6 Months

Today is Evan's 6 month marker- my baby boy is 6 months old. To commemorate that, I'm showing pictures from when he was born, as well as recent photos

The day he was born, after surgery to put in silo

On the way to the O.R. - day he was born

Evan on 08/01/2011

Momma's first kiss to Evan- about 5 or 6 days after birth

After closure surgery 8/9

First time I held Evan- about 20 days after birth

After the first sponge bath Momma ever gave- cutie pie!

The first time Daddy held Evan- about 25 days after birth

Our move to Cook Children's NICU in September- settling in

At about 1 1/2 months old-

Just the other day- lookin' GOOD

After trach surgery

First BIG BOY bath- November

Sleeping today

Evan's "Do NOT Disturb" position

His chest X-Ray today- looking better!

Santa visited on Christmas

We are getting close!

Today I spoke with Evan's surgeon, and he thinks Evan's is healing AWESOME. So we're scheduling the minor surgery to place a g-button for either the end of next week, or the beginning of the week after.
We are also getting soooo close to weaning off the ventilator. He's on a pretty low setting- just 9 breaths per minute and about 22% oxygen. For those not well versed in ventilator-speak, "normal" room air has 21% oxygen, and he has been on as high as 40 breaths per minute.

He's doing really well with his therapy... Although he's making VEEEEEERY slow progress with the bottle.

I will be sure to update as soon as I have a date for the surgery.

Playtime and Evan's room

While I've got a moment (since my sweet pea is napping), I decided to update with more pictures of good times this past week, including play time and our progress decorating Evan's room.

No news so far on when we can expect the g-button to be placed. But I feel we can measure Evan's stay after the g-button to weeks rather than months.

But when I see my boy playing and laughing and having a good time discovering things.... Well, that's just awesome.

Bathtime

Bathtime for Evan is very involved and takes about an hour- if we schedule in time for play. But we've made it a nightly ritual to bathe him, do his dressing, trach tie change, and trach cares. Afterwards, it's cuddle time, and he usually falls asleep on me. Then it's time for the 9 pm feed, and I put him to bed. We soothe him after getting him in bed and try to get him back to sleep- how much he's napped during the day has a direct effect on this, however. Still, he's awfully sweet in the evenings..... Heck, he's sweet all the time, what am I saying? But I especially cherish the routine, because it's like a piece of home in such a sterile environment.

So how is Evan doing, anyway?

I've thought about doing a retrospective over the course of a few days, just to have a synopsis of the past 5 1/2 months. 
And I really want to do this, when I get the time. 
In the meantime, I'll just update Evan's current progress for those that have been following him lately.

Today, we will begin a different dressing for Evan's wound, since it has healed enough.  No more ace bandage!  Which is a big deal, because my little guy really loves being "naked".  When we unwrap him in the evenings for his bath, he loves getting his sides rubbed, and he pouts severely when we finish with the bath and re-wrap him. I will post a picture later showing how his wound looks lately.

We will be scheduling another surgery soon to place a g-button- he still has feeding issues orally, but we're hoping taking out the NG tube will help him overcome his oral aversion.

After that, it's all about weaning him off the LTV, otherwise known as the "home ventilator".
The pulmonologist really thinks that we're close to getting him off the ventilator entirely.

Evan's generally a happy baby these days, with lots of smiles when we play. His favorite games include Carl and I grabbing his tongue when he sticks it out, and playing on his piano playmat. For some reason, the tongue thing totally cracks Evan up, and he kicks and giggles (though we can't hear it)... Which of course gets US to laughing, which seems to crack Evan up more. I like it that he has a sense of humor after all he's been through.

Intros

Christmas- He was not really impressed

Chillin in his crib

All dressed up

"Hey World..... Are you ready for me yet?"

"What was THAT?"

Best present EVER

Okay, so this is my very first blog post about my sweet baby- Evan.  We've been posting his progress at http://www.caringbridge.org/visit/babystorey , but I've reached the limit for photos, and opted for something better, in those terms.   
So a quick introduction might be necessary-  Evan Lee Storey was born on July 31st, 2011 at 1:36 PM, 1 month before his due date. He had an omphalocele, containing his liver, and small and large intestines, which was ruptured at birth. He also has pulmonary hypertension, which has caused problems with his breathing. 

He was being helped by Cook Children's in Fort Worth, although initially he was at Harris Methodist, and they did a phenomenal job through the toughest times. We were able to get his organs back into his abdomen using the silo method, and obtained full closure on 8/8/2011. His wound opened up some, got infected, which did not help the breathing issues, and after 5 months, 17 days, here we are!  

Currently, he is in the Transitional Care Unit so that we can get weaned off the ventilator, and mom and dad can learn all about his tracheostomy.  Each day we see gradual progress, and are looking forward to the day we can bring him home.

I know all mothers a pretty proud of their children, but Evan is AWESOME- he's overcome so very much, and I feel the need to share his awesomeness with the entire world.  

This blog might have a lot of medical terms thrown in......  I'll do my best to clarify, and explain things as best I can.  After 5 1/2 months of being in the hospital with him, and doing the majority of his care, I'd like to think I've got a pretty good handle on medical terms and explanations.  

And if not, there's always Google.  :-)