Little did I know...

I know it's been a while but it's tough saying the same thing over and over.  I don't want to be the chronic complainer but honestly what you read is pretty par for the course.  

I have had an interesting thought, however.

I've decided the dating I did in my 20's prepared me for motherhood.

Little did I know that I would be in the same situation I swore time and time again I'd never be in.  You know those guys we dated that were always so elusive.  The more we gave and clung, the further they pulled away and the worse they treated us.  We were always doing nice stuff for them and buying little presents so they'd know just how much we cared and how often we thought about them. 

Basically running them off! 

Well, if Noah were in his 30's I'd break up with him.  I swear I give and give and he just takes and takes. (okay, who are we kidding?  He'd break up with me because I'm "too needy" and a total doormat.  Have you seen those baby blues?)

You have to know I'm really laughing on the inside about my little comparison.  Too clever for my own good I tell you!  :)  I have to find humor where I can sometimes. 

Back to an actual update which is why you have tuned in anyway.

Noah has been having really bad seizures lately.  They make him howl (not sure if he's in pain or just terrified) and come fast and are wicked.  We've had to resort to using rescue valum a couple of times (it's scary to use because it makes him SO comatose). I've talked to our doc and we've increased one of his meds hoping it will curb this behavior STAT!  

I'm experimenting with feeds (always) to find what will work for him.  Some days I just throw up (no pun intended) my arms and just hope he's getting enough.  I'm tired of always being upset about it and poor Hanna just tucks tail and runs out of the room the second he starts coughing.  (He's got the whole family on high alert!)  

So, some things are a little better and some things are a little worse.  

We go to CHOP on Monday to meet with the Keto Team to make sure we are still go for October 14th.  :)  

As always, please keep Noah in your thoughts and prayers.  

...but mine's broken!

So you ask how much can one person complain? 

Enough already!  

That's the nice thing about a blog.  It's pretty one sided.  No one to say "buck up! It could be worse"  (well, not out loud anyway).                                                                                                      

Buyer beware! 

No puppies or rainbows here today.

I have this new fear.  Like I really needed another.  But I fear I've become this mother who can't see the truth about her child.  That parent we all make faces behind their backs after they've told you how "gifted" their child is or how "talented" they are. 

Yeah right you idiot!  Go on believing that one and I'll show you that pot of gold at the end of the next rainbow and those jeans don't make your butt look fat!

(I tried to warn you)

You have to understand that Noah isn't getting better.  It's breaking my ever loving heart. There's no sign of recognition, grabbing of fingers or toys, smiling, cooing, reaching, rolling (or even a pathetic attempt).  There's nothing.  Just a blank stare.  A painful, horrifying, alarming, unemotional blank stare.  God what I'd give for just a hint that he was in there.  I think I see it occasionally but I'm beginning to think I want it so badly I make it up in my head.   

So, I've become THAT parent.  Who so stupidly believes that one day I'm going to wake up to a child that finally shows a sign of love.  A sign that he's processing something. Anything.  But as the days and nights go by I have to wonder if it's ever going to happen.  Will he ever know me?  Will he ever know how much I love him?  

I try to believe I love enough for the both of us and someday it'll click.  

Yesterday was just tough.  Noah doesn't want to eat (he eats but he can't keep it down).  He actually spit up 10 oz yesterday!  Argh!  (He only gets 24 1/2 oz per day)  He had a few seizures that just went on and on and on.  I had the rescue valum out and was so close to using it.  Such a judgement call...I hate it.  So between changing my clothes, his clothes, and bed clothes multiple times I tried to clean up a little.   Somedays it's just futile to even try to do anything else but count seizures, feed and re-feed that little boy!  AND he needs a bath! Didn't get to that either. 

Here's hoping today is easier for him.  

Happy Birthday to Daddy!

Hope all my LC friends are enjoying the wine fest!  Wish I was there with you...

"Ya take the good, ya take the bad, ya take them both...

There should be musical notes coming off my computer as the "Facts of Life" theme song plays in my head.  

I should be really excited.  I should be jumping up and down.  But you have to realize what happens today may not happen again for a long long time.  

So, here's the news:

Today Noah ate. Really ate.  

A whole Tbsp. of cereal and his formula.  

I'm wowed!  This is a big deal for us!

But I feel nervous and this is why:

We had Noah's yearly evaluation for Early Intervention today.  They assess him and determine how delayed he is.  As we are answering questions about his behavior, I'm realizing  there are things Noah did that he doesn't do anymore.  He used to hold up his head, push up when on his belly, cry, and smile.  He doesn't really do any of that anymore.  So, I guess I'm a little less excitable than I used to be because who knows if it'll last.  

Sheer pessimism!  

Seizures will do that to a girl (or a boy).  It's been a bad day of seizures.  Lots of long ones.

Many causing tears and cries I cannot console no matter what I do.  It's painful to watch.

Yes folks, today the glass is half empty.  

We'll hope tomorrow the glass is full!  :)

Do I punch you or hug you?

That is a question I asked Noah's surgeon yesterday.  

We followed his advice and that is why we are where we are today.  This man told me if my baby was important to me I'd move to Philly and if not, the baby wouldn't survive. When he said this to me a little over a year ago I was devastated.  Then I got mad.  Then I got determined.  Then we moved.  We moved to PA two days later.  Hell yes! this baby was/is the most important thing in my life (and his father's life but this is MY blog not Todd's)!  

We love Noah's surgeon.  He saved Noah's life.  He also thinks we are pretty amazing which is hard for me to wrap my brain around.  This man is a fetal surgeon, chief of surgery, THE man.  He thinks I'm amazing??  He is also funny and kind.  And he gave me a new found strength without even knowing it.  

