Back to church!

After a wild morning at home, we finally made it to church.

Wild Morning was "chaotic" to be nice about it.  Curt had to play for the choir, I was back at the organ, so we both needed to be there early.   I woke up at 7 am on the couch with a Jellybean in my lap.  It had been a rough night, she wouldn't sleep longer than 1 hour at a time.  Aaron was getting up, Alyssa was getting up, Hayden was getting up, Curt was NOT.   I jumped in the shower for 5 seconds and then went to get up the nearly 40 year old man.  He was just barely able to get himself out the door in time.  Thankfully, he was kind enough to ride his bike to the church and leave the car for me.  But, I was still at home getting myself and 3 kids ready (Aaron is so awesome.)

As I walked in the chapel at 8:45 to start the prelude, I was attacked and didn't have time for it!  I needed to find Curt NOW and he was putting on his tie.  He had been waiting for me to get there before he did and couldn't wait any longer.  Olivia was starting to cry and so I gave her to my friend, Shannon, and had her wait in a room off the foyer until 3 people that I set out to find Curt got him to the right room.

I got into the chapel and it was LOUD! I started playing and people still were talking loud.  So, I quit playing and people realized how irreverent they were.  One of my biggest pet peeves is when people talk loudly in the chapel... even in the building.  I talk loud, but I try not to in the church building.  This being said, let's move on.

I got the opening and sacrament songs done and went to sit down... kids were being great.

Curt played for the choir... kids are a little ancy, but still fine.

I get up to play the closing song and all H-E-double hockey sticks breaks loose.  Aaron started caveman-ing and Alyssa got upset because Aaron took something of hers, Hayden was oblivious.   I started playing the first verse and ntoice a commotion coming from the kids,made my first mistake.  Got to the second verse, and it was worse, I played even more mistakes.  Got through the third verse but only by totally ignoring the kids, and trusting that Curt can take care of it all.  Fourth verse, I was a wreck and couldn't focus.   After the closing prayer, I see what I believe to be a "Homer/Bart Simpson" moment where Curt is strangling Aaron.  I try not to laugh, but it was hard.  They spent some time together after the meeting and after church figuring out ways that this will never happen again (but it probably will).

Needless to say, we learned a great many things.

* Always separate the two older kids

* Curt needs to not strangle Aaron in front of others.

* Bring snacks to keep the Caveman away.

* Have Curt and the family sit where the are NOT in my peripheral vision.

* Set an alarm for Sunday morning.

*  Aaron and Curt riding bikes to church together will be a good thing, Curt will get to church on time!

*  The choir... is a whole other subject together.

*  Curt can play in front of others.

* There are a ton of people around; some to stall you, some to help you get where you need to be.

* I can go on auto-pilot and still play the organ; if I've practiced enough.

Update to Shunt Love

We went to the neurosurgeon yesterday. Olivia's shunt is working well!

She had a CT scan and she did so well.  The tech went to strap her in the papoose and was surprised that she didn't fight him on it.  She has to have her hands near her face to feel okay and the tech pt her arms down by her side.  I told him that he's going to have to strap her in well in order for her not to pull her hands out.  He didn't believe me.  About 2 minutes into the scans, her little fingers popped up over the edge of the cloth.  A minute later both of her hands were out and up by her cheeks. 
She also had her head strapped in and she wasn't fighting that either.  She cried a little when they started the scan, but that's because the machine was vibrating and she didn't like it. 

Everything turned out well though and Dr. Elton is awesome. We love his staff and would highly recommend him to anyone!  He's okay with me being the paranoid Mom. 

Shunt Love

or is it?

So, Olivia has a shunt in her brain.

I love that her brain is no longer pressurized.

I hate that she's lost that "I've got a big head, because I'm so smart" look.
(Seriously, it was SuperHero-ish)

She's been cranky the last few days.

Is it lack of sleep?

Overstimulation?

Shunt Failure?

We'll find out tomorrow.

All is calm.

Well, mostly calm.

We are hunkered in right now to let Jellybean grow.  She's starting to fill out a little and she's becoming more aware everyday.

