Tuesday, October 30, 2012

State of Emergency?

or just another Monday?

Hurricane Sandy has arrived. And as a result, schools have closed, streets have flooded and hundreds of thousands are already without power.

According to the nonstop news coverage, our region, state and county have all declared a State of Emergency.

I asked MC for his take on the storm and he just gave me his infamous one eyebrow raise in response as if you to say, Seriously, mom? I did monsoon season in India. You call this a storm?

And he's right. Far more concerning is that the 9th Floor coffee machine is broken and a majority of the hospital coffee shops are closed-- because apparently, there is grave danger in serving coffee at a coffee shop during a hurricane.

So aside from that State of Emergency, we are, as our very much missed British mates would say, keeping calm and carrying on.

Carrying on, that is, with our plans to take MC home this week. 

I'll admit, it does seem fitting that MC would select a homecoming week during which all government offices have shut down, home health care agencies are grossly understaffed and it's anticipated that hundreds of thousands of homes will be without power for extended periods of time.

But if it hasn't become apparent already, we do not do average in this family. 

I mean, really, where's the challenge in bringing home a healthy newborn from your local hospital after an uneventful 9 months? Nope. We much prefer to do solo out of  country preterm births followed by 7 month old homecomings requiring more equipment than an L.A. gym.

So in anticipation of this really special event, we spent the afternoon gettin' personal with our at home feeding pumps, pulse oxmiters and oxygen canisters-- and how to run them should we find ourselves without power-- as well as coming up with good day seizure drug plans, bad day seizure drug plans, I-haven't-a-clue-whether-it's-a-good-day-or-a-bad-day seizure drug plans, and of course, plans for deciding who will get to call the coin toss when making these very big decisions.

Because with a son like MC, sometimes a coin toss is the best you can do. He's a complicated kid with extremely complicated diagnos(es) which means that upon his arrival we'll be using an armory of medicines and equipment "on a trial and error basis"-- trust me it's as scary as it sounds-- in our mini ICU formerly known as H-O-M-E. 

 Nevertheless, we could not be anymore excited!!! Did I mention that we are finally, after 4 long years followed by 7 plus months, bringing the final piece of our family H-O-M-E?!?!

As our ever-increasingly annoying newscasters would say, stay tuned for upcoming coverage of this incredibly historic event.

Friday, October 26, 2012

Return of One Cool Dude

Maybe it was because she had nowhere else to go, or maybe it was because she was so tired, 'cause she went to bed and slept and slept like she hadn't slept in years.  ~Forrest Gump

Whenever MC returns to the 9th Floor, I'm always reminded of this scene in Forrest Gump when Jenny comes home to Forrest.

One of the tragedies of having intractable seizures coupled with living in the hospital is that MC never sleeps. Ever. It's dreadful to watch as his brain battles his eyes in a never ending war for rest.

But it's contradictingly beautiful to watch how upon return to his favorite room on the 9th Floor, he somehow manages to calm himself and fall into a deep sleep that occasionally lasts for days.

So yes, this means we are back on the 9th Floor, and yes, this means that we can now resume our plans for heading H-O-M-E, an environment that I envision MC will find equally if not more peaceful. 

Whenever I start to plan, however, it's like deja vu from my time in India. So many variables, so much required input from so many different people, very few factors that I can control and a child whose medical status changes hourly make me feel foolish for even thinking about planning for an event beyond today.

During the last couple of weeks in India, I worked day and night to find a way to get our trio safely back to the states. Ultimately, I decided that there was no fool proof way to do it. It would always be a risk, a big risk born almost entirely by MC, but one that I was willing to take to unite our family.

We are once again going to have to take such a risk in an effort to unite our quintet. It's officially flu season which means Princesses are no longer welcome anywhere in the hospital.

Provided MC remains stable (I know, this is a HUGE prerequisite) it will ultimately be a choice between living as a family permanently separated or living as a family united-- albeit one that will endure the stress and anxiety of caring for a medically complex child 24 hours a day. We knew our decision weeks ago, and we remain confident that we are making the right one. Now let's just hope that MC is on board...

