September 24, 2013

two weeks home.

How has it been two weeks already?!!  I'm not complaining... Ok, I am a little bit, but only because time is going by sooo fast!!  I feel like my baby should be a teeny tiny newborn still, but she's getting so big and so non-newborn-y.  It makes me sad.  

We scheduled her next surgery this morning, for October 10th.  If someone could please invent a time machine before that, so I don't have to live through another horrible day of waiting, that would be fantastic.  This surgery is going to be pretty major (we think!)... the doctors still aren't completely sure what it is that they'll be doing, whether they'll go ahead and repair her whole heart, or break it up into a couple of staged surgeries.  The whole idea of what they'll need to do is still way over my head - but I know that her doctors and surgeons all know what they're doing and have Ruthe's best interest in mind.  I mean, they're factoring in what her potential lifestyle will be limited to depending on which direction they go... it all just boggles my mind.

The surgery date also means that she'll celebrate her three-month birthday recovering in the PICU... so, once again, no cupcakes.  :(

Luckily, we've been able to pack quite a bit of activity into Ruthe's short time at home.  Let's see what I can remember from the past two weeks...

Her first Saturday home was the Walk in Memory - Walk for Hope event in Green Valley.  Last year we lost my cousin CJ to suicide.  I've never actually talked about it out loud.  CJ taught me how to snowboard.  He hired me at the Abercrombie he was the manager of, even though it was technically against the rules.  He helped me shop for wedding shoes when he worked at Nordstrom. CJ always made me laugh, and although thinking of him now mostly just makes me cry, I'm so glad that I have my handful of memories to hold on to.  This walk was a great experience.  I'm so glad that I was able to go with my family and support suicide prevention efforts in Las Vegas.  Ruthe, on the other hand, slept the entire time.  Lazy bum.

The next day was Ruthe's first day at church.  And can you believe that we didn't have any dresses for her?!  We had to go shopping last-minute on Saturday to get one!  Ever since she was born we kept putting off buying anything really adorably for her because we weren't sure what size she'd be when she finally came home.  Poor planning, I know.  But don't worry, we found a super cute dress for Sunday, and a few more for all the future days at church!  :)

Oh, did I mention that she slept through that experience, too?

The next week was a little easier to manage, since we'd survived through pretty much everything she could throw at us.  (I'm still working on our sleeping schedules, though.)  We had some very anxious visitors named Matilda and Paizley who have been ready to see Baby Ruthe since they found out she was going to be a girl!!  Seeing Ruthe in the arms of a second-grader makes her look gigantic!!  

Let's counteract that with a picture of her and my 6'8" brother... now she's so tiny!  Much better!!

Ruthe had her first follow-up appointment with the cardiologist on Monday.  He did an ultrasound, and had them do a quick blood test.  They just prick her heel, but then they have to squeeze out enough blood, and you can just tell that Ruthe HATES it.  She had those tests done all the time in the hospital. And others like it.  In fact, I'd say that she had her poor little heels pricked on average every other day.  At least they have cute bandages at the doctor's office...

Wednesday was our friend Teri's birthday, so Ruthe dressed up in her fanciest little ladybug outfit to go and visit!  We love our Mama T - and can't imagine what our lives would be like without her!!  :)

The only downer part of Wednesday was that Ruthe had to have some blood drawn for a handful of tests that her pediatrician ordered.  And by "handful of tests" I mean enough to require an actual IV line, instead of just a couple heel pricks.  It was kind of a miserable experience.  I don't even like seeing a needle go into my own skin, but I've learned to just tough it out for Ruthe because she needs to have what little comfort I can give.  It took the lab techs four tries before they hit a good enough vein to get all the blood they needed.  :(  My poor baby was so brave and strong!  She only cried a little bit, when they were holding her arms so stiff.  I had tears welling up in my eyes just watching her, I'm surprised I kept it together through everything!  Once we got home I just let her cry it out while we snuggled.

Ruthe is really starting to let her personality shine through.  When she's not asleep, that is.  I try to just watch her pand savor the moments when she's smiling and being her adorably silly self, but I also know that I need to capture those moments in pictures and videos to share with John.  Being away from Ruthe (and me, but mostly Ruthe) is so hard on him.  I can tell him about the funny things she does, and we can skype and FaceTime, but I know all he really wants to do is hold her and snuggle her and kiss her little face.

I've been sewing button-holes into Ruthe's onesies, to accommodate her g-tube.  I has really expanded her wardrobe!!  We figured that she'd only be wearing any of these onesies a handful of times anyway, so why not make them work for us, and not against us?!  The first couple tries were pretty sad and ugly.  But now I know the best location, width and process for putting it in.  Trial and error is sometimes the best way to handle things like this.

Last, but not least, is Ruthe's very first dress-up costume!!  Teri had a 50's themed party for her birthday, and while the invitation said costumes were "optional" we couldn't pass up the opportunity!  My mom made a circle skirt for me (because even though I talk a big game, I really hate sewing from a pattern) complete with a tulle slip!  And I made a little matching skirt for Ruthe.  Then we ironed-on some monograms to our shirts to get the complete look!  Adorable, right?!

I also made a full-on, layered Jello mold.  Very 50's housewife-y.  You can search Facebook for that picture.  I'm not going to make it that easy for you all to tease me!!

That's it for Ruthe's first two weeks at home!!  I'll try to get on a real computer and post the handful of videos that I have of her being especially cute!

Until then, keep us in your thoughts and send good vibes to her doctors we can get this surgery out of the way and move on with our lives!! :)

1 comment:

  1. Love, Love, Love you guys!!! Kiss her for me today!