April 15, 2014

my little hobbit.

Ruthe's gastroenterologist (GI doctor, for her g-tube) recently changed the way we feed her.  Ok, so I might possibly have been feeding her less than she's supposed to be getting - but she stopped spitting up after every meal, so I figured it evened itself out.  The whole story is long and boring and involves a lot of math, but basically after I weaned her off the pump she lost the equivalent of one feeding.  So her GI doc said that we need to get another full-volume feeding into her schedule.  That means waking up extra early for me, and a whole new round of spit up for the baby.

I used to feed her about 175 mLs every four hours - at 9am, 1pm, 5pm, and 9pm.  It took about an hour to feed her (on a good day) but she was doing really well and tolerating all the force-feeding really well.  The thing about having a baby who's been tube-fed for her entire life is that she really has no idea what it means, or feels like, to be hungry.

Since her visit to the doctor last week I've been trying to squeeze another feeding into Ruthe's day.  It's not really that hard, but it's altered our schedule quite dramatically.  Especially the waking up part...  this is what her schedule looks like now:

7am -- breakfast + meds
11am -- second breakfast
3pm -- lunch
7pm -- dinner + meds
11pm -- elevensies

Because I think her doctor is training her to become a hobbit, and eat seven times a day.





April 6, 2014

utah, again.

I am a really bad blogger.  

I have good intentions, I swear!!  But it seems as though every time I sit down to write a post about what we've been up to, Ruthe decides it's a good time to spit up/cry/poop/need to eat... you get it.

Anyway, let's maybe just recap with pictures, okay?  Because I'm pretty sure that's all anyone really wants to see.


We went to Utah to spend a week with John at the end of March/beginning of April.  It was a lot of fun!!  Ruthe still had a funky cough, and I was a little sick the first couple of days, but it's just nice to be together as a family, so we toughed it out. :)

While we were there I tried to get a little more decorating done, and organize the tiny space a little better.  John and I are starting to realize that we really spoiled ourselves with our apartment in Idaho... you never realize how much of a blessing a second bedroom is until it's been turned into the nursery and you have to share closet space with a stockpile of diapers.  BUT how cute is the baby's room looking?!


I just LOVE those gold dot stickers!!  I did this wall, and I'm going to do the wall to the left with the closet doors.  I'm hoping I'll hate the closet doors less if they're fancied-up a little.  We still need to look into better lighting.  That's a $12 lamp, and the little shade things are always falling off.  It's just so bizarre to me that there aren't any ceiling lights in the bedrooms.

While I was there I got to meet up with my roommate Brittney!!  My roomies are some of my favorite people, but we all live so far away now that college is over. :(  So, if anyone would like to donate to the next Roomie Reunion, we'll accept all major credit cards and/or frequent flier miles!!  (because as much as we love you, Mikey and Meg, we are NOT driving to Alaska or Chicago. sorry!)


John also convinced me to buy a new couch while we were there.  He's been complaining about our couch since he moved there in August, and it was a little big for the space... I don't have a picture of the actual couch, but I did snap this cute shot while we were shopping!!


Those cheeks... they're irresistible.

Ruthe and I had to occupy the rest of our days with trips to Target and Netflix movies while John was at school.  We also took a lot of naps...


My mom and Teri came up to spend the weekend and drive home with me and the baby, and we had a lot of fun shopping and eating and playing with Ruthe!  By far, the best part of the weekend was going to The King's English Bookshop in SLC and meeting the author of some of the cutest baby books in the universe!!  


Ruthe now has the entire collection AND five of them are signed!!  Jennifer Adams was so sweet, and told us about two new books coming soon!  We can't wait to add them to Ruthe's library!

As wonderful as it is to spend time in Utah, our first priority is Ruthe's health, so we had to head home for a week full of appointments. :(

Luckily everything is still going well with her heart!  Her cough is finally fading away, and she's growing, so we're hoping to make it through April before her next surgery.  We do kind of need it to be done soon, so she can be cleared by cardiology to have her cleft palate repair done before she turns one.  If we have to wait too much longer than that Ruthe could struggle with even more speech and/or eating delays.  So keep your fingers crossed we get into surgery in early May! (that sounds awful, to be hoping for surgery... my, how our world has changed!!)

