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.