December 15, 2013

new goals.

These are not New Year's Resolutions.  I don't believe in those.  These are simply a few goals that I have for myself that I will start working toward after the holidays.  (because nobody can change their habits when there's fudge on every table...)

goal one:  Eat better.  I really need to back away from cheeseburgers and fries.  They're sooo delicious, but soooo bad for me.  So I'm going to start eating less red meat.  Like, none.  (sorry John!)  And start integrating more fruits and vegetables into my diet.  Oh, and less candy and junk food, too.

goal two:  WAY less soda.  I'll never be able to stop altogether.  I just love it too much.  But I can stop drinking it at home, and limit myself to one-soda-but-no-refills at restaurants.  

goal three:  Move to Utah.  This one depends mainly on Ruthe and what her doctors think about the idea of spending the majority of our time in SLC.  We won't transfer her care up there until after her birthday, butte can and should be spending the majority of our time in the same state as her dad.  We miss him, a lot.

goal four:  Bust out the DSLR and take better pictures.  Now is the only time on my life I am ever going to have the opportunity to really get to know my cameras.  I want to be able to take frame-worthy pictures as my baby grows up.  And once she's mobile I'll never have a moments peace again!  I need to stop relying on my cell phone and it's lack of memory.

goal five:  Exercise.  Ugh, gross.  This is my least favorite of them all.  But I need to do it.  I need to get rid of my baby belly so I can fit back into my jeans.  Anyone know a good workout DVD?  I'd actually really love a recommendation for a baby&me workout, if anyone knows about those.

Alright.  There you go, internet.  Now you can hold me accountable.

more or less.

I feel like Ruthe has been home for a very long time.  But the truths is: she's still spent more time in a hospital bed than her own crib.

83 days, total, spent at Sunrise Children's Hospital.

And only 75 days spent at home...

But don't worry. This year for Christmas Eve, I'm getting a very special present.  I'm getting my baby at home.  Snuggled in my arms.  With her dad right next to us.  For the 84th day.

That's right.  It's going to switch for Christmas!  I'm pretty excited.  It will kind of make me feel like all of that surgery-nonsense is behind us.  That will be nice.

five months old.

This girl is growing up too fast!!

I'm not ok with having a five-month-old.  Although it helps that she's still such a weakling and wants me to hold her three seconds after I lay her down on her belly. :)  I love a snuggly baby.  Tummy-time is overrated, anyway.  We like flat heads.  She can skip rolling and crawling if she wants.  Sitting and walking sound like more fun.  We'll just go straight into those lessons, thank-you-very-much-miss-physical-therapist.

Ugh, I wish that could all be true.

"Neck-xercizing" is so much work.  I have no idea how I'll react when we have another baby and they just miraculously start holding their head up one day.  And enjoy being on their belly.  And teach themselves all kinds of new skills without a training regimen.

To start, we aren't supposed to let Ruthe be on her back at all when she's not asleep or in the car seat.  She needs to always be on her side, with the top foot touching the ground (even if I have to hold it there), and both hands in front of her reaching for toys or my face or anything.  She also needs to spend a significant amount of time (that's really only 5-10 minutes a day) on her belly with her head up, and in an upright sitting position.  The bouncer, swing, and hoppy don't count.  That's too reclined, so too much like laying flat on her back.  She we put her in the high-chair... with five kitchen towels rolled up and stuck every-which-way to hold her steady.  It's quite the production.

And how do you think Ruthe feels about all of this??  She hates it.  HATES it.  I don't blame her.  I love laying flat on my back too.  And I would really love to be able to just close my eyes and fall asleep anytime someone tried to make me do something I didn't want to do the way she does.  It's actually quite impressive... 

But I can't just sit here and complain that all of these things are just awful and produce no results.  She is getting stronger and smarter every day.  Today was the first time we out her in the high-chair, and I'm pretty sure she loved it.  For the first minute, anyway.  She just sat there and stared at me and held her head up like a champ.  And then she realized we were just going to keep staring at her and smiling like a couple of crazy-people, and she got really mad really fast.  She took a little nap laying on her side today, too. Which I totally count as exercising.  Hopefully she'll have made more than just a little progress at her next physical therapy appointment.

