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??

((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.





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.


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!!