lazyville.

That's where I've been living. Lazyville, USA. And there is very little opportunity for blogging in Lazyville. Spare time is mainly spent eating snacks and staring into space.

[[my baby is adorable, and she knows it.]]

I also really hate loading pictures onto my laptop or my parent's computer to post on the blog... I shouldn't have let John take the iMac to Utah with him. :/

[[fashion show!]]

And have I mentioned how much easier it is to type on my phone and let autocorrect do all the hard work, like spelling, for me? And that that's how I was elected the Mayor of Lazyville?

[[putting her hand in her diaper like a pocket, and sportin' a mullet.]]

Anyway, here's a Ruthe update:

[[apple-head.]]

The ductus arteriosis, where the stent was placed, is starting to narrow. There is some tissue growing back on the inside of the stent causing a little more pressure and a little less blood flow than the doctors want to see. To fix that, Ruthe is going in for a heart cath today (Thursday the 29th). It's basically an angioplasty. Dr. Galindo will use a balloon to widen that ductus up just a little bit more. They're hoping this will be a one-time thing before her next surgery, but we'll just watch it and see.

[[she loves her swing now!  but she's not too sure about Boris the Hippo...]

Everything else has been going really well for out little nugget. She's breathing well, with just a little bit of oxygen support. She mostly just needs the help when she falls into a deep sleep and her breathing slows down. The upper-GI test they ran to get ready for her g-tube went well. She'll go in for that surgery as soon as they can get her on the schedule. We're hoping for tomorrow! We just want to get everything done so she can recover and come home!! :)

[[her scar is fully-healed and she can suck her thumb!!]]

I know that there are a handful of things I haven't recorded, and I'll kick myself for it later on down the road. This baby girl is the most precious, beautiful, amazing gift that I could ever imagine. She is so much more than we bargained for, in a good way. We love her so much and are beyond happy that she is ours forever.

[[my seven-week-old warrior.]]

ketchup. [day 39 to day 42.]

Ketchup is delicious.  Even if you spell it "catsup".  It's just the best.  John doesn't think so, he's a mustard kind of person.  Ketchup is also awesome because it doubles as fake blood...  fake blood you can dip your fries in!

It's late, can you tell?

Anyway, the last several days have all blended together in my head, so none of this is going to be chronological and it's really just going to be the highlights.

My brother Tyler came to see Ruthe.  My mom may have bribed him with dinner, but he still came and held Ruthe for a quite a while.  She was asleep, and after too long so was his arm!  That happened to me today, too.  Ruthe's big ol' head has a way of finding your nerves and pinching them juuust right!

Ruthe is such a well-behaved baby.  Really.  She hardly ever fusses.  And when she does, her binky will calm her right down.  If she's mad about needing her diaper changed, she'll tell you about it until you're done and she's clean and that's it.  If she doesn't want to be swaddled she'll wriggle herself out of it.  If she thinks you're boring or too loud or anything isn't exactly how she wants it she'll just fall asleep.  [Or fake sleeping until all her demands have been met.]  She's so well-behaved, in fact, that the nurses rarely check on her.  They do their "cares" every three hours when she eats. They take her temperature, change her diaper, give her any meds she's scheduled for, and sometimes measure her girth or listen to her chest and belly.  But that's really it.  Sometimes when I go in to visit her I'll be there for an hour before I even see a nurse.  One side of my brain tells me that's a good thing - because the nurses aren't expecting Ruthe to need any other medical care other than what's scheduled and normal.  The other side of my brain is screaming, "Why are you not right here next to my baby at all times watching her like a hawk in case of an emergency??!' 

After Ruthe's swallow-study, the speech therapists decided that they need to be the only ones giving her a bottle everyday.  And then I heard that either them or the nurses could do it.  And then the nurse told me it was only speech therapy.  And then the speech therapist said she thought the nurses were still doing it on the days they couldn't.  Long story short, Ruthe missed three days of bottle-feeds and I was one confused and upset mess of emotions.  Obviously I want Ruthe to learn to eat from a bottle.  And obviously I want a trained professional to be the one teaching her.  My vote was always for speech therapy to come in everyday and work with Ruthe.  I feel like that's more consistent than anything else, and will help her get the hang of feeding herself.  [It's also a little bit because I spent twenty minutes watching one of the nurses trying to figure out how to assemble and use the special-needs bottle they prescribed Ruthe, and that just seemed a little wrong.]

