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!!

October 13, 2014

Sundays with Ruthe.

I was thinking all last week about starting a new series for the blog.  I need to be better about documenting Ruthe's milestones, and Sundays are the slowest day of our week. (that's probably not true... but it is the most consistently scheduled day!)  It's also one day of the week that I KNOW she'll be fully-dressed AND clean AND super-cute for at least ten minutes.  So, welcome to Sundays with Ruthe!!



but - as you can tell from it being Monday - I forgot!  I'm going to stick with Sundays in the future, and blame this week on having John in town with us and allowing me to take a beautiful, quiet, much needed nap yesterday.  

So, back to Ruthe Clementine...  she is a rolling machine!!  I can't set her down anywhere now without her being completely across the room when I get back!  She's also spending a lot more time on her belly looking at things in front of her and out of reach - which I'm hoping will encourage her to figure out crawling. (no, scratch that. I don't want her to crawl.)

We're still working with physical therapy once a month to assess Ruthe's abilities and needs.  She has been doing so much better since her last heart surgery!  She has a lot more stamina during her workouts, which means we can push her a little harder for a little longer, and we get to see better results!!  I'm actually supposed to decide if I want to bump her up to twice a month, or remove her from the NEIS system and get her physical therapy out in the community... it's a tough decision.

She hasn't had her palate repair surgery yet - we're still waiting on the hospital to schedule that.  We're also waiting on a call to schedule her for another upper-GI scan that will hopefully tell us if she's having issues with reflux or why else she's been so vomit-y.

We did schedule her next heart cath - for the 27th.  They need to get better readings from her pulmonary branches and either balloon them a little bit or place stents to open them up a little more.  Remember when she had her first surgery and they put PA bands in?  Her doctors are starting to notice in a lot of patients that afterwards those same spots are narrowing and causing higher pressures than they'd like to see.  So the cath will be done to measure the velocities and try to correct the issue.  

It's an out-patient procedure, but it will be an all-day affair.  Once the cath is done and Ruthe wakes up, she has to be kept still and monitored for at least 6 hours.  That means flat-on-her-back, no snuggling, and a very uncomfortable chair for me.

We've been so lucky to have John here this weekend!  And he has been SO GREAT with Ruthe, allowing me to sleep in and take some incredible naps!!  




September 29, 2014

only two.

The last two weeks were crazy.  Let me just break it down for you:

9/11 - Ruthe's first flight
9/13 - the CJ Walk 
9/16 - neurology appointment
9/17 - feeding evaluation
9/18 - speech therapy // book club
9/19 - nutritionist appointment // leave for Cali // author signing
9/21 - back to Vegas
9/22 - Syd doctor
9/23 - physical therapy
9/24 - Syd other doctor
9/25 - plastic surgery appointment
9/26 - whole-lotta-paperwork day (it's a real thing, we had an appointment to do paperwork.)

yep.  That's right.  This is one of the rare months where we'll have seen basically ALL of Ruthe's doctors/therapists/specialists/everybody.  It doesn't happen very often.  Maybe only twice so far.  (Not counting after she gets discharged from the hospital and has a bajillion follow-ups.)

Anyway, being this busy makes me a little bit crazy.  Crazy enough to forget how many months there are in a year.  (Did you now there are only 86 days until Christmas?!)  

So I was sitting in my doctor appointment last Wednesday, just waiting, staring at the clock, praying Ruthe wouldn't wake up and start screaming, and I noticed the calendar.  It was September 24th.  And this is how my brain processed that:

The 24th. 

Ruthe had her surgery on the 24th.

Hey, I wonder how many months it's been now! (gosh, so many!)

Hmm... July to August. One.

August to September. Two.

September to... No.

Wait, what?

There's a month inbetween there.  Right?  Isn't there another month before September??

JanuaryFebruaryMarchAprilMayJuneJulyAugustSeptemberOctoberNovemberDecember. 
((I repeated this like six times, until it sounded wrong enough to confuse me even more.))

July, August, September.

