I'll be honest.  I was pretty skeptical.  My husband has been known to come up with some crazy plans.  And I really didn't want to jump on some fad weight loss program that wasn't actually healthy.

Last week we had our first appointment at the new hospital.  Special thanks to our emergency last minute babysitter who met us at the hospital after a midnight text from me.  Because I have the bestest friends in the whole wild world!

We met with a nurse and a doctor who explained the program we will be part of.

Um.  Amazing!

Let's just pretend they sat me down and hooked me up to a mind reading machine.  Then they custom designed a program around me.

That's pretty much how it felt.  I'm sure it's how it feels to every woman going through it.  Because that is really what it is.  Let's figure out exactly what kind of care and treatment a woman carrying a high risk baby would want and then provide exactly that!  What a novel concept!!

First of all they are a referral center only.  They only provide care for women with babies who have some kind of high risk diagnosis.  Which means they are entirely equipped to handle care of high risk babies.  They also have actual experience with Trisomy 13 babies.

They are experienced and therefore know exactly how to react.  They know how to speak to us without saying the wrong things or avoiding the subject.  They are kind and compassionate but at the same time they are able to share information without watering down the facts.

At one point my husband asked what the doctor's experience was with the babies they had delivered who had Trisomy 13.  How long they had lived.  Because as he said, it's one thing to look at a bunch of statistics. It's another to talk to someone with actual experience.  The doctor immediately responded, "Oh, you really don't want to ask that question."  Then he stopped himself.  "Of course what I mean is, you do need to ask that question.  It's just not the answer you would want to hear."  He said that in his experience they usually make it anywhere from an hour or two to a few days.  It is pretty much unheard of for them to leave the hospital.

This is something we knew.  But again, it's one thing to see the statistics and another to talk to someone with actual experience.

But he went on to say that nothing is impossible and that is why they have to be prepared for anything.  (Thank you, this is what I have been saying.)  They have to be equipped to meet the baby's needs whatever they might be.  If that means going home, however statistically unlikely that might be, they are prepared for that.  He said they recently had a baby born with such a severe diagnosis, statistically he had almost a 0% chance of survival, even for a few minutes.  He said that baby went home.  As of our conversation, on day 20, that baby was still living.  The fact is that each baby has to be treated individually.  He went on to say they treat the babies the exact same way they would treat an adult.  (Wait, like real people?!)

Now wait just a minute.  You aren't getting excited yet are you?  Because there is so much more!

Today we had an appointment with a Neonatologist.  I have been looking forward to this appointment for weeks with a mixture of excitement, nervousness, anxiety and various other emotions.  To me this was one of our most important meetings.  A what to really expect kind of meeting.  I went in with a long list of questions swirling in my head.

What kind of equipment would he be hooked up to?  How would that affect holding him?  How would that affect my children holding him?  How would that affect his Baptism which we want to have at birth?  When/if he came home what should we expect/plan for regarding his care.  Etc. Etc. Etc.

Those questions evaporated within about the first thirty seconds.

Our meeting started with the doctor asking me what I knew about our son's diagnosis.

I told him that I know he has Trisomy 13.  I know he has a bilateral cleft lip and pallet.  I know he has 2 holes in his heart. (VSD)  I know he has brain "abnormalities" typical of a Trisomy 13 baby.  I know that babies born with Trisomy 13 typically (and when I say typically I mean pretty much always) have breathing difficulties due to Apnea.  I also know that there is a very low survival rate.

He asked me what I was expecting.

I told him that while I am very aware that the survival rate is low and the chances of being able even do anything to save or extend his life were slim, I wanted to do everything in our power if the opportunity presented itself.

I was met with a blank stare.

Then he basically told us that they don't really do any kind of intervention with a Trisomy 13 baby.

I'll be honest, I was a bit fearful of that response.  I did worry that I would be presented with arguments on why intervention was a bad idea.  At that point I figured we would engage in some kind of dialogue about the different types of interventions, pros and cons and in the end we would have to make specific decisions on what types of interventions we wanted to insist on.

Instead I heard this.

"We aren't equipped for any kind of interventions.  If you wanted to do that you would have to deliver at a different hospital."

He basically said that they are equipped to handle premature babies but that is about the extent.

My husband asked for some clarification regarding what they were not equipped to do with a Trisomy 13 baby.

He started listing examples of things they wouldn't be able to do.  Like surgeries.  For example if the baby needed heart surgery they wouldn't be able to perform it at that hospital.

I pointed out that we had already met with a fetal cardiologist who told us that heart surgery wouldn't be performed at birth for a VSD on any infant.  She also pointed out that Trisomy 13 babies don't die of heart failure they die of respiratory failure because of the Apnea.  The brain simply does not send the signal to breath.  She also specifically stated that the hospital we have been planning on delivering at is "more than equipped to handle the needs of a Trisomy 13 baby."  (My husband at the time told me he got the vibe of "since there isn't anything we can do anyway" but I didn't pick up on that at time time.  Now I fear he might have been right.)

The response to that was basically, yes that's correct but if the baby did have to be put on any kind of breathing assistance we aren't really equipped to do that and then send them home.  For example if the baby needed to go home with a c-pap machine we wouldn't be able to provide one.

