September 30, 2013

so glad when daddy comes home.

John got to visit us this weekend!!  It was just the best.  We spent a lot of time snuggling together as a FAMILY.  I think we may have grossed-out my parents just a little...

This was the first time John had gotten to see Ruthe since she came home, so you can imagine how awesome it was for him to get to hold her without any extra tubes and without all that stupid isolation gear!  He said he was excited to see me too, but I didn't really believe him.



He drove in form SLC on Friday evening, and we just sat around the house, holding Ruthe, and telling each other how awesome she is.  I mean, she's pretty awesome, so you can see how that would take all night!

On Saturday morning we woke up bright and early to have some family photos taken by our friend (and AWESOME photographer) Alisha!  She was soooo nice to take our photos even though I just barely asked her a couple days before.  And then again when I switched locations at 1am they day of!  I am so excited to get the pictures back, because it know they're going to be awesome!!  (Even though Ruthe is the world's floppiest baby and probably looks like a limp pancake in all of them.)



After the photoshoot we headed home to take a nap.  Family naps are going to be mandatory once we all love in Utah so we thought we'd get in some practice!  Ruthe and I woke up first (ok, Ruthe started waking up first and I fell for it.) so we wandered out to the living room to let John rest a little longer.  The rest of Saturday was more lazy, boring, totally awesome snuggle time on the couch.  John did a little homework.  Ruthe showed off her kicking skills.  I just soaked up all the glorious two-armed time I could before John handed her back with a stinky bum.  

We went on a date to Lucille's BBQ.  The food was just ok.  And I do NOT recommend ever taking a stroller in there!  But they had some peach lemonade that was so delicious I wanted to take a bath in it!!  Seriously.  Go and try it.  It's that good!  I even took a picture of it to prove it to you:



Sunday wasn't supposed to be lazy.  We were supposed to wake up and go to church.  But we "accidentally" slept in because I turned off the alarm too soon.  Oops!!  So instead of being spiritual we just hung out on the couch.  Ruthe and I were forced to watch football.  And John forced her into a football onesie.  It made her look like a boy.  :/





John had to head back to school, and I think it was the hardest goodbye we've ever had.  Getting that little taste of what it's like to be a real family that lives together and everything was awesome!  And having to watch him drive away was the worst.  I can NOT wait for Ruthe's next surgery to be over and for her to be recovered so we can move to Salt Lake to be with John.  As much as we know that this is the best arrangement for us right now, we are just anxious to try and regain some sort of "normal" in our life.


September 28, 2013

trending up.

Ruthe had THREE doctors appointments this past week! And each one of them went well! 

Aside from scheduling her next surgery and sending us right back to that dang hospital, she's right on track from a cardiology standpoint. We won't really know how much of her heart they'll work on until Monday or Tuesday, and then that can always change in the operating room anyway.  I'd really love it if they could just get everything worked out in one shot, but they might have to do a couple staged surgeries.  Since Ruthe decided to grow her heart a little crazy, and it's not really one of the defects that has a go-to surgery, her surgeon will have to combine a few different procedures (from what I understand anyway) and he'll either do them all on the 10th or do part of it now and another part later. It could take as many as 3 procedures to finish the job.  But then, fingers crossed, she'll be done with heart surgery until she's around 2 years old.  Then we'll get to start worrying about her cleft palate repair - oh, joy.

This appointment was a little different because they did an EKG in addition to her regular ultrasound.  It was a whole new experience for all of us.  And Ruthe was not a fan.  Especially since the little stickers wouldn't stick to her skin so they had to tape them all down (and then peel all that tape off).



The next doctor was her pediatric surgeon.  She said that Ruthe's g-tube site looks great, and put in the order for her mickey button. That will make it so she doesn't have to have a tube sticking out of her 24/7. (My mom calls it her tail... weird.)  The mickey button is sort of like the plug on an inner-tube, and lays pretty fat on Ruthe's stomach.  Once she gets that we'll be able to start tummy-time and letting Ruthe lean more to each side, getting ready to roll over.  (Of course, that will all be put back on hold after her heart surgery, but we can at least give her a little taste of different positions!)  