Her face keeps changing.  One day she'll look like me, the next day will be my dad and then she'll look like Hayden.

I'm hoping to get some pictures posted soon, I just need to commandeer Curt's laptop to do it!

Life with Jellybean.

She's  a great little baby.  The nurses trained her well.

She's not a big cryer.  She sings in her sleep.  She sleeps really well because she's a preemie and everyday is a growing day.

We are trying to transition from bottle to nursing.  Finally, the pediatrician stepped in with a great way to get her off the bottle.  (That sounds so bad.)  She's doing much better and is getting a ton of feeding done.  We hope to be done with the "Honkers" (pump) soon.

Bladder usage is something that is a source of concern with Spina Bifida babies.  A lot of them need use of a catheter. She's surprised us all with this.  Right now, we have to cathe her once a day. She's emptying her bladder all the way.  We just need to get through the next week until her appt with the urologist.  We can't wait.  She may never have a problem with this ever again!

She's a poop-monster.  She does it often, loud and clear.

She's not on any medications!!!  This is so great!

Her incisions on her head, abdomen and spine are healing beautifully.  There is little care required with that. 

She has a little feeling in her left leg.  She twitches her left foot.  Her right side is a little different, there's not as much movement. She has hip flexion on both sides; chances are that she'll be able to walk with therapy.

Everyday is different and new.  Today was a "weaning off the bottle" day, tomorrow will be the same, and the day after until she gets that no bottles make mom a "happy cow".

I am so grateful for all of my family and friends who have helped, chatted with me and prayed for all of us.  The dinners have been awesome and I'm eager to get back to church and a new normal schedule.

The Jellybean has landed!

 We are in shock.  

At noon today, Dr. Ashish Patel (who is adorable by the way) came in to tell me that there's a chance that Olivia could maybe come home this weekend.  

(See the world weekend? Not hard to miss... easy to define.  Saturday, Sunday, one of the two.  It's important to know the phrase weekend.)

Step 1: Cheer

Step 2: PANIC!!!  

What the What?!?!  Are you serious?  You trust me to take her home? 

Then, as I was in panic mode, I get another call while at my friend, Emily's home and it's Dr. Patel again asking me if I want to take her home tonight.  It's Friday... not weekend. 

Ummmmmmm...  ummmmmm...  what?  SURE!!!!

Now that she's home?  I have no idea what to do.  Maybe buy the Good Dr. a dictionary?  (Weekend... Sheesh, Ashish.)

I promise...

* ...not to ignore my other kids and their needs.  If you see me out and about, and then I call you for help with something, chances are that I am stressed and overwhelmed and just needed a break (or just help).

* ...not to take on more than I can handle.  I will not offer to watch your kids until I feel stable.  If you ask and I tell you "no", don't get angry with me, I'm dealing with enough.  Don't try to guilt trip me into something for you, the answer won't change.  Guilt trips don't work on me, unless you are someone that at one point lived INSIDE my uterus.

* ...that my family will come first, and that includes the one in the hospital.  If I don't make it to an event that was planned 4 months ago, you need to be flexible.  I will try to make it, but if I don't ~ that's okay.  Someday, I'll be flexible for you.

* ...I will be the worst friend in existence.  If I don't ask how you are doing and only talk about Olivia, it's because that's where my mind is living right now.  It will pass... she won't be in the hospital forever.

* ...I won't call everyone back.  I will try, we'll see what the day brings.

* ...I will cry later.  I know I'm strong, but there will be moments of weakness where I will cry over the many feelings that I have.  I will cry over the sad things.  I will cry with joyful tears over accomplishments.  I will cry, I just need to be stable enough first.  Let me do it when I need to.

* ...I will throw a "three-year-old" sized temper tantrum: complete with foot-stomping, snapping, and anger if it's 6:00pm and I still haven't been down to the hospital to see my littlest daughter.

* ... nay, I SUPER PROMISE, that I'll be back soon.  Please leave your message at the sound of the beep  "beeeeeeeeeeeeeeeeeep"!!!

(Sorry guys, some of this needed to be said.  It doesn't apply to most, but you wouldn't believe some of the things that people have said to me.)