Once a week they change out the feeding tube in Ruthe's nose.  So the other night, maybe Monday, the nurse took out her old tube and replaced it with a new one.  Ruthe HATED that.  I'm sure it's uncomfortable in the first place, but the nurse didn't really listen when I said she has a cleft palate until he saw the tube curled up in Ruthe's mouth.  The second try didn't even get it past her nose.  Finally, after listening to her cry [and I mean really cry with tears and a red face and everything] for what felt like hours the tube was in, all the way, and the nurse could start her feed.  Well, when I got to the hospital the very next day, Ruthe's feeding tube was going in her mouth.  Ummm... why?  Well, because the day-shift nurse knows that when a baby has a nasal cannula the standard procedure is to NOT put anything else in the baby's nose, to keep it from getting crowded or blocked or whatever.  So she took the tube back out of Ruthe's nose and stuck it down her throat through her mouth.  I was so confused, again.  Thankfully I wasn't there while they were doing that again, because I probably would have just unhooked everything and taken Ruthe straight out of that dang hospital once and for all.  I just couldn't comprehend why the nurse would think it was a good idea to put Ruthe through that kind of torture twice in twelve hours.  And, talking to other nurses and doctors about it, I learned that if speech therapy is concerned that having the tube in her mouth will cause even more problems with her eating from a bottle and swallowing, they'll move it back to her nose.

The hospital has implemented a new security-system for visitors.  In theory, it's a great system and I'm really happy with it.  In practice, I have to stand in line for thirty minutes to get a visitor's badge.  Standing in line isn't really the problem... it's standing in line behind so many unprepared people visiting moms and healthy babies that get to go home in a few days that really irks me.  The security guards ask for a valid ID and the patient's last name and visitor's code.  The ID is no problem, the last name is easy-peasy, the dang security code is where we hit the snag.  My personal opinion is that if you don't know the code you should have to step aside and call the patient yourself to get it, so the next person in line can get through.  Nope.  The security guard looks up the patient's room number and calls up to ask them specifically if the visitors are welcome.  And then takes their picture and scans their ID.  It kills me.  I have the least amount of patience standing in that line.  And I've been asked by more people if I speak Spanish [and can explain the process to them] in the last three days than ever before in my life. 

I realize that all of those things are complaints.  But this was a very complain-y week for me so far.  I finally hit that wall where I'm sick of the hospital and I feel like no one's doing anything and I'm sure I could take better care of Ruthe myself at home anyway and I just really really need things to be happening faster.  It doesn't help that John isn't here, either.  I just couldn't find anything positive about Ruthe being in the hospital.  I asked John last night, in tears, why I couldn't just bring her home now with a little oxygen while she sleeps and her feeding tube for me to feed her with, and take her to the hospital once a day for an appointment with speech therapy.

There's a sign by her bed that has a checklist that needs to be completed before a baby can go home.
 Ruthe's looks like this:                                         The one in my head looks like this:
     [X] I am in a crib.                                                [X] I am in a crib.
     [   ] I am gaining weight.                                       [fatty] I am gaining weight.
     [   ] I have passed my car-seat test.                      [sure] I have passed my car-seat test.
     [   ] I passed the hearing screening.                       [whatever] I passed the hearing screening.
     [   ] My family is ready for me.                              [YES!] My family is ready for me.

She hasn't actually had the hearing screening or car-seat test yet, but whatever.  I don't care if she can hear me and her twelve pound head will fit safely in a car-seat, I just want to snuggle her.

But now I have my own checklist and here's how it's going...
     [X] Ruthe's nurses check on her as often as necessary, and they do respond whenever her monitors alert them of a potentially risky situation.
     [X] Ruthe is on the daily schedule for speech therapy to try bottle-feeding, and I can call to check the time of that appointment so I can be present to watch and learn.
     [X] Ruthe isn't going to remember how horrible the feeding tube is, and the doctors and nurses know best how to deal with a baby that needs special considerations.
     [X] Crazy people are much less likely to get past the new security-system to come in and injure or steal my baby.  Also, it's better people-watching.
     [X] The doctors are always there to answer my questions and listen to my concerns, but Ruthe's health care is their ultimate priority whether I understand their processes or not.

