Friday, August 31, 2012

How in the World Did I End Up Here: A Surrogacy in India Sequel

Yesterday, we received good news.

It's anticipated that next week MC will be transferred to an in-patient rehabilitation centre.

Good news, right?

Because of the holiday weekend, the hospital staff suggested that I immediately leave so that I could go and take a tour of the centre (about 20 minutes away). I called Duane, who was at work, and we made arrangements to meet on-site.

I arrived about a half hour early. I had only been at the hospital for less than an hour and, then, there I was at the centre.

I kept wondering, how in the world did I end up here? 

Shouldn't I be back in MC's room, working out his legs, as we contemplated who would be the next cohost on Live! With Kelly. I was anxious to get back to the 9th Floor.

I walked through the double doors of the centre and was greeted by a jovial security guard. I asked  him if we could start the tour a few minutes late. I explained that it was arranged last minute and that I was waiting on my husband.

No problem, he says. My wife recently asked me to take her somewhere she's never been before. I took her to the kitchen.

I thank him and turn my gaze towards the front door...

... still wondering, how in the world did I end up here?

I keep trying to lose weight, but it keeps finding me. I glance over at the guard and force a smile.

I return to staring at the door and begin to watch as child after child pours in. Some, at first glance, look identical to my little nieces and nephews. Racing steps ahead of their parents, they bound into the centre like a Category 5 hurricane. But it's then, that I notice, that most, if not all, are tethered to their caregivers by endless wires, monitors and bulky machines... all of which look completely out of place on their tiny little frames.

Life is like a box of chocolates, you never know what you're going to get. He's doing his best Forrest Gump impression and my mind immediately wanders to the scene where Forrest is at the doctor's getting fitted for his leg braces. I give a second forced smile which takes far more effort than the first.

Braces, walkers, wheelchairs. Children of all ages, walk, run, wheel and/or are carried through that door.

I find myself playing a game in my head. Will that be our Master Cheeks? Or maybe more like that one? Maybe a little like that one at first, but then as he gets older, much more like that one. But not that one, please. Please, not that one.

Sensing I'm about to cry, I walk through those doors for a bit of fresh air. A girl of about one is carried in by her father on my way out. Her mother trails with the obligatory oxygen. She smiles at me.

A smile. It's on my list of must-haves. So long as he can smile... 

 I enter the fresh air.

What, you didn't like that one? I wasn't even listening...

I breathe deeply, sitting smack in the sun on a hot brick wall. It dawns on me how little time I've spent outside hospital walls since arriving home. It reminds of my first "outside" experience "outside" of India... in the Austrian NICU garden.

A familiar feeling... how in the world did I end up here?

I look towards the parking lot and see a familiar face. Well, somewhat familiar. Given our alternating day/night shifts at the hospital, we're still trying to find time for that date night. (Scarlett included, of course.) I can tell my feelings are written all over my face. He puts his arm around me and we walk in together to begin the tour.

We pass room after room... full of sick kids. The centre is under construction, and yet, it's eerily quiet.

How in the world did we end up here?

I'm immediately anxious for the tour to end.

It's the oddest of feelings. I've spent approximately 142 days of the last 151 days in various hospitals in three different countries-- all of which have been filled with very sick children-- and it's rare that I've ever felt uncomfortable.

Why? Because they were hospitals. Where kids are supposed to go when they get sick. And then they go home. Because they get better.

This is not a hospital. And no kid is ever supposed to come here. They just end up here. Because they get sick. And even though they get better, they'll still always be sick. And even though they go home, they'll still always come back.

The tour ends and the guide asks if we have any questions. She can tell I'm uncomfortable/about to cry/close to throwing up/may very well pass out.

Suffocatingly uncomfortable.

It's the rooms, isn't? she asks. You must be used to private rooms. 

I laugh for the first time all day. Used to private rooms? I just spent the past 4 1/2 months in India, I tell her. No, I reassure her. It's most definitely not the rooms.

She raises her eyebrows. India? she begins. But then she stops. I know she's dying to ask it.

How in the world did you end up here?

And I'm glad, for once, that I don't have to tell the story... because, at that moment, it's a question I can't answer.

Saturday, August 25, 2012

Happy 5 Months (Only Two Days Late)

So here we are. 5 months old. And the blog post is only 2 days late. So overall, that means we're doing pretty good, right?