Below, a few of my favorite pictures from this week:
Princess decides that 2 spoons are more effective than 1. She has yet to meet a food she doesn't like.

A dad and his daughter.

It was like Christmas! Princess receives a package on the doorstep from her two incredibly stylish surro-blogging friends Eva and Rose

If asked to describe MC in one word, I would have to say cool. He is just such a cool dude (and he sure looks like it in this picture).

Transfer day-- laughing at all the "stuff" he has acquired. Thinking he may need a double wide in the near future. 
Blue velour for the occasion-- let the 9th Floor flirting begin!

Tuesday, October 23, 2012

Your Child Has Only 3 Months to Live

Imagine getting a phone call like this at 8 o'clock on a Wednesday night. Imagine a doctor, prefacing her statement with an apology that she doesn't mean to be blunt, and then ever so bluntly uttering those eight gutting words. Imagine that when you attempt to protest that your son is not, in fact, dying, that she assures you that yes he is because it's right there in his chart.

Imagine if somebody told you that your baby had only 3 months to live.

I do not know whether MC has only 3 months to live. I do not know whether he has 3 months or 3 years or 3 decades to live. I do not know what made that doctor's crystal ball so infinitely more powerful than my own, such that she was confident in predicting how long my child will live.

What I do know is that MC and Princess turned 7 months today.

I know that I celebrated today.

And I know that I celebrated yesterday. I know that I will again celebrate tomorrow and that I will continue to celebrate for all the days to come.

Because MC has taught me to do so.

No doubt there are times that I envy other mothers. Mothers whose biggest decisions revolve around home care versus day care, returning to work versus staying at home, store-bought versus homemade food-- mothers who make decisions that I will never have to make for MC.

Mothers who will never have to endure phone calls like the above, and as a result will blissfully parent under the premise that their children's lives will extend long beyond their own.

But I think that if they knew me, they would, indeed, envy me too.

Envy me because I can  remember the exact moment that each of my children experienced fresh air for the first (and in MC's case, the only) time.

Envy me because rather than stress over the planning of an elaborate baptism, I partook in the most enchanting spur of the moment hospital bedside ceremony, blessing one Superhero and a Princess to the sounds of iPad Hindi chants. 

Envy me because I bravely wake my daughter before I leave for the hospital each morning... just to see her smile. 

Envy me because I will never fret over the meeting of "milestones," as watching MC perform the simple act of breathing will be cause enough for celebration on any given day. 

Envy me because should life take one of my children sooner than seems fair, I will continue to live knowing that I have celebrated each and every second of every minute of every day that I was given with them.

Happy 7 Months to One Princess and a Superhero. 

A Mommy

Friday, October 19, 2012

A Broken Hot Water Heater Sort of Day

Our hot water heater broke yesterday.

I recall a time not too long ago when I would have considered this a BAD day. 

I would have griped about my cold shower, I would have panicked when I came home and realized that I had left Princess in a home that smelled of gas all day, Duane and I would have had a lengthy "discussion" about whether or not it was time to replace or repair, followed by another lengthy "discussion" about which unit we should purchase and the day would have ended with a "discussionless" night as everyone sulked about what a BAD day it had been.

Raising a medically complex child forever changes your perspective on life.

Broken hot water heaters become trivial maters-- along with broken washers, flat tires and bruised Momobiles resulting from trying to squeeze into a too small parking garage spot because you're anxious to get to your son who has just been transferred to the PICU-- even when they all occur in an exceptionally short period of time.

Quick cold showers translate into bonus morning time as well as delicious pumpkin pie fritattas. (Combine 4 eggs, 1/2 can pumpkin, 1/4 cup light whipping cream, 2 tsp cinnamon, 1 tsp vanilla extract, 1/4 cup sugar, 1 tsp molasses, pinch of salt and cook on the stovetop in an omelette pan.)

The word panic no longer exists in your vocabulary because you have watched your baby stop breathing in your arms and thus learned to stay calm under the most extreme conditions.