And lastly, the pediatrician said Ruthe is doing great! She weighs a full ELEVEN pounds, and is following the same growth trend as a"normal" baby.  It looked to be that she's around the 50th percentile, but I don't know if that chart was for heart babies, or preemies, or healthy babies.  Ruthe also got her 2-month shots at the pediatrician.  She HATED it.  I know I shouldn't have laughed, but it was just a little amusing that the baby who's had open heart surgery, gets her heels pricked once a week, and can sit through having her blood drawn, would cry so hard over a few measley shots.  It makes me feel bad that I know she's going to need the special once-a-month flu shots they give all babies at risk for RSV.  :(

We got Ruthe one of these fancy pacifiers called a Wubbanub.  It's one of the green hospital soothies sewn into a small stuffed toy, think beanie baby size/shape.  Ruthe LOVES hers.  And I'm so glad, because I was getting so tired of always holding the bink in her mouth.  I'd never even heard of these things, until is saw a picture of another baby holding one on Instagram.  



Since Ruthe was born I've tagged a lot of her pictures #chd and #heartwarrior and #openheartsurgery, which brought me a lot of "likes" from other parents of heart babies.  It's been so great to see these other babies grow, and to feel like part of a group.  I had been pretty hesitant to follow any of their accounts at first, because I feel like I'm intruding on their privacy, but now I am so glad I did.  I've "met" some of the strongest and bravest parents through Instagram.  It just proves to me that social media can really be a blessing, if you use it responsibly.  It also helps to encourage me to keep blogging about Ruthe and her fight against her heart defect, because someday there could be a new mom just like me searching for answers or stories or just a friendly "you can do this".  

I want to be the same kind of example that I've found in others of strength and inspiration and love.  I want people to feel comfortable asking me about Ruthe's heart defect, and her g-tube, and diGeorge syndrome.  It is SCARY sitting in a hospital watching your baby fight through a condition that you don't understandable and couldn't ever do anything about.  You feel helpless, and you let yourself feel like you're the one to blame.  I did.  I still do, sometimes.  I feel like I don't really know the best ways to take care of my baby.  I feel like I missed that "golden hour" of bonding right after birth and now we'll never have that pure connection.  I feel like it was my job to grow her beautiful little body, but I did it wrong and now she has to pay the price.  

I want other parents to read this blog, or see my Facebook and Instagram posts, and know that everyone has felt exactly the same as they're feeling at some point in the journey of raising a heart baby.  It's scary and nerve-wracking and overwhelming and full of the worst kind of heartache when your perfect baby has a four-inch scar on their chest.  But it's also incredible and beautiful and a bring-you-to-your-knees kind of amazing when you look into that baby's face and you can see their determination.  And I won't even mention how wonderful it is when they recognize you for the first time from that hospital isolette and it just looks like their whole body is reaching out to you.

Now, if you'll excuse me, I'm going to go smother my Ruthe with kisses and love. 

Heart babies are the best.

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!! :)


September 13, 2013

doctors and therapists and specialists. (oh my!)

Having Ruthe home is just fantastic!!  Even on limited sleep.  We've gone on four successful outings so far, and each time I'm just amazed by how well she does!  But I guess anyone who had only ever seen white hospital walls would be fascinated by the outside world.  Really she just sleeps in her car seat.  haha!

I already posted about her big first outing.  The next day she had an appointment with the pediatrician that we went to all by ourselves!  I was a little nervous, but she did SO well.  She was cold in the exam room and made me hold her the whole time (except for a couple videos and a quick picture!) or else she'd scream her head off.  Her pediatrician is super nice!  He's familiar with diGeorge Syndrome and made me feel really comfortable that he's going to keep a sharp eye on Ruthe's blood tests so we can catch any developing issues before they start causing problems.  Our visit was so quick (not in a bad way) and I was stuffed with so much information that I completely forgot to ask for her height and weight percentiles... She weighs 10 pounds even, and is 22-and-a-half inches long (give or take, she was kinda squirmy).  We go back in two weeks, so I'll be sure to ask then!! 

After the doctor, we came home to rest, snuggle, eat, and clean-up.  Then we ran over to Walmart with my mom to get a few things that we realized were missing from our pile of baby things.  Like a monitor.  I still haven't used it, but I like knowing I have the option.  Ruthe slept through petty much all of the Walmart experience.  And it was the first time I felt really stressed about having her around so many people.  Probably because I don't like being around that many people myself... 

I also ran into GNC to get one of their blender ball mixing cups for Ruthe's formula.  Since she's on a higher calorie diet, I have to mix more than the normal amount of powder and it gets pretty chunky.  So to save myself the hassle of shaking my brains out (although it was probably a good arm work-out) I got the blender ball.  Let me tell you, it has worked wonders!!  I realize that I just sound lazy, and I know it really only saves me about a minute of time, but I would have tried anything to make mixing her formula easier.  Speaking of formula... this girl has been home a total of four and a half days and she has already gone through one and a half cans of formula.  I think she eats too much...  Just look at her cheeks!!