March 26, 2014

more ketchup.

Oh, March, how did you get away from me??

Sorry about that last post... I had made up some little notes that I hoped would jog my memory when I finally sat down to write all about John's trip home for spring break, but it didn't work.  I really need to get back in the habit of blogging as things happen. 

This girl is getting SO BIG!!  Let's not discuss the fact that she's already eight months old, and just focus on her deliciously chubby cheeks.


(Ignore the slobber, please.  She's like a fountain of gross sometimes.)

Her cheeks are the best.  They're smushy and pink and jiggle when the stroller goes over a bump.  Sometimes I steer her over bumpy ground for a lot longer than necessary because it's just so cute to see her cheeks jiggling.  The downside of those beautiful cheekies is all the slobber she can store in them.  Seriously, you don't wanna be around when we have to break out the bulb-syringe... 

It's not only her cheeks that are wonderfully chunky... she's got some pretty serious thigh-rolls, too!!


And homegirl is totally loving this warm weather that means she can go pantsless!!  She likes the freedom it gives her to get her foot all the way in her mouth while she's strapped into the carseat.

She LOVES her feet.  I haven't gotten a really good picture or video of it yet, but her new favorite thing to do is cry and whine until I've brought her all the toys she owns, and then start chomping on her foot and babbling to herself about how hilarious she is.  I really don't know why we buy her toys... she would be fine with a paper towel and her feet (one sock on, one sock off - preferably).

I love celebrating holidays with thig girl.  We were all a little funky-sick on St. Patrick's Day, and never left the house, but this was her SUPER cute outfit...


She wore that for her dad the Friday before, and the she wore this while we all lazied around the house on Monday...


And just to even things out, she wore green polka dots and her big St. Patrick's Day bow to the doctor on Tuesday.  She had to get two shots, one in each leg, for the flu/RSV.  Usually there are two nurses that do the shots at the same time, but this time she had to do one, stick on a bandaid, then do the other one, and stick on another bandaid.  Ruthe is not a fan of doing it that way.


In the past couple of weeks she's gone from 16lbs. 9oz. to a full SEVENTEEN pounds!!  Most of her doctors keep track of her weight in kilograms, which is super annoying, but they generally do the math for me right after.  If they don't, I look it up on my phone really fast so I know how much heavier 7.55 is than 7.1, or whatever it was the last time.  Sometimes if the nurses aren't looking I hit the button to switch it over instead, but not all the scales calculate the ounces for you, some just give you a decimal point which is almost worse!!  Can you tell that I hate math??

Anyway, we've seen her cardiologist at least twice since the last time I really posted anything on here.  He is great!!  We love Dr. Rollins!  He says that everything looks just how they all expect it to look at this stage.


Her stent is narrowing, because she's growing and it's stretching out, so her pressures will probably start to build up, or drop, or do whatever they do in that situation.  (You can tell I pay VERY close attention.)  That means her next surgery will be happening pretty soon... in the next month or two.  Dr. Rollins really wants to get past flu season before we take her back into the hospital.

Oh! And look!


WE HAVE A THUMB-SUCKER!!  Haha.  She really doesn't do this very often, but I just love it when she does!  

With the cleft palate, and being fed by g-tube, there are a lot of concerns that Ruthe will develop sensory issues with food.  But so far, she is doing fabulous!!  I realize that she doesn't look very happy in this next picture, but she really does like these MumMum crackers.  She still hasn't figured out  swallowing, but as long as she doesn't get too big of a chunk in her mouth, the little pieces will just disintegrate.  Or she sticks them out on her tongue and I have to retrieve them - depends on her mood.


Right now, and I mean that literally, right this second, as I'm holding Ruthe in one arm and typing with my other hand, she's got a a gnarly cough.  So far she doesn't have any other symptoms, so I'm just calling it croup.  She is on some breathing treatments, and I have some regular cough-syrup-type medicine on standby.  I kind if giggle when I think about giving her cough medicine through her g-tube because in my non-medical opinion, the best and most effective part of cough syrup is that it coats your sore, sick throat in its thick-but-burning-goodness.  G-tubes don't offer that option.


