A Shout out to Brian

Joel with Dr. Brian Boville, 6/2010

When we go up to Tacoma for appointments, I'm fine.  We get in there, we do our stuff, and we get out.  I drive the same way home each time.  And each time, like clockwork, I get a golfball sized lump in my throat that I have to fight until we get to I-5.  We've been home now for over three months.  We're happy (most days, :) and each day that we have appointments for Joel we're receiving good news.  The reason for the lump is pure emotion surrounding MBCH.  Pure Sadness.  Pure hope.  Pure love.  Pure joy.  Pure, uninterrupted time we spent with our savior.  When I think about, talk to, or see the people I became so close to during our time in the Mary Bridge PICU, I am reminded of this.  We had lots of emotion when we were here.

This post is for you.  For you, because you intersected our lives during the very most vulnerable moments.  For you, because God specifically created you to save children's lives.  I've never seen a person with more pure passion for their work.  You scooped up my baby like you would your own.  You thought up "cool" ideas of things for us to do as a family when Adam & I got the kids for a week, and we so desperately needed a 'staycation'.  You have as much excitement over Joel's achievements as we do, and I think part of that was that you were there for the worst.  When I stumbled across this photo tonight, I got that lump again.  Whether it was by choice or circumstance, I am so thankful that our paths crossed.  Thank you for being who God created you to be, and a light in our lives.  You inspire many.  From Joel & I. :)

I've read my last post a few times, over and over debating whether I should delete it or not...it's horribly negative, and whiney.  I can't delete it.  I have a child with cords, and we are going through a lot of stress whether we think we're dealing with it, whether we don't have enough sleep to process it, or whether we can't give up the reins to the person we know can handle it all for us.  I'm going to have bad days.  I'm going to be sad, and angry, and so happy that I'm bouncing out of my skin.  That's what life is all about, and I've got to document this.  It's a memory.

Full of it.

Yep, I'm full of it.  Anger.  Ugly, ugly anger.  Mostly due to lack of sleep & communication with our nursing company.  After receiving 2 hours notice of three unexpected understaffed nights in a row, I thought sleeping it off this afternoon would help, but it hasn't.  I'm having a hard time getting over unprofessionalism, and all sorts of other things seem to be creeping in as well.  The no-sleep/night shift thing really isn't so bad in itself.  I'm angry that I had to send Mia up to Tacoma with my aunt.  I miss her.  I hate knowing that because our nursing company didn't fill these shifts, I am left "half-drunk" (that's what I compare sleep deprivation to) unable to care for Mia....Connor's a little more independant & doesn't try to burn down the house at the drop of a hat.  Either way, I've morphed into a terribly unfit wife and mother.  Can't cook, can't clean, can't sympathize....I'm downright awful every way you look at it. 

I'm angry that I have other people taking care of my baby.  Please don't get me wrong when I say that every single nurse we have is a blessing.  They are.  I miss being the only person (besides Adam, of course) with opinions about 'what's going on with him', or when we should feed him, or what he should wear.  I want to hold my child in my underwear at 2am in privacy, or without someone reporting to me every five minutes about Joel's last spit-up.  I want to be in a bad mood without feeling like I'm causing a scene.  I want to have sex with my husband without someone sitting downstairs, awake.

I'm angry that I've needed support in one way or another....or all of the above and more....for the last six months.  I don't want to need help.  I want to be helping.  I don't want to depend on other people for me to make it through my day. 

I'm angry for being angry.  I want, I want, I want, me, me, me.  Mad, mad, mad.
Are you reading all of this garbage???  I've tried sleeping it off.  I've tried praying it off.  I've tried "positiving my negatives."  Maybe you could pray too.

Our Cloud Has a Silver Lining

I'm sure you've read my billions of 2am posts on facebook the last month, and I kind of apologize....I use facebook to help me stay awake at night.  Adam and I have been without a night nurse two nights a week for the last month, and we've been doing our best to split the shifts and attempt at being normal people during the day.  You see, nightshift wouldn't be so bad if we were able to sleep during the day....unfortunately, there are other kiddos calling our names when it's light out.  :)  It's been tough.  It seems as though when we finally get back to normal, we're back at Sunday night again.  I've turned into a complete zombie, and I can't remember anything, or carry on a normal conversation without wondering, "Is my sleep deprivation showing?  Do they know?"  LOL
Well, it appears as though that time (at least temporarily or partially) is coming to an end!  PSA has hired 3 new nurses.  The first, is a nurse we had in the Mary Bridge PICU and LOVE LOVE LOVE.  She is taking every other Sun/Mon, while the other nurse is taking the remainder.  The third nurse will be our backup.  I'm SO HAPPY!!!!!  And even though night shifts are a complete pain in the butt sometimes, I've been making a list of reasons to be thankful for our lack of nurses:

#1:  We are at home.  With our baby, who is alive.
#2:  My laundry is getting done & kitchen is clean....at least twice a week ;)
#3:  I can finish an entire pot of coffee without a child interrupting me.
#4:  I've finished a series of 15 books.
#5:  I can listen to Joel sleep.  I love hearing the sound of his ventilator.

Still, I'm happy to be trading night shift for sleep.  Mommies need sleep. 

Joel had a cardiologist appt on Weds.  We were given the ok today for him to discontinue his Diuril...(YAY another med!!!)...and soon we'll be scheduling for him to get his portacath out.  Once that happens, Joel will no longer be needing his blood thinners.  !!!!!  No more shots!  No more ports!  No more baseball sized hematomas!!!  Heck yes!!   We are absolutely thrilled about this.  I was a bit nervous at first when it clotted, but Stefanelli didn't seem worried at all, and neither was Ricker.  Two meds down, and that will leave us with 2 of the 14 that we came home on.  Praise God!!!

Also, our house in Oregon sold today :)

Num-nums

Another first today. Feeding from a spoon! We mixed some applesauce with his Elecare feeding today, and it was....well, a first. That's about it. We wanted it to stay short & ending positive. I think he liked the taste of it, but wasn't sure quite what to do once he realized it was staying on his tongue. His gag reflex is pretty extreme....and he choked around the 4th bite, but hey, you gotta start somewhere, right? I think he did a great job!

Of course, he wanted to help....because he's a big boy now, and that's what big boys do.

And these are a few of his favorite things...

Joel's really getting into the whole "baby" thing...

Joel loves:

Pulling hair.
His mommy.
Playing with toys.
Putting toys in his mouth.
Chewing on his hands. All day.
Being tickled.
Being held....vertical. He's a big boy now, and big boys hold their heads up.
Sitting in his boppy.
Putting his hands in YOUR mouth.
Going on walks. We walk. He falls asleep :)

....and here are two more pics....these are from yesterday, taken by Ruthie Lampien. Thanks Ruth, for bringing your camera and documenting this great day for us! XO!!