Tuesday, November 30, 2010

Tis The Season

The turkey carcus was swallowed up by some yummy day-after Thanksgiving turkey tortellini soup.  The family has made their way back by planes, trains, and automobiles from our little waterfront rental.  Our cozy ‘Grandmas Are In Charge” Thanksgiving is complete, leaving me stress-free to take care of the remaining bits of our tiny patient. 

2010-11-27 004pikAmazing how much has healed in only 2 weeks. 2010-11-28 004pikRalphie!!! I can’t move my arms!

2010-11-27 009

Rich Kahlua cheesecake for breakfast every morning is over…damn.  Thanksgiving 2010 is finito, but marks the kick off to The Holidays. 2010-11-25 003pik

2010-11-25 002pik

2010-11-25 012pik 2010-11-25 013pik
2010-11-25 010pik2010-11-25 005pik
2010-11-25 011pik 2010-11-25 026pik
My favorite time of year.

I was waiting for the house to quiet down back to its late night silence.  For the living room to be free of the holiday chit chat melodies and just full of the diamond glow from icicle lights hanging in the windows.  To be able to stare at our sparkling fresh-cut Christmas tree, standing 7ft. tall, peeking out the glass door with it’s just the right amount chubiness.  Our first real tree in years!  I feel like a true Northerner again.  Letting the evergreen perfume motivate my creative juices to put together a post on how The Holidays are the best fuzzy-feeling times an optimist could ask for.  2010-11-23 008pik

10 days since my last story, and I was now filled to the brim with all of the fun tellings of how bright our festive abode has been lately.  To show off my Target Holiday $1 aisle skills in some photographs.  To decorate this blog with “I am thankful for…” paragraphs relaying a message of appreciation I hope to pass onto my absorbent readers as they overlook our picturesque New England fall walk we took last week.  Of course I left my camera on the dining room table - right next to my pile of Make Sure You Grab This stuff that I always forget - so cell phone camera art it was.

2010-11-16_12.44.22 2010-11-16_12.43.25

2010-11-16_12.48.19 2010-11-16_13.15.17
Looks like this mom had a rough day!


But top of the list is to get caught up with some of my own inspirational readings through others’ eye-opening blogs, and I came across a heavenly woman who advocates for charities in need of being heard.  This one little faint infant cry was coming from her latest guest blogger, and Thanksgiving 2010 I am most thankful that I had my ears perked up on ‘Mama’s Super Ability To Hear Cries From The Shower’ mode to get wind of this baby boy featured.  I cannot begin to replicate her enlightening, impactful, profound message. So please, click this trooper’s picture to hear Cliff’s story from his angel’s mouth directly. 


As you can see from Cliff’s message, we have lots to be thankful for.  Not to pity his life, because it should be celebrated.  But I firmly believe will be changed by this cause.  We must be thankful that do-gooders exist out there.  That even though this advocate blogger’s life was turned upside down itself, she still found the sliver of time in her mommy days to make another child’s life hopeful.  To pull Cliff from the system where his tentative itinerary is the final destination of a cold institution, and instead detours him to a love-filled, kisses everywhere, bountiful hugs kind of home.

Sliding a $1 bill into the Christmas cheer ringing from the Salvation Army red bucket, even though the guy shaking the bell may look a little creepy, is the right thing to do.  Writing your name with black Sharpie on a cartoon turkey to tape on your local grocery store’s wall after a $2 Food Bank donation to fill a stranger’s Thanksgiving plate will make you feel better about purchasing that 14lb. turkey on the conveyor. 

Now taking this challenge – $5 or more to help Cliff find a mom and dad – will fill your core with warmth.  A mother and father that want him, but can’t afford the $20,000+ it costs to adopt.  Skip the gossip magazine you’d buy at the register, and instead give this little boy the Christmas gift that he deserves. 

If you’d like to take the extra step, please continue to give when you can to Reece’s Rainbow.  It’s the parent organization to Cliff’s cause.  They promote the international adoption of children with Down syndrome by raising money to give adopting families the extra financial help to bring a child with Down syndrome home from a miserable existence in overseas orphanages.  I don’t know how I was in the dark about Reece's Rainbow until now, but I am dumbfounded by it's overwhelming intention of giving all special needs kids a home. 