Seriously... SERIOUSLY?!!

Two.  It's only been TWO MONTHS since Ruthe's surgery?! 

What?  No.  Nope.

August to September.

Nope.  

Well... 

No.

Okay.  

I guess.

Yeah.  Two months.  That still doesn't sound right...

I should ask my mom.

---

You guys.  It's only been TWO MONTHS.  This girl.  This one right here:


Reading a book like a freaking toddler...

She had open-heart surgery - her THIRD open-heart surgery - two months ago.

That just blows my mind.  Time has gone so fast, it honestly felt like it had been at least three months, but I was expecting more like four.  Not two.  Two months is like, a minute.  She was not in the hospital a minute ago.  It's been years, decades.  Two months.

Only two.

She's a world champion warrior princess.  And I love her.

September 26, 2014

plastic surgery.

It's not as glamorous as it sounds.

Today we met with Ruthe's plastic surgeon to talk about her cleft palate repair.  She's about six months overdue for this surgery, so we're hoping to get on the fast track and be d.o.n.e. with surgeries and hospitals for a few years!

Her surgeon is really nice.  He tries to explain things in a way I can understand, but let's be honest - there's only room in my brain for one chapter of an anatomy textbook and the heart chapter is a big one!  So I absorbed about fifteen percent of what he said.

The main jist is that he'll repair Ruthe's soft palate by stitching the center together and opening the two sides a little bit to release tension and decrease the possibility of the wound reopening.  He also said something about whether or not her uvula is long enough and making a call during surgery between the two different ways to repair that... That's where he lost me.

She'll only be in the hospital overnight, which is really nice.  (Since she's still fed 100% by the gtube she doesn't have to start swallowing food before she can leave the hospital, unlike most kids and babies having similar surgeries.)

It will take her about three weeks to heal completely, and during that time her arms will have to be restrained so she doesn't get her fingers in her mouth.  Also no hard toys or food for the three weeks.  I can't even begin to imagine how difficult that's going to be for her... she LOVES to put things in her mouth.

We're really hoping everything works out in our favor and we can have this surgery done at Sunrise, like all her other surgeries.  It depends on how nice the scheduling department is about it and whether or not the ENT has privileges there (Ruthe will also be having tubes put in her ears).  We really just LOVE Sunrise Children's Hospital, and I don't ever want to think about Ruthe having anything done anywhere else.  However scary the neighborhood is at night... it's still next door to her cardiologist's office and that makes me feel so much better in case something happens.  So keep your fingers crossed that I can get my way!!  Haha.



And look at those TEETH!!  She's so cute.  

She's also a biter, so beware.

September 13, 2014

first in flight.

Ruthe should win some kind of award for being the best baby to take on a plane.  (Not the best baby to hang out in the airport, just on the plane.)

I was really worried about her being angry and uncomfortable and loud for the whole hour-long flight - but she was surprisingly we'll-behaved!!  She was a little loud when we first got on the plane, because she wanted to see everything and pull everyone's hair, but luckily the flight wasn't full and we got a whole row to oursselves so once I sat down she settled down.

I was SO worried about takeoff, because Ruthe's ears always hurt her like crazy when we drive up mountains.  The whole takeoff and climb was the funniest thing - Ruthe YAWNED.  Which (one) is just really funny and (two) probably helped her ears pop and saved me from her screams!

I was also smart enough to turn my camera on so she could see herself, which kept her narcissistic little self happy.

And then she fell asleep.  And she slept for pretty much the whole flight - until we landed.

After that I had to juggle an excited baby, her empty carseat, and a way-too-overpacked diaper bag all the way to baggage claim.

Where my parents were not standing waiting to relieve me of the craziest baby on earth.  Or get my suitcase off the carousel.  

Apparently the pilot was speeding all the way to Vegas and we landed about fifteen minutes early.  That's cool, because we got back sooner, and my parents were really only about five minutes behind us.  But when I woke up on Friday my left arm was killing me!!  Ruthe is getting FAT!

She's still the best thing ever, though!