This morning, Ruthe and I went on solo adventure #2, to her physical therapy appointment.  Since she spent so much time in the NICU, and because healing from her heart surgery kind of limited her range of motion, she needs therapy to help stretch her muscles all the right directions.  The therapist showed me how to exercise Ruthe's legs, help her work on controlling her big ol' head, start getting used to being in an upright sitting position, and putting her hands together up by her face so she learns that they belong to her.  It sounds like a lot, but it's really all things I can do during a diaper change, or while we're just sitting on the couch relaxing, or skyping John.  There's not really a set amount of time we need to spend on anything yet, but as she gets older, and they can determine where she really needs the most help, our guidelines will be much more specific.

Over the next few weeks Ruthe will have appointments with all her specialists.  She'll see cardiology and they'll start thinking about when her next surgery will be (probably in the next month or so).  She'll see her gastroenterologist and pediatric surgeon to get her "mickey button" so we don't have to have the tube open or dangling from her body all the time.  She has to follow-up with a geneticist and immunologist for her diGeorge Syndrome.  And there are at least two that I'm forgetting... it's a long list :/  But I'm really so grateful to have the list already made for me, with notes on when she needs her next appointments.  The hospital really did everything they could to prepare me for bringing her home, and I'm so glad they did!  I would be a lost cause otherwise!!

September 11, 2013

baby's day out.

Today Ruthe went on her very first outing!!  It was quite the adventure...

First, we had a wonderfully lazy morning.  We stayed in bed until 9:45, had some breakfast, and snuggled until my mom got home around 11.  



Then I got ready, dressed Ruthe (a little easier this time!), and packed a diaper bag for our great adventure!!  (Packing a diaper bag is crazy... what's crazier is that we used every.single.thing that I tossed in there thinking "we'll never use this".)

Getting her in the carseat is pretty tricky.  Her g-tube sits right where the harness straps need to cross over her belly, so it takes a lot of careful wiggling and guiding to get everything perfectly situated.  



First stop: Bonanza Beverage.  This is where my dad works.  He needed my mom to sign some papers, and we all wanted to show off the baby.  My dad has worked there forever, and pretty much everyone there has known me since I was a baby myself - so bringing Ruthe in was a highly anticipated event!  And then she slept through almost her entire visit, opening her eyes for a few minutes just to tease everyone.  

After Bonanza, we headed to the bank for what was supposed to be a quick stop at the drive-thru ATM.  Well, on the way, I realized that little miss Ruthe had been working on a little present for us that needed our full attention.  So we parked and went into the bank for Ruthe's first ever visit to a public restroom!!  Thankfully my mom's bank isn't very busy, so my screaming baby didn't disturb too many people.  She did NOT like the hard changing table, or having to put on jammies in the middle of the day.  (I didn't think we were really going to need any extra clothes, and I just grabbed the first thing I saw as an afterthought.  Thank heavens I did though!!)



Once we got all cleaned up and back in the carseat we could finally get started with the fun part of our adventure - the mall!!  OK, so it's not really a mall, but The District has some of our favorite stores.  

We started with a small lunch at the Elephant Bar.  Ruthe wanted to try a little sushi, but couldn't quite figure out the chopsticks...



She fell asleep while we were eating, and while she was eating too... That's one of the benefits of her g-tube - even if she falls asleep she still eats the right amount at the right time!!  

Actually, she didn't eat very well, because her belly was so scrunched up in the carseat.  We had to skip her next feeding to give her time to get it all down and start digesting.  But don't worry, I'm making up for it right now during her continuous feed by adding the lost amount and adjusting how much she gets for the first four hours.  It's finally math in the real world... but I'm still waiting to use all that algebra in my daily life.

My mom and I wandered around Anthropologie for a while, and the music and motion of the stroller put Ruthe to sleep AGAIN.  We found some cute clothes in the sale section and picked out the handful of things we want to keep an eye on for their big sale at the end of the year!  Fifty percent off is really worth waiting a few extra months at a store like that!  We've learned that lesson the hard way.

Our real purpose for going to The District was to pick up my dad's new suits, so on our way down to that store we stopped at the Gymboree to find a dress for Ruthe.  She woke up for a minute to look at all the cute stuff and make a mental Christmas list, but slept through me and my mom trying to figure out how to dress her and her g-tube for church.  We thing we came up with a pretty good look,  but you'll have to judge for yourself when we post pictures!

