Wednesday, August 8, 2012

I'm Campaigning For A Stomach Transplant

Thank you so much for you kind and supportive comments on my last post.
I sincerely appreciated all of them!

* * *

Emily's stomach is not behaving.
Not even a little bit.
And all of us: Daddy, Mommy, and Emily, are growing weary.

Our poor girl.
There isn't a day where she doesn't retch, gag, vomit, moan in pain while she's being fed, and often vomit again.

Sometimes both in the morning and at night.
Sometimes in the middle of the night, and sometimes in the early hours of the morning.

And it's usually not until sometime in the afternoon that she starts to act like she feels well.

We met with Em's GI doctor and her dietitian last week.
Em's okay for now with the weight she's gained, but if we maintain status quo she will start to lose weight.
The dietitian told me I needed to bump Emily's calories from 22 calories an ounce to 30 calories an ounce.
I looked at her skeptically and she said, "She's old enough.  She'll be fine."

I wasn't willing to make that big of a change all at once, and so I bumped the little lady up to 24 and she tolerated it okay.
A few days later I bumped her to 27.
It was a disaster.

She threw up all day long...and she was miserable.
She's back at 24 where she is going to stay for now.

Jason and I used to believe that Em would grow out of this phase.
Now we're just waiting for the day when she can hold her own puke bucket. 

I asked the doctor what a realistic time frame would be for Emily to be eating by mouth and she said 
"I'd say by the time she's four or five."

I might have cried.

The dietitian asked, "Why does it matter?  Why does it matter how she gets her food?"

I thought about it for a minute and said, "Because of the social pressure there is to feed her."
The dietitian rolled her eyes and said, "I know, and it makes me crazy."
"You're feeding her.  She is getting a better diet than most kids her age.  You are not failing her.  Not even a little bit."

It's easier to say than to believe.
Every day someone asks me, "So when can you start to feed her?"
Or they'll ask, "Why won't you feed her?"

And although I know it's not true, there are moments where I feel like a bad mom because I can't get my child to eat.

Em has a tooth.
It's her first one.
Do you know that I can't even get close enough to her mouth to see it?
I just happened to see it one day when she was talking to me.
It shocked me.

It's rare that she allows anyone to touch her mouth...let alone put anything in it.

The dietitian asked Em's feeding therapist who went with us to the appointment "Is is a sensory issue?"
"No," said Em's therapist.
"Is it  a fear of swallowing?" the dietitian asked.
"No" was the reply again.

"It's just Emily.  And she's a stubborn little girl.  And no matter what we do, she's not going to eat until she's ready."

I'll give you proof.

...if I can get the pictures to download...

20 minutes.
That's how long Em and I played with chocolate pudding.
It was highly entertaining...and our girl got pudding everywhere...
Except in her mouth.
The pill wouldn't even lick her lips.

Who knew that the heart defect would seem like a cake walk compared to the stomach/feeding issues!
(At least now that we're not facing open heart surgery for a little while.)

She's adorable though...that makes up for a crummy stomach!


Jen said...

I don't know if it would interest you, but I've been reading a blog about a mom dealing with her daughter's feeding tube and her feeding therapy.

Angel Shrout said...

Bless both your hearts. I cannot even fathom having feeding issues with my boys. They ate like grown men from birth. I do agree though chocolate is her color.. too cute.

Anonymous said...

Because I work with parents who have children with special needs, I know that feeding issues are often the most complicated and difficult. There is so much emotion involved. As parents, we equate feeding our children with nurturing them on such a very basic level. Food is love in many people's minds.

I think you and Jason are amazing parents, and I am sorry it is so trying for you - and Emily too.

I am a bit curious as to how you will be able to be sure Emily's dental needs are met - hadn't considered that until you wrote about her new tooth.

And you are right - she is one adorable girl! Hugs to all of you.

Leslie in CA

Sandra said...

You know, when Brandi was born I spent some time crying that she got formula instead of me being able to nurse her. Until I decided that it didn't really matter, my baby was getting the nutrition she needed and it didn't matter how she got it. I know it isn't quit the same thing, but I agree with the dietitian, she is getting the nutrition she needs to keep her healthy and strong and allow her to grow. Who cares if she gets it through a tube or her mouth. The important thing is she is strong and growing.

And a tooth! that is exciting.

And you know she will always do things her way in her time and when she is darn good and ready. And that is part of what makes her so loveable.

(and when someone asks when you can feed her just tell them that you do feed her because if you didn't feed her she wouldn't be here. Just because their definition of "feeding" is giving her food through her mouth doesn't mean you are not feeding her. (and she is getting better nutrition than all the stuff she would be getting if she were eating finger foods etc)

MamaMags said...

she certainly is adorable! And you and Jason are amazing parents. I am so glad I found your blog and that we share a wonderful relative in Blaine and Kathy. Keep your chin up, we in blog land support and love you!

Dazee Dreamer said...

I so wish I could think of something she would like to put in her mouth. I even thought of those sponge thingy's they give you when you are in labor but you can't eat or drink anything.

Elleny said...

The pudding mess looks like a blast! Bet it wasn't as fun to cleanup :) So glad you're feeling better!!!

Lalis said...

Sorry I've been MIA from commenting... I have been reading, I promise :)

I just barely read yesterday's (?) post. I have one thing to say to ya--Sometimes the hardest thing is admitting that you need a little chemical boost to help you be yourself. Seriously, it sounds absurd. It doesn't even make sense when you first hear it, but I've experience it myself... And I guess I got kinda lucky because my older sister when through it first. When I saw the signs I knew exactly what was going on. I still don't understand it: How is it that chemical imbalance messed with my soul in such a way? It was horrendous... But I was certainly glad that you found your light at the end of the tunnel.

Now, back to Emily. So, I've been having some issues with food myself, and I'm guessing it's a side effect from the meds I'm on for migraine prevention. Hate it. I was talking to myself the other day--as I often do--and said, "I am done with food. I hate food!" Then Em came to mind and I felt really guilty... As I read your post things that you could try start popping up in my head. I guess it's natural you know? We want to help. We want to solve your problem because we love you and we love Em... And also because we're idiots, we have never encountered a situation like it, and we cannot comprehend and therefore cannot believe it is as difficult as it really is! It dawned on me... Emily's life has not been ordinary from the moment she was born (perhaps even before that?) She has experienced life entirely differently. Tasting food is such an abstract concept to her... She doesn't necessarily need it and so far anything warm, liquidy, gooey substance in her mouth has only been associated with discomfort! How can you blame the kid for not wanting pudding! Heh heh... I say, you go Emily for standing up for yourself! ;) Seriously speaking though... You probably already knew all that, I'm just saying it to reassure you... Eating is the norm, but for her, it isn't. For her, stuff in mouth means something entirely different. As she grows and is able to grasp the concept of yummy, things will change. We already know she is one brave, strong kid. Trust in her :)

Elizabeth said...

Motherhood is riddled with guilt. There is no manual for it. I know that I feel personally responsible for every shortcoming in my children and know that they have those shortcomings because of my own.

Keep your chin up and remember that Heavenly Father sent Emily to you and Jason because he knew you were the parents who could give her the care and love she needs.

xo -E