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.

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.

musical babies.

Seeing "Sunrise- NICU" on my missed call list is just about the worst thing ever.  I have a mini-panic attack every time they call.  And they're really bad at leaving messages.  Which I haven't decided if that makes things better or worse.  Because they're also a big fan of putting me on hold.  :/

It wasn't a big deal.  They were just calling to let us know they moved Ruthe.  Again.  [Still not sure why they couldn't leave that info in a message.]

She is now on her fifth hospital "room".  This girl gets around.

When Ruthe was initially admitted to the NICU she was put in bed 2042.  We liked that bed.  We were there for two weeks.

After her surgery they transferred her up to the PICU, bed 5022.  We LOVED the PICU.  She had her own room, and I could sleep over with her.  It was a great five days.

Since she did so well after surgery, and since she was the only baby left in her hallway, they moved her back downstairs to bed 2040 in the NICU.  That was nice.  I liked seeing other people and being able to eavesdrop on the nurses' gossip.  But I always got a little nervous/embarrassed when the other parents would see me put on all the isolation gear.  It made me worry they were thinking my baby's contagious and going to get their precious babies sick.  Ridiculous, I know.

So when they moved Ruthe to the back of that pod, bed 2037, I was relieved.  It was a bigger space, and not very many other parents would be able to look at us like we're wearing hazmat suits.  We also had pretty much total control over the lighting in her little nook.

Now she's in pod 6.  We've never been there before.  I'm a little nervous that we'll get lost trying to find her.  Anyway, here's to hoping bed 2116 is our last stop before home!!

day 25 and a new trick.

Ruthe is a little bit of a stinker!  Last night she let her oxygen-saturation dip a little too low for anyone's comfort and the doctors put her back on the nasal cannula.  It's on a really low setting, as of 10pm it's at 21%, which the nurse said is basically room air.  As long as she keeps her "sats" up for the rest of tonight they should be able to take her back off the extra support.

When John and I stopped by to visit before church this morning I put on her Sunday socks.  :)  I love ruffles on babies.

My parents and Yiaya went over to see her this afternoon.  She slept the entire time.  What a lazy bum!!  [OK, I don't have any room to talk, I was taking a nap myself.]

John and I headed back to the hospital around 8:45, and found Ruthe's new room.  It's a pretty nice blend of both the NICU and the PICU.  Ruthe's in her own little room, so the other babies can't wake her up, or vice versa.  But there are more babies in there, so we're not left alone in the hallway and forgotten about.  [No one ever really forgot about us in the PICU.  I just worried that they might.]

When we got there Ruthe was eating, and I made the mistake of picking her up to snuggle again.  It only took about five minutes before she spit up on me.  :(  I had to promise her I wouldn't disturb her while she's eating anymore... but I'm not sure how that will work once we start trying to nurse.

Anyway, we got her cleaned up and snuggled back down.  I pumped for her [I'm secretly blaming the formula she had today on her spitting up - the hospital ran out of breast milk this morning because I was hoarding it at home.] while John taught her all about cooking meth while they watched Breaking Bad.  Then when it was just about time to head back home I got this video...

Isn't she just the cutest little thing?!

day 24.

Today, Ruthe made milk come out of her nose.

And then some more came out of her mouth.

And as soon as I'd wiped that mess up, she did it again, only worse.

The doctors are trying to compress her feedings so she gets used to the sensations of a full and empty belly.  Last night she was getting 60cc's over an hour and a half.  This afternoon they pushed it to 60cc's in an hour.  Well, silly me, thought it would be OK to pick her up and snuggle with her halfway through her first shortened feeding.  She really let me know how she felt about that.

One of the nurses got Ruthe's footprints today.  She finally doesn't have any IVs or monitors on her feet, so they could get a nice imprint.  I felt a little bad about it though.  Since the nurses had to take blood from her heel so often while she was on oxygen she REALLY hates it when anybody messes with her feet. 

But just look at her cute little tooties!