The suit store is clear on the opposite side from where we park, and the whole middle "street" part of The District is under construction so we had to maneuver through small sidewalks and hope the loud construction sounds wouldn't disturb Ruthe.  Homegirl slept like a rock as long as the stroller was moving... she is hilarious.

We also stopped at William-Sonoma for an apple peeler/corer/slicer.  My parents apple trees have FINALLY started giving off fruit that's edible, so we needed the contraption to make cooking with them that much easier.  Apple pie fillings, applesauce, apples in salad, apple nachos.  My mom and I want to try dehydrating them to make apple chips, too.  I don't even like apples, but I'm excited for all of these new recipes!

There's an adorable little store called Janie and Jack there, too.  They're actually kind of expensive, but they sucked us in with a big sale sign.  And we found a gorgeous little dress ensemble for Ruthe.  Sooooo pretty!!  We decided it could be her two month birthday present from my dad!!

About two minutes after we got home and unpacked the car it started pouring rain!  My dad thinks that Ruthe controls the rain.  Haha.  But it's kind of true... it started raining the weekend she was born, and helped put out the wild fires in Mount Charleston.  And it kind of keeps raining on her milestone days...  like the flash floods when she was one week old, and it rained the day she came home, and the day of her first outing.  Maybe she's a rainbaby...



Anyway, instead of leaving Ruthe at home with my mom so I could run to the store for some random stuff, I opted to avoid the crazy drivers and bad roads by giving our Ruthe girl a bath.  It's really more a soapy wipe-down because she can't be immersed in water until her g-tube heals.  But she loved it!!  She didn't even complain very much when it started to get cold.  I think she just loves to be naked.  And I would too if I'd spent the first sixty-three days of my life swaddled so tight I couldn't even think about moving.  




We kept her naked for a long time.  It was her favorite night with us so far.  I'm pretty sure, at least.  She stayed awake long enough for us to get a handful of really cute pictures.  She even started talking a little bit.  That only happens when she's really comfy and happy and not distracted by anything else at all.  I was actually surprised that the dog barking didn't scare her or make her cry.  But she probably recognizes it from when I was pregnant, and she knew it meant she really is home.

So there you have it.  Miss Ruthe Clementine's very first day out.  And her very first trip to a public restroom.  And her first lunch date.  And her first shopping spree.  And her first bath at home.  

Now I'd say I'm pretty well-prepared for the one measly doctor's appointment we have tomorrow... but keep your fingers crossed for me anyway!!

HOME!!!!

That's right!!  We made it!!!  Monday was possibly the loooongest day of my life.  But it was so worth all the sitting around, waiting, and signing paperwork.

 

Monday, while exhausting, was actually pretty boring.  I got to the hospital around 8am, and immediately needed to talk to the doctor to know if Ruthe could come home.  It took a while for him to come tell me, but it was the best news, so I can't be mad.  There was still all the reports to write and paperwork to sign, but it would only take a few hours and then I could TAKE MY BABY HOME!!

At 11:30 the speech therapist came in to give Ruthe a bottle, and the medical supply rep came in to teach me how to work the pump for her nighttime feed.  Then I had to run home to get her medications for the nurse to check and my mom to help tote all her stuff and document with pictures and videos for John.

We to back to the hospital around 2pm, and Ruthe's nurse told me they'd hit a snag... my heart kind of plummeted.  I just sort of stated at her, and I'm sure she realized what I was thinking because she immediately said it wasn't about Ruthe but I needed to watch he CPR video again because it wasn't charted that I'd already done it.  A little annoying, but fine, yes, I can rewatch the video.

Another twenty minutes, a big diaper change, and an embarrassingly long time to get her dressed later, we were headed out the door!!!  And thank heavens we thought to bring her stroller!  This girl comes with a LOT of stuff.





My brother Ryan made this sign for her :)  I think we'll frame it and hang it in her bedroom in Utah.

September 7, 2013

hey, girl, hey!

Tonight Ruthe and I are having a sleepover.  It's our last thing before going HOME!!!  She's so excited she couldn't fall asleep until after midnight.  Which means I couldn't fall asleep until after midnight.  Oh wait, the lights are on and I have to wear RUBBER GLOVES.  Sleep isn't happening for me.  

