Sunday, January 22, 2012

Questions and Answers


Yes.

That's the answer to the question, 'Is Emily still throwing up every day?'

In fact, it's usually more than once.
For sure it's every morning after we get her out of bed.
And then during the day if I move her too fast during or after a feed, she throws up.
If she coughs she throws up.
And then sometimes when we're innocently minding our business it just comes randomly.
It makes it a little tricky to do tummy time.

This is the little miss hanging out in Mommy's bed waiting for her bath after an especially messy episode.


I swear I'm going to get a real camera one day.

* * * * *

Yes.

I survived being a single mommy for the week.
In fact, just today I felt like I finally had it figured it out.
I even managed to shower while Emily was asleep.
This is how I left her when I jumped in the shower.



Twix.

My favorite candy bar.

* * * * *

We're not sure.

That's what we came away with after Emily's appointment with the GI doctor last week.
We're taking her in Tuesday for an endoscopy.
They want to see what damage acid reflux has done to her little body before they make a final decision.
Regardless of the outcome of the endoscopy, Emily will soon be going in for her fourth surgery.

She will be having her feeding tube surgically inserted into her stomach.
Depending on what they find with the endoscopy, Emily may also have a procedure done to her stomach that would prevent both reflux and throwing up.

The G tube is more permanent but we're all hopeful it will be better for Emily in the long run.
Em has a very sensitive gag reflex and when she coughs the feeding tube in her nose triggers that reflex.
The feeding tube makes the acid reflux worse.
Changing the tape on Em's feeding tube causes great trauma for our little lady.
Basically, the feeding tube is the bane of our existence...
...except for that part where it's keeping Emily alive.

* * * * *

Homemade chocolate chip.

My favorite cookie.
(I can't believe you didn't know this.)

Double Stuff Oreos come in a close second.

* * * * *

No.

Emily is not taking a bottle.
Not even a little bit.
In fact, her feeding therapist has suggested we don't even try right now.
Part of the problem is the throwing up.
The only experience Emily remembers with fluid in her mouth is a negative one.

And I wish it were as simple a solution as 'change the type of bottle you use.'
Or 'change the formula.'

The feeding therapist, Jason and I made ourselves a goal to have Emily eating half of her daily feeds within 6 months, although it's likely Emily will never drink from a bottle.

* * * * *

75/25

The ratio of good days to bad.
Things are looking up.

* * * * *

Putting her thumb inside her binky and sucking on it.

One of the cutest things our little Elimy does.


And no, we're not getting rid of the binky any time soon.
It's what is keeping Emily out of the '100% oral aversion' category.
We'll gladly pay for braces if it means our little lady actually eats one day.

* * * * *

A pedicure.

The thing I'm craving most.

* * * * *

Love and sincere appreciation.

What I feel most when I think about all of you and the support you give to us.

* * * * *

Thanks for asking.




13 comments:

Bossy Betty said...

Wishing the best for you and little Emily too. As a mom , I know your fondest hope is nourishment and normality. Wish I were closer. I couldn't give you either, but I could give you a Twix bar and sit and hold your hand while you ate it.

wjmom said...

I'm so glad to know!

Amy said...

Yes. She's awfully pretty and you're a great mom.

Also, Josh had Nissen surgery (I assume that's what your talking about for Em) and it was a good thing. I hope it is for you and Em too.

Tommy put his fingers in his binkie for sucking purposes. We affectionately called this habit "The Doublesuck"

Elizabeth said...

I love that binky/thumb sucking combo! SO cute! Both my kids sucked their thumbs. It wasn't so cute when they were nine and seven, but I loved it when they were little. I have a neighbor who has a one-year old. When the baby was really little, she'd want to suck her thumb, but my neighbor wouldn't let her. She'd pull her thumb out and stick a binky in her mouth instead. I kind of didn't get it because binkies get dropped and lost, but the thumb is always right there, attached to the end of the arm. Anwyay, Emily's binky/thumb hybrid is adorable. Seriously.

Think of you often . . . the offer to clean still stands. Name the day and I'll be there with my two little former-thumb-sucking cuties.

xo -E

Kim said...

I didnt even know they make Binky's that way! Wow where have I been? Obviousely not around any babies!

So glad to hear you survived the week,,,,funny how we figure it out right when were going to turn the corner. :)

I wish little Emily didnt have to have surgery yet again, but if thats what it takes to make her more comfortable and closer to healthy, then darnit, I guess thats what has to be done. I wish I could have the surgery For her, I would.

Jackie said...

I love love love that last photo! Sweet thing! She is the sweetest!

We just finshed paying off one set of braces, getting ready to begin the second. Bigger fish to fry I say!

Jackie said...

Love love love that last photo! Sweet girl!

Anonymous said...

I'm thinking of you guys. Emily is such a strong little girl. Clearly the product of inspirational and amazing parents.

Dawn said...

Noelle,

I wanted to let you know that my son, now age 11, had a g-tube from ages 2 to 5, diagnosed w/failure to thrive, food refusal, hypersensitive gag, oral aversion, sensory processing disorder and multiple food allergies. He was in feeding therapy from ages 2 to 9.

When he first had the g-tube placed, I was terrified - of hurting his stoma, of it coming out, of feeding him wrong, of him vomiting (which he did OFTEN at first!). And then - it became part of our new "normal", and I somehow over time transitioned to fearless mama warrior. And, you will too! I will say that the vomiting might get a little worse before it gets better, until it is determined how fast or slow her feeds need to be - but I definitely agree that the ng tube can trigger gagging/vomiting - get that puppy OUTTA there! :) Yay, Emily - you go girl! I think you might like your new tummy "button"!

Let me know if I can be of any support, Noelle, okay?

Sending prayers and positive thoughts every day,
Dawn from Florida

I can't remember where I first linked to your blog, but I have been reading for a while now, and cheering on Emily.

Shan said...

75/25 is pretty darned good! Here's to an even higher ratio, preferably related to less vomit.

John Bradfield said...

Hey Noelle,

Just a note. My little Emery has both the Nissen wrap and the G-tube. It was a little scary at first, but we are so glad to have them now.

I mentioned your blog post to my wife and she said that she'd love to talk with you if you have any questions about it or just want to talk with someone who is in a similar boat.

She's adorable, and that thumb in the binky is a sign of intelligence, I think.

We feel the same way about pacifiers. We'll let Emery suck hers until she's 19 if it means that one day she'll be willing and able to accept oral feedings and swallow.

You told me to keep you posted about her progress with the binky trainer.

She's not a big fan, but we think she's doing it. We'll have another swallow study in February. Here's hoping...for both of these sweet little Em's.

John

Mom on a Line said...

The picture of Emily with the paci inbred thumb is priceless.

Thinking of you all with the g-tube and possible fundiplication surgery. I follow many heart kids who start out this way and do learn to eat. I know Emily can do it too. I hope this helps Emily's reflux.

Sending lots of hugs!

Of One Heart said...

She's going to be your greatest fan when she grows up and reads your blog. Love that last picture~!