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.

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.”

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.

OHS Day 4

AND WE’RE FREE!!!

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.

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.  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.

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.

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.

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.

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.

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.

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.

OHS Day 2

As soon as I signed off for Day 1 last night, shit wasn’t hitting the fan.  And I say that because the girl got BACKED UP in the #2 department around midnight.  Poor little thing was irritable into the wee hours trying to get out the ball that had built up all day from the gunky medicines.  After heat packs, thermometers, 2 suppositories, an enema, and a lot of mama shhhhing we had relief.  Well, looks simple enough in writing.  But that was a 6 hour process.  All you want to do as a mom is pick up your baby and comfort her only the way a mother can, but that wasn’t an option.  Agonizing. No sleep for anyone.  You should see these baggy eyes I’m sportin.  Sexy.

After we had that poop puzzle figured out, she had a good sleep in the morning.  I pardoned myself for a 2-hour nap at the hotel while Papa and Dad “babysat”.  Of course she slept for them.  But a 2-hour Mom nap never felt so refreshing.  I was in such a good mood afterward, even the fact that the “conditioning” shampoo left my hair so knotted that my paddle brush got stuck mid-stroke in my attempt to unsnarl the rat’s nest couldn’t get me down.  Most interesting bun I had ever formed.

Back through the hospital doors I went.  I now understand the grand colorful entrance and a main lobby full of music-producing toy sculptures that captivate your senses…to distract you from the sad, red eyes that fill every parent’s face wandering through the halls with child in tow.  These kids… it’s something else.  All of a sudden your story isn’t such a bad one anymore when you take a look around. A father talking a foreign language so fast that I am sure he’s traveled days to get here, while pushing his smiling stiff teenager son around with cerebral palsy.  A determined mom with her 8-month daughter propped on her hip, eyes as big as the Sun looking at the swarms of people buzzing around. Some people staring back at the baby’s golf ball sized tumor growing off of the chin on that angelic face.  A little boy jumping off the cafeteria walls with all of the energy in the world, unbeknownst to him that many are questioning his old man appearance that Progeria gives off. 

But I remember to smile back and wave at the innocent kids and proud parents. I remember because I hate it when we get the pity look.  Strangers turn away, put their head down when they see Lyla is different.  I remember that all kids deserve a smile and a wave to say “You’re awesome.”

And awesome Lyla was.  I walk back to our Cardiac ICU room #9 tucked back in the left wing – 1 of 29 rooms filled to the brim with the teeniest of brand new babies, all the way to a couple of 6 year olds, fresh out of surgery.  Here Lyla is out of bed!!! Papa is snuggling the rock star who got her O2 and another line taken out that unleashed her from the hospital crib.  Freedom at last! Now give me my baby!  It was a relieving feeling to hold my boo once again.  My buddy was back.  And boy did she ever appreciate the new recovery space of a warm body and snuggled arms that contoured her body just right. Out like a light she went.

30 minutes later around noon, I had the paperwork in front of me to leave the Cardiac ICU. Hells yeah! Step-down here we come.  Enter the world of a more relaxed atmosphere.  A TV, oversized comfy chair, space you can freely unhook your little patient from her wires to roam around the halls for an afternoon stroll, nurses that let you change the diapers, and no front gate guardsman to get past. Sure enough, Lyla was feeling like her old self.  Alert, awake, and SMILING!  There’s what I missed most. 

She’s been eating great.  Pain relief is down to Oxy and Tylenol. And naps are frequent to sleep away the memories of discomfort.  Big day tomorrow full of post-op testing.  Let’s hope Lyla aces these final exams!

OHS Day 1

That’s Open Heart Surgery for the inexperienced.  There’s a lot of acronyms in our bubble lately.

Long story short, IT WAS A SUCCESS.  She is doing amazing.  The dreaded moments of surgery are over and now we just have the uncomfortable days of recovery.

Timeline: anesthesia around 8am, incision was at 9am, heart/lung machine started at 10am, bypass ended with the repair complete at 11:30am, and doc was out to see us by noon to say Lyla was getting closed up and on her way to Cardiac ICU.  We got to see her at 1:30pm – to my surprise she was off the ventilator already with no central line in sight!!! This is unheard of in a good way.  She even took 1.5oz of Pedialyte around 6pm. Lyla Jane truly is a rockstar.

Lots of morphine right now (Hey Doc, can I get a little somethin somethin?), and lots of stirring with some grumbles.  But all in all, she’s doing pretty well.  The nurse even thinks we’ll be out of here early! (average stay is 7 days, we MIGHT be out in 4).

Of course I have a million words to say about the hardest day of my life, but we’ll save that for later.  Now I must get as much shut eye as possible next to her bedside.  But more like 15 minutes cat naps so that I can peek inside her hospital crib as much as a mama bear would do on her healing cub.

Sweet morphine dreams my little princess warrior.

Green Light

Miss Lyla passed all of her tests with flying colors today, so we've gotten the green light for her heart surgery tomorrow at 8am.  And mama got her wish by getting permission to see Lyla to dreamland tomorrow before the nurses take her away.  She will receive a liquid sedative that I can rock her to sleep to before she gets taken back to go under.  All I wanted was for her not to be scared, and I am so thankful I can be the last person she sees before she closes her eyes.

Bedtime was a little tough tonight - extra kisses, extra squeezes, really felt the weight of her in my arms.  Tomorrow will be tough, but a gift. Thank you all so much for your support.

Memoirs 101

WARNING: Week of surgery + 4:30am Lyla alarm since Daylight Savings Time + PMS = Emotional post.

