What's happening with Isabelle Grace?

I forgot that I had begun writing an update post for Izzy a while back.  When I logged in and went back to my drafts to read what I had previously noted, I was reminded how much progress she's made in the last month.  Since I never actually posted the updates, those that haven't seen Izzy in person lately have no idea how much this little lady has transformed in such a short period of time!



She weighs about 20 lbs now. Her last height measurement was 29.5 inches.  She is growing and getting stronger every day.  If you recall, she had been on five different medications!  We had weened her down to three.  Now, she's not on any!!!

A miracle?  No.  Miraculous work by my incredible wife?  Absolutely. 

About three or four months ago, we had begun to ween her off of her diuretics.  She was starting to walk a lot more and seemed to be building up her stamina.  She was growing and it seemed logical that the surface area of her lungs would also be growing with her, which would have a positive impact on how much oxygen she was getting.  There were days when she seemed lethargic and other days where she was doing cartwheels.  Overall, she was making progress and still is.

Around the same time, Meg and I started eating a little better.  Not perfect, but we added green smoothies to our diet (we're still going relatively strong by the way).  It made us feel so much better.  We thought to ourselves, "Why couldn't we do the same thing with Izzy?" Izzy had been on a special formula since the NICU and we had switched to the "junior" version late last year.  She was still having horrible reflux and gagging with almost every feeding.  Meg worked with the nutritionist to come up with a mix of foods for our mega blender that would provide Izzy with the right mix of proteins, fats, and carbs, as well as the right amount of overall calories.  While we've had some g-tube "explosions" when the port occasionally gets clogged, she started improving immediately with the real food blend.  Honestly, I think it partly had to do with the fact that the food wasn't all liquid and that she slowly learned to manage her gagging.  Over several weeks, we noticed that she stopped gagging all together!

Could it get any better?  Quite simply, yes.  After enough time passed, we decide to ween her from her antacids since she wasn't having any more reflux.  We are now 100% medication free!

We've never really known what was going to put her over the edge and make her want to start eating again.  Over time, we noticed her putting food near her mouth though she still wouldn't think of taking a bite of anything we offered her.  Several weeks ago, we had a breakthrough.  Izzy started eating.

I'm sure it had a lot to do with the fact that she probably wasn't scared that she was going to puke everything back up anymore and that she has two sisters who are constantly acting as role models while they eat their food in front of her.  I know it was mostly due to Meghan's infinite patience and her willingness to give Izzy opportunities to eat by mouth throughout the day, even though we thought that it wasn't in the cards for at least another year or two. 

She's not eating enough calories to make up for what she needs on a daily basis, but she's had days where she's eaten over 50% of her calories by mouth.  It's not always easy and she's still working on associating the feeling of hunger (and subsequent feeling of satisfaction) with the action of eating.  Sometimes, we just need to put some food on her lips, even though she may be saying "no."  Usually, once she remembers what food tastes like, she'll open up and take more.




To watch her now, you'd never know she was born weighing 1 lb 7 oz and that she lived in the NICU for four months before coming home and that we were so scared for her every time she had surgery.

It will still be a while before she's able to get rid of her g-tube, but it and the scars on her belly that serve as a reminder of where she's been, can't hold a candle to the little girl who dances, jumps, runs, climbs, now eats, and throws herself all over the couch with reckless abandon when playing with her sisters.

She loves to read, snuggle, and hide from her parents.  She's also getting very good at understanding what we're saying to her.  She's extremely vocal and talks all of the time.

Right now, she can sign: banana, english muffin, eat, more, fish, butterfly, cat, dog, music, sheep, again,  please, thank you, stinky pants, down
I'm sure I've left something out, but better to write and post this today than to just have another set of updates that never get shared.  Honestly, I can't keep up.  These ladies change so much on a daily basis that, if there were time, I'd have endless stories to tell.  I'll try to do better.  I look at how much I wrote in 2011.  Then, how comparatively little I wrote in 2012.  2013 is even worse.  I'm not trying to make excuses.  Ok, yes I am.  Having three almost-two-year-olds is intense.  Enjoyable, but intense, and making time to blog, while extremely important to me, falls behind putting food on the table and actually trying to participate in their lives. 

More updates to come soon!