Just a few photos since I finally got my camera charged:) 

First Time eating Pizza:) and sporting her new little outfit from "aunt" Ali

The Back 

The Front (this one's going to hurt coming off - its all in her hair:( )

Eden and Josh having lunch... they always play games across the table... its quite funny... one day I'll get a video of it:)

 

Ooops...

So I promised a picture last night and I forgot:( I did take some pictures and was going to post them now, but the camera is dead... again... my fault, I think I left the camera on yesterday (shhh... don't tell Josh - I'll get in trouble!).   I still don't think I've caught up on my sleep.

Anyway... Its a gorgeous day, I'm sitting outside as I type. Eden's down for nap #2 and I'm thinking about a nap myself. Not much new to report in regards to her surgery... we go back next Wednesday for Dr. Fuchs to check her incision and remove her stitches. Then another MRI in 6 weeks to see how her body is doing keeping the fluid absorbed on its own. 

On a crafting note... I found this giveaway through my friend Melissa's Blog... The Benner Daily is giving away free fabric!!! I couldn't give up this chance to enter! Check it out by clicking here.

WE'RE HOME!

Sorry for the lack of post(s) yesterday. I was busy getting ready to take Eden home and then *oops* left my computer in my friends car after we got home. 

I don't think I'm the only one who was SO GLAD to be home... Eden played for quite a while on the floor by herself yesterday, just smiling and laughing... and then she made it most of the night without waking up . I gave her pain medication before she went to bed and once in the middle of the night and otherwise, she slept so soundly! I think we were both glad to be back in our own beds - what a difference that makes! 

I'm looking forward to a *lazy* day at home, catching up on laundry, cleaning, and playing... and I'm hoping to get a little sewing done too:) I've got a few projects I researched while at the hospital and I'm eager to get started. 

Well - I promise a new picture by the end of the day:) I must find a way to comb her hair first!

Steph

The Drain is OUT!

Dr. Fuchs came by this morning and gave me good news! Her ICPs were stable all night and he thinks that the high pressures yesterday were "faulty". Her MRI looked great and another doctor just came in to take the drain out.... Can I just take a minute to tell you know STRONG my little girl is:) The doctor pulled a tube out of her brain and stitched up her scalp and she didn't even cry  - just kept sucking away on that passy and looking at me... I love this kid!

They had to sedate her for the MRI - so I sense alot of sleeping going on today... probably for both of us... though I will say I did sleep well last night (thanks to those of you who prayed I would get some sleep!).  We had a wonderful nurse last night who was able to work in the dark and didn't have to change her diaper at 4am:) Maybe we'll get her back tonight! 

The plan is to go home tomorrow morning (we heard talks of today... but I don't forsee that happening).  I'm so ready to be home... 5 days has been long enough! I was thinking this morning of how ready I am to get out of here... and was quickly reminded of all my sweet patients on the bone marrow unit who spent months in this place:( I have a new appreciation for all those families!

Since so many of you that read our blog are still praying for us, I thought I'd take a minute to ask you to pray for my friend Heather... she's *overdue* with little Charlotte and I'd love for Charlotte to be born on my birthday! 

Its Late... I'm Tired... so just a little update to let you know we're still here...

at Duke that is. Its been a long day. No MRI - it was canceled because they were short staffed. We are planning to have it at 8:00 tomorrow morning. Since the night shift nurse came in and "re-zeroed" Eden's drain, her pressures have been back where they were this morning (prior to the day shift nurse messing with it). I'm convinced that her high pressures may have had something to do with the way the nurse had it set... I've got some questions for them tomorrow:)

This picture is mainly for Gigi, PopPop, Nana and Papa Joe - just to let you know all know that Edens been more like herself today:

A more positive post tomorrow... I promise... it is of course my birthday:) 

Monday Morning

Its monday morning... and it defintitely feels like a monday. The fact that I didn't sleep last night probably isn't helping my attitude. Eden is hanging in there. She had a great day yesterday with her drain clamped and her pressures had been stable. Dr. Fuchs came by this morning and said everything looked good and we would do an MRI to make sure the "inside" looked good too. About 2 hours after he came by though, Eden's pressures (in her brain) have been increasing. The nurse came in and opened the drain since they stayed increased for more than 5 minutes. They paged the doctor and one of the residents came in to check her out. She said she looked good and they reset her parameters and clamped the drain again. We're watching her closely today to see how her pressures do. If they keep going up with the drain clamped, the chances of Eden needing a shunt will increase. Just waiting now to her from Dr. Fuchs himself as to what he thinks.

On another note, it snowing here so Josh got out of school today and is here with us! YAH... I needed some relief today after a night of unneeded interruptions (diaper changes at 1am and 4am, an extra blood draw because the nurse "forgot a lab"). Off to *maybe* get some rest before the MRI... updates to follow

Steph

A long morning

Eden had a fairly good night - by that I mean I wasn't up all night with her... but don't be fooled, I don't think my sleep amounted to much. She woke up pretty uncomfortable however. I don't think she got much pain medicine last night since she and I were both sleeping and the pain medication was "scheduled" but "as needed". So, it took us a while this morning to get her pain under control. She's been asleep now for almost an hour - PRAISE THE LORD! She just can't seem to settle and wants me or Josh to be right by her face when she's awake.

I talked with her doctor this morning and her pressures were a little higher than he expected last night and her drain put out a littl more too so they are going to watch her today to see how she does with the drain clamped. If her pressures go up and stay up, we'll have to open the drain back up and will be here until her pressures stabilize. If they don't stabilize, we'll have to start talking about a shunt. PLEASE PRAY that her body is doing a good job of reabsorbing the fluid on its own and that her pressures stay where Dr. Fuchs wants them (right now they are). So far, all her cultures are negative and she has been without fever for 24 hours now. Thanks for your prayers for that and continue to pray that her body stays free of infection.

I've been reading some of Jerry Bridges' book, Trusting God while we've been here. I'm reminded of God's Soveriegnty and Goodness even in hard times.

"In Him we were also chosen, having been predestined according to the plan of Him who works out everything in conformity to His will" Ephesians 1:11