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?!!