Sunday, December 19, 2010

So what does it all mean?

Since we got the news on Sam and I've been practically shouting it from the rooftops, I've had a lot of questions about what that means and what is going on now.
For those of you wondering or wanting more info, hopefully this will help.

The biggest question that I've been asked is if this means he "got better".
Well, not so much.  Holoprosencephaly is not something you get better from.  It's not a sickness that goes away.  HPE is a malformation in the development of the brain.  A baby's brain starts its formation very early on in gestation; it separates into the two lobes when one is about 5 or 6 weeks pregnant.  HPE-the incomplete separation of the two lobes of the brain-happens then, very early on before many women even know they are pregnant.  "Getting better" from HPE would be like being born with a malformed limb and suddenly having it "get better" and be normal.
I know.

So what happened here?  I'm not about to try to explain it.  Were all the different drs who reviewed two different MRIs and multiple ultrasounds wrong after all those months?  Sure that's possible.  Was the HPE really there and somehow now through the miraculous grace of God it's not?  Also possible.  Have I any logical explanation as to any of this?  No.
And I'm totally ok with that.  I don't need one.
The beautiful little boy snoozing on my lap is more than enough for me.
I have had experiences over the past year that can only be described as miracles, and I'm not the least bit ashamed to say that.  God is good.  So very very good.

I have to be honest, I do feel a sense of guilt.  That amongst those who I have connected with over the past months that live in the HPE world and worry over their children each and every day, I should be able to step out of that circle.  Why do we get a reprieve?  Why are they left to face the overwhelming challenges related to this condition and we are not?
It is similar to the sense of guilt that came when Samuel was born alive....when he breathed on his own, ate well, was healthy.....others I met during my pregnancy did not get that happy ending.  One woman who was expecting a baby with the same challenges Sam was diagnosed with was due in February...she lost her little angel girl a couple of weeks ago.  I have no doubt she begged for the same opportunity I did-to have her baby live, to be strong and do well.....why she was not allowed that's hard to think about.

So the current diagnosis?  The hydrocephalus of course, which seems to be fairly stable for now.  His head is still big comparative to the rest of him-80th percentile, while the rest of him sits around 25th-but that is pretty consistent, as at two months he was measuring 75th percentile if I remember correctly.  Bigger, but not a huge jump, so that's good.  He is missing his septum pellucidum-and with the location of where that usually is, it may affect hormone production, so there are some concerns there.  Lab work should help us be able to monitor that for the most part.  Biggest concern is immune system function, but so far so good, so we keep our fingers crossed and continue to pray.  The MRI he had in September also added Rhombencephalosynapsis to the list, which is a fusing of the cerebellum.  With this being a fairly rare diagnosis, there isn't much info available out there on that.  So we start the same process we did with the HPE-sending scans off to researchers, searching out others with the RS diagnosis.

Still likely challenges, but so many that we were banking on removed.

My thoughts have been wandering to the experiences of this past year lately, as last week (Dec 14th specifically-yes, I remember these things) marked one year from when we found out we were expecting our little 8 ball.  Ironically on that night this year we were in the exact same place we were when I shared the news with Aaron;  in the office, working, watching old episodes of Friends.  (See??  It ALWAYS comes back to Friends! ha!)

Also, this past week Sam turned 19wks old.  Last time I counted his age in weeks and he hit 19wks, it was the week this all really started.  19 weeks pregnant.  The first perinatology appointment.  The amniocentesis.  The ultrasound pictures of that little head filled with a black void, fluid invading all the space that should have been brain tissue....that tissue compressed into a thin line around the inside of his skull.  The grim prognosis.  The offer to terminate "the pregnancy".  It makes me wonder how many times people have taken a dr up on that offer, when their ending could have turned out like ours, worlds better than anyone possibly could have imagined.  That's a sobering thought.

Lots running through my mind lately, which seems appropriate I suppose.  Reflecting on the birth of my little baby boy, as we reflect on the birth of another baby all those years ago.....
Christmas seems to take on a new dimension each year as I get older.  I suppose growing up does that to you.  This year, I find myself more aware, more appreciative, more in awe.

It is wonderful.



Unknown said...

I would not feel the least bit guilty. Sam is a blessing and if his place in life is a miracle, so be it!

Rheanna said...

It's awesome to take a little time and enjoy our miracles that I think come more often than we even realize! Don't feel guilty-your family is such a blessing-just do some snuggling with Sam for me :o)

Kelsey said...

I love his smiling, gackling goose face! LOVE HIM!
He is the best miracle ever.

XLMIC said...

Leave the guilt behind. It serves no purpose. You are such a thoughtful and kind person... your empathic nature truly needs no guilt to bog it down. Keep on sharing the joy, Catey. We are all given a path (I believe, anyway). For each of us, our path teaches us what we need to learn. The miracle of Sam is YOUR path... and his.

Unknown said...

Hi there ive just found your blog. I read rhombencephalosynapsis was diagnosed. Are you part of facebook group for it?

Unknown said...

Hi there ive just found your blog. I read rhombencephalosynapsis was diagnosed. Are you part of facebook group for it?