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.)

Joy and Journals

A few people have asked me lately how I can remain so positive when it seems like there is so much stress going on.

Answer #1: Prayer.  It's simple ~ have a conversation with Heavenly Father.  You'll be surprised at what he has to say and what he has in store.

Answer #2: Read the Ensign.
A few weeks back, we had a lesson on the importance of the Ensign. 
I have been comforted in ways that I never thought possible through other's articles.

Answer #3: My Journal.  It's provided me with a way to get out what's in my head without having to worry about others' opinions.  I have a few things in the front of my journal: my patriarchal blessing, a letter from my Father in Law and a letter from my Mom that I got when I was a teenager at Youth Conference.  Also, a tithing envelope to remind me to keep myself prepared.   Click here for Pres. Eyring's talk about journals.

Answer #4:  Staying Positive:  We are given the right to view things as we wish.  There is something positive in everything that happens.  You just have to search for it.  Sometimes, you have to search for quite a bit just to get a glimpse.  Once you get used to it, that searching becomes a wonderful habit and then you end up with a "Pollyanna Complex" just like me.  Find Joy in YOUR Journey.

It's late.

Well, kind of.  I'm at the hospital and it's 10:10 pm.  I should be on my way home, but I'm finding it hard to stay away from Jellybean for very long.

There was some great news when I walked in the NICU today...  there was something different.  Then the nurse told me...

She had her feeding tube removed!  She's even cuter than before.

Fine, I'll head home.  See you tomorrow Olivia!

Pictures and tidbits

My friend, Whitney, came down to the NICU yesterday and took some beautiful pictures of our little Jellybean.  Here's the one she sent as a sneak preview!!!

Thank you so much for the photo shoot, it was so much fun working with you!  You're the best!

By the way, I have a lot of you, my dearest friends, asking what you can call our little girl.   Call her Olivia, call her Jellybean.  She's the same child either way and I've even added in "Squishyface" because I just want to squish her cheeks.   Don't feel bad if you just can't get past calling her "Jellybean", it's no different than people calling Hayden "Tater", "Tater Tot" or "Tate",  he answers to all names. 
But, I have found that by calling her Jellybean, the Drs, nurses, and all the other axillary people that are involved remember the best and don't have to refresh themselves to remember what's going on with her case.

Also, I know a lot of you are a little shy about asking questions.  Don't be.  I'm okay with answering them.  I know that you are asking because you care and I'll love you for that. 

If you call and I haven't called you back, I'm sorry.  You're not the only one.  I've been trying to spend as much time at the hospital as I can so that when I get home, I don't freak out with all the caretaking things she needs.  I'll call you when I get the chance.

Love you all!!

Today!

Everyday is a new day, and it usually has one or two improvements along the way.

While I was holding (and snuggling and slightly squishing) Olivia, the other nurse were in the area next to me getting out another baby's PICC line (a really long IV).

The baby (let's call her Eve) was screaming, wailing and thrashing around.  They kept calling in more nurses to hold Eve down.  I was wondering what was going on, but chose to just it and listen. 

Suddenly, I hear my nurse talking to them and she was talking about my little, calm child.  "I did this all by myself yesterday to Olivia, and she just looked at me with her big wide eyes and made squeaks as though she was talking to me.  It's so weird how two babies can be so vastly different"

Ahhhhhh... my baby's a calm soul.

Just wait until the other kids get a hold of her.