Unfortunately, the big Zero Five didn't exactly go down as planned. While I had already made it clear to Princess that birthdays in America are bit more, um, low key than birthdays in India, I had promised her a very special gift... which it seems we'll just have to reserve for next week.

Because, unfortunately, both my children were sick for their birthday.

Yep. Princess, too.

Maybe it was a sympathy cough for Master Cheeks (who now has both pneumonia and a respiratory flu)

Or maybe she just loves her super awesome pediatrician so much that she wanted to go back for a second visit this week

Or maybe it was all an elaborate get out of going to work with Daddy.
Apparently, Daddy did not get the memo that princesses do not do  work. 

Whatever the reason, the only result was that we did a little less celebrating and a little more snuggling... which is, of course, the best Parent present ever.

A few things I'd like to remember about our 5 month olders:


Weight: The bruiser of the two, Princess now weighs in at 12 lbs.
Favorite things: Mealtime, baths and, according to Daddy, watching Sportscenter. (I've yet to see evidence of the last one.)
Yes, we have a bathtub, but until I have time to put together that cute little pink bath chair Daddy bought, the sink will have to be sufficient!

Dislikes: Late meal service and hats.
Sometimes I sneak one on while she's sleeping.

Favorite Mommy moment: Seeing her together with her brother-- even if she did try to eat him. Already I can tell that she is going to be the best "big" sister ever and it makes me so happy that even at such a young age, MC already has a  built-in best friend

Master Cheeks

Weight: 7 1/2 lbs of PURE MUSCLE. I see a light weight boxer in our future.

Favorites: His mobile and Mommy's off-key version of "If You're Happy and You Know It." Nothing lights up this little guy's face like the above, so much that Daddy is recording it so that he has it on hand when visiting at night. Sadly, nobody will ever be able to imitate it in quite the same "perfect" pitch as myself.

Dislikes: Arm splints.

Favorite Mommy moment: When a floor nurse [who doesn't even have MC as a patient] stopped by his room to tell me that whenever she has a moment, she comes in to visit, sometimes just to stare at him, because he is such`an amazing kid. [Yeah, I think so too!]

Tuesday, August 21, 2012

All About Master Cheeks: The Good, The Bad & the Ugly

The Good
  • Testing has eliminated certain genetic syndromes as the cause of his seizures.
  • He has had 2 normal MRIs. 
  • We still don't know the cause of his seizures.
The Bad
  • He has had 2 abnormal EEGs. Upon admission to the second hospital in India, the doctors noticed that he was having seizures, put him on phenobarbital and performed an EEG. The EEG showed short burst suppression patterns. A second EEG was done last week, and it showed a "different" abnormal pattern. (Anything, however, is better than the burst suppression pattern, so technically, this bullet belongs under The Good.)
  • He still has seizures on phenobarbital. 
  • His upper body is overtoned and his lower body is undertoned. 
  • He is currently struggling with pneumonia. 
  • Oxygen requirements have increased and efforts to feed with a bottle have ceased.
  • Relocation to an in-patient rehab centre is on hold.
  • It will be a few weeks before other genetic and chromosomal testing results are available.
  • Even the neurology team at this infamous hospital is finding him to be a "complicated" kid.
  • We still don't know the cause of his seizures.
The Ugly
  • A test for RSV was done today, and until Master Cheeks kicks his infection, Mommy and Daddy must dress in The Ugly...

Saturday, August 18, 2012

The 9th Floor Was So Much More Fun

So aside from our corner suite and bottomless graham crackers and mocha fudge coffee and of course, our Donna, [for those who don't know know, a Donna is hospital fixture who has worked at the hospital since it broke ground 100+ years ago and whose main purpose in life is to take care of the mommies of sick children], the 9th floor is NOT the PICU... which is, unfortunately, where Master Cheeks decided to book his most recent weekend getaway.

And while Daddy thoroughly appreciated his efforts to secure a larger suite for the Ravens game opener, we really wish he had gone about it a different way.

Master Cheeks has pneumonia and is on 100% oxygen. Unfortunately, this seems to be the least of our worries. On Monday, we have a "family meeting" (both Carlos and Princess are still anxiously awaiting their invitation) to discuss Master Cheeks' diagnosis and prognosis following his marathon course of scans, tests, blood draws, spinal punctures etc... [all of which I should add that he endured with such awesomeness and spunk I was left, once again, in awe of this little guy's very big character].

In attendance will be members of Master Cheeks' neurology, genetics, pediatrics, respiratory, feeding, occupational therapy and physical therapy teams as well as a host of other fellows, residents, nurses, case managers and social workers.

