Today at the hospital

Was a long day.  Almost as long as this post.  (you've been warned)
(also, my apologies for the picture quality.  I left the camera home, so these are from my phone.)
It started bright and early.
Actually dark and early.  We were there before the staff that mans the front desk at Imaging was even there.
The bonus to that is that when you have the first (630am) appointment of the day, there is no waiting!  Well, except for the office staff to get there to get you all signed in.  But that's ok.

Aaron was a serious trooper and came with me.  He probably should have stayed home in bed since he had surgery 3 days ago and is in excrutiating pain.  Pain meds are not helping.  He's all sorts of uncomfortable right now.  Trying another new Rx for him today, hopefully we'll get some results so he can rest.  Poor guy.

After initially being told Sam would have to fast for 12 hours (really), we finally got his age cleared up and he was given the ok to nurse until 230am.  Alarm #1 went off at 200 so I could feed him.  The next alarm went off at 400 to get up and going.  Unfortunately there wasn't much sleep going on between 3 and 4, so I was up when that alarm went off.  Oh well.  Early bedtime tonight, right?

We were out the door by 5.

Once we got signed in there was only a few minutes of a wait before we went back to get things going.

Sam was a gem and slept the whole ride up and through most of the rest of the prep as well.

Poor Aaron tried to sleep through the prep too.

I think he caught a few minutes here and there.

He did have a weigh-in today; 10lbs 8oz.
He's becoming quite the chunky little boy.  I love it.

After getting him out of his cute jammies and into the hospital tee (no snaps, I can't believe I didn't think of that), we wrapped him up in blankets straight from the warmer and he zonked out again.

Between another warm blanket and his binky, he even slept through getting the IV.  It was great.

(notice his legs are sticking out straight.  Crazy kid.)

We got to walk him back to the machine, though we had to wait at the door at that point.

And then it was time for us to walk away for a while.

We hit the cafe for some deliciously fatty pastry.  There is very little that sugar won't help.

Before we knew it, time was up and we headed back to sedation recovery where Sam had just arrived.
It was a little odd to see him so very still.

It took about an hour before he started stirring, and another 30 minutes or so for him to start waking up, at which point I could attempt to feed him.

He did quite well coming out of the sedation, but nursing was interesting.  His mouth wouldn't quite cooperate at first, so it was a process to get him to latch (over and over and over again!), but he ended up eating quite well in the end, and with a ginormous burp that I swear shook the floor, he met all the requirements to be released.

And then it was off to neurosurgery.

First things first, head measurement.  Growing along steadily on the same growth curve.  Woo-hoo!
Check soft spots....looking good, no concerns.  Woo-hoo!
And then down to the business of pulling up the images and the radiology report.

Moment of truth.

While we found some things out today, there are still others that we don't know too much about.
Hydrocephalus is the reason we were seeing the neurosurgeon instead of a neurologist, because if we end up needing to have shunt surgery, he's the man for the job.  So that is his main focus when looking at everything going on in Sam's head.
Fabulous news on the hydro, everything seems to be staying steady.  No increase of pressure present, no increase of size of ventricles....everything is just kind of hanging out where it has been for the past two months.  Yes, there is still more fluid than there should be.  Yes, it is taking up precious space that would normally be filled with brain matter.  But his brain tissue isn't as compressed as it was prior to birth.  The Dr felt that if anything had changed, it looked to him as though the brain mass had increased.  That my friends is AMAZING!  The gray matter of Sam's brain looks great, though he has less white matter than one would normally have.  His (the dr's) opinion is that the reason he is lacking white matter is simply because the fluid is taking up space that would otherwise be occupied with white matter, so there just isn't room for it to be there.  As far as what that means for Sam in the future.....we don't know.

We all know the drill now, say it with me, "We'll just have to wait and see"....
That's ok, there is certainly room in my life to learn to be more patient.

Next follow up appointment-get this-NEXT YEAR!  Can you believe it?  How wonderful is that?
Dr suggested an appointment around 6 months to check his head size and make sure it is staying on the same growth curve, but our pediatrician is monitoring that anyway, so we will return when Sam is approaching a year old for another scan, either an MRI or CT.  One. Year. Old.  ONE YEAR OLD!!
Be still my heart!

As for the rest of the stuff going on in the noggin, there is much to learn.  The neurosurgeon was very up front about the fact that he really isn't terribly familiar with it all.  Since it is not something that would ever be operated on, it isn't something he works with.  He did go over the radiology report with us, and spent some time going over images and pointing things out for us, giving us his thoughts and speculation, but being very encouraging (and I think relieved) about us sending the scans to the National Holoprosencephaly Research Center for a good in-depth evaluation.

One very interesting thing we learned today is that things aren't exactly what they were thought to be from the fetal MRI we did.  We were told previously that Sam has no Corpus Callosum, but today's scan shows that he DOES.   It is very thin, but it is there!  As was determined by that first scan, he is missing his Septum Pellucidum.  His optic nerves look great, and he has olfactory tracts that look perfect as well.  This means good things for vision, and sense of smell-something that I have been told that kids with HPE frequently don't have.   There was something caught regarding his Cerebellum-a slight fusion at the top that hadn't been noticed before, and the Dr was surprised was caught, mentioning that it was so slight he would have missed it had he not read it was there and looked closely for it.  There were a few other things, I remember something about the Pituitary gland specifically, but I can't remember what.  I need to pull up the report and read over it again and take a few minutes more to digest and research the few things we didn't cover with the dr.

What the heck does all that mean?  I don't know.  I am hoping that the Research Center will be able to provide a nice in-depth "what to expect" for us, though it will take about 6-10 weeks to hear back from them, so I don't expect to hear anything for a while.
(running theme of learning patience anyone?)

Honestly, even when they can give us a general expectation guideline, it is only that.  If nothing else, we have learned over the past 7 weeks and 5 days that expectations don't dictate potential.

We never would have imagined that we would have a nearly two month old beautifully healthy boy who is smiling at us, and starting to vocalize and coo at us as well.

Life is good, Samuel is great.  I was so worried about him being sedated this morning, and he did better than we could have asked for.  Even his nurse commented "this could not have gone any better!".  He did not even need the full sedation dose to go out since he was nice and sleepy already.

Now it's time for me to stop worrying (as much) and take a (longer) break from scheduling dr appointments.  It's time to let Sam shine, and let him show us just how much he will be capable of.
I can't wait to see.....