She is much more interested in what the nebulizer does now...  At least, if you interpret "interested" as "wants to lick everything".


Just look at that sad little pout!  She really hates being sick, but she sure is a trooper and suffered through an afternoon of shopping for some summery outfits.  We found the CUTEST swimsuit for her.  It's maybe the fourth one...

There are plenty more adorable and interesting things I could post tonight... but my hand is starting to cramp from all the typing and scrolling and binky-adjusting.

So I'll leave you with this last picture of Ruthe, playing withe one of her favorite things.


(This was earlier today, and it's the first time she's really torn the paper all apart like that.  Ugh, everything she does is just so disgustingly cute!!)

March 15, 2014

#orrfamilyspringbreak2014

Sat - John came home!!  Family snuggles.


Ruthe really was excited to see her dad... she just hates when I interrupt her daily activities with the camera.


This was the sweetest thing... except there wasn't any room left for me to snuggle :(


Sun - church. Dinner w/ gramma & Hunter


My dad went to the NASCAR race, and brought Ruthe home a new bib... It says "Spit Crew" and she definitely lived up to the job!!

Mon - trip to Town Square, smog check


Monday was just boring errands, and shopping for some grown-up clothes for John.  But we spotted (and tasted!) this adorable dress at The Gap for Ruthe for Easter...

Tues - day date at Nacho Daddy, RUTHE'S EIGHT MONTH BDAY


John and I are suckers for a photo-booth!  The nachos weren't too bad either.


I can't believe this girl is already EIGHT MONTHS OLD!!  How did that happen??



Wed - errands, shopping at Target & Gap (Easter dress!), Walmart, cupcake!

Ruthe and I had some time to kill in Boca Park, so we wandered through Target, and then hit up a different Gap store to buy that purple dress.  And it's a good thing we waited!! They were having their friends&family sale so I got it for 40% off!!

After shopping and running more errands we let Ruthe try another cupcake smash... she's always cute, but I think she's the cutest with her face covered in frosting!!



Thurs - endocrinology, breakfast, snuggles, CJ park day


Ruthe had an appointment early in the morning, which is mean of the Endo-clinic to only have early times available :(  But this girl LOVES to be naked and play around on crinkly paper!!


Fri - feeding specialist, basketball game for John's b-day


John was going to miss seeing Ruthe in her St. Patrick's Day outfit, so we celebrated a little early, and showed off her fancy leggings to the new speech/feeding therapist.


After a short debate, and a promise of an arena-junk-food dinner, John and I convinced each other that we should go to the UNLV and SDSU game.  Not that we have any real affiliations with the schools, but just because we're from both of the cities and he loves basketball.


Sat - goodbye.

John had some studying and cleaning he needed to get done before school started again on Monday, so he packed up and left on Saturday morning.  That is the worst part of this whole long-distance-family thing.  Someday (hopefully sometime in the summer!) we'll get to live together more permanently, and that will be AWESOME!!

February 25, 2014

alone, but not lonely.

Or should it be lonely, but not alone?

Either way, Ruthe and I had the house to ourselves last weekend.  My parents went to California on Friday, leaving us with a fully-stocked fridge and free reign over the TV until Tuesday afternoon.  

It's a rough life.

And somehow, miraculously, I only had to wash a handful of bottles/tubes/syringes.  When we were in Utah I felt like I had to wash all her stuff every single day.  We did start to run low on clean receiving blankets, though, and I almost - almost - had to do a load of a laundry. 

It wasn't a completely boring weekend.  Saturday was our first heart walk!!  The Children's Heart Foundation of Nevada puts on an annual "Walk with the Heart of a Child" to raise money for CHD research.  Since we never do anything alone, Ruthe and I recruited my bestie-friends and my brother to come with us.  It was really a lot of fun.  Or, as much fun as it can be walking around the mall before-hours in a winding and confusing path with a clunky stroller.  But I'm glad we went and got a feeling for how it will go next year. (I think we'll even make our own shirts! Team Baby Ruthe!!)



