Friday, November 30, 2012

Sleeping With a New Man

He's cuter, younger, and best of all, requires considerably less bed space than the old one...
My new roomie, MC
It's been 10 days since MC moved into his new home, and I do believe that he has finally "settled" in. True to his character, he spent the first few days charming the staff with his dashing good looks before proving to his new friends all that he is capable of-- middle of the night respiratory distress, inexplicable desats, unpredictable neurological activity-- the usual unusual MCisms.
MC's custom built house to destimulate him when he's not feeling well. 
The physical act of leaving the hospital (a mere 10 minutes away) was much harder than I  had anticipated. What I'd failed to realize is that the hospital had, unknowingly, become our H-O-M-E... because the hospital staff had become our family.

On the verge of tears already, I was unable to say a proper goodbye to anyone.

Fortunately, since arriving at our new H-O-M-E, we have not had to swap one family for the next. Our hospital family has made a point of letting us know that we are not far from their thoughts. Phone calls, visits and the most delicious Thanksgiving feast delivered to our door have provided us with much comfort as we stumble along yet another road less traveled.
Post-turkey twin nap
The anxiety of it all hit me the night before our move as I surrealy drug out The Suitcase that's been around the world. The Box #1 label etched in chalk across its front pocket was still fresh from my most recent trip.

I must have stared at that Suitcase for hours.

I was nowhere closer to knowing what to pack for an indefinite stay in Baltimore with my child in a hospice home than I had been to knowing what to pack for an indefinite stay in New Delhi with both my children in the NICU or a subsequent indefinite departure from New Delhi to America with my children aboard a med-evac plane. 

It seems that the author of What to Expect the First Year forgot to add a chapter on any of the above...

Unlike last time, I road in the ambulance. Not because I thought MC was scared, but rather, because I knew I was. 

I know that previously I had said that there was no right decision. I was wrong. The move was right, and MC reminds us of this every single day.

We've said it over and over again, MC is very very happy here. For the first time ever, he sleeps at night. He gains weight, and most importantly, he just looks so incredibly comfortable.

For the time being, I'm living with MC, and Princess and Daddy are holding down the fort at home. I receive plenty of reassuring videos like the one below, letting me know that everyone is "secure," and that, most importantly, in the midst of all this turmoil, Thursday night football watching has not been sacrificed.

We are so thankful to have found MC a new H-O-M-E where we can continue to Celebrate every day.
Happy 8 months to our Princess and MC.

Tuesday, November 20, 2012

7 Months

26 days, 4 hours, 3 minutes later... Hayden goes "home" from the hospital.


we are celebrating


Friday, November 16, 2012

We are Not the Nordstroms Family

This past week, I've come across several facebook postings applauding this ad:

I thought a lot about that Nordstroms Family  as we sat in our hospital discharge meeting yesterday. As I mentioned last post, Our Family has made the difficult decision to discharge MC to a pediatric hospice home.

It's impossible to put into words how traumatic a decision this was-- and will continue to be for the rest of our lives-- other than to say that we are not the Nordstroms Family. 

While the Nordstroms Family has apparently been gifted with both Time and Celebration, Our Family has not. 

Our Family has been instructed that we must choose between the two, and that while under no circumstances can we have both, there is a possibility that should we choose one, we could end up with neither.

I've been told many times that there is no wrong answer, but, in fact, it would be far more fitting to say that there is no right answer.

I have been told that we could choose Time, and be given a greater possibility of being present for future holidays to come, however, should we choose Time, we will not be allowed to celebrate. We will not be allowed to be together as a family. We will not be allowed to exist in a comforting environment. We will not be allowed to Live, even though we are present. I have also been told that should we choose Time, this does not mean that we will be given it.

I have been told, that, in the alternative, we could choose to Celebrate. With this decision, we could be together as family, we could exist in a comforting environment and we could not only be present for each other, but we could in fact Live. If, however, we choose to Celebrate, we must agree to relinquish our Time. 

Last week we made the decision to Celebrate. Yesterday we necessarily confirmed that decision by putting it into writing. Tomorrow I will put up our Christmas tree. On Monday we will move MC to his new home. 

I love Our Family and I wouldn't trade it for the world, but it's days like Today that I am left wondering what life would have been like... if only we'd gotten to be the Nordstroms. 

Saturday, November 10, 2012

The Other "H" Word

It's been over 7 months now that we've been focused on getting our SuperHero H-O-M-E. Because for the past 7 months, our little family has agreed that H-O-M-E is the best place for MC.

On Wednesday, I arrived at the hospital early. I'd had a rough sleep after a late night call relaying the news that the nurses had had to "bag" MC-- my second to least favorite medical term. (My first being habitual aborter.)

