for your viewing pleasure. [day 38.]

Ruthe had quite the day today!

She is back down to 21% oxygen (that's basically the same as room air, but it's still got a bit of pressure behind it to make sure she breathes it all in.). They measure the pressure in liters, she's at 2 right now. Hopefully in the next day or so they'll turn her down to one.  And as long as she keeps up with the breathing they can slowly wean her completely off the support.  That's just one step closer to going home!!  [I feel like I say that about something else every other day... but the are a LOT of steps before going home.  I promise I'm not just leading you all on.]

My brother Ryan came to visit Ruthe today, and hold her for the first time.  She looks sooo tiny in his arms... but it's a pretty big difference between her 20+ inches and his 6foot8!!

Now that John's in Utah, we're trying to come up with the best way for him to still get to see Ruthe on a daily basis.  Sending pictures is nice, and super easy for me.  Same with videos, except Ruthe's not always cooperative and generally falls asleep as soon as I start recording.  I also really like both of those options because then I have the pics or videos to keep and share.  Like this nice long video of my mom talking to Ruthe about how she spit-up and I was so mean for cleaning it all out of her mouth.

[Ugh.  My laptop hates me...]

click here for the video.

day 37.

My baby is in a crib!!

And I'm stuck at home feeling too sick to move.

And John's running around Salt Lake getting as much accomplished as he can before school starts.

weekly Ruthe update.

OK, we both know that title is a lie.  There's no way I could possible go an entire week and only post about Ruthe once.  There's just not enough other things going on in my life right now to not blog about my baby girl more than is really socially acceptable.

But, Ruthe is quite the little lump on a log.  I just don't have that much exciting, or even remotely interesting, information about her anymore.

She gets 65cc's of breast milk or formula or some combination every three hours.  They give it to her through the feeding tube over 45 minutes.  They've also been trying to feed her with a bottle once every shift [so twice ever 24-hours].  Sometimes she would do really well, and sometimes she would aspirate [get some of the fluid in her lungs] and let her heart rate drop really low.  That made the doctors and speech therapist wonder if there was something going on with her swallowing, causing those things to happen.  They ordered a swallow study to get a better look at what's going on in that little mouth of hers.

It sounded like, to me at least, that the swallow study was kind of unpleasant, and a little stressful for Ruthe.  They fed her formula with barium in it, of varying consistencies, and watched her swallow it with a fancy kind of x-ray.  They found that when the liquids were very thin and runny, some of it would get into Ruthe's trachea, causing the aspiration.  That would make her cough and choke and stop trying to swallow her food.  The thicker liquids were easier for her to manage getting down the right tubes.  So the speech therapist and NICU doctors decided that for her bottle-feeds they'd thicken the milk with rice-cereal.  It's only been a day, so we'll see how things go.  She did take 9cc's this morning.  That's not a lot, but it's better than nothing.  I really hope she gets the hang of eating now so she can get rid of that dang feeding tube!  And the oxygen.  And then come HOME.

did ya miss me?!

I know, it's been four whole days.  What was I thinking letting the blog go silent for this long??!  So much can happen in four days!  And a lot kind of did...  Let's recap.

[Friday and Saturday were pretty busy for John.  He packed up the moving truck with help from some great friends, and then drove it all the way up to SLC, where he immediately unpacked it with help from some more great friends.]

Sunday was Ruthe's one-month-birthday!  She is such a little cutie.  I just can't get enough of her.  Even when she spits-up all over me and a clean outfit, and fills her diaper right back up two minutes after I change her.  I wish those things happened more often.  Leaving her at the hospital really hurts.  Especially on the days that she's awake when I have to leave.  I'm pretty sure she's going to retaliate as soon as she gets home.  I'm not sure how, but I can see it in her eyes that she's concocting a plan of attack.

After church on Sunday I headed out to the hospital to spend some snuggle time with Ruthe.  My parents and Yiaya came to see her, too.  I love having visitors there.  I know that they only really want to see the baby, but seeing how many people love her just as much as I do really means a lot.  And I know Ruthe can tell when there are other people visiting.  She's always much more alert and fun for other people... and kind of a show-off.  [OK, I was being generous.  I don't really think anyone loves that girl as much as I do.  Maybe John.  Maybe.]

