Wednesday, August 12, 2009

the beginning

I feel like everything is just beginning for Eliot. I mean, I know we've had the twins for almost twenty months now, but those twenty months have been so . . . what's the word?? . . . unusual?

Unusual with Elie anyway. Our daily routine was literally dictated by her severe reflux. Now, trust me. I know it's just throw up, and in the scheme of 27-week twins, we have it unbelievably good, but you cannot imagine how overwhelming it is to take care of a child who pukes constantly. And by "constantly," I mean upwards of twenty times a day. Imagine the laundry. Imagine the frustration.

Taking Elie anywhere the first year was a nightmare, because, for a period of time, she threw up every time we put her in the car seat. And, of course, we were always running late, and then Eliot was covered in puke, and then I was crying, and then she was crying, and then Owen was screaming, and it was all just one big fat nightmare. So, why go anywhere?

I'll never forget taking her into the grocery store when she was nine months old, and the woman behind the counter said, "What's that tube for?" (She still had the very visible n/g tube that went down her nose.)
"She doesn't eat."
"What do you mean she doesn't eat?"
"I mean, she doesn't eat."
"She doesn't eat anything?"
"Nope. Nothing."

And then Eliot proceeded to throw up everywhere, and even though I secretly wished she had thrown up all over the checkout woman with the ridiculous questions, it ended up hitting me, dripping down my leg, and pooling into my shoe.

I remember when she went through the dreaded separation anxiety phase. A baby who doesn't eat, who is used to throwing up all of the time, usually has an overactive gag reflex. But, I was determined to stick to our nightly routine, and I would bathe, read a book, and kiss my little O & E good night. I would shut their bedroom door, sit on the top step of our stairwell, and cry and cry - knowing that in a few minutes I would have to go back into their room, put Eliot back into the bath tub, change her crib sheet, and put her back into another pair of pajamas. This happened every night for over four months.

I will also never forget the countless times I got down on my hands and knees to wash the floor, the couch, the walls, the highchair, the cabinets, the kitchen barstools, the molding - talking myself down from the ledge by saying, "It's just puke. It's just puke . . ." Sometimes the days seemed nearly impossible to get through.

And then there was her eating, or lack thereof. You would not believe the looks you get when you have a kid who doesn't eat, and has a tube in her stomach. Plus, the advice . . . Oh. my. god.
"Just give her ice cream. She'll definitely like ice cream."
"You should try to feed her slower. You're going too fast."
"Have you tried chocolate? All kids eat chocolate."

Everyone wanted to help, but no one could. Everyone thought they had the answer, but no one did.

With Eliot's recent success in the Marcus Feeding Disorders program, I am starting to see things change positively for Axt Baby B. Monday was a big day. El is currently taking pureed foods and drinking whole milk from a cup. The process to move her to "toddler" food involves the following steps:

1.) puree (what she is eating now)
2.) wet ground (stage 2 baby foods)
3.) ground (stage 3 baby foods)
4.) chopped (chopped food with a knife)
5.) table texture (what most toddlers eat)

On Monday, the psychologist said, "Let's try to make the jump from purees to table textures, and see what happens. We are expecting her to spit the food out and gag a lot, but maybe she'll surprise us."

And surprise she did.

As of yesterday, Eliot is now eating - chewing and swallowing - table textured foods. This is REGULAR food, just cut up, and served on a spoon. Scrambled eggs, cottage cheese, chicken nuggets, asparagus, spinach, peaches, strawberries . . . !! We have four weeks left at Marcus. If she continues to progress, she will come home eating the kinds of foods that Owen is eating right now. How surreal . . .

That's why it makes me feel like life is just starting for her. All day at Marcus people talk to her and hug her, and she loves the attention and interaction. It's so amazing to see the kind of kid she was meant to be, the kind of kid she would have been if she had been given a fair start to life - a kid who is active, social, and alert; a kid who now seems to enjoys her days, and doesn't constantly feel sick. This big, new, delicious world full of yummy mandarin oranges and chocolate milk is opening up for her, and she is walking into it full force!


Stacie said...

Her growth and the blossoming she is going through right now is a testament to your incredible strength, even if it didn't feel like you were strong. You were amazing all along, and that allowed her to just BE until she was ready. I hope you know how amazing that is.

I am just so happy for you all. I hope that this change continues to bring happiness and excitement into all of your worlds. Much love.

afielder said...

I'm SO happy for you! Congrats!

Rich Kresge said...

How exciting for you all. I can't even begin to imagine what its been like for you. The reward of course in the end is happy healthy kids. Good for you! I just spoke with your mom. We let her know that we will be coming to the Atlanta area, arriving Sept 13 or 14th at your mom & dad's. We hope to see you all as well when we are there.

Eunice Scott & Uncle Rich Kresge

Stacy Alley said...

Wow, you are an amazing woman and she is an amazing little girl! Rob and I took those simple pleasures for granted I suppose. Congrats and I look forward to hearing about her progress!