I stayed through her entire next feeding, just to make sure she didn't spit-up again, and she did great!!  She slept through most of it, but we did wake her up when the nurse had to change the tubing for her chest IV meds, and she made it through all that fussing without even the tiniest bit of milk coming out of her nose.

Other than that, today was pretty uneventful.  Oh!  I almost forgot.  The best part of the day!!  We put her in one of her own onesies!  She looks so cute in real clothes.  :)

I know she doesn't look like it, but she totally loves that outfit!!

day 23.

Ruthe has got all sorts of tricks up her sleeve!  Or, in this case, up her chromosomes.

Ruthe's recovery - 15 minutes, one day, three days, and one week post-op.

Our little nugget was diagnosed with diGeorge Syndrome.  It's a disorder caused by a deleted portion of genes from her 22nd chromosome.  There's a chance that it came from me or John, or that it occurred all on it's own.  There are some other problems that Ruthe might have or develop, related to diGeorge Syndrome, but for now we're just happy to know where her heart defect and cleft palate came from!

And since we're dishing out the results of all Ruthe's recent tests, she's also positive for VRE.  That's vancomycin-resistant enterococci.  Enterococci is a bacteria most commonly found in the intestines that's become resistant to the antibiotic vancomycin.  Ruthe's not sick from it, she just has the bacteria.  She most likely got it from the hospital, although it could have been me or John or any of her many visitors.  I'm not trying to point a finger, I just want to emphasize the fact that she isn't sick with an infection.  someone could have VRE for their entire life and never develop an infection, or experience any symptoms because of it. If she does develop an infection from it though, it can be treated with different antibiotics.

Because she's VRE-positive, Ruthe was moved yet again.  This time just to a new spot in the NICU.  The NICU at Sunrice is divided into six[ish?] pods, and each of those pods has several wings, each housing three or four little nooks for babies.  The wing that Ruthe was in when they got her test result back also housed a baby that could get seriously ill if they were exposed to VRE and developed an infection from it.  Since Ruthe's such a trooper [and has way less machines to transfer along with her] we scooted her little bed into another wing at the end of the pod.  We still have to wear all the isolation gear whenever we go to see her, and we'll have to until she comes home, but being at the very end of the pod is great!  Ruthe's little nook is extra spacious, so we swiped a second rocking chair to keep in there for our night-time visits.  :)

days 21 and 22.

There's not a whole lot of news on Ruthe today...

Yesterday afternoon they moved her back down to the NICU.  She was the only baby left in her hallway in the PICU, making things a little tricky for the nurses up there, and since she's doing so well the doctors decided to move her.

John and I went on a date with our friends Brian and Alisha last night to Serendipity 3 down on the Strip.  They're famous for their frozen hot-chocolate.  I'm not a fan.  But they have deeeeeelicious sundaes.  Yummy ice cream topped with fudge and marshmallow goo and a mountain of whipped cream and a cherry...  I could go back every day if it wasn't such a long walk.  Or so dang pricey!!

Doesn't it just look SO good?!!

Please ignore that we look exhausted... we just had a baby.  ;)

When I got to the hospital this morning I had to put on a gown, face mask, and gloves before I could see Ruthe.  The test they run for staph takes about 48-hours to come back, so until then we'll have to suit-up!  She was wide awake for a little bit, because the nurse had just changed her diaper and checked her out, but she gets pretty sleepy from all that fussing.  I held her for about an hour, and then the cardiologists came around to check her out.  Everything's still looking and sounding great!  Her incision did open up a little bit, and it's leaking some fluid, but not a lot, and no one's been too concerned about it.

Three weeks!!  I may need to invent a time-machine.

The nurse and I tried to bottle-feed her a little bit more today.  She didn't do so well.  It's pretty tricky to figure out the whole process... although Ruthe does have the chicken-head motion down!  The problems come when the milk's in her mouth and she doesn't know what to do with it.  She'll just kind of stare at you, like she's saying, "Um, excuse me, but there seems to be something leaking into my mouth and I'm not sure what's supposed to happen now.  You seem to be a little too excited about all of this, so could you please just give back my regular, non-leaky bink?"

