November 9, 2014

oh my.

Today I have zero pictures of Ruthe to post.  Do you want to know why?  Because she is CRAY-CRAY!!!!

To be fair, we did sleep in pretty late, which throws off her feeds and completely chases away whatever glimpse of a real nap we might have seen.  

And I may have accidentally, unintentionally, poured about 40mLs of Pediasure all over us, AFTER we were fully-dressed and ready for church.

But still.  What happened to the sweet baby that slept all the way through church??  Who is this little crazy person that barely laid down for an hour before bolting right back up to terrorize the dog??  And why - WHYYY - won't she fall asleep now, at 11pm??!

I'll tell you why.  It's because she's my daughter, and she thinks she's the boss.

She's right, though.

That's why I'm going to go rescue her from the crib and let her sleep in the center of the bed with her foot in my face.

---------------

UPDATE

In Ruthe's defense, putting her in Halloween/skeleton pajamas probably confused her, which must be why she spent 30 minutes practicing for a screaming contest tonight.

But it finally wore her out, and now she looks like a perfect angel.




October 31, 2014

happy hallORRween!!

The cutest little piggy ever!!





As you can see - she's pretty dang excited about the candy!  Too bad she doesn't know how to eat it. 

MORE FOR MEEEEE!!

October 26, 2014

my little pumpkin.

This week was quite the adventure for Ruthe and I!  My parents went on a week-long trip to Boston and Vermont and left us ALL ALONE in Las Vegas.

I know what you're thinking.  Why didn't we just go to Salt Lake to visit John?  Well, two reasons: one, Ruthe had an appointment to get some vaccinations that she was VERY overdue for; and two, we had to take care of the dog.  Reason number two is not really a good reason, because the dog technically belongs to my brother, who is perfectly capable of coming over to feed and water Elvis.  But Ruthe was about six months late getting these vaccinations, and her pediatrician's office is busy busy (with all us Medicaid patients!), so I could risk ditching the appointment and having to wait another six months. 

So we stayed at home and went to the doctor and ran errands and forgot to water the plants and watched Chitty Chitty Bang Bang seventeen times and went to Target and rolled around on the floor and all sorts of fun things.

INCLUDING going The Great Pumpkin Parrot Festival yesterday!!  It's a real thing.  There's a nature sanctuary here that has all kinds of parrots and fancy birds and chickens and goats and LLAMAS and geese and pigs...  And they had a fun Halloween festival with crafts and pumpkins and our friend Teri dressed up as a witch for story time!!

Ruthe was a little taken-aback by all the birds.  And all the crazy kids probably didn't help either!  But she loved the story time and even did a little dance afterwards!!

((you can watch the video here: http://youtu.be/K9ux1AMlbN8))

She is getting so big and crazy these days!  She has even figured out how to sit up in her own!!  It's funny - she has to wedge her feet underneath something to get enough leverage for a sit-up.  Weird kid.

Tomorrow I am taking her in for her third heart catheterization.  I have a problem considering it a "surgery" even though it technically is one.  I don't know why, I think I just don't like putting it in the same category as her open-heart surgeries...  

Anyway, here's a funny picture of her in the bathtub.


October 23, 2014

face painting.

Today I took Ruthe to her first ever Halloween party!!

The Early Intervention office where Ruthe gets all of her therapies had set up a big event with activities and trick or treating and - you guessed it - FACE PAINTING!!

For some reason I think that babies with their face painted are the. cutest. thing!!  Unfortunately, I didn't think how bad of an idea it actually is to paint your babies face...


It lasted about thirty seconds.

It ended up all over her shirt sleeve.
 
When she saw the black paint smeared on her hand she was NOT HAPPY.

So maybe we'll save face painting until she's a little bigger before we try again.

October 20, 2014

nothing.

Ruthe and I spent the last two days doing absolutely nothing.  It was glorious!

Although, doing nothing has definitely changed a lot, since becoming a mom...

I still had to feed her every four hours.
And change her diaper.
When I would have rather been napping on the couch I was, instead, crawling across the living room trying to catch a naked baby. 
"Row Row Row Your Boat" interrupted the important scenes of every show I tried to watch.
Her g-tube attachments can't really wait until tomorrow to be washed... (or at least rinsed out!)