The lure of hyperlinked almond-eyes on an awaiting orphan, leading to another link listing all of the helpless faces needing homes has me in a mess of tears.  The guilt sunk me into the couch as I stared at all of these souls crying out for help.  I know it’s heartbreaking to see, but don’t let the heart ache make you look away.  Push through the pain.  Click, click, click.  Now I’m staring at pages showcasing which kids have been a glimmer of hope by fundraising families trying to get through the expensive, tangled process to take them in.  Click, click, click.  Feelings of raw envy for the stories of families who have fully adopted from beginning to end one, sometimes two, one couple chose THREE beautiful children.  And I thought it was hard to shower – holy multi-tasking props to you super adoption mamas!  The child’s before picture taken beside the cold crib rails overseas, right next to the glowing after pictures with a rosy-cheeked little girl engulfed in warm hugs by her new family.  Breathtaking. 

I hate to think of how these little darlings were given up in the first place, but gives me hope to see the good outweighing the bad through pictures documenting the new ear-to-ear smiles on these babes’ faces as their new Dad kisses their forehead.    The new Dad that was so selfless to help as long as money was not a factor.

Keep a place in your heart for the godsend Reece’s Rainbow organization that connects all of these forgotten kids to open-armed families.  Or do what I did and consider the true Christmas spirit – when you donate $35 or more to a specific child through Reece’s Rainbow Christmas Angel Tree before December 15, you will receive a Christmas ornament featuring that special child’s face that you have gotten one step closer to a mom to cuddle with.  Tis the season to spread gifts, so why not give a meaningful one instead of that over-sized remote control you found on the end cap at TJ Maxx?

113pik 134pik

045pik 048pik
121pik 119pik
131pik035pik044pikTis the season. Happy donation giving!

Saturday, November 20, 2010

OHS Day 1 Revisited

On surgery day I had a million words running through my dizzy head (that I actually got to blow dry!) on how to describe the emotions of it all. There wasn’t enough time on Day 1 to get the script to her saga all down on paper….well, digital screen. I had to revisit the feelings once we were in the safe haven of home so that I could divert all of my mama attention in the ICU to the non-sleeping infant in the caged bed coping with coming out of anesthesia with some scary breathing patterns.020pik

The common question of how I was feeling that week leading up to the ubiquitous moment was asked frequently. The only way I can relate the anguish for someone that hasn’t laid their child on an operating table, is to think of it as a speech you need to give for a public speaking class. We’ve all been there.

The dreaded class that no one wants to take. You hesitantly walk into your inaugural class and learn your very first speech will be one day soon. Before you get your D-day, the calm teacher prepares the group in every way that he can. Teaches you the basics, plays former Presidents addressing the nation in a goose bump brilliant way, suggests mock pitches with your classmate sitting next to you.

Then the assignment comes for your first speaking debut, and you’ve been randomly chosen to go first. Holy crap that’s so soon! I’m not ready!

You start to write out the words you want everyone to hear – not too long or you’ll never remember it all, not too short or you won’t get a good grade. Next is mental preparation for the sole-attention that will be focused on your trembling face. You must stay strong. The nerves start to set in as you realize how many people will be watching, and you don’t want to screw it up.

The hysteria is building as the big day arrives. But wait – there was a fluke snow storm and school is cancelled. Relief that you get to store the stress away, anger because you just wanted to get it over with. Rip it off like a Band-Aid. Your speech must be rescheduled as the last one instead of the first. Great, more time to dread the moment.

Time passes quickly. Before you know it it’s D-day again. Teacher calls you up to the unfamiliar place at the front of the room. Whole different view from up here. Beads of sweat start to form on your hairline you fixed so nicely that morning. Palms are so clammy against the note cards there to bail you out. There’s that stomach-drop feeling racing through your mid-section. Tears are welling up behind the lens of your eyes to crack open a spontaneous cry to say you really don’t want to do this. But you force them to stay in. And then you begin with that first slicing word cutting the silent air.

Your introduction is memorized and words start to just pour out of your mouth without even thinking about the sentences written on those note cards that are now smudged with sweat. You’re doing it. It’s working. You double-check your confidence with a quick glance to the teacher, who gives you a slight nod in return that says “Doing great. A little bit longer.”

Half-way through your act you fumble your routine and are unsure of how to keep going. Your mind goes blank, all the words are gone.

Think. Think. Don’t cry. You can do this.

It’s not what you’ve rehearsed, but you continue on with a brilliant message. A little improvising and you’ve gotten yourself to the conclusion. Wrapping up your words with a smile on your face knowing it’s complete. And you know you did a good job. It’s over! The best feeling in the world. Elation is soaring through your veins, so overwhelming that you want to go to the nearest bar and celebrate with some pints. Hold up lush, it’s 11:00am on a Wednesday – maybe that can wait till the weekend. And when you’re not sleeping in a hospital room.