When John and I went back tonight she was still doing really well.  They took out her PICC line, so she only has two things going into her!  Just her feeding tube, and one last IV running into her chest.  Their plan is to get that taken out tomorrow, but the surgeon has to give the go-ahead.  Hopefully they'll take that out and be done with it, but the nurse said they may have to put in a new peripheral IV [just in her hand/wrist] if she needs any more medications or fluids.

The neonatologist [doctor in the NICU] had the nurses start compressing Ruthe's feeds.  Before she was just getting a continuous stream, but now she gets 60cc's over about two hours, and then nothing for an hour, and then 60 more cc's... you get it.  They'll keep decreasing the length of her feeds and increasing the time between them, so she gets used to having a full and then empty belly.  Then it should be a little easier to convince her to take a bottle or nurse.  In the meantime, we'll meet with a speech therapist who can help evaluate Ruthe's needs, and tell us if/how her cleft palate will factor in to her learning to eat.

Hopefully Ruthe will be able to keep her temperature steady for the rest of the night.  She was a little cold when we took her temp at 11, but I just called and the nurse said she was coming back up.  If she can keep herself warm enough on her own, then as soon as they get that line out of her chest they can move her into a regular crib.  That's one step closer to coming home!!

isolation.

When babies get transferred into the NICU from another area of the hospital, they're put in "isolation". It's not a bad thing. It's just to help decrease the risk of cross-contaminating any of the other (much more fragile) babies.

It's not even a big deal, Ruthe's in a regular bed and has a regular nurse that monitors her a regular amount, but all of her visitors have to wear a mask, gown, and gloves.

They also run a test for staph-infection. Which I think should be standard for every one all the time - like a flu shot - but what do I know.

Ruthe's still doing great! We'll try feeding her with a bottle again today and see if she does any better. She's pretty sleepy though, all these crying babies here in the NICU are keeping her up all hours of the night. :/

blessings from heaven.

Prayers have been anwered.  Honestly, that's the only explanation I can come up with when I think how on earth our sweet baby girl has come so far so fast!!

So, thank-you.  To everyone who included Ruthe in your prayers, or sent a good thought her way, or just smiled when you saw her picture plastered all over Facebook.  Thank-you!  Thank-you!!  THANK-YOU!!!

Today Ruthe's doctors decided that she's well enough to move back down to the NICU.  The only thing she has left to do before coming home is learning how to eat on her own.  The nurses and staff in the NICU are a little more practiced at getting babies to eat, so that's where we'll be until she comes home.

We are SO proud of our little nugget!  She has rocked this recovery like a champ!  I never expected for this to seem like it could all be over too soon... but I'm not complaining that it could go that way.  Even if it takes her another month to figure out the whole sucking/breathing/swallowing combo, I'll be impressed.  But with all the prayers and good vibes headed in her direction I don't see this stretching out for too much longer.  :)

days 19 and 20.

 #mybabyisawesome

Still not sure why she needs tylenol up her bum.

Trying to escape!

Already takes control of the TV remote...

Yeah. That's pretty much all there is to say.

Ruthe got her chest tube and arterial lines taken out yesterday, so we got to hold her!!

They got her up to 16cc's of breast milk every hour last night, with is technically a full-feed. and that means as soon as she's weaned off the pressurized oxygen I can start trying to breast feed her!! They'll get her started on bottles, too, when I'm not there, and so they can measure how much she's taking in.

Since they extubated her, and put in the nasal cannula, her air supply has been pressurized to help keep her lungs open and push out all the fluid that built up in them from surgery and medications. They're slowly turning that down and watching how she deals with doing more work herself. They also take an x-ray of her chest everyday to see how much fluid there still is in her lungs. Once all of that is low enough, they'll take her off the oxygen completely.

She's also being weaned off of her blood-thinner medication [heparin].  They'll get her off that completely and on plain aspirin, since that's something I can give her myself, without any medical training.

UPDATE!!  Ruthe is a rock star.  She's off oxygen and heparin completely!  AND we tried out bottle-feeding a couple times tonight and she took some!  She only ate 3cc's from the special cleft palate bottle, but for a two-and-a-half week old baby that's never had to work for her own food before, I'd say that's pretty dang impressive!!  The nurses don't want us to force her to use a bottle any more than she can handle, so when she started to get fussy I let her stop.  She still has a feeding tube, and she'll have that pretty much until we take her home.  As she gets stronger and starts eating more on her own they'll decrease the amount she gets through the tube.  Once the doctors are convinced that she's getting a sufficient amount of food by mouth, and as long as she stays off all the other things, she'll get to come home!