My parents and I celebrated Ruthe's one month birthday by going to eat at Juan's Flaming Fajitas.  It's delicious.  And I recommend it to anyone who likes to see their dinner set on fire.

Bright and early Monday morning, John flew back to Vegas to spend a few more days at home before law school starts.  He told me his flight landed at 7am.  So I was pretty upset that he called at 6:45 telling me he was here and I needed to come get him.  I was still in bed.  Luckily our house is only about 10 minutes from the airport, so he only beat me to passenger pick-up by a few minutes.  We headed to the hospital after that to see Ruthe, who, again, is freaking adorable.

After our visit we headed home to do some "cleaning and packing" because we all know that I'm a mess, and John still needed to take some miscellaneous stuff up with him in his car later this week.  That turned into us taking a three-hour nap.  In separate beds.  Don't worry, we still love each other.  But the A/C wasn't working in our side of the house over the weekend so I moved into my old room for the nights John was away.  And since my pillow was still in there I went to retrieve it and never got back to our bedroom.  John stayed up long enough for my dad and the A/C-guy to see that nothing was wrong anymore [they think we're crazy and it doesn't really start blowing hot air at us in the middle of the night].

I went to lunch with my besties Steph and Nettie and we shopped around for a couple hours.  I got an awesome Star Wars shirt and a really cute hat for Ruthe.  It's impossible to go shopping and not buy her something...

On Tuesday I got a new haircut!!  Well, the cut is the same, but my lovely friend Rachel gave me a little bit of the ombre look.  I love it!  It only took me two years to decide that its something I like enough to do on my own hair.  Maybe next time I won't be such a slow poke to follow a hair-trend.  Think of all the funky hair days I could have avoided!

Wednesday was a nice day.  I went to see Ruthe in the morning.  And then had a bitter-sweet reunion with my DHS theatre family at a memorial service for our Mikey.  It's such a devastating thing when we lose someone too, too soon.  And I'm sorry that this was the first time in seven years that I've seen so many of my friends.  I hope that I can change the way I view all my relationships, and make a better effort to see everyone and reconnect on a regular basis.  [If you're reading this, I love you guys.  More than you think.]

John and I spent the rest of Wednesday just being together.  We'd had a rough week before, getting everything ready for the move, and we really needed to just be together.  It's going to be a hard couple of months with him up at school and Ruthe and I still working on her recovery in Las Vegas.  We're not looking forward to it.  But since this was our plan, and we've had some time to mentally prepare for it, we're hoping it all works out for the best.  We won't say no to any prayers, advice, or words of encouragement though!!

family photo - 8/14/13

John woke up and left for SLC this morning at 6am.  I was partially awake for his endearing goodbye.  It felt a little too much like the mornings he got up super early and left for work.  Except when I woke up I knew that he wouldn't be back tonight to snuggle and kiss me.  We did get to Skype before he went to bed tonight.  It was nice to see his face while we talked about our days.  But I really, really miss him already.

one month.

Ruthe Clementine is one month old!  She was not a fan of her photo-shoot.  It might have had something to do with the fact that we woke her up in the middle of her early-evening-nap...  She was also a little mad at my mom, who told her that there would be cupcakes and then didn't deliver.  I won't lie, I was looking forward to cupcakes, too.

We are just incredibly smitten with this girl.  Everything she does is absolutely adorable.  And she knows it.  She thinks it's hilarious.  I catch her every now and then with a little smirk on her face because she knows we're all wrapped around her tiny fingers.  :)

I asked her nurse for her most recent weight, an last night she came in at a whopping 7lbs. 14oz.!  If you remember, that's four ounces up from her birth weight.  She was down to 6lbs. 8oz. at one point, so she's definitely headed the right direction now.  Even if it is mostly in her chubby cheeks!

We also got the results back from her blood tests.  The doctors were concerned that she might have some problems with her immune system, caused by the diGeorge Syndrome.  All the tests came back completely normal!  It is something that can change, so we'll have to have the tests run again after a while.  And Ruthe will be referred to an immunologist for a follow-up, and possibly a closer look at all her immuno-globulin and t-cell levels.  But for now we are just really happy that she's not going to be the-girl-in-the-plastic-bubble!!