A couple of days go by and the grades on the assignment are returned. Assured you’ve done your part, but not confident of your performance compared to others that had gone before you. The papers are passed out one by one to the parents…I mean students. And before you lies a big fat A+ in red marker as bold as Mars.

…Now multiply all of these feelings times 1000 – that’s surgery on your child.

The class is Surgery 201 – an advanced course for the risky procedure of opening the heart. You the student have this “Yeah, I got this” poker face that’s all but a front to the true scared-shitless mom deep within. The teacher is the intelligent surgeon guiding you through. My classmate is a dear new friend that showed me the ropes after her daughter was healed just months prior. The classroom is the awkward surgical waiting area, bad cobalt blue leather furniture and all. The speech is your racing mind while the operation is underway. And the grade is the doctors making rounds on Day 4 to tell you “She’s great. We rarely see anyone recover this fast. Go on home.”011pik002pik057pik


I didn’t snap any pictures on Day 1 for a reason. The drugged little one’s half-open eyes, her puffiness swelling her lips, all of the wires making her as delicate as a missile's electrical configuration, the O2 tube in her little button nose – not a sight to remember one by. It was the happiest moment to hear that surgery was a success, but I underestimated the tougher part spelled out in the name itself - the Intensive Care Unit. Intense. Constant caring. A lifeline unit. The dedicated 1:1 ICU nurses encourage the parents to go home for a much-needed good night’s rest after their marathon surgery day. But I get it now, that’s not really why they shell out that advice. The experienced bed-side nurses know it’s a sight only for strong eyes to see your child coming to grips with open heart surgery. They know the first sleepless night will be the worst, trying to spare the memories of your baby struggling, making you as a mom feel nothing but helpless. The gut-wrenching sight of her respiratory rate dipping down to 9…let’s just say it was 43 when Lyla left the Intense, Constant caring, lifeline Unit.

But it’s over now. We’re back home and performing surgeries of our own. Some days when your baby has the biggest explosion of a diaper you have ever seen, one has no choice but grasp the orange-handled Fiskars to gingerly cut the poop-laden onesie off to be thrown into the Diaper Genie. There’s a reason why those things are 5 for $4. And she laughs the whole time like it’s a game. I love it.




Sunday, November 14, 2010

OHS Day 4


Beating all expectations, Lyla was discharged from the hospital on Day 4.  You go girl.

The day started off with Miss Thang impressing us with her sitting skills, desire to play with the new toys sent from adoring fans, and ability to get right back on the Hungry horse.  As each white coated doctor or nurse practitioner came in for rounds, they would express how awesome she looked propped up on our lap versus glued to the hospital bed.  They couldn’t believe how well she was doing after just getting her chest cracked open.  So impressed that the words “discharged today” started to float around.006pik

Wait, is my caffeine buzz paying with my head?   Did they just say we can go home in a couple of hours??!!

I didn’t want to get my hopes up since large hospital time usually equals space time where the lack of gravity makes everything move half as fast.  A place where you have to call the nurse for a bottle to be made and it shows up 20 minutes later.  Hello?! I have a fussy hungry child here, and that takes 5 minutes at home.  Or when they have to weigh each diaper after it’s been soiled.  You remove the first #2 she’s done in 24 hours after plenty of foreign medicines and your first instinct is to get the stink bomb being handled like nuclear waste over to the covered trash bin in your 10’x10’ “home”.  The place isn’t exactly well ventilated with a flowing breeze from the sealed shut 8th floor windows.  Nope, instead you must leave it out in the open for everyone to enjoy and chill with the new air freshener until the nurse is available her next time in.  Not complaining since the big-hearted staff really did take care of us. Just love our Diaper Genie at home that much more.

To my surprise, everyone pulled together and got us out the House of Healing doors by 4:00pm.  Hallelujah.  2010-11-13_16.50.40 We left our mark in the recovery wing.  They’re going through some renovations and have these temporary walls up that everyone writes on.  We of course left photographs!

You know when everything is happening so fast so that you can’t even really grasp the significance of what’s happening before your eyes?  Just going through the motions of what someone is directing you to do, but not really understanding the meaning of them.  That’s what Day 4 was like.

Hell, that was the whole hospital stay now that I think of it.

How one goes from lying on an operating table, chest open, heart stopped, lungs stopped  - and then a mere 80 hours later is out the hospital doors like nothing ever happened is beyond me.  As I quote my hilarious cousin Katie, “I couldn’t even recover from my wisdom teeth being pulled that quickly!”  Well put.