I did, however, successfully evade laundry for another day!  So that's one perk.  But, by far, my favorite part of doing nothing all day was that it was spent snuggling and smooching my sweet girl!!  Sometimes it's hard to fit enough of that in everyday.  

She did a lot better with her puking today!  Only gagging a little bit and not actually losing any food.  (cross my fingers & knock on wood because now she's got a pre-puke cough ��)

... ... ...

With a whole weekend to contemplate what we learned from her upper GI scans, I've tried to pay closer attention to what might trigger her gag reflex.  (Aside from the reflux, I mean.)  The doctor mentioned that sitting-up through her meals would help keep her food down.  Nope.  He also said to thicken her formula with rice cereal, to make it less likely to reflux. I wouldn't know, because it moves so slow through her tube that she never actually got more than an ounce and a half before I had to give up and switch back.  He suggested feeding her slower.  It already takes at least an hour to feed her, and that's on a good day!

I'm hoping that Ruthe's GI doctor will have the test results tomorrow and will call to discuss our options.  And I'm hoping he'll let us at least try using Prevacid or something before going straight to surgery.  But I'm not a pediatric gastroenterologist, so I'll just wait and see what he says.

In other news - Ruthe had a speech and occupational therapy session this week, and is doing really well!  I need to be better at trying more foods with her, to try and find a flavor/texture combo that she likes so we can work on control and swallowing.

Her speech therapist is also an occupational therapist, so since Ruthe can only handle the high hair for about 30 minutes, we use the rest of our time letting her play and watching how she interacts with her toys.  She's been doing really well putting things into containers, so I'm supposed to start using smaller items and smaller containers and having her take things out as well.  It's so amazing to me how babies learn things... they're just little geniuses!! 

Now, if only my little genius could hold still long enough to have her ears cleaned out, she might hear me when I tell her she's the smartest baby in the world!!

October 18, 2014

parenting 101.

When you're in the car and Bohemian Rhapsody plays on the radio you DO NOT, by any means, consider the sleeping baby in the backseat.  

You crank that volume and you rock out.  

For all five minutes and fifty-four seconds.

The baby can sleep anytime, and will -in fact- fall back to sleep shortly after your sweet air guitar (or steering-wheel drums) solo.

(And sometimes, if you're listening to Spotify, you can hit repeat a few times. That's OK, too.  She needs to learn the words eventually, right??) 

Party on, Wayne.

October 16, 2014

guts.

Today we got to see the inner workings of Ruthe's stomach.  It was SO. COOL.

We all know that Ruthe's alter ego is the super-villain known as Pukezilla.  (She missed the "secret identity" memo.)  But the problem with being extraordinary at spitting-up is that her calorie intake drops, she doesn't gain weight, and she develops an aversion to putting food in her mouth.

So after a year of thinking she'd grow out it, and it would get better after her last heart surgery, and trying every trick in the book, I called her doctor and said we needed to figure this out.  He agreed, because she actually shouldn't be able to vomit.  (They did a procedure called "fundoplication" when she got her g-tube that makes it physically impossible.)

Well, what we learned today is that her stomach function looks fine.  Food moves quickly from her stomach to her intestines, and there are no obstructions in her esophagus that are triggering her gag reflex.  BUT she does have a very sensitive gag reflex, and her fundo has been loosened so that it no longer does its job.  So, when even the tiniest bit of food travels back into her esophagus, she gags, causing more to get pushed up, causing the spit-up.  And it started after just 4oz of liquid.  Only half of her normal feed.  And the doctor pulled 2 of those ounces back out through her g-tube when she started to gag.

The tricky part of what we learned today is that everything is functioning "normally" but that's a problem because Rutge is not normal.  Because she has the g-tube, she really needs the fundo to be working.  And since she's still going to be on the g-tube for an indefinite period of time, we'll most likely need to have that procedure redone.

So, in summary:  Ruthe's scan today went really well!  Her results are pretty much normal.  But that means she will most likely need to have another surgery.

I hate it when good news is bad news in disguise.

There is a silver-lining though, because now we can try to have this surgery done during the same stay as her palate-repair and I can make a better argument to have them done at Sunrise!!