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 couldn't 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!!

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!


September 10, 2014

heart walk.

When Ruthe was still a tiny little baby and we were right in the middle of all the crazy surgeries and doctors visits and not knowing anything about anything I spent a LOT of time looking for other families like ours.  Instagram was a big help for that.  There's a hashtag for heart warriors that has so many pictures of so many kids who are facing the same things as my baby... through #heartwarrior I found a mom with a blog where I felt a little more comfortable commenting and asking her about how things were going.  She was so nice and understanding.  AND she directed me to a group called Intermountain Healing Hearts that's based out of Utah.  Since our plan is to eventually move here permanently to be with John I sent in the application to join their facebook group.  It has been SO AMAZING to have a place where I can go and vent about "heart mom" things, or ask questions about something that might be too far out of the ordinary for my other momma friends.


Anyway, every year IHH does a big fundraising heart walk and it just happened to be over a weekend that I could be up in Utah for it.  John was a big sport and woke up early for me on Saturday to go.  Since I'm so socially awkward and shy I didn't introduce myself to anyone like I wanted to, but it was still a great experience to go and see all the people who love these heart warriors and want to raise awareness in their community.



After this walk and the walk we did way back in February I've decided that we need to have our own shirts made for Baby Ruthe!!  It's so cool to see everyone in the same shirt that's made just for the walk, but I just LOVE  to see all the different personalized shirts that families have come up with to support their kiddos!

the zoo!

While Ruthe and I were in Utah this time I thought it would be so fun to go to the zoo as a family!  My mom always talks about Hogle Zoo and how fun it was when my brothers and I were little, so I thought we'd see what Ruthe thought!

She's still a little young to really get it - mostly because she's so distracted by everything else we can't get her to look at any animals!

But we bought a new "big kid" stroller, and she really loved getting to sit up and see everything!





She really is the cutest baby in the world.



playdates.

One thing I was most excited for when I was pregnant with Ruthe was all the playdates.  You're laughing, I know, because you know that I'm an incredibly antisocial person!  Well, you're right.  BUT my best friend had a baby just three months after I had Ruthe, so it was p.e.r.f.e.c.t!!

Ruthe and Scarlett are destined to be best friends!  Aren't they just so cute hanging out together?


Scarlett is awesome, and so mobile that I know it makes Ruthe jealous and want to figure out crawling!  It's also the perfect excuse for me to get to hang out with Julia!! 

sometimes I blog.

And sometimes I decide that I hate blogging on the iPad or laptop or my parent's computer and I wait and wait and wait until I'm in Salt Lake so I can blog from the iMac.

So let see... where did we leave off??  RUTHE'S BIRTHDAY!  That was almost two months ago - sheesh!!

After her party we kicked it into high gear to get ready for her next surgery.  This time around we were ready, and a little more relaxed.  It kind of scares me to think that open-heart surgery is turning into a "normal" thing for us.  Like, I don't think I'll ever be able to work up enough nerves to be a concerned parent if Ruthe or any future babies need any other kind of surgery.

Did I ever tell you that the day she had her g-tube placed I left almost immediately afterward for my own doctor's appointment?  For some reason that makes me feel like a terrible person...

ANYWAY - back to the real story.  Ruthe's third open-heart surgery was a modified Rastelli procedure.

This is the best picture and explanation I've seen of the real Rastelli - but Ruthe's was juuuust a little different.

Because Ruthe's aorta and pulmonary artery were already combined to form one mega-artery, when they closed her VSD the right side of her heart wouldn't have any output.  Yikes!  So to fix that they put in a Contegra.  It's a vessel/valve taken from a cow's neck and connected from Ruthe's right ventricle to her pulmonary branches.  That way the blood from her body can be taken to her lungs, oxygenated, and then pumped into her body.  This surgery (and it's success!) means that Ruthe has a two-ventricle heart.  Just like she's supposed to!  It might have taken a while to get there, but we made it!

Her surgery went so well.  There was a little concern that she might need a pacemaker, depending on how well her VSD closed (whether or not there was still a good amount of blood flowing into her aorta) but there ended up being no issues - so no pacemaker!