I'd be lying if I said I wasn't scared. Hoping nobody minds if I invite our Donna, too...

Tuesday, August 14, 2012

44 Hours Later

One final buffet breakfast-- likely the last time I'll ever get excited over potato croquettes?

A farewell to our friends at NICU #2

Greetings to our amazing medical evacuation crew

All hooked up and ready to go

Princess' reaction to the news that we will finally be departing her empire

On board and ready to go

Still not speaking to me
Mommy decides parenting a princess isn't all that bad...

after arriving on a private jet...

and being whisked away to the VIP lounge.

Master Cheeks gets his own royal treatment while still on board the plane.
The only comment

made about this stop, was thank goodness the plane didn't break down here...
and that we ended up stranded in Austria, instead. 

Whisked away in an ambulance to an Austrian NICU. The med-evac nurse tells me she that in 15 years, it is only the 3rd time a plane has ever been damaged. I let her know that given the rarity of such occurrences, it would only be appropriate for it to happen to us. 

The Austrian NICU kindly gives Princess and myself a room, as I refuse to leave Master Cheeks alone in yet another NICU in another foreign country. Never has a pediatric hospital bed looked so inviting. Sadly, after 24 hours of straight sleep, Princess has other plans.  

Princess' first grass and fresh air experience. It is at this point that we begin to desperately miss home. When will the crew return?

So there's the guy responsible for my exile

Uh, mom, I'm feeling a little bit crowded in here. [First time they've been together since birth. Second time Mommy cries. The first was earlier in the morning when Mommy goes to get a cup of coffee after no sleep or caffeine for 2 days, finds out that nowhere in the hospital accepts credit cards, sadly realizes that Austrians have no use for Indian Rupees and has a total meltdown.]

Let's get this show on the road. Everyone is slowly losing it.

A new plane arrives to rescue the Princess. Note that this is technically a rescue operation for Master Cheeks, and yet, if you look carefully, you can see who seems to be getting all the attention on board. 
I will NEVER forget this cup of coffee (along with the Pepsi) and the 25 plus cookies consumed simultaneously.
Last stop! Finally starting to get excited!

New plane, new pilot... we are ready to go!
No words

Daddy and his boy

Master Cheeks gets settled in the final NICU of his Baby v. NICU worldwide tour. How cute are the beaming grandparents in the background?

Saturday, August 11, 2012

If You're Reading this Right Now: 132 Days in India

...chances are, we're on a plane H-O-M-E.

Of course, there's always a chance we could be sitting in traffic, stuck on the tarmac, or in a cab on our way back to the hotel to check back in (for the 7th time)-- none of which, at this point in our journey, would surprise me in the least.

But let's just assume that we are, indeed, on a plane, and that we are, indeed, headed H-O-M-E.

Other than that, I'm not sure what else to say. To attempt to sum up 132 days in India would be fruitless. Heck, one blog post is rarely sufficient to cover 132 seconds in India.

And to be honest, it's been a bit, well, anti-climatic. Over the past few weeks, I've conditioned myself to never excited about going home, as I've lost count by now of the number of times I've thought I'm hours away from hopping on a plane, only to find out that just about the only thing I'm hours away from is another breakfast of parantha and pickle. So, no, we will not excited until we are absolutely, positively, 100% H-O-M-E.

Approximately 48 hours ago, I traipsed back into the FRRO, seeking a somewhat indefinite extension of the babies' then expired visas, for an indefinite departure date on a nonexistent plane. I shoved four months worth of dirt and sparkle into five large suitcases, called a relocation company, handed over a wad of cash and said a little prayer that I would actually see my belongings again. I made my final walk to the hospital, and instead of handing out candy to the entourage of street kids that now join me for my daily trip, I ordered a round of chips from the corner stand for all. I went to Dunkin Donuts twice (as if this was one of the landmarks I needed to hit up before leaving) and explained that this would be my final "Indian" coffee. (Like reception, they just laughed and said they would see me tomorrow.) And I hastily drafted several thank you notes from Princess to her fan club, for the royal service she received over these past four plus months.

In sum, my babies' departure from India has been much like their entry into it. Sudden and unpredictable, rendering us both excited and terrified, and leaving me, Mommy, in a rare state of speechlessness. Our sincerest thank you to all who have supported us throughout this journey.