In other news, we started trying to feed her rice cereal.  She hates that, too.  But she won't keep a bottle in her mouth once she realizes that there's milk involved.  I'm running out of options for oral-feeding.  Maybe I'll try something extra delicious... like chocolate frosting!!  Nobody would cry with that in their mouth!! 

Ruthe is also quite the chatterbox, once she gets going.  She will just lay there and talk like nobody's business sometimes.  It's so cute.  

I just love this girl.  She has definitely caused plenty of stress and worry and sleepless nights, but the smiles and sweet snuggles make it all worth it.

December 10, 2013

the feeding pump of doom.

I have a love/hate relationship with Ruthe's nighttime feed.

It's continuous.


And it has to run from 9pm to 7 am, or else our day is pretty much shot. (ok - it could also go from 10 to 8, or anything in between.) That just makes her daily feeds a little more wonky than I like for them to be. I also have to refill the bag of formula every 4-5 hours. And wake up to give her a dose of medicine at 2am. I try really hard to coordinate those two things so I'm only waking up once during the night... But sometimes, like tonight, I end up just staying awake until 2.

In my defense, the past two nights I've been reading and completely lost track of time. Oops.

Anyway, back to the point: I hate the stupid pump. It clogs, makes annoying sounds all night, and the screen is always lit.  Oh, and when something "clogs" the line the stupid thing beeeeeps so loud it wakes up the baby.  (Kind of defeating the purpose of gaining calories without using them when she's screaming her head off.)  the worst part is that nine out of ten times there isn't really a clog in it at all!

I can't wait for the day we get to stop these nighttime feeds... but don't hold your breath about it for me - Ruthe still has a long way to go before she'll be considered a healthy eater.  :/

December 5, 2013

something sweet.

Having Ruthe around has been a wonderful blessing these days.  It's really difficult to wallow in our grief while this sweet girl is near by.  She has been such a calm, happy, talkative baby all week.

It's been quite a while since I gave anyone an update on her, so let's see if I can remember all her recent stats...

weight: 13 pounds + anywhere from 5 to 12 ounces.
length:  24-25 inches.
no one's actually told me her head circumference yet, but I know it's around the 50th percentile.
still fed 100% by g-tube.
still has a cleft palate (surgery for that should be around 8-12 months old).
we're HOPING she'll only have one more open heart surgery this year, but it could be two.
everything's still looking good from the last one, we're just waiting to see how it does and if her aortic valve grows.
not addicted to morphine anymore!! but I have a feeling she might get hooked on tylenol when she starts teething!
starting to hold her head up more and more during our little tummy-time sessions.
still hates the car seat.
watches me when I get up and walk around.
gives EVERYONE the stink-eye.
will sometimes-almost-kind-of-but-not-really roll herself on to her side when she's super mad and crying.
is the most adorable thing in the universe.

I still think she looks exactly like her uncle Tyler, but sometimes, just sometimes, I think she might be starting it look a little bit like me!  (sorry John!)

Speaking of John... we got to see him over Thanksgiving!  And he got to enjoy the wonderful experiences of Ruthe's day-to-day schedule.  Meds, feedings, diapers, clothes, more feedings, more diapers, and lots and LOTS of snuggles!!

And this happened: 

He loved it!! Ruthe loved it, too!  :)

December 1, 2013

My grandmother passed away over the weekend.

It was sudden, and it was a shock to our family.  She has always been so healthy, so vibrant, so full of life.  She was a beautiful person, through and through.

I am so grateful that she spent so much time visiting Ruthe in the hospital and coming to see us at home these past few months.  It was time with her that I took for granted, but now I'll always have these beautiful memories and pictures to treasure, and, best of all, to share with Ruthe.

We love you, Yiaya.  And miss you terribly.

LV Sun article
Review Journal obituary