Monday, October 8, 2012

Kickin the Bottle

If this were a bigger blog and I were a more famous blog writer, I might have done some big give-away on my Facebook page today. My friend Marjo might be packing her bags for Figi, or relaxing in front of a new 46" flatscreen, or merely sipping a cup of Starbucks.

Unfortunately this isn't a big blog. And I'm not a famous blog writer. Sorry Marjo.

So what would this big give-away have been for? For being the first person to correctly identify this.

Who can guess what this is?
There were a lot of great answers, albeit many true ones.. A clean counter? Yup. One that has not been clean for a long time? Uh huh. No Dishes? Absolutely. And my personal favorite? A picture in which all the clutter is pushed to the right, giving the appearance of cleanliness. Ahhh.. so true again. Yet not quite what I was looking for.

The "right" answer? A counter with NO MORE BABY BOTTLES!!!!!

I really, truly didn't know if this day would ever get here.. I mean.. I guess I knew it would someday. I just didn't know when. Or how. Eating and drinking is such a huge issue for kids with CdLS that I just didn't know how we were going to make the transition.

Ella and the bottle have always had a "it's complicated" sort of relationship. We never wanted to do the bottle in the first place. I nursed her for awhile, but after she wasn't gaining weight and no one knew why, they (doctors, nurses, nutritionalists..) told me I needed to add extra calories to her milk. So I pumped and added a scoop of formula to a bottle for about 5 months until it became too hard. We went to straight, nasty Nutramigen-formula after that and have been on it ever since. After I got over the fact that we constantly looked like a crackhead house from the white powder covering our counters, the bottle really wasn't as bad as I thought it would be.

When Ella was so so sick with Salmonella poisoning last year, getting her to drink her bottle again was a HUGE struggle. She had an NG tube at home for nearly 3 months because she refused to eat. But I never gave up trying. Every 3 hours I would make her bottle, wake her from her nap if need be, and TRY to get her to drink, knowing she wouldn't. I did that about 6 times a day for 3 months. I became a little cynical after awhile. "Here Ella.. here's your bottle that you're not going to drink." "Oh.. let me wash these bottles again that no one is using.." But I did it anyways. Even when it was hard, I did it. Even when I just wanted to give up and feed her through the tube, I didn't (until after I tried to feed her by mouth first, of course). And eventually one glorious day, just like that, she started feeling better and drinking her bottle again. And that NG tube just "came out." (That's what I told our GI dr anyways... I might have left out a few details..)

Through the last few months though Ella has started to resist the bottle again.. I began to have to get the bottle ready, rock her to sleep with her pacifier, then when she was just asleep, but not too much or too little, I would sneak the paci out and switch it for the bottle. (This made it a little difficult to ever leave her since I seemed to be one of the only ones who knew just when the magical moment was that she was just enough asleep to take it but not too asleep to just let it drip out the side of her mouth..) She would then drink her entire bottle in her sleep and not even know it. (Not good for her teeth, I know.. but ya do what ya gotta do..) We've done this about 3 times a day for the past few months..

When these more recent shenanigans started, I knew we needed a Plan B. If she just up and refused the bottle one day I knew we would need a back-up plan. We'd have no way of getting fluids in her and knowing all too first hand how quickly she can dehydrate I knew that could be a potential trip to the doctor, an NG tube, or even a more permanent G-tube (A lot of kids with CdLS have them). I didn't want that to happen. Don't get me wrong.. G-tubes can be great. They're wonderful for kids who need them. I just didn't think we needed one.

We've been working on a sippy cup with Ella for.. ohhh.. about 10 months now. We've tried Dr. Brown's, Gerber's, Nuby's, Nuk's with a hard spout, Nuk's with a soft spout, mason jars... And she would take small sips. But not enough to replace the bottle. She did better with water and juice, but just doesn't seem to like milk. We've tried Pediasure, whole milk, 2% milk, chocolate milk.. She just doesn't seem to like the taste of any of them. But I thought she needed those bottles for extra fluid, for extra calories. Even though most kids her age are off the bottle by now and it made me insanely jealous to see their mamas sans bottle, insert, cap, formula, and microwave nearby to warm it up.. I was in no way ready to give our safety blanket up yet.

But Ella was.

About 3 weeks ago Ella got a cold. Nothing major. Just a little snotty nose. But that snotty nose made it tough to suck a bottle.. in your sleep.. that you didn't really even want in the first place. So she didn't. We tried and tried.. and she wouldn't take it. So eventually we quit trying. And behold- Ella started eating more solid foods.. feeding herself more.. Instead of me force-feeding her bites with a fork, she started literally shoveling handfuls of food into her mouth all by herself. (And sitting her her high chair for longer too!) She was replacing the calories from the bottle! And she started drinking more from her sippy cup. Sometimes she would get fussy in the evenings and after numerous failed attempts at trying to figure out what she wanted (pacifer? cuddles? blanket? rocking? new diaper? floor time? being held? music? toy? walker?), we finally got the genius idea to offer her a cup of water. And she chugged the whole thing! She still doesn't drink a ton of milk, and she probably doesn't drink as many total fluids as they say she "should" (I guess we'll see what GI has to say about this next week.. eek!) but from my view, she's doing great.

And my counter??? CLEAN!!  After 21 long months I am SO happy to have those bottles out of there! It leaves SO much more room for junk mail.. bills.. dirty dishes.. clean dishes.. toys.. groceries.. laundry..  I can't wait to fill it! :)

It just seems like it all happened so quickly.. so suddenly.. I feel like I am still reeling. Like, it just can't be true. She hasn't had a bottle in 3 weeks and she is OK! I didn't know that was possible!

Even though there was no big, fancy give-away, my joy that I'm sure is bursting through the lines of this blog should be prize enough.. right Marjo??

*crickets chirping

I guess this should be a lesson then to choose your friends wisely. And your blog wrtiers.. ( - :

On a side note, Ella also gave up her pacifier this week... I am NOT so joyful about that one. 


  1. thanks for sharing..

  2. I just looked at your page on CdLS (I'd never heard of it before). After that, I just wanted to say, "Congratulations on no bottles!!" Not so much on the no-pacifier, though :).

    I'm stopping by from the Mommy-Brain Mixer, and I'm your newest follower.

  3. Found this post on the Two in Diapers link-up and you've got a great blog! Fun to visit and here's toasting you with a sippy cup! Go you guys for kicking those bottles to the curb! :)

  4. Hi Maria, I'm Anne from Life on the Funny Farm ( visiting from the Mommy Brain Mixer.

    Congrats on being baby-bottle-free! Yay you!

    Anyway, it’s nice to "meet" you. I hope you can pop over to my blog and say hi sometime if you get the chance.

  5. I think it's always a big step for babies to be 'bottle free' but for Ella, this is such a HUGE step. From my minimal knowledge of CdLS, feeding is a big issue. So for her first not to need an NG tube, and now be away from the bottle--that's such an advancement!!!

  6. Congrats on the no bottles, we did that a couple months ago! I am your newest follower via the Mommy Mixer.

  7. Way to go on getting rid of the bottles. We got rid of the pacifier this week. I'm hoping that I'll get a full night's sleep again...

    Found you on the Mommy Mixer, and I'm your newest follower.

  8. That's huge! Congrats! And I'm so happy for you that you can feel that relief that Ella's ok without the bottle.

  9. Thanks for sharing this. I am mother to a 15 month old boy with CdLS - Wilder. We are starting a second tube wean today actually. And it is nice to read another mother's experience as I grapple with the trying to get Wilder to drink (he had cleft palette repair surgery a month ago). Wish us luck. And thanks again!