Sunday, December 18, 2011

Decisions Decisions

Jason and I are up late watching the finale of Survivor.
I googled Survivor to see who won...I can't handle waiting another hour.

We went to the hospital this morning thinking that we would be bringing Emily home with us.
Tonight we left her sleeping in her hospital bed.

We've come to a crossroads and we're uncertain about where to go from here.

Emily is being fed 100% by a feeding tube.
She's been given permission to drink from a bottle if she will.
The formula she's on was never made to be taken orally, and it tastes horrible.  I know because I tried it.
My little lady refuses to drink the formula.  I don't blame her.

But here's the thing.
Emily hasn't had a single issue with her gut since we put her on this formula.
We're not completely convinced that the change of formula is what fixed everything, but it could be a big factor. we forget the bottle for now and leave her on the feeding tube or do we take a chance, hoping that her gut problems are in the past and give her a bottle with a different formula that tastes better?

Today we made the decision to keep giving her the nasty formula through her feeding tube, and give her a better tasting formula in her bottle.  Emily didn't reject the fact, I think she liked it, although she didn't drink very much.

She's still in the hospital tonight because we're watching her gut.  We will give her another bottle in the morning and then go from there.
I am so nervous about this decision.
We're risking the health of Emily's gut ... but we have to be willing to take the risk if we don't want Emily to still have a feeding tube when she goes on her first date.

And who knows if any of that even made sense.

Here's hoping that you haven't eased up on your prayers for our little Elimy...we've got a few more hurdles to get over.


Kelly Howard said...

That stinking feeding tube makes them disassociate their mouths with hunger and makes it a HUGE hurdle to cross to pull the tube because it will feel just plain gross to have food via her mouth. Your back-up plan to bottle feed is spot on, I think! I pray daily for this little miracle and her parents! G-d will give you wisdom where and when you need it!

Kim said...

That is such a tough call, I know. Every time I have to make a medical decision, I am concerned if it sets me back, how far it will (I have gut issues too, as well as autoimmune disease, so this happens to me priodically) I think you have to go with your gut (no pun intended!) - your her mommy, trust your instincts, and worse case scenario, you find out differently. of course you dont want to cause any set-backs, but sometimes, what appears to be set-backs, are set-ups....:) We always learn something new with each decision made and knowledge is power. Try not to fret. xoxoxox

Bridget said...

Haha, I do the same thing sometimes. Suspense can be a killer. If a movie is particularly heart pounding, I will google the ending just so that I can sit through the rest without an anxiety attack.
And we will definitely keep on praying for sweet little Emily!!!

wjmom said...

I think you are being very wise.

John Bradfield said...

HI Noelle,

You have no idea who I am, but we share a dear friend. Kristi Stevens referred my wife and I to your blog.

Our 7-month-old daughter is just beginning to swallow on her own...barely. They want us to introduce 1ML through a rigged tube in her binky once or twice a day.

She spent her first two months in Primary Children's NICU, and I completely understand the frustrations you expressed in some of your posts. She has been home with us now for about 5 months and they've been a strange mix of wonder, awe, and anguish. She hasn't yet passed a swallow study. She failed her first one completely, but evidently whatever they saw in the second study has given us the green light for these few drops of formula by mouth.

She hasn't had open heart surgery, but she has been opened up for a nissen wrap on her stomach, straightening out a section of her intestine, placing a gastrostomy feeding tube, and to remove her appendix. (Thankfully, they did it all at once.) She has also had surgery to open one of her nasal passages that was clogged with bone and tissue.

Ours is also mostly deaf, and the prognosis is that she'll eventually lose what little she has.

I believe in miracles--divine providence. My wife has studied sign language since she was just a kid, and she took 3 years of it at BYU when we were newlyweds. (She graduated 14 years ago.) Our little Em has a sign for Mom, Dad, and Sisters--and she uses them regularly. With her hearing aids, she hears what we say, but we don't know how it sounds to her because her ears are misshapen both inside and out.

But there's something about these little gems from heaven, isn't there? They teach us so much about smiling through heartache, love, patience, and forgiveness.

Thanks for your blog. I'll keep you and yours in my thoughts.

John Bradfield

walden said...

Keeping the prayers going strong! You hang in're making the right decisions.


Venassa said...

I hope Emily has lots of good luck with her new formula!

Julie said...

You all our always in our prayers. Go with your mama instincts, they are always right...delayed at times but always right!!
Keep taking care of yourself, hubby and your little one.
Blessings to you and yours!

Of One Heart said...

That long comment up here made me tear up. God is taking perfect care by sending you the perfect friends. I like that.