With love from somewhere high in the sky (hopefully),

Mommy, Princess & Master Cheeks

Wednesday, August 8, 2012

Thank You

Thank you

... to our clinic for creating a forum to assist in getting our miracles home
... to our incredible worldwide family for your extreme generosity
... to a select few who have so kindly shared inspiring stories about what it means to be or to have someone in their life who is Normal

Fortunately, this Club Infertility stuff, it comes with a lifetime membership. We know that sometime in the future we will have the opportunity to pay such generosity forward, and I can promise you that we will, indeed.

With love,
B, D, H & S

Tuesday, August 7, 2012

Still Normal: Delhi Day 128

I was in the print shop today, making copies of the all important FRRO documents in preparation for a second visa appointment when the time comes (am I the first in surrogacy history to actually go through this process twice?) when an employee asked if I would like some tea. It's a beautiful trait of India that wherever you are, no matter the time of day, the odds are in your favor that someone will offer you tea. And as I learned rather quickly, it's simply impolite to turn them down.

In response to my nod, the employee asked "Normal?"

I smiled. Having been in India for over four months, I knew what he meant by Normal. Tea. Steamed milk. A beautiful blend of spices. Served in a tiny china cup on an ornate tray. Two cubes of sugar on the side. During the middle of the afternoon. In the basement of a print shop.

Normal? Well, I suppose it all depends on who you ask.

Yesterday, I received news that no parent wants to hear.

I was told that Master Cheeks' testing came back Not Normal

I don't remember much about that conversation. I may have left halfway through... I may have collapsed into the security guard's chair as she ran to get me a paper cup of water... I may have called and woken my mom at 3 a.m.... and I may cried for the fifth time in four months on that long walk home-- though I'm not really sure since it was pouring down rain... stopping only for a small boy wearing nothing but a t-shirt, who smiled in his Normal as he motioned for that paper cup of water.

I struggled with how in the world I was going to tell Duane. How do you tell a father that his son could be Not Normal?

Fortunately, I realized that I didn't have to.

Because it dawned on me, that Hayden, regardless of what his tests indicate, is still going to be Normal for Hayden

Which is, of course, the only way that we would ever want him to be. 

We are cognizant, however, that in order to help Hayden be the best Hayden he can be, he is going to require some highly specialized care. We are incredibly fortunate to live within minutes of a world renowned hospital that can deliver such care, and we are working to get him transferred there as soon as humanly possible. We are simply overwhelmed by the generosity of our friends around the world who have assisted us with these efforts. Thank you to all, and we will continue to keep you posted.
With love from India,
Mommy, Princess and The Cheeks

Sunday, August 5, 2012

I Will Try Again Tomorrow: Delhi Day 126

My Indian anthem: "I will try again tomorrow." [And how funny is Princess' Thriller pose? I'm actually trying my best to keep her awake until we go visit Hayden so that she can nap in the waiting room, but as is clear from the picture, this Princess does what she wants when she wants.]
Likely the only child to ever ride in a carseat in a tuk tuk. We are loving that Hayden is now a mere 5 minute "solo" walk away, or same distance tuk tuk ride if I am visiting with my entourage.
Master Cheek's first day at his new crib. Poor guy was pretty sedated from his new anti-convulsion medicine...
... but fortunately, he seemed to be getting used to it today and was looking much more like his former silly self.
Feed me. Not surprisingly, the Princess loves her rice cereal.

Friday, August 3, 2012

So Close: Delhi Day 124

Exactly one week ago, I called Duane and uttered those three long awaited words:

We're Coming Home.

For the next 6 days, we worked both DST and EST, coordinating with India and the U.S. to ensure the safe arrival of Master Cheeks.

We secured him a bed in the NICU in one of the best hospitals in the world.

We packed (or at least started to until we ran out of suitcases)

We got the babies' exit visas

And, of course, we donned our best sparkle for a farewell dinner with our incredible family of IPs.

Only none of it mattered.

... because we're not coming home.

And while I'm not able to share much about anything at the moment, please know that we continue to appreciate the prayers and good wishes that we will somehow find a way to get these children home.

And in the meantime, enjoy the pictures...

Princess gifts The Cheeks with his very first Rakhi bracelet
We return to Bangla Sahib-- our favorite place to pray.
Shopping for rice cereal. (Princess does not eat processed food.)

Princess' first foray with the rice.

The Cheeks' first foray with clothing. 

Hard to believe he could get any cuter.

The Cheeks moves into Mommy and the Princess' neighborhood.