A home filled with gas becomes an opportunity for a an evening walk.
Daddy packs an emergency survival murse and Carlos takes cover under Princess' blanket. 
You forego wasting valuable couple time discussing an appliance purchase, as you frequently rely on your spouse to make solo life decisions for your child's health when time to consult is often impossible.

You celebrate the fact that an extra long day translates into extra family playtime (even if it is well past everyone's bedtime.)

Raising a medically complex child forever changes your perspective on life. 

Cheers to a broken hot water heater sort of weekend for all.

Monday, October 15, 2012

What Should I Bring for Baby Pick-Up in India?

and answers to the other most FAQs I receive by email can now be found on this page: FAQs for Delhi Bound IPs

I've been promising to add it for the past 3 months "just as soon I finish unpacking from India," but alas, it's beginning to look like that might never occur... so I went ahead and posted it anyways. I'll continue to update it as I continue to find random dirt concealed business cards emblazoned with Hindi-like characters in the strangest of places-- like Carlos' toy basket. Perhaps somebody's planning an emergency escape plan should His house get any more crowded.

Lucky for Carlos, however, any plans for an MC homecoming this week have been cancelled, as he unfortunately seems to be making himself at Home... in the PICU. 

Even more unfortunate is that for the first time in America, he's made his siPAP (close cousin of the C-PAP) debut-- none of which was caused by my Friday night snafu when I accidentally unplugged his oxygen with the intention of unplugging my laptop. (Yes, it's probably good that Mommy and Daddy have been given some additional time to master their Home Nursing skills.)

Anyways, with the PICU comes a 2 Visitor at a Time/No Princesses Rule, and since my parents were up for visiting on Sunday morning, we took the opportunity to take Princess to the pumpkin patch.

After agonizing for an hour over whether she would wear the super fun giant pumpkin costume that we inherited from my niece, we ultimately decided on "just a fall outfit," as Duane was concerned that the former screamed Pumpkin Patch Newbies.  

Not to worry, as I'm sure that even without the outfit it was readily apparent when I proceeded to snap 500+ photos of our little pumpkin "enthusiastically" posing in the bins.

Seriously, mom?

I'll just look distracted and pretend I'm not with them.
Maybe if I give 'em a smile we can put an end to this nonsense.
I swear I just met this lady.
Shows over people. It's time for a bottle.
With love from a Baltimore PICU,

Mommy, Princess and Master Cheeks 

Saturday, October 13, 2012

I Bet They Have Dodgeball in India.

I bet they have dodgeball and last place and teachers that are allowed to fail students when [gasp] they don't do their work.

India is a tough country. A true Darwinistic culture in every sense of the word (if that's even a word).

While there this summer, I often commented that I longed for a NICU scrapbooking club like my fellow American blogger whose triplets were born premature just a few weeks prior to our twins. In other words, I longed for the "softness" of America.

Since arriving home, I've yet to locate a scrapbooking club, but I have been inundated with other proverbial shoulders to cry on as a result of my new position as Mommy of a Sick Child. Palliative care teams, counselors, psychologists, clinical customer care reps, child life specialists, roaming mariachi clowns-- you name it and America's got it.

I am thankful for these people. I am thankful that America acknowledges the incredible stress and anxiety that results from parenting a medically complex child like MC. And I am thankful that when I need this type of support, it is always available to me.

But I am even more thankful that I began this journey in India.

I am thankful that I endured travel of 3-4 hours each day to sit in a windowless room in 115 degree heat. I am thankful that I learned to cope with not being able to hold MC for a majority of his first 5 months of life. I am thankful that I figured out a strategy to remain calm when my child turned blue in my arms and the nurses, who did not speak English, were unable to tell me what was going on.  I am thankful that I devised a method for putting on my bravest Skype face for friends and family on even the absolute worst of days.

I am thankful that India made me a stronger mom.

Because some days, as lovely as all those "Soft Care Specialists" are, some days,  it is necessary that I exist solely on this strength.

Some days... like today.

I got a call at 6:45 a.m. this morning that MC was being moved back to the PICU for respiratory distress. 