Tonight when John and I went to visit the nurse  helped me  put a nightgown on Ruthe.  She looks so cute in clothes.  :)  She can only really wear the snap-up shirts and the long newborn nightgowns because of all her IV lines, and I don't know that I could comfortably put her into anything myself, but it sure was nice to have her in jammies to snuggle with tonight!

I also got to pick her up out of her bed all by myself!  It seems like such a simple thing.  Picking up your baby.  Mommas do it a hundred times every day.  That was the first time I've been the one to actually lift her out of bed, and it was awesome!  [The video of us getting her dressed and me picking her up won't load, because it's almost three minutes long.  :/  So enjoy this picture of my sweet snugglebutts instead!]

day 18.

Today was great! If you're stalking me on Facebook you saw that Ruthe's surgeon told us that she's doing remarkable well! He was impressed that she's already off the ventilator, he thought it would take a few days after surgery before she'd be alert enough to make the switch to the nasal cannula. He also changed her chest tube from a suction drainage to just regular (I think they called it water-locked) pour-into-a-container drainage. I love that he was impressed with how well she's doing. I mean, I knew she was awesome from the very beginning, but it's nice when the doctors confirm it!!

Since I spent the night here again last night, I was here at 2am when they took her x-ray, and then at 11ish when the doctor came by to tell us about it. There's still quite a bit of fluid in her lungs. It should eventually be pushed out by the pressure provided through her nasal cannula. Once all that fluid drains out and her blood-gas levels are holding strong they'll be able to take her off all respiratory support.

The doctors/nurses (I never really remember who answers which questions) told me that once her chest tube is out and healed, and they remove her arterial line (hopefully in the next couple days) we'll be able to start holding her again!! It will be a long time (6-8 weeks) before she'll be able to lay on her chest, so we can't snuggle her very close, but we can cradle her like the sweet little baby doll she is!

This afternoon was my cousin Paizley's birthday party. She's SIX!! John and I went out to her party for about an hour and a half. It was the perfect chance to show everyone the video we took last night of Ruthe crying. We realize its probably a little sad, and might be hard to watch, but her voice is the sweetest sound. We just have to share it :) Anyway, Paizleycakes had a "garden party" complete with ladybug cake pops, plant-your-own-sunflower party favors, and (my favorite) flower petal headbands!

After the party, our plan was to stop at home for a quick shower and some dinner, and then to head back to the hospital before 7. Well, we might have accidentally fallen asleep until 8:15. Oops! We got up, I took an even quicker shower than I'd planned on, and met up with Brian, Alisha, Turner, and Landon at the hospital to show off our baby.

Luckily, the nurse tonight let us break the only-two-people-at-a-time rule, so we didn't have to rotate our friends into the room. I think she might have regretted that decision a little later, because you can't really put all of us in a room together and expect us to be quiet little church mice. (We were never even very quiet at church growing up.). It was so fun having friends in here with us! We really love introducing Ruthe to people. She's kind of our favorite thing right now.

They started feeding her breast milk through a line that goes into her nose and down to her belly around 9pm today. She only gets 3cc's over an hour, but so far she's done really well with it, and hasn't had any trouble keeping it all down or getting too much air in her belly on accident. Hopefully they can start giving her more tomorrow, and more the next day, and more the next day... I better get pumping!!

day 17.

Eventually I'll start to think of better titles for these posts. But for now, numbering the days is just easier. It may also be a little confusing, though. I started numbering right away, so day 1 was her actual day-of-birth, but she was technically zero days old. That's why day 8 and day 15 were her one- and two-week milestones. Make sense?! Good.

Today was pretty great. Last night I got to stay in Ruthe's room ALL NIGHT. And while I didn't get the best night's sleep, I didn't get the worst night's sleep either. I was pretty cold, so I'll have to remember to bundle up tonight!

