Tuesday, October 4, 2011

This Is The Song That Never Ends


The answer is no.
Emily is not home yet.
They've told us Friday, but we won't believe them until Emily is actually in her car seat.

To add insult to injury, Emily has been grounded from her bottle.
Indefinitely.
She has a feeding tube again and it goes directly into her intestines.
No bottle and no milk in her tummy.
Rude.

We have an appointment early Wednesday morning with an ENT (Ear, Nose and Throat Specialist).
He will put a camera down Emily's nose and check things out.
Emily had a swallow study and she failed it, thus the feeding tube and ENT.
Are you wondering how you fail a swallow study?
Just swallow milk down your trachea instead of your esophagus.
You will fail...every single time.

One of these days the little miss is bound to catch a break.
I'm sure of it.
Kind of.

This is how sure of it I am.
Jason called me from the hospital and when I answered he asked, "Why don't you sound happy to talk to me?"
I thought about it and said, "Because whenever you call me from the hospital I think you're going to give me more bad news."

That's not very sure of anything is it?
I'll work on it.

Here's something else about Jason.
Hearing him cry from the bathroom made me think about it.
Every time he washes his hands he burns himself and yelps 'Ouch!' or 'Hot!'
And no matter how many times I remind him of the cold water tap, he still burns himself.
All I can do is laugh and roll my eyes.

So...
In response to the requests we've received, I've added a donation button to my blog.  It is linked directly to Emily's Heart Fund.
All I will say about it is this: I promise with all of my heart that every penny that is donated will go towards Emily's medical expenses.

Friends...you mean the world to me, and the love and support you have shown my family is overwhelming and humbling.

Thank you.

And when she wakes up the little miss will thank you too.


13 comments:

Kristin said...

I love that picture. She looks so peaceful and thoughtful. :)

{{{HUGS}}}

If you need anything else, just ask!!!

Kristyn Grace said...

Noelle, I have been reading your blog for a while now, ever since you started Dear Emily and I connected through that. I can only imagine the pain you feel every day knowing that your little baby is hurting. I don't have children and my heart hurts for your little one so I can only imagine your pain. Thank you for sharing your story. If it is not helping those going through the same thing, it is helping every one of your readers remember to be thankful every day for all the blessings, no matter how small.

Have hope because your little one is still fighting and will continue to fight as she has. Have hope because the tests she does fail do not mean there is nothing else the doctors can do for her. This will make her stronger and it will make your love for her stronger. It is making your love between you and your husband stronger and comfort you in the fact that the two of you can get through everything.

There are so many people out there thinking and praying for you. Try to remember that and let it comfort you.

Also, I have dealt with a lot of anxiety and catastrophic event worrying that had a one point become very debilitating. If you are ever interested in talking with me about my experiences with a therapist, please let me know. I'm sure that someone has suggested this already as something to consider but I just wanted to offer my experiences if you can benefit from them.

Bridget said...

Oh Noelle, she looks so peaceful and perfect, it's hard to even imagine fight she is fighting right now. We will pray harder. She needs a miracle and a break and I believe in miracles. XOXO

Elizabeth said...

Skipping over everything else and going straight to that super sweet photo of Emily at the bottom of your post! I LOVE that little fist under her chin. What a sweet girl!

Hang in there!

xo -E

wjmom said...

You don't need my comments, which are always the same, but I can't help it:

She's so beautiful!

Continuing to send love and prayers your way!

Lalis said...

I woke up around 7:50 am this morning and the first thing I thought about was Emily's ENT's appointment. I prayed specifically for her and that everything would go well.
I'm anxious to hear how it went. I do know I felt peace as I prayed. How grateful I am to know Heavenly Father is watching out for your baby girl.
Thank you for letting me hold her yesterday. It was like having a little piece of heaven in my arms. It meant so much to me!
I loved finally meeting you and talking to you. Also, this may sound weird but I couldn't help thinking how pretty you are. ;) Jason's a lucky dude. Heh heh!

Mom on a Line said...

I'm sorry to read that Emily needs a J-tube. I will keep you all in my thoughts and hope the docs find an answer to swallow difficulties.

Sending so many heart hugs your way.

Amanda said...

I just donated all I had left in paypal, not much but every bit helps! Prayers for your baby girl <333

Fullmer Family said...

Oh she's such a doll!! She looks so lovely and peaceful here. I'm so happy she'll get to go home soon. Prayers are still rolling from AK. :)

walden said...

She looks so much better! She looks like she's improving! I love to see that. Jane and I just prayed for little miss Emily and her mommy and daddy. You guys are inspiring, you know? Not that you want to be, probably, but it's a fabulous result and blessing for all of us as you deal with this situation. You're great. Love,

Alison

pauline said...

She's adorable! We are forever praying for her.

Stay strong!

le Chef said...

The best thing about a long, hard run is that you know at some point it has to end.
Small comfort today, so keep hope close for tomorrow. Where there is life there is hope. Where there is love, there is hope.
I still keep you in my prayers. I think I'm getting better at them, so they're bound to work any day now :)

I'm so glad you added that donation button, never feel bad about it, and get the info out as much as you can. You never know, but all miracles have a start, and they're usually pretty small in the beginning - sometimes you don't see them as miracles until they explode, but they still are what they are; start to finish.

Be at peace you two. I hope you're able to find yours; you have a wonderful life ahead of you.

TheBlogWriter8 said...

Oh! How I love this girl! Love her!