He also brought up feeding tubes and said again that wouldn't be something they could provide for at home care.

A pretty much exact quote.

"If you were planning on actually taking the baby home, we wouldn't be equipped for that."

In other words, we are only equipped if the baby doesn't survive.

The Peanut.
He is the king of fit pitchers.  When he really gets going he will screech louder than any horror movie victim.  He can go for hours and never tire.  When he was still a tiny lil guy he would sometimes fight bedtime so hard that he would still be screaming 4 hours after he was put in bed.  I would think, surely he will pass out from sheer exhaustion at any moment.  No.  Never.  It was enough to drive me over the edge.  I would literally have to force myself to stay away from him because I was seeing red and there was no telling what I might do.  Somehow we both lived to tell the tale.  He has outgrown his fits for the most part.  Sometimes we still see glimpses of the little Hulk but they are pretty rare now.  And they never last longer than about twenty minutes or so!

The Princess.
She tries to throw little tantrums sometimes.  Something upsets her and she drops down to the floor crying.  She always does the little, peer out to see if anyone is watching her, maneuver.  Unfortunately for her, her older brother ruined me.  When she lets out her tiny squeals, that normally last for all of two and a half minutes, I can't help myself.  I laugh.  I try not to let her see it.  But it's so darn funny.  Like that little display is going to budge me!  I have lived through WAY worse.  When I send her to her room to cry it out she is usually done before she makes it to the room.

All this has me wondering.

Me.
When I pitch my fits, does God see red?  Does He throw His hands up in exasperation that I never learn?  Or does He laugh at me?

I like to think he laughs at me.  After all, He is infinitely more patient that I could ever be.  And I sure do need that patience.

Hopefully, as I have gotten older and wiser, my fits are less like my son's and more like my daughter's.  Because, in all honesty, I know better.

When something doesn't go according to MY plans, I know that I should put my trust in Him.  He knows what's going on.  He has a better plan than mine ever could be.  Like I said, I KNOW all that.  I'm just not always happy about it.

Recently, when things didn't go according to my plans, I managed not to throw a monster fit.  I refrained from shaking my fists at the heavens.  I even admitted that God probably knew what he was doing.  Didn't mean I liked it.  Oh, I pouted.  I whined.  "This better be good!"  I sulkily warned Him.

If you are still reading this after that title you may consider yourself warned.  Read at your own risk!

You guys know those pregnant women who tell stories about their easy pregnancies and painless childbirths?  The ones who gain approximately 10 whole pounds their entire pregnancy and it is all in a cute little basketball shape on the front of their tummies.  They talk about "almost" having to resort to buying maternity clothes.  Labor lasted about 20 minutes and in one tiny push their perfect baby, who was born sleeping through the night by the way, came into the world.  Despite the fact that they were entirely un-medicated they amazingly felt no pain whatsoever.  The second the baby was born they sprang from their bed fully recovered and already back to their pre-baby size and shape.

You know.  The women that make you want to vomit and scream liar right in their faces.

Speaking of vomiting...

"These are the veins.  They are for you to have blood."

"And this is the heart.  It's so... for you to love."

So, last week I was super busy with all the packing, and driving, and visiting my parents for three days, and driving back home, and the unpacking the incident with the pants etc.

This week is when I am supposed to be catching up on my blogging, and blog reading, and tweeting, and facebooking, and cleaning the house, because next week my parents are visiting, and staying at our house for a week.

Here is a list of my progress thus far:

1. Write a list of my progress thus far.  Check!
2. I'll finish this later . . .

Of course, today I was very busy with a dentist's appointment that took a whole hour all day long and left me a bit lazy totally exhausted.  To top it all off the Peanut also had a dentist appointment at the same time.

My little guy.  My baby boy.  No, this wasn't his first dentist appointment.  However, this is the first time he has done it all by himself.  My big boy.

There I was all laid out in the chair with teeth scraping and polishing and checking.  He was sitting quietly in the corner swinging his legs being the perfect angel that he somehow is incapable of being at church . . . ahem.

Then I heard his name called and they took him far far away.  All the way over into the next station.  With a whole half wall separating us.  My big little guy.

And I heard him happily chatter away as he was picking his flavor of tooth polish. (Strawberry because his favorite color is red.)  Heard him talk about how he brushes his teeth every day and night and mama brushes her teeth too.  We've trained him well raised a good truth telling boy there.

He happily opened his mouth wide.  No complaints, no fear.

For some reason my teeth took a bit longer to clean than his did . . . ahem.  He returned and sat back in his chair happily looking at his new pencil and sharpener he picked out of the treat box.

My all grown up still so tiny big little guy who can now have his teeth cleaned at the dentist without any hand holding or back patting.

In December the Princess has her first dentist appointment.  Gulp.

They grow so fast.

Wake up people!

The Zombie Apocalypse is not coming.  That's ridiculous.  You guys have been watching way too many B movies on late night television.

The Zombie Apocalypse is already here!!!

Don't believe me?

Check this out.

My current challenge is to try to do more cooking.  I am trying to eat healthier and provide my kids with healthier options.  This is a big challenge in a family full of picky eaters.  I am also not the worlds greatest chef despite the claim of my 4 year old.  I am trying to get away from my dependence on convenience foods.  An added bonus will be all the money we save in the process.