I woke up a couple times during the night, mostly just to roll over. At around 2am the x-ray tech came in to get a new picture of Ruthe's chest and make sure that all her lines are still where they're supposed to be.

Sometime during the night, Ruthe's right leg went a little bit dead. That's the leg she has an arterial line going into, and I guess it got cold and the nurse couldn't fine a pulse on it. She adjusted it and put a blanket over Ruthe to warm her up, and everything seemed to fix itself.

And then I woke up "for real" at about 6. I spent most of my time just watching Ruthe sleep and trying to keep her awake whenever she did open her eyes. The doctors said that once she was waking up for a good chunk of time and if all her blood levels looked good they would take out her breathing tube! We were definitely rooting for that to happen... I may have tried pinching Ruthe a couple times to keep her awake but it didn't really work.

John stopped by at about 6:30ish to see Ruthe, give us both a kiss, and grab his sunglasses from the diaper bag before going to work. He's kind of the best husband ever.

I knew it was going to be a long day, so I sat down on my chair-bed to relax a little while the nurses changed shifts and Ruthe slept. I was apparently not done sleeping, because I zonked out all scrunched up on the chair for about an hour... twice. Even after open-heart surgery Ruthe is boring. [No complaints about that!!]

Around 10, after I finally got around to changing out of my pajamas, a couple of her cardiologists came in to do an ultrasound/echo on her chest to double-check the bands and stent and get readings of the rates/pressure/velocities/whatever. Everything looked great!! Just what we wanted to hear. :)

My mom came by at about 11 to see Ruthe. And to check on me, too. I told her everything the doctor's had told me after her ultrasound, and the thing with her leg, and about taking her tube out. We decided I needed some fresh air, so when the Deans came by to visit Ruthe and go with my mom to a new home decor shop, I tagged along. It was nice to get a little fresh air and change of scenery, and I knew I'd have been bored to death at the hospital by myself, but I always feel guilty leaving Ruthe alone.

Just not quite guilty enough not to leave again a little bit later so I could get in a quick nap and shower before John got home and brought me back.

When we came in we saw Ruthe just hangin' out in her little bed, WITHOUT A BREATHING TUBE!!! That was the best. They also took the dressing off her incision, so we saw for the first time how big it is. It just hurts my momma-soul to see that big, red scar where there should be soft, perfect, peach-fuzzy baby skin. :(

Ruthe is handling this whole thing like a little champion. I am so proud of her. And even though she won't remember any of this, I always will, and I'll know how much she's capable of.

Since her breathing tube is out, she can cry!! For the first little while she was only making tiny little gremlin-sounds. But after a while we got to hear a couple good cries. That is the most wonderful sound in the world. I know that I'll eventually start to really dislike her crying, but after two weeks of silence, this girl can cry her heart out for days and I'll enjoy every second of it.

Ruthe's first surgery...

Where do I even start with today??

John and I woke up at about 6 to get ready and be at the hospital by 8 to meet with Ruthe's surgeon. I packed an over-night bag because there's a bed for me to stay with her in the PICU after surgery. John filled the car up with gas.

When we got to the hospital, Dr. Ciccolo was right behind us ready to explain today's procedure, and go through a little bit of what will most likely happen in the future.

Today, they'll open her chest, place bands on her pulmonary arteries to protect her lungs from getting too much blood, and place a stent in her ductus arteriosis to keep it open and blood flowing through to her body. Ruthe decided to make things even more difficult by turning her pulmonary arteries sideways, so they cross. Isn't she just a peach?!! Her doctors are not concerned about that making things difficult. There are risks to these procedures, just like with every surgery. Mainly, the risk of infection. Also that things could go wrong during surgery, causing her to lose too much blood, or that the stent could block blood flow to either her lungs or her body... They gave us a 5% mortality rate for this procedure. And while Ruthe seems to have chosen the road less travelled with everything else, that's not a percentage I'm overly concerned about.

John had to leave to go to the dentist. Ruthe's surgery wasn't scheduled until noon, so I just hung out at her bedside like it was a normal day. At about 11 my mom brought me some lunch, so we went into the family lounge to eat before everything got going. At 11:40 we headed back into the NICU, and Ruthe's nurse was a little bit frantic! The doctors had just called to tell her they were on their way to come get Ruthe and take her down for surgery. That poor nurse was so worried that we wouldn't be back in time! Luckily John was just parking, too, so he ran straight in to be with our sweet nugget before she had to go.