But she’s home.  And putting her to sleep in her own comfy cozy, dimly lit yellow-walled nursery last night was glorious.  No more white walls.  No more bright lights.  No more crib that looks like a monkey cage.  Just home.010pik

012pik 013pik


So I’m off to enjoy our Sunday at home.  Thank you everyone and anyone involved on getting us here.  Home is where we want to be.

Saturday, November 13, 2010

OHS Day 3

(I passed out at midnight in my typical laptop-on-lap-head-slouched-down kind of way while writing this, so I’m sorry for the tardiness posting this!)

Lyla passed all of her tests today! She takes after her mom in the straight A’s department.  She takes after her father with her ability to rock. Even though I can throw a mean head bang. Chest x-rays are all good, EKG is a thumbs up, blood work is perfecto, urine is good, and her temp has stayed put.

001 005

Our big milestone today was getting rid of the annoying external pacemaker wires and scary drain tube that were still nestled right next to her made over heart.  Yes, they literally pulled them out.  I made the mistake of finding this out first hand.  Any mom would volunteer her voice to sooth her babe when the nurse asks “Do you want to come in with us so you can try and sooth her on the table?” Talk about tugging at my heart strings emotionally and Lyla’s physically…literally.  MISTAKE to go in.  Don’t think I’ll be able to get that yanking sight out of my head for a while.  But all of that mess is behind us and we no longer have to prance around hanging cables or attached bulbs full of raspberry liquid.  She’s wire free! And so much easier to snuggle.010

We’ve been doing a lot more walks lately as we’re not dependent on the in-room monitor so much. I am anxious to walk too to burn some of these hospital food calories off (#1 Children’s Hospital in the country = #1 cafeteria in the country. Puts some restaurants to shame!) So we walk, taking in the sounds of the hospital.

The woman at the end of the long corridor leading to the sacred Cardiac ICU doors, clutching onto another woman, crying so hard I can hear her before I even round the corner to put the embrace into view.  Oh no! I feel so bad for her.  I hope her child didn’t die. Geez here come my own tears full of guilt for parading my recovering daughter in front of her grief. Even a Children’s janitor I passed paused and  put her gloved hand to her open mouth to display jaw-dropping sympathy. And then it hit me.  As their hugs pulled apart, the other woman’s face that was previously buried in the sobbing woman’s shoulder was smiling.  Wait, this isn’t a sad situation, it’s happy! The woman was crying tears of joy! She was hugging a doctor, thanking her with tears of joy. Priceless.

And then the damn beeping everywhere. The elevators beep.  The medicine pumps beep. The doors beep.  The bracelet id scanners beep.  And the dreaded beep – the pulse ox monitor alarm that will wake you in the middle of a dead sleep, rush to your kiddo’s side, and pray that the fluorescent numbers rise back up.  Sometimes it’s a fluke and the summoned nurse doesn’t make a big deal out of it.  Sometimes she looks concerned and makes your gut drop.  Sometimes I’ve seen a flock of nurses run to a beeping room, but thank goodness never ours.  Even as I’m resting my head down on my deluxe fold out chair for the night, I swear I’m going mental hearing beeping when there’s none to be heard.

Love the noises of the proud dads in the hallway on their cell phones letting everyone know that surgery was a success.  Their voices of excitement are heart warming.006

Hate the noises of the crying babies. It’s not everywhere, but we’re fortunate Troy & I are able to be with Lyla 24/7. The assumption that adoring parents can hover over their healing one’s side until they’re discharged is inaccurate – not everyone can get away from other binding children, work, or homes far across the country for weeks at a time.  Our roommate is a miniature 5lb, 1-month old baby who has been at Children’s since he was 8 hours old.  He’s had heart surgery and intestinal surgery the first 2 weeks of his life, one of which clipped his vocal chords that left him unable to express his cries.  The poor parents live in Rhode Island with their 4 year old daughter and cannot be here as much as they’d like to be.  The spectacular nurses do a good job of looking after him, but all today and night the multitasking couple were absent.  This little dude is TEENY and I just want to scoop him up when no one is around to hear his muffled yells for help.  I’ll have to admit my mommy instincts were uncontrollable a couple of times as I snuck over to shhhhh or sing to him.  But on the positive side, he’s headed home Monday to be with the mama that he needs.013

Love the “She’s sooooooo cute!!” praises we get from all of the nurses.  Lyla is a current fav :)

Heard over the loud speaker “CODE BLUE out on the playground. Any doctors and nurses available. CODE BLUE out on the playground." Shivers.

Saturday’s noises should be pretty tame.  It’s a day of relaxation and intermittent monitoring.  Sunday should be our final day at this institute of medical magic.  We’re ready to bring this little girl home where she belongs.007pik