She spent 11 days in the hospital this time.  It felt like it just flew by!  Her recovery went almost as well as surgery.  There was just one little hiccup when they started her feeds back up.  Apparently surgery can sometimes affect the lymph system, which can in turn affect the way the body releases fluid.  There's always a good amount of fluid build-up around the lungs and heart after this kind of surgery, but it starts to diminish after a few days.  When the lymph system gets confused, and they start feeding you again, the fluid starts right back up, and it generally has more fat in it than it should.  To remedy this problem, they switch Ruthe to a formula called Portagen.  It has medium-chain fatty acids (instead of long-chain ones) and for some reason that does the trick.  She has to stay on that formula for six weeks, to make sure the "leak" has fixed itself.  We're on our last can of Portagen and then she'll be on Pediasure +Fiber.  I'm REALLY looking forward to the switch because the Portagen is s.t.i.n.k.y!!  


They also thought that she might need to come home on a little bit of oxygen.  I was not excited about that!!  After her surgery, while she was still on 100% oxygen, the cardiologists said that she should be anywhere from 92% and up.  Well, that's what the PICU staff wrote down and that's what they were sticking to!  Luckily her surgeon came in on Sunday morning to check on her (we were planning to go home that day, but had to wait for Ruthe's home health company to deliver oxygen) and he said she would be fine anywhere from 84% and up!  Since she had been satting around 89% whenever we turned off the oxygen that meant everyone was happy and we could LEAVE!

It felt a little like a jail-break.  We packed her stuff up so fast and were out of there as soon as I could sign the discharge papers!!  Seriously - she had a dose of aspirin due right around the time we were leaving and the nurse walked in with it right as we were clicking the carseat on to the stroller.  It was awkward for a second, but I said I'd give it to her at home AND THEN WE LEFT!!


For some reason it's always rainy when Ruthe's in the hopsital, and the day she left was no different.  But as gloomy as it felt outside we were all just giddy with excitement!  This was the last time (fingers crossed, knock on wood) that she'll be in the hospital overnight for the next couple of years!!


July 22, 2014

firsts and thirds.

Ruthe is one.  ONE!!  I can't believe it.  One just feels so big - and she is not so big.  She is tiny.  Teeny tiny.  And she's going to stay that way forever.  We've already talked about it and she's totally fine with never growing up.  I think, she just sort of stared at me the whole time.


Her first birthday was a BLAST!!  If you haven't already seen her priceless reaction to a Slurpee you're missing out!!  It's on Instagram somewhere... #rutheturnsone

John was able to take the weekend off and fly down to be with us.  He has to miss a lot, but his daughter's first birthday was a no-brainier!  She loves him - it kinds makes me jealous.



Her big birthday bash was the day after her actual birthday and it was so.much.fun!  We had a super fun pool party and my parents rented a big bouncy-house/water-slide!!  All the little cousins had plenty to do, so the grow-ups could enjoy the delicious tacos and desserts!




The next day at church we probably weren't as reverent as we should have been - but it's always so much fun to have the dad there with us!!




After John went home we had to start getting things ready for Ruthe's THIRD open-heart surgery!!  She had finally gotten to the point that it was better to do the surgery than wait any longer, and flu season was over, so it was really the perfect time to go.

This time she'd be having a modified Rastelli procedure, and they'd close her VSD.  If you look up that procedure it says it's a repair for double-outlet right ventricle hearts, but the way that Ruthe's heart has been set up from her last two surgeries was pretty close to what that would look like, and so it's really the perfect fit for her.  It will depend on how everything goes during surgery before we know whether she'll need a pace-maker now or possible a little later.  We're definitely hoping that she won't, but after talking to the surgeon about it we feel a lot more confident that having a pace-maker won't really affect her overall quality of life, or even the day-to-day.

Well, I'm sure I'm forgetting a lot of details about her birthday and the days leading up to her surgery... But I'm lazy and I forgot to blog about it while everything was fresh in my mind!!  So here's a cute picture of Ruthe to make it up to you.






July 5, 2014

the fourth.

This was Ruthe's last first holiday.  A little bit heart-breaking...

But she's stinkin' adorable, so I'll get over it!!