Ruthe surprised us all by waking up and staying pretty alert the whole time we waited for the doctors. It took them about forty-five minutes to finally come up to get her, so we had a nice long time to tell her how great she is and that we love her so much and that everything's would be fine.

I could NOT handle the idea of them wheeling her off into the unknown. I tried so hard to hold back the tears, but just couldn't do it. My tiny, sweet, snuggly nugget of a baby girl was about to have open-heart surgery. I finally got it together enough to give her a kiss in the pre-op room and tell her how much I love her and that I'd see her soon. And then I promptly went into a bathroom stall to finish sobbing. Don't tell John, he'll be mad that he wasn't there to remind me everything would be OK.

The waiting room was not as bad as I imagined it would be. Our wonderful friends, the Deans, brought some snacks and drinks and hung out for a while for moral support. [We love you Teri, Jen & Deanna!!]

And then we waited. And waited. And waited some more.

There's a TV screen in the waiting room with patient's code and their general location in surgery. We watched for Ruthe to show up, and at about 2:15pm she did! Her code [8950] showed that she went into the operating room at 1:04pm. About the same time we saw her on the screen, one of the nurses came out to give us a progress report. All the pre-surgery things had gone well and the surgeons had just started their procedures. Everything was going exactly as planned.

I kind of expected to get more updates from the nurse, but that was the only one.

About another hour passed by, and then there were two nurses asking for Baby Girl Orr's family. Then they asked John and I to wait in a small conference room to the side of the general waiting area. We did NOT like that. It was the worst sixty seconds of my life, sitting in that room, all alone with John, waiting for the doctor, and expecting it to be horrible news. John and I both said to each other, "I don't like this."

Dr. Ciccolo came in and relieved all our fears by saying it went great. I could have strangled him for making us go into that little room!!! But he was able to tell us more about how Ruthe did during the procedure since there wasn't anyone else that could overhear. Gotta love those HIPPA laws!

I knew my family was waiting outside with the worst scenario running through their heads, so as soon as we walked out I flashed them all a thumbs-up. I had to fight really hard again to keep the tears back, but this time I did it. We just had to wait another fifteen minutes and they'd wheel Ruthe out for us to see her. I think we ALL really needed to see her face to really believe that she was OK. That darn little room traumatized all of us!

My mom, John, and I waited for them to bring her out, and then went up to the PICU family lounge to wait until she was all settled into her new room before we could really check her out. Each patient in the PICU has their own room. It's really nice, because there's a pull-out chair-bed for a parent to spend the night. [Thats where I am right now!! and I don't plan on ever leaving, but I know my mom and John will drag me home to shower at least once a day.]

Ruthe was all bundled up in about ten different blankets as they wheeled her past us. All we could see was her nose and some of those chubby chubby cheeks. It was all we needed!

It took probably another hour before we went into her room to see her for real. She's not the prettiest baby right now, but she's definitely still my favorite!

The doctors and nurses all warned us, several times, that she would have all kinds of lines going into her, and there would be a lot of machines around her. They were right. But it's not quite as bad as I thought it would be. She has a chest tube in, to allow for drainage. And another line going into her heart that they can use to give her medications or whatever else you would need to inject directly into an infant's heart... They also added an arterial line into her femoral artery. There are eight different medications set up to run, but only four or five actually going. Some of them are just-in-case meds, and they took her off one since I've been sitting in here.

The goal is to have her off the ventilator tomorrow or the next day. They should start to wean her off some of the different things over the next few days, too. And the surgeon will come in to check her chest tube tomorrow, 24 hours after surgery, and possibly take it out.

Overall, the lessons we learned today are:
[-] I am not well-suited for pre-surgery nerves, or post-surgery relief.
[-] Rolo cookies are delicious!
[-] Conference rooms, while seemingly evil, are not all that bad.
[-] Choosing to sleep in your baby's room the first night after open-heart surgery sounds like a good idea, until the nurse tells you that they'll keep the lights on all night, and you remember how your daughter likes to set off the alarms on all her machines just for fun.