Wednesday, November 16, 2011

Remind Me To Tell You A Story About Jason


That little miss of ours...
If it's not one thing it's another with her.

Today she can't keep her oxygen saturations where they need to be.
For someone with a healthy heart, normal is the high 90s.
For Emily, normal is anywhere between 75 and 85.
They don't like her higher or lower than that.
When she sleeps at night she drops down into the 60s.

The nurses try to avoid giving oxygen to Emily.
And it's not for the reason you might think.
They all know that Emily's daddy gets annoyed.
Not with the oxygen, but with the stickers that hold the oxygen cannula in place.
In fact, I think it says somewhere in Elimy's chart 'If you have to use oxygen, remove the stickers before Dad gets here for the day.'

The lower oxygen levels are most likely an indication that the little miss is outgrowing the shunt that was put in to bypass her pulmonary artery until she was big enough to have surgery to repair it.

Here's another piece to Emily's puzzle.
The formula Emily is getting is diluted so that her gut can tolerate it.
In order for Emily to get the calories she needs to gain weight she would have to have something like 
36 mLs of formula an hour.
But that amount of liquid would cause her heart to work too hard, and her lungs would be flooded.

The plan, as of today (and keep in mind the plan changes pretty much every day) is to get Emily to 26 on her feeds, making sure she can tolerate them, and then to send her home.

Don't get too excited.
It's only temporary.
Emily has an infection that is commonly found in kids who have had long-term hospital stays.
Emily's surgeon feels that Emily will have a better chance of recovering from the infection at home.
Once she has recovered and her body is free of any and all bacteria, they will operate.
The time frame I heard today is 2 weeks.

Our hope...our wish...our goal...our prayer...is to have Emily's surgery and then to have her home by Christmas.
It's a long shot and we know it.

On the chance that you think it's mean and cruel to operate on our little miss during the holidays...
It's actually a blessing, and something we asked for, knowing that Emily is okay to have her surgery now.
Plain and simple?
Our insurance starts over again January 1st, and having to meet our deductible twice in four months?
Ouch.
Double ouch.

By tomorrow the plan could be entirely different.

Would you like to see the trend we're noticing?



Oh my honk she's cute.

Thanks for loving my baby girl...


17 comments:

Of One Heart said...

This little ball of gorgeousness is hugging life and tackling it all head-on; so it seems to me. She makes me melt. Aww!

The Cookie Corner said...

She is oh so cute!!! LOVE the sprawled out arms!!!

Kim said...

What a precious little girl! I hope that your wish to have her back home for Christmas comes true, and I am right here wishing and praying with you. I hope you get a get break on all levels, including the financial aspect, I know how dreadful medical bills can be. No fun. xoxoxox

Jen said...

What a sweetie! Hoping she's well enough to have surgery and can recover at home for Christmas!

Mom Platt said...

Just want you to know that your own mother is so very proud of her beautiful daughter - who has grown into one of the most amazing women. Thank you for being YOU. Mom

Kim Molnar said...

Noelle, she is just precious! I pray that her infection heals and she is strong enough to have her surgery and be home with you for Christmas. What a present that would be!

Heather said...

I love the flail!!
I just want to squeeze her. Please squeeze her for me!!

Jaime said...

She is so adorable!!!!! I just wanted to tell you that...one more time. :)

Lalis said...

Starfish baby!!!! :)

I know I always say this but, I'm still praying. Emily is always in my mind and heart. She has become my living testament of God's miracles. I will forever love her!

TortugaRachel said...

She looks like she's challenging the world. "here I am, I can take you!"

And yes, she is absolutely adorable! I just wanna pick her up and hug her!

Jilly Bean said...

She is beautiful!

pauline said...

What an angel! I love love these pictures. Always praying.

I too hope she'll have her surgery and be well enough to be home for Christmas.

Thanks for sharing your baby girl with us.

Fullmer Family said...

Sweet little doll baby! We'll be praying for a quiet Christmas at home for you guys! xoxox

Kristina Carter said...

I'm so sorry. Oxygen stats are the worst! Stella liked to stay around 11. I know crazy! It was the lowest stats the nicu had ever seen.

Love the laid out arms though. so precious!

Mom on a Line said...

Emily is so incredibly adorable!!! I do hope you can go home, recover, and have surgery, and recover before the holidays. I'll be thinking of you all (as I always do, even if I can't get to the web.)

And I know why Jason hates the tape for the cannula. It is so harsh. We have to tape the Dancing Queen's cannula on every night since she wears oxygen every night and will rip it off without the tape. But, we found tape that doesn't damage the skin! It is orange/pink and they don't usually keep it in the ICU or cardiac floors (at least by us). The tape is normally used for things like colostomy bags, but it is so nice. If they have to use tape on Emily, I'd ask for hy-tape (although, we've found the non-name brand is even easier on the face). Here is a link so you can see it yourself: http://www.allegromedical.com/wound-care-c541/megazinc-pink-adhesive-tape-p548416.html

Elleny said...

Ohhh man she's darling! Ps- don't worry, my hair is also falling out at an alarming rate. The other day Cory asked me why there was a wig in our garbage can. Apparently it's a normal post-pregnancy phenomenon.

walden said...

What a sweet little nut! We'll add "Home for Christmas" to our prayers that we pray every day for her...it'll happen! She's getting so big! Go Elimy!