So I pick him up to have a chat before Live with Kelly comes on, and less than five minutes later, his oxygen starts to drop. I'm watching his pulse-ox and when it hits 60-- and keeps right on going-- I reach for the nurse call button. At the same time, 4 nurses and a physician rush in to  bag him, suction him and administer the non-rebreather.

As I'm holding his little hand and furiously singing round after round of If You're Happy and You Know It, it dawns on me that there isn't a chance in hell I'm going to be able to do this at home. Maybe the singing part, and maybe one of the above rescue measures... but certainly not all three. 

And as for when I'm not home? Well, that's the thing about MC being home. I'll need to always be at home. Which though incredibly stressful, is a sacrifice I was willing to make for him, and even more so, for me.

Because I desperately need our family to be together. 

Yesterday, the hospital allowed Princess to make a visit so that her and MC could have professional photos taken by an incredibly generous company which donates its time for kids like MC.

Dr. Princess attempts a crib hanging rescue to break her brother out of this place.

Who knew? Princess LOVES the camera. She was a total ham and had the entire crew laughing as she struck pose after pose.

At this point the camera guy asks if "maybe the other little guy would like to get in some pictures too?" (We never broke it to Princess that, technically, the shoot had been arranged for him.)

Such a good sport. MC patiently waits as his sister snaps "just a few more shots." 

Best friends...

who eat other's shoes.

It was the first time Princess and MC had been together in over a month, and it was, easily, the best day I've had since they were born. A fierce reminder of the joy that accompanies having my family together. 
See how happy I am???

Unfortunately, this oxygen dipping stuff is far from a rare occasion. In fact, on average, MC ends up in the PICU due to respiratory distress approximately every 6 days.

Which means that sadly, H-O-M-E, may not be a safest place for MC.

He cannot, however, live at the hospital, and I do not feel that sending him back to the rehabilitation centre is in the best interest of anyone. Princess would not be allowed to visit which means that our family would continue to operate on a 2 man basis at all times, and as I mentioned before, it is a Holland based centre. We do not live in Holland, and to force MC and our family to live abroad, when our needs our becoming increasingly more distinct would add significant stress to our already on-edge lives.

Today, we went and visited a beautiful H-O-M-E. It is not the house that we live in, but MC can still have his own beautiful room, our entire family can be together whenever we like, and most importantly, with round the clock care by the most caring and friendly staff we've ever met, we have the comfort of knowing that MC will always be safe.

Today, we went and visited a pediatric H-O-S-P-I-C-E facility. It was a scary step. But the more I thought about it, the more I realized that, once again, it's just a name for what I already knew. 

I already knew that I want MC to be in a safe and loving environment. I already knew that I want our entire family to be able to be together as often as we like. I already knew that our family needs to be "living" in a country with others who can understand our unique family needs. And I already knew, that, above all, I want MC to live a comfortable and peaceful life... which I know he will do in this H-O-M-E.

Monday, November 5, 2012

So Long as He is Happy

It's 10 p.m.... Do you know where your children are?

Well it didn't take a phone call from the hospital to answer that one. The running joke on the 9th Floor-- it's ok, with a kid like MC we're allowed to joke about such things-- is that he thinks he's got a weekend home in the PICU. In fact, this past Friday marks his 5th Friday night PICU transfer.

And while it obviously means that he did not spend his very first weekend at H-O-M-E, it's probably for the best, as Princess took the time to prep for his arrival by marking her territory with her own baby germs.

All in all, not our best week. 2 sick children, 2 exhausted parents and another awkward holiday celebrated with a family apart.

We set Princess up at the door to hand out candy, however, she was far more interested in eating the bowl.
Beautiful Tigger No. 1

Beautiful Tigger No. 2
While I do my best to maintain a positive aura, this past week made it near impossible. MC's seizures were living up to their "intractable" nature, and regardless of how many sedatives we administered, we just couldn't make him comfortable.

From the day he was born I have always told MC, every day, just how proud of him I am for working so very very hard.

It's only natural. As parents, we encourage our children to work hard, to never give up, to try, try, try again if at first they don't succeed.

But along with the desire to see our children succeed is an underlying will that they find happiness. Because for most, the two go hand in hand-- work hard to achieve success and you will, indeed, find happiness.

Unfortunately, every day is a constant reminder that MC is not "most."

With this past week came the dreadful realization that for MC, there may come a point in time when working hard no longer brings him happiness. 

Today, just like every other day, I told MC that I am so very very proud of him for working so hard.

But, today, for the first time, I added something else.

Today, I told MC that should life ever get too difficult, should he no longer have the energy to keep trying, should he decide that all the things that once brought him joy in life are no longer bringing him peace, that I will no longer ask him to work so hard, that I will always love him, and that, most importantly, I will still be so very very proud of him... just so long as he is happy.