Wednesday, December 7, 2011

The Surgery Date Has Been Changed

Would you feel betrayed if I told you that sometimes I post things on Facebook before I post them on my blog?

Emily's surgery is now scheduled for Monday.
If you only pray once a week, let's make Monday the day you do okay?

Speaking of Emily (I know, I know, when do I ever speak of anything else?) ...
We have needed to replace the tape holding Emily's feeding tube in place for a couple of days now.
Jason and I have avoided doing it...mostly because we're chickens.

Emily could hate a lot of things about her life: needles, IVs, x-rays, diaper get the idea.
Out of all of her options, the only thing she does hate is the minute anything or anyone even thinks about getting close to her nose.
It's so sad.  Her whole little body just shakes and goes crazy.  She screams and turns red and purple and chokes on her tears and we have to turn her oxygen up, etc. etc.  It's miserable for all of us.

Tonight we decided to wait until she was asleep before we attempted to change the tape.
Our great plan lasted all of seventeen seconds.
We had too much old tape to remove and the little lady caught on to our antics.

See?  Too much tape.
We're justified though...pulling the feeding tube out is not our best plan.  Ever.
Once Emily was fully awake it was a disaster.
She cried.
And cried.
And then screamed.

By the time we were done we had managed to keep the feeding tube in place which is nigh unto a miracle, and Emily was worn right out.
Our secret hope is that the next time Emily comes home it will be without the blankety blank blank blank feeding tube.

I had a story to tell you but I simply can't keep my eyes open another second.
Too bad for you.
I'll try to remember to tell it to you tomorrow.

PS.  Go other read the sweetest letter Emily recently got in the mail.


TortugaRachel said...

If that's her only "hate" in the world, it's proof you have done a fantastic job. And besides, if you had to have that blankety blank thing, wouldn't you be wary of people near your nose? Hehe!

Keep on praying and know that we all love you and your awesometastic little family!

Venassa said...

I will be thinking of you guys all day Monday and praying like crazy!
Good luck little Elimy!

Today's Gift said...

Prayers for Elimy on Monday! I love the way her eyes shine in the photo you posted. She's just so cute.

Of One Heart said...

You three have my prayers. Will remember without fail. Can I fill up the blankety blank blanks for you? Because I can. Grr!

Elizabeth said...

One good thing about moving the surgery up is that it will be over sooner. I'm really sorry, though, that she has to have surgery at all. I'll be praying for you all.

xo -E

Kim said...

Emily (and family) will be showered with prayers on Monday.

Poor Emily and the tape, I wish there was an easy way to get that off without her knowing. :( I dont like getting band aids ripped off, I can only imagine how that feels.

I jumped over to your other blog and I love the hat on Emily- she looks beautiful! The flower is supposed to be transferrable from the hat to the head band as well, so whatever works best for her!

So I got to the end of the blog post on her page and noticed something interesting. Look at the time you posted it, and Look at this old post of mine:

Peace Of Mind said...

oh my gosh your blog is so sweet and so is your girl!!! Your family is in my prays I'm a new blogger just stopping by to say hello..

Shan said...

Monday is going to be a beautiful day. One of my other Internet-based friends is having her daughter that day, and Elimy is having her heart fixed. I'm kind of excited (for it all to be over, and to read about all the good news).

My heart to all of yours, I'll be thinking of you.

Beth Zimmerman said...

I love you, Noelle! You are doing all of this hard stuff with so much faith and grace ... and honesty and openness! YOU are a blessing!

Now come be my FB friend so I don't miss anything! :)