 


We didn't do anything overly festive.  Just some shopping with friends in the morning, hotdogs for dinner, and a little firework action in the backyard once it got dark.  Ruthe was not exactly impressed with the firework we did, and I couldn't even get her to look in the general direction of all the big firework shows... maybe next year!!

How do you like my dad's new shed??  Pretty perfect for these holiday pictures, right?!!

June 29, 2014

solo.

Last Tuesday, Ruthe and I left on our trip to visit John for a week.  This was the FIRST TIME that I was "allowed" to drive the both of us to Utah.  It was an adventure.

FIRST - Let me just say that families who roadtrip with infants are crazy, incredible, out-of-their-right-minds superheroes.  Ruthe is NOT a pleasant driving companion.  [granted, neither am I, but that's beside the point.]  She will tolerate the car for about 45 minutes, maybe an hour if she's happily distracted by something.  After that, it's all downhill. 

Knowing this from our past drives I was prepared to make several stops.  Even planning to spend the night at my grandparent's house in Cedar City to cut the drive into two big chunks for Ruthe.  And my friend lent us an awesome iPad holder that hangs on the headrest so Ruthe could watch a movie - that was a lifesaver!!

So, we left Las Vegas at about 4:30pm happy and comfy with a bink and a teether, watching Frozen.  By the time we got past the Speedway she was starting to get grumpy, but I had an arsenal of toys in the passenger seat, ready to distract her at the first cry!  Those lasted until Mesquite.  So we pulled off the highway and took a break at McDonald's.  French fries can make anyone's day better!  After about 20 minutes we got back in the car, restarted the movie, and replenished my supply of baby-distractors. 

We were OK until St. George.  Have you ever driven over Black Ridge with a baby who can't swallow?  It's not a fun time.  Before our first roadtrip I did a lot of "research" about taking babies on long drives.  Pretty much every single article I read said to give the baby a bottle or sippy-cup when you had to drive over mountains, because all the swallowing would help pop their ears and relieve that pressure.  Ummm... cool.  We can't do that.  So we just suffer.  I sang every song I know at the top of my lungs, I tried to shush louder than her crying, and I drove a lot of the way one-handed dangling toys and binks and empty water bottles at Ruthe in an attempt to calm her down.  [don't tell my dad!]  By the time we got into Cedar City I was out of ammunition and she was just d.o.n.e.  So, in true loving-mother fashion, I bet her a dollar that she'd be asleep by the time we pulled into my grandparent's house.  Now, she was still screaming as I took the exit off the highway, but in the two minutes it took to get from there to the house she was out.  I still haven't decided what I'm going to buy with my dollar.  ;)

This trip we got to see my grandma, auntie Summer, and cousin Drew.  They all pretty much look straight past me and directly to the baby, but that's ok - I'm getting used to it!  Ruthe LOVES being the center of attention.  She loves getting snuggled and smooched!

We woke up bright and early to get the day started.  I fed Ruthe some breakfast, and my sweet grandma made some pancakes and eggs for me!  And then we got back on the road, at about 10:30am.  When I stopped to gas-up the car I decided that Ruthe probably didn't want to see Frozen again so I set the iPad to play a slideshow of all her pictures.  There are one THOUSAND pictures on the iPad, and I'd sat that at least 950 of them are of the baby.  She is quite the little narcissist, and so she was just in a little baby-Ruthe-filled heaven. 

She did, however, remember how much she hates being in the car much faster that time, so I had to start using all my "keep the baby quiet" tactics sooner than I'd anticipated.  I also kept promising her that we would be getting off the highway soon, thinking the next exit was the truck stop at Scipio.  I wanted to stop there because their bathrooms aren't terribly disgusting, and there's a little petting zoo that I thought would be nice for Ruthe.  It's just small, and across the street from the gas station, but they have a camel and a zebra that you can see pretty well without having to actually walk into the "petting" area.  They also have some llamas, but I couldn't find them this time.

After Scipio Ruthe wasn't terribly grumpy.  I think she had just resigned herself to being miserable, and was ignoring me for the rest of the drive.  I thought about taking another break in Provo, but that's just sooo close to home that I couldn't make myself get off the highway again.