The doctors changed their minds about when and how and why Ruthe can come home about fifty-seven times.  First she could come home if she got a g-tube, so we got a g-tube.  Then she could come home if we set up a continuous feed at night (eight ounces on a pump over ten hours), but that doesn't make sense if we're trying to teach her to bottle-feed.  But there isn't a report from speech therapy saying that bottle-feeds are ok, so speech did a new evaluation and signed off on me bottle-feeding at home. So she can come home on regular feeds and bottle-feeding, with a back-up pump for when I get lazy.  But the insurance won't pay for a pump that I'm not using for all/most feedings, so  she can come home on regular feeds and bottle-feedings if I "room in" and they can make sure I know how to feed her by myself.  But we can't use the regular rooms for that because Ruthe's on contact isolation, so I have to spend the night in her NICU room, meaning its the exact same as when I'm here during the day, only darker, and basically pointless.

At least they brought in a fold-out-chair.

... ... ...

Now she can't come home until she gains weight two days in a row.  I hate the hospital and all their stupid rules.

September 4, 2013

in other news.

I've been a real slacker keeping track of Ruthe's progress the past couple weeks. I'm still blaming it on John because he took my iMac to Utah with him. Yeah, yeah, he needs it to study for law school, whatever. :P

Ruthe's g-tube surgery was Labor Day weekend, and John had an extra day off school, so he came home to visit us!! It was so great having him here. Especially since it takes two people to coordinate getting Ruthe out of her bed to hold her now. I LOVE seeing John hold our baby girl. And it's even more adorable when she's awake and staring right at him.

We love our baby, don't get us wrong, but we needed a little time to focus on ourselves since we live in different states now. So we went on a stay-cation to Lake Las Vegas. It was so great!! I seriously recommend stay-cations... it's the best kind of trip because there's no wasted time traveling, and you already know where all your favorite places are! Or in this case - you're still only 30 minutes from your NICU baby.

On Sunday afternoon Ruthe's doctor said she didn't need any oxygen support anymore! So they came and took off her nasal cannula. Now we can see her chunky cheeks!! It makes me want to squish them and kiss them all day long to make up for the weeks of not being able to. The first picture I took her cheeks were still pretty red from the tape, but now they're the sweetest shade of pink!

John and I spent Monday shopping for some cold-weather, grown-up school clothes. It was a good day to shop though, since there were all the big sales! After all the discounts and a gift card, we got him $250 worth of clothes for $60!! I'd say it was a pretty successful day!

Tuesday and Wednesday were pretty boring days for us at the hospital. We were mostly just counting the hours since Ruthe was taken off oxygen and started getting full feedings. After 48 hours of tolerating both of those things she is officially "ready" to come home!!

Sounds fantastic, right?! I am SO ready for these daily trips to the hospital to be over and done with! Even though we'll be making multiple trips back down here every week anyway... I'm gonna need a whole new day planner just for Ruthe's various doctor appointments!!

My mom and I took a "class" to learn how the g-tube works and how to use it for feedings and medications. They had a doll there, to use as an example, that made it feel a little like a home ec class...but it was really informative and helpful. We feel much more comfortable about bringing home a baby that has a hole going straight into her belly now!!

There are still a handful of things that need to be done before Ruthe can come home. She needs a hearing screening. I need to watch a baby-CPR video. I have to show the nurses I know how to give Ruthe her medications. And all seven thousand of Ruthe's doctors have to sign her off, write any prescriptions, and decide when they need to see her next. We're so close I can smell it!!







September 2, 2013

third time's a charm.

I've tried to finish this post twice already... but Ruthe has a sixth sense that wakes her up whenever I think I have time to blog at the hospital.

Ruthe's g-tube placement surgery went great!! It went by so fast - the timer on my phone says 1 hour 26 minutes 54.3 seconds (but that was from pre-op to back in her room, so I know the actual surgery was only about an hour!). In addition to the g-tube placement, they also did a procedure that prevents reflux. It has a name, but I forgot what it is. Basically, they wrapped the upper part of Ruthe's stomach around her esophagus, so when her stomach is full it constricts the opening and won't allow very much to flow through as spit-up. Everything went really well, and so far we haven't seen any problems at all. :)

Ruthe is such a little fighter and surprises us at every turn. The anesthesiologist told me it would probably take her the rest of the day and most of the night to recover from the drugs he gave her, and so wouldn't be extubated until the next day. Well, Ruthe really HATES that breathing tube, so she woke up and started breathing over the respirator that very afternoon and by 4pm she was just on the nasal cannula. I swear, I'm going to have my hands full with this girl.

Her g-tube has to be vented all the time right now, and for the next few weeks. Which means there's an open syringe that we keep elevated over Ruthe. It looks a little odd, but it's the g-tube-equivalent to burping any other baby. It also allows for any milk or formula to come up out of her belly if she's extra fussy or gassy, since her stomach doesn't really allow for any major spit-up now. And that way, everything flows right back into her belly - so we don't lose or waste anything!