I realized Noah doesn't get to see the best of me and Todd.  We were at our best in Colorado when we met.  Footloose and fancy free!  We were happy and unattached and  life was pretty easy.  Living the dream in the mountains, hanging out with friends, working hard and playing harder.   Ahhh, the good ol' days. 

It's not fair to Noah.  He needs to see us laugh, smile, play, and love.  Not stress, cry, and struggle.  I want Noah to know us the way we used to be.  I think he'd like it.  I think he'd like us.  

My new promise to Noah:  He gets the best of me.  He gets to see me take heartbreak, frustration, and fear with grace.  He gets to see me laugh and smile.  He gets to see me be nicer to daddy and watch us love each other more.  This journey occasionally makes us forget how we got here and what brought us together.  It's not an easy road but we need to remember.  It's time we become a family who is happier more often than sad.  He deserves that (Noah and daddy!).  So do I.   

Two steps back...

I remember thinking the NICU was torture.  88 days, 87 nights.

The doctors coming by each morning to "judge" the progress of my baby.  Deciding which support to keep, take away, what new meds to try, decide if he's gaining weight adequately  (Oh, the pressure to gain weight!).  Watching Noah in an isolette and asking permission to touch him or hold him.  Watching him hooked up to monitors, IVs coming off his feet and hands, tubes in his nose and mouth, and surgery after surgery.  Always checking with someone else before I changed his diaper.  Always on someone else's schedule with baths.  As a matter of fact we were always on someone else's schedule for everything!  

I couldn't wait to get him home and not have an audience.  I was going to pick him up whenever I wanted, play with him, cuddle him, and feed him on OUR SCHEDULE.  

We are home and for that I am eternally grateful.  

Looking back I never thought the NICU would be the easy part.

I just thought it'd get easier when we got home.  It's not really.  I can't grab Noah anytime and play with him or cuddle him.  When you pick him up you either cause a seizure or cause him to spit-up.  (Noah doesn't just spit-up like regular kids.  Noah SPITS-UP!)

Noah eats about 3 1/2 oz per feed.  Noah spits up about 3 oz every time I feed him.  When this happens I have to rush and go get more formula and try again.  If I manage to get the feed in him I have to be very careful not to move him for at least 15 minutes after he finishes.  Then, ever so carefully, I put him down.  See, he needs to lay very still for about an hour after that.  Noah also eats every 2 1/2 hours, which doesn't leave very much room for much else.  

So you pick him up and he doesn't lose his meal.  Now you have to worry about the seizure you just caused.  Often when I move him or try to play with him it'll cause a seizure.  Watching my kid have a seizure anywhere from 2 minutes to 1 hour IS torture.  Absolute torture for both of us.  It makes him cry, jerk uncontrollably, and then when you think it's finally finished, he spits-up.  WTF!  

I know I'm being a drama queen.  Home is a MILLION times better than the NICU.  I just had a different picture in my head of how our life would be once we left.  It was a cute little life with a sweet baby being cared for by his very grateful mother and watched over by his sweet little black dog.  His dad would go to a job he loved and come home to a house full of love and smiles. PT and OT would come over to help him catch up and thrive.  He would eat great and get so big.  It was a life without the constant struggle....  

The life we have is just not the way I pictured it and I have to let it go.  It's just not that easy to let go.....

It was such a nice picture.

Reinforcements are coming!

 Tomorrow Todd flies to KS to meet up with Memaw and bring her to me!!!  I haven't seen my parents since June.  They haven't seen Noah since his seizures started.  Boy are they in for a surprise.  I don't think you can appreciate just how rotten this is until you see it first hand.  

As for Noah...

Reflux is back with a vengeance!  

Still seizing. 

Ouch!

Well we heard back from Dr L.  He seems to think Noah would be an unlikely candidate for surgery since he has many (yes, I said many) sites of injury on his brain.  

I must have missed that interpretation of his brain MRI.  I know I'd remember "many sites of injury".  How could I have missed that? Ask anyone who knows me.  I don't miss things like that.  I keep a journal of every seizure and what it looks like.  I keep track of every milliliter that goes into his mouth and even the milliliters that come back up.  I am so meticulous about record keeping.  How did I miss that? Did I intentionally block out that sentence because it is so horrible? 

 Because there is more than one site causing seizures, its removal may give rise to other places starting.  In a nutshell, I'm devastated.  So much for a day without tears.  

I'm afraid to ask...

One of the hardest things about this whole situation is knowing if you are doing the right thing.  There's a fine line between too aggressive and not aggressive enough in this instance.  There's been a question on my mind I was afraid to ask but today I asked.  The question:  Should we start thinking about the surgery option?  Two things worry me here (only two?  who am I kidding? Two BIG concerns).  One is that Noah wouldn't be a candidate for surgery.  Yes, I would like to have the option if we needed for a surgeon to cut open Noah's head and remove the part of his brain causing seizures.  I am nervous that the keto diet won't work.  It's not always successful and if it fails then there really aren't any more options.  If meds don't work and the diet fails where are you supposed to turn?  These seizures have Noah's development at a complete stand still AFTER he went backwards quite a bit.  He lost what skills he had prior to their onset.  I'm getting nervous and desperate.  When will they stop?  Secondly and most obviously, I worry about brain surgery or any surgery for that matter.  Not something I just want to jump into again (surgery that is). So I posed the question to Dr L this morning via email.  Should we start to consider pre-surgery testing to find out if Noah is a candidate?  I'll let you know what he says...