Luckily, John was able to get off work early and was waiting for us when we finally drove up to the apartment.  It was quite the adventure, and I'm not looking forward to the return trip [that we're going to make all in ONE day] but it was a really good, accomplished feeling knowing that I am perfectly capable of going on a solo roadtrip with Ruthe!!

June 23, 2014

sometimes...

Sometimes you just have to let the day take you wherever it wants to.

And sometimes that includes a baby playing in her own spit-up.  


Sometimes. 

June 18, 2014

eleven.

My baby is eleven months old.  ELEVEN!!  That's almost a full year.  I can't believe she's already so big!!  It's hard to imagine this spunky girl:


... was ever in this position:


I could talk about this sweet babe for hours.  Literally.  She is just the best little thing.  Even on days like today, when she spends 95% of her time screaming and whining and grabbing at everything but the things I offer to her, and the other 5% sitting quietly on Grandpa's lap, like a perfect angel-baby.

I had my friend take some "one year" pictures of Ruthe last week.  We wanted to have it done early, in case she had to be in the hospital on her actual birthday, so her sassy little personality would shine through!  And so she could/would sit up on her own... Here's a little sneak-peek - because I just can't help myself!!


((she's not naked... her little pink shorts just aren't showing from this angle.))

I can.not.wait. to see the rest of the pictures Alisha took!!  She always does an amazing job!

Like these pics from in the NICU... I don't think I've ever really posted them...




Oh, my heart is melting.  Why do babies have to grow up?!!








June 3, 2014

heart catheterization // angiogram // trans-esophageal echocardiogram

Ruthe had a heart cath on Friday.  And she totally rocked it!!  Her doctors wanted to get some more accurate measurements and images so they could plan for her next big surgery.  

We got to the hospital at about 5:45am, got our "members only" wristbands and then sat and waited for a nurse to bring us back into pre-op.  I've decided that the surgical staff just wants to psych you out before surgery... because all they did in pre-op was have me change Ruthe into a hospital gown, get her height, weight, blood pressure, and oxygen levels.  And then we just sat there.  Oh, right, a nurse asked me like thirteen questions about Ruthe's life at home and development.  



Then the anesthesiologist came in to tell me how they'd put Ruthe to sleep, manage her pain, and keep her asleep.  I warned her (Dr. Wang, who looks almost exactly like Lucy Liu) that Ruthe is a tricky stick for IVs, and to be prepared.  She said she'd be careful and try to get her on the first try (both hands and a foot later...).

Dr. Galindo is Ruthe's interventionalist.  He has done both her caths, and placed the bands on her pulmonary arteries in her first open-heart surgery.  He's really nice, and always explains things carefully, and always makes sure we're on the same page.  After he came in to get the consent signed we took Ruthe into the cath lab.  They let me carry her there and hold her hand while they used gas to put her to sleep.  

And then I got to sit and wait. For three hours.  So much fun.

After the whole thing was finished Dr. Galindo came in to tell us everything went perfect and then Dr. Wang took us back to see Ruthe.  That poor sweet baby.  After a cath you have to be on bed rest for at least six hours.  And you can't move the appendage (in this case Ruthe's right leg) or sit up or roll over or anything.  So my baby was basically strapped to the bed, and we had to hold her down of she tried to get up.  :(



Luckily Ruthe is a fast-learner and stopped fighting us after a few tries.  Her nurse during that six-hour stretch was very impressed that a 10-month old would be that still and quiet.  She had about seven other patients in recovery while we were there, mostly boys for circumcisions, and a couple other random things, and they ALL cried like little babies.  (OK, so they mostly were little babies, but the biggest complainers by far were the two boys, around six or seven, who spent the whole time just wailing!!  Ruthe literally rolled her eyes at them - she's got sass.). All of the other patients were only there for around twenty minutes, so we were pretty much constantly entertained.



All-in-all the day went fine.  It was long, and exhausting, but we are one step closer to being done with surgeries for at least a little while, and that made it all worth it.

OH!  And John surprised us by driving down for the weekend!!  He's pretty much the best thing ever!!


((That pic is from lunch on Saturday, in case you were worried about Ruthe's recovery at home. It was nothing a little dad-snuggling and soda-sipping couldn't cure!!))