On Sunday I surprised even myself by getting up and ready and going to church with the baby!  We were even on time!!  And if you know me, you know that's practically a miracle!  Ruthe does so well at church, it's almost fun to take her!  It's definitely fun to dress her up!!  If only we didn't have to pack so much baby-gear...  But that sweet girl just sat with her auntie Teri and listened to the announcements, and the laid down to eat and take a little snooze.  Pretty soon we won't be able to let her lay down, because she'll be rolling all over the place!!  (Is it wrong of me to be excited that her next surgery will delay that even more??  I love that she's still such a baby and so dependent on me for mobility.  It's probably awful parenting.  Oh well.)


After church we were invited to crash a Dean family dinner and watch The Jungle Book.  I LOVE that movie.  I forgot how funny it is.  And it was so much fun to hear the Dean kids talk about it after, since most of them had never seen it all the way through.  I don't think Bella was very impressed... after all, there wasn't a princess.  ;)

Monday and Tuesday we just sat around the house all day.  I'm sure we had good intentions, but we just didn't have the motivation to get up and do anything. Although, I will say that any human being with more than one child to care for, that can regularly bathe themselves and their children AND accomplish any other task in the same day, deserves an Olympic medal.  

While my parents were away they demanded quite a few pictures of the baby.  And heaven forbid I send them both the same one!!  Haha.  It pretty funny, actually, because they're both so greedy with baby pictures that they'll never show each other the ones they have.  I tried to send them a video every day, too, just to keep the guilt of leaving us fresh.  Those are like gold!  And if I did forget to send one I could always count on a text right around bedtime to remind me - all it ever said was, "Waiting..."  

I love that they can't go to sleep without seeing the baby.  

sitting up and loving it!!

tummy time and hating it.

being squeezed into a too-tight home-made onesie.

refusing to wake up and get ready for church.

retaliation... she wiggled herself sideways during the night and woke me up with a swift kick to the head.  this girl is too sassy for my own good.


We also got some wonderful, fun, exciting, totally awesome news on Sunday morning... my sister-in-law had her baby girl!!  Sweet, beautiful Novalee made her much-anticipated debut a whopping twelve days past her due date.  She is spunky, and gorgeous, and absolutely perfect.  We can't wait to meet her!!

February 16, 2014

soosie and yiaya.

My Ruthe is named after her great-great-grandmother. We called her Soosie.

Soosie passed away ten years ago, on Valentine's Day. I can't believe it's been that long, or that my life-long dream of having a baby girl to name for her has already come true.

She was a beautiful, strong, intelligent woman. She set such a wonderful example for me, that I could do absolutely anything I set my mind to if I worked hard enough and stood up for myself. I really, desperately, hope that I'll be able to set even the slightest shadow of that example for my own sweet Ruthe.

Ever since Ruthe was born she's spent a lot of time looking up into corners and just past our faces and smiling, or talking, or just staring so deeply and intently that we just know there's someone there that only she can see.  I've always loved thinking that it's Soosie standing there, loving my little girl and cheering her along the road to recovery.  That thought would always give me comfort when I couldn't be at the hospital with my baby, or when she was in a procedure room that I couldn't be in.

The past couple of months, since my grandmother passed away have been especially heart-breaking. Yiaya should be here to watch my Ruthe grow up. To hold her hand and take her shoe-shopping and bring her little trinkets from her far-away trips. She should be here to tell her stories about Soosie and sit in the front row at her piano recitals.  



Yiaya loved Ruthe so much. She called to check on her progress at least every other day while Ruthe was in the hospital. She came to visit once or twice a week, just to see how much bigger Ruthe had gotten. She would find the sweetest little pajamas and bring them by, promising that they'd been washed without any dyes or perfumes and that she'd kept them in a plastic bag just so we knew there weren't any germs at all. She loved her. So much. And so perfectly. 

I can still remember the day I told Yiaya that John and I had decided to name our baby girl after her mother. She just lit up. She told me she was just "tickled" that we had chosen the name Ruthe. That she had thought how nice of a name that would be, but she wasn't going to say anything because it was our decision, and that she was just so tickled. 

Tickled. Who says that? It's such a silly, happy word. But that was Yiaya. She was just always so happy. And silly. She would say such funny things, and use different voices when she told us stories, and dance a little jig to make us laugh. 