AND we got a bow to actually stay in her hair!!  She still only has that little Alfalfa-esque spike on the very top of her head, but it's finally long enough to collect all the hair into it a little tuft for a clippie.

four weeks. [day 29.]

Sometimes I think about how much time has passed since Ruthe was born and I get really, really bitter that she's still in the hospital.  I watch parents come in and take their babies home after a few days, or a week, and I just get angry.

And then I look at this face...

And I know I'm being ridiculous.  I know that there are babies in the hospital that have been there for months with no end in sight.  I know there are families who might never get to take their babies home.  I know that things could be a lot worse than they are.

Yesterday I watched a family take home their one-year old baby girl who had spent her entire life inside the hospital.  It was like a party in their little NICU-room.  Doctors and nurses were coming from all over the hospital to say good-bye.  And even though those parents had bags packed with medications and monitors and their little girl had to go home in a medical transport van, it was a happy day. 

When I look at my Ruthe's face and she looks back at me I know in my heart that she'll be home in the blink of an eye.  She's just lazy, like her momma, and likes being fed through a tube.  Pretty soon she'll figure out that milk is delicious and then we'll have to work to get her to stop eating.  Maybe I should dip her bottle in chocolate...

days 27 and 28.

Ruthe is ALMOST too boring to keep posting about her every day. That, and I'm getting lazy.

Yesterday the speech therapist came to evaluate Ruthe's feeding skills. They tried feeding her with a regular bottle, and with a special-needs bottle for babies with a weak suck. Ruthe just can't quite figure out what the bottle is for. I'm sure if she knew how wonderful eating can be she would totally get on it! But as it is, she just can't suck well enough to get any milk out of the bottle, and then she has no idea that she needs to swallow the milk she does get. The therapist showed me how to squish her cheeks together while she's sucking to help her get better suction, so I try to do that every now and then with her binky. They're going to keep working with her, just once a day for now, to strengthen her mouth. This is really our only obstacle before taking her home, so I'm just a little antsy, but she can take her sweet time if she needs to. In can wait until she's ready. :)

Her surgeon also came in last night to take out her RA line. That was the IV going into her heart. She had been sound asleep for four hours (I know because that's how long we waited for the surgeon to get here.) so when the anesthesiologist came in to give Ruthe a little sleepy-juice we thought how perfect, she'll never even know what happened. Um... no. Ruthe woke up just as we were leaving and stayed WIDE AWAKE through the entire thing. It only lasted about three minutes, but apparently she was up and screaming at the doctor the whole time.

I don't blame her. They had to stop her feed at two o'clock, because they wanted her to have an empty stomach for the procedure at four. It didn't happen until seven-thirty.  I'd scream through a procedure if I woke up that hungry, too!  And the nurse didn't get her next feed started until after eight.  Poor girl.

Today was nice and boring.  I went over in the morning and got to hold her for a nice long time.  The cardiologist did an echo to check out the bands and stent.  Everything looked good.  She was a little fussy at the beginning of it, but then she tooted [a lot] and was a peach for the rest of the time.

I asked one of the neonatologists that are in charge in the NICU if there are any specific questions I should ask when trying to pick Ruthe's pediatrician.  The insurance company sent me a booklet of in-network providers and the pediatrician list is five pages long...  Dr. Ramsay told me to make sure the pediatrician feels comfortable treating a baby with CHD, a cleft palate, and diGeorge Syndrome.  I think it's ridiculous that Ruthe even needs a regular pediatrician.  She'll be seeing her cardiologists at least every couple weeks for a while, she'll have physical and speech therapy, she needs to see an immunologist for evaluations and tests, and at some point we'll have to find someone to look at and correct her cleft palate.  Surely one of those doctors could handle her shots and measurements.  It's like they all want me to go crazy!

My parents went to the hospital this evening.  Yesterday was the first time my dad held Ruthe, and my mom took a picture of the momentous occasion... and she apparently doesn't know how to use my dad's phone because the picture came out as a blurred view of his head.  So tonight was take-two.

Someday we'll have her at home, and all our pictures won't be in those funky yellow parkas.