing, of just going along, listening to all the things you can't hear, and not bothering.” –Winnie the Pooh

 

On the eve of surgery week, the emotions are really starting to flow.  I try to hang onto those better-world feelings as we quickly approach Tuesday.  The day she was born we found out she had Down syndrome at 2:000 am, and 23 hours later learned she had 2 heart defects.  It was a double whammy.  I thought my suddenly special world was going to be taken away within hours of just meeting her.  When you hear your kid has a heart defect, for some reason you think they're not going to make it.  The heart – the center of our being.  And my daughter’s didn’t work right.  Shit.  But then as the weeks went on, we learned that the defects were very common within our little extra chromosome club.  And that it was a very successful surgery to correct the lives that deserved to keep on giving.

Here we are, 6 months later.  Exactly 6 months later.  Ready to tackle the hardest day of my life, I’m sure Troy’s, and well I guess Lyla's too.  (But I don’t know, all of that work to squiggle her way down the birth canal was probably really hard too. You want me to put my head through where?!)  We're ready.  Well I guess we're ready.  We've talked to other moms who have gone through this.  We've seen pictures of other little ones hooked up to the maze of wires post-op to get a feel of what it's going to be like entering that sterile recovery room.  We've got the bags packed once again like we did while pregnant.  And somehow, I feel like someone is going to pull the rug from under us one more time as we give our daughter up to the nurse that we just met 5 minutes prior. But it’s Children’s Hospital Boston – the place where families fly from Turkey to get to these #1 rated pediatric cardiac surgeons in the world.  I need to remember that confidence. And do something very un-Jessica like:  just give up the control for those 5 long hours to those miracle workers.

I have hope.  The past 6 months have taught me that positive thoughts can motivate a day into something it wasn't before, because of stupid books like "A Guide to Babies with Down Syndrome" that will scare you to all hell and back with flashes to the future of your possible medical-drama life.  Worst case scenarios that probably won't even exist.  I go into next week with strength that we will get us through surgery week, just like we have gotten through the last 6 months - with ease.  You can't dwell on it, you can't beg "Why me?!" You just have to deal.  And know that with your commitment and encouragement, you will successfully cross over to the other side of the tracks by just being there for your babe. 

Will it will royally SUCK? Absolutely. Will it will be the least sleep you've gotten in your life?  Probably, even outranking those sleepless days through hell week in my sorority.  But I constantly remind myself that surgery just makes it all better.  The surgeons will lift the emergency brake off of her heart, and she can then coast on out of the hospital parking lot to enjoy the rest of her life unrestricted. 

So here’s the run down:  Tomorrow (Monday) is our pre-op day.  We go in at 7am to start a round of tests & meetings: chest x-ray, blood work, a physical, a sedated echocardiogram, meetings with the surgeon/ cardiologist/ anesthesiologist, and wrapping up with a tour of our temporary home.  Should be about an 8-hour day.  Yuck.  With my best effort, I will be updating this blog throughout Tuesday and recovery week to let all of our loved ones know the progress Lyla is making.  I understand it can be hard to be so far away from the operation when all you want to do is show support, but this will be a great avenue to send your love while we post messages on how our little rock star is breezing through recovery.

Alright, here we go!