Somehow the flood gates of mommyhood have been able to close a bit, so I’ve been getting in a little more reading lately. Love that it only takes the simple steps of cracking open your laptop, hopping onto Amazon, and clicking away on titles like Road Map To Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome, or the relatable title of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery. Ok, now these publications were bound to be more inspirational and less scary medical talk like my first books were. Screw possible death sentences on paper, I wanted motivation on pages. Those damn “You Might Also Like” features on these websites…I ended up with 6 books in my cart. Well done marketing wizards of Amazon.

There are many life-shakers that can happen to anyone during the course of our delicate continuance. Heart attacks, car accidents, cancer, laid off. Divorce, DUI, death, dammit can’t think of another d-word. And no, I don’t want to use our D-word right now with all of these negatives. When these attention-getters take place, support groups of every kind are out there. Like our heavenly 100 Acre Wood park just around the corner, as it went unseen until we sought out the embrace of some fresh air only the way a park can provide. Support can show the new “What Am I Going To Do Now?” you, that you’re not the only one that had their Life Plan taken away. There’s a certain kind of comfort to know that someone else graduated from this same daunting challenge before you, that you’re going to get all of their old test answers to get you through it, and lastly you’re going to pass the knowledge onto a newbie through the hallways of this unfamiliar school. I’d call myself a sophomore, testing the waters of the different kinds of support that work for me. The class of Memoirs 101 has begun. I’m sliding into the wooden chair front row & center, carving Lyla Rulz into the graffiti desktop. Tales from moms on how they were told their child has Down syndrome, how they looked like hell through the first 2 months of being a first-time mom. How their houses had a toy tornado rip through and they never get to use the hair dryer either. Tales of the road to acceptance, how their world had changed for the better. I love it. Makes me feel like a part of the cool in-crowd versus the awkward new transfer student. It’s funny listening to all of these teachers (authors), in that they were previous writers or photographers seeking out a career in journalism before these special births. And you can tell. Their words flow like a calm creek through the pages, gently rolling down a slight hill that eventually falls into a collective pond to end the chapter. The colorful sunset scenes are painted through black and white text that secrete feelings of awe into my eyes. I have never been much of a reader. Hello?! A major in Engineering doesn’t scream “Yes, I would love to have that 255 page book on a boy turning into a beetle read by next Tuesday so that we can debate for 3 weeks on if it was all a dream or not.” (Can you tell The Metamorphosis was not my favorite?) I guess I was just never really a fan of fiction. Now I have stories to read that rip the still-fresh emotions straight out of my memory from when I was in that dark hospital room, stories of how it happened the exact same way to a fellow naive mom that I had never met thousands of miles away in Missoula, Montana. But through reading the first chapters of her book for 45 minutes I suddenly felt like she was my best friend for having gone through it with me?

Now that’s powerful. Lulu teaching Lyla how to wave hi.

These previous writers that I envy have stepped up their game a notch to turn their careers into best-selling books. Previous photographers now have in-home angels to capture on film that spiral their studios into fame because their heavenly images have leaked, and everyone else wants a piece of it too. Me? Have I decided to halt my career of selling pumps to hotel basements and focus my creativity on writing a blog? For now, yes. I know, nuts. But I’ve become in tune with what really matters – being the best teacher for my daughter during these first critical years and changing the cold-shoulder view on Down syndrome.

It’s pretty simple for me to do actually. Just snap my Sony at the beauty that exists in my cuddle bug and write about how appealing our life is. There’s nothing to be scared of. Nothing to look away from. Nothing you need to consider when your OB tells you there’s a chance that your unborn child may not be like everyone else.

I have to believe that our common life-shakers make us step it up a notch. Make us go from watching MTV to The Discovery Channel real quick. Really tune into what matters most in life, and you just want to tell the world “Hey, wake up! This is the stuff that really is important! Not your designer purse or the impressive car you’re envious to have. It’s just LIVING.” Some trendy folks might think I just don’t get the upscale world. No, I get it alright. The greatest pair of designer genes are right here in my lap.

Our roles in life can lie in the ascent of the mountainous challenges that we face. Real characters come out. The layers of what society wants us to be are melted away by the sweat dripping to get to the top of that peak, one flimsy overlay of makeup after another. With the climb some come out as shy, some are over-confident. Some climbers are angry and some are quiet. Jessica’s character turned out to be a voice. We always knew she was loud when she had too much wine, but this is a whole different level. Uh oh, I’m talking in the 3rd person. Time to get off my soapbox.

Point is, I can see my words in the memoirs I hold in my anxious hands. If these books can reach millions, I hope to reach even just my circle of amazing friends and family on how our world is not that different. How this is all a blessing. How my hair will never look as styled as it was 2 years ago. And how powerful it is to focus on the positive in life.

Take these words with you as we embrace this week…to fix our daughter’s heart on Wednesday. Let’s not look at this event as a curse, but a miracle of science to operate on a heart the size of a strawberry. That craftsmen out there exist to repair the blemishes that one forgets to mend while a little girl is being formed in womb. Let my beliefs of technology and spirituality blend to create a sense of healing. (This paragraph sounds like a prayer, so I will finish up with a Can I getta AMEN!?)

Here we go again with another pre-op day tomorrow (Tuesday). A little less of an ordeal than the first: a chest x-ray, blood work, EKG, physical, surgeon consult, anesthesiologist consult, surgery consult, & cardiology consult. A little less haha. But no echocardiogram + no yucky sedatives = no fussiness. Woo hoo!

Here we go again. We have faith.