Ruthe is going to miss out on a lot of wonderful things without Soosie or Yiaya here anymore. But I think she's probably thinking the same thing about us, right now. That we're all missing out on so much fun and laughter and love because we just can't see them, right there in front of her, smiling and dancing.

valentine's day 2014.

6:30am - I am snuggled in bed, warm and dreaming.  John comes in, bringing freezing air from the outside world into my cocoon. 
     "Sydney, wake up. My car was stolen." 
     "Ok." And then I rolled over and fell back to sleep.

I did wake up and try to be a voice a calm and reason while he dealt with all the emotions of having your car stolen. Frankly, I hate his car and was having a celebration in my head, so I probably wasn't as traumatized or sympathetic as he needed me to be. But he needed to get to school, so I got up and bundled up the baby to drive him up to campus. On the way he called and reported the theft and was told that stolen cars are usually recovered within a few weeks' time, generally after having been used in some (other) crime and dumped. Not exactly comforting, but I think it helped John relax a little bit. Salt Lake has a pretty good public transportation system, and John rides for free as a student, so we knew he had a way to get everywhere he needed to go. But that didn't stop him from looking at trucks for sale on KSL. 

I had spent all night (really really early morning) baking cinnamon rolls for John's school friends for Valentine's Day. But the hustle of the morning's events meant I couldn't package them up for John to take. They were so cute, too. I'm pretty bummed that the rest of the world will never see how adorable my PINK cinnamon rolls turned out to be in real life.  All I have as evidence are these funky pictures. But trust me, they were delicious!! 



I only made half of the recipe, because what the heck was I supposed to do with 24 cinnamon rolls? And I only have one baking dish... But I forgot to halve the frosting recipe. So I had twelve cinnamon rolls and FOUR POUNDS OF FROSTING. Cream-cheese frosting is good. Good enough to eat off of a spoon good. But it's not four pounds good.

John only had one class on Friday, so we picked him up around noon and got some KFC/Taco Bell for lunch. When we got home John said all he wanted to do was relax and hold the baby and play video games. And since his car was stolen I would have let him do pretty much whatever he wanted.

While he took care of the baby I worked on hanging more pictures and things in the nursery/office. I didn't get very far. After I broke the "H" that spelled out Ruthe's name I kind of lost all my motivation.


I did hang another shelf and a couple (maybe just one) more pictures. I kept running into complications with the nails not staying straight and frames not having wall-hanging-abilities. So I just gave up and snuggled my baby instead!

Surprisingly, around 3pm, we got a call from the police department that they'd found John's car! It was soooo close to our apartment. Like, only two minutes away in West Valley. I think that phone call was the most flustered I'd ever seen John get... he was so happy and relieved that he could hardly stand still enough to write down the address!!  When we got to the location there were two officers waiting with John's car to close the report so he could drive it back home. Apparently, if your car is stolen and you find it yourself and take it back without letting the police close the report you'll be pulled over and held at gunpoint until they can verify identity and ownership. Needless to say we were perfectly willing to sit and wait!!

It's funny the things you never know about until it happens to you. Like how we all sound like experts when we talk about Ruthe's heart, or what to do when your baby pulls out her g-tube for the second time in a week, or how we know what happens when your car gets stolen now. Life is the greatest teacher, right?!

Anyway, since all of our energy had been spent worrying about John's car and baking treats and being the most adorable baby, we decided that going out to dinner wasn't worth the effort of getting dressed up and cooking anything wasn't going to happen until someone cleaned up my mess in the kitchen.  So we picked up a heart-shaped pizza at Papa John's and some drinks from the gas station. John also stopped by an Auto Zone to buy "the club" for his steering wheel. 


We had a really nice night, all snuggled on the couch watching weird love movies and smooching Ruthe's chubby cheeks. Those heart jammies are some of my favorites! 

This Valentine's Day was so wonderful! Not just because it was nice to spend the whole day with John, but because we have this sweet, beautiful little baby, who has completely redefined what love means for our family. (The whole heart-baby/heart-day thing was pretty awesome, too!)