Considering the possibility that this is simply a reaction to Daddy's practicing of his Home Nursing skills last night following a discussion about bringing MC home. (Note the look of skepticism on the patient's face.)

Thursday, October 11, 2012

Bring on the Big Macs

MC's got a new tummy!

MC had a "good" morning prior to surgery. Everyone thoroughly appreciated his cooperation.
36 hours on the ventilator afterwards. Normally I do the day shift and Daddy takes the night, but I volunteered to do a double for the day-- as only one of us had NICU experience with this semi-scarier equipment.
Hey mom, get a shot of my nostrils! Notice anything different?
 MC says so long to the PICU and resumes his 9th Floor celebrity status. 

Monday, October 8, 2012

MC's Very Own Page

The past two weeks have not been pretty.

MC was originally scheduled for a Gastrostomy Tube and Nissen Fundoplication surgery September 28. Unfortunately, a week prior, he began having increased seizures which culminated in transfer from the rehab hospital to the ER and admission to the Peds Floor on September 26. Surgery was pushed back until October 2. That is until MC decided to play "unresponsive" for 48 hours, at which point surgery was cancelled again. He was then put back on the surgery schedule for October 4, but due to all his recent funny business, the docs decided to postpone until a bed in the PICU became available for recovery. What they did not count on, however, is that MC would beat them to it. On October 6, he was admitted to the PICU for prolonged seizures and resulting respiratory distress.

Fast forward to today, and I do believe that it would be fair to say that MC had A Good Day. As a result, we're scheduled for surgery tomorrow!

Moreover, as you can see from the above, MC's medical status tends to change, quite often, by the hour.

In order to balance keeping everyone informed without turning this blog into an online medical journal, I've created MC's Very Own Page where I'll be posting daily (or as close to daily as I can manage) updates on his medical status. 

Psheww, I promise this will be the only "informational" post ever. And now for the good stuff-- my favorite pics from this week.

I anticipate that PEOPLE magazine will be ringing this guy next year to do a cover shoot for their Most Beautiful People issue. I swear he is even more stunning in person. 
A Dad and His Son

A topless concert at Princess' Piano Bar. 

I broke down and bought a single stroller, as the double didn't look quite right with only one (human) passenger. Fortunately, our two (current) tenants approved of the new ride.

Sunday, October 7, 2012

I Love This Room

I love this room. 

I love that it reminds me of all that was good about India. 

I love that it is Scarlett and Hayden's room, and not the admittedly beautiful muraled baby room which came with the house... but was never really ours

I love that it reminds me of the unending support of friends from afar, many whom we have never met in person, but who have made us feel as if we've known them all our lives.

The beautiful Ganesh and Hamsa paintings were created by our talented friends Mike and Mike

 I love that it reminds me of the incredible spirituality that permeates every inch of India. 

I purchased the beads hanging on the paintings-- coral for Hayden and crystal for Scarlett-- in Rishikesh after a jeweler spent time analyzing their names. 

I love that it reminds me of our Svelte family and the unforgettable Rm 410, our home away from home, Summer 2012. 

I purchased the elephant tapestry at Delhi Haat
as it was the closest thing I could find to the ever popular Hotel Bedroom Painting (which I was sadly unable to fit into my suitcase). 

 I love that it reminds me of special trips taken with very special people. 

I purchased this rug at Village Textiles in Jaipur following a spontaneous tuk tuk tour of the city. 

I love that it reminds me of the incredible strength, determination and willpower that our Family of Four Five (sorry, Carlos) possesses.

Remember this poster?

 I love that everything in this room-- down to the tiniest of trinkets-- has its own unique story to tell. 

Tiny dolls from one of our favorite drivers, Hayden's cricket bat secured on mine and my British mate's 42nd tip to the mall, photos of our babies on their earliest days at Delhi New Born, curtains made in Jaipur, that Shiva deity purchased on our very first trip to India...

I love this room so much that we have decided to bring MC home to enjoy it once he gets discharged from the hospital-- rather than send him back to rehab-- because I know that he will love it too.