August 29, 2013

surgery numero dos.

Today's cath goes down in the medical record books as a "surgical procedure". In my head it was on the same level as a CT scan - no biggie - but it turns out it was a little more serious. She was put under general anesthesia and intubated again. Poor baby. :(

The doctor put two catheters into her heart and used them to get an accurate reading of the pressure in her ductus arteriosis. He told me before the procedure that sometimes the echocardiograms show an incorrect value, since its only measuring the blood-flow and then estimating the pressure. It turns out that the pressure in Ruthe's stent is normal. (Thank heavens!) There is a little but if narrowing, but it's not from tissue building up on the inside. Dr. Galindo wasn't sure whether to widen that up with an angioplasty or not, so he consulted with the other interventionalist doctor. They both decided that since the pressure is normal they could just leave her alone for now. If anything changes though, they'll know what to do. I'm not sure if that decision is giving me peace of mind, or a panic attack. I suppose only time will tell. ;)

Honestly, the hardest part of today wasn't waiting for her procedure to be over like last time. It was watching her struggle to wake up and then get so aggravated and worked-up because she was intubated. I'm sure her whole body was uncomfortable. She was cold, hungry, and probably still really fuzzy from the anesthesia. And to top it all off, the breathing tube makes it so she can't make any noise when she cries.

I absolutely HATED walking out of her room tonight. :( Her little face was so sad and I know the only thing she wanted was for me to pick her up and hold her close all night. And instead I left her all alone. My sweet, beautiful, warrior of a baby is probably going to have some serious abandonment issues. :(



At least she can still have her bink... that always calms her down.

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.]]

August 21, 2013

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.

August 20, 2013

baby fat.

There is a good kind of fat, and a bad kind. [and I'm not talking about saturated vs. unsaturated... this isn't a health & wellness blog!]

Let's start with the bad kind, and just get it over with. This donut of flubbed around my middle. Bad fat. And also makes it increasingly difficult to wear any of my pre-pregnancy clothes. And since I refuse to keep wearing my maternity wardrobe, I'm stick with the same four shirts I bought for the hospital. Maybe when Ruthe's home I'll start exercising. But for now I'm just going to have to live with my bad fat.

On to the good fat. The delicious, squishy, adorable, good fat that's all over my sweet Baby Nugget. This girl is a fat magnet! She weighed in last night at 8lbs. 10oz.!! And it's all in her wonderfully chubby cheeks. For a baby who didn't eat more than a tablespoon her first three weeks of life, I'd say she's on a roll!! She's also in a size 1 diaper. Which I feel should qualify her to come home. I mean, how hard can it really be to set up her feeding pump myself at home and just bring her in for speech therapy to work on bottle-feeding?! Really. I'd kind of like to know.

Anyway, there you have it. Good fat = a deliciously chubby baby. Bad fat = a sadly frumpy momma.

August 19, 2013

unfortunate.

The iPad and Blogger are not friends.

It's going to take some time and effort for me to get back in the groove of blogging Ruthe's every move!

It's also going to take me setting up my laptop at the table so I don't get distracted by the Big Bang Theory.

Don't worry, that will all go down later tonight... I have some pretty adorable videos to share.

August 17, 2013

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.

August 16, 2013

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.

August 15, 2013

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.

August 11, 2013

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.


August 8, 2013

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...


August 7, 2013

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.


August 5, 2013

we are parents. [day 26.]

I know, we became parents the minute that second pink line showed up...  or saw her little jelly-bean body at the first ultrasound... or when we heard her heartbeat for the first time...  or the minute we heard her sweet cry...

Take your pick of we-became-parents-when milestones.  I felt them all.  I prefer to consider the day I went home sick from work and collapsed crying into bed because I realized my "flu" was morning sickness and yelled to a very sleepy and confused John "I'm pregnant!!".

But today, we got it on paper.  We now have documented proof that at 6:45am on July 11th, 2013 we became parents.

It's kind of a boring document...  Just blue, with a darker blue border and a raised seal.  All the font is sans-serif.  It has a bar code.  It fell really short of my expectations.  I wanted something with a little bit more design.  Or at least some variation other than bold or italicized.

Birth certificates used to be kind of gorgeous.  Like a diploma - with big, fancy, gothic-style lettering, and hand-written information.  I want one of those birth certificates for my baby...  Something I feel like framing in her bedroom.  This one deserves to be filed away and never looked at again.

Oh well.

We got her social security card in the mail, too.  Now it's going to be a LOT more difficult for John to try and change her name at her baby blessing.   ;)

My computer and my phone are having some communication issues...  so this post is going to be pictureless.  I'm sorry.  If you're seriously jonesin' for a peek at Ruthe, check out my instagram feed... she's taking it by storm!!

August 4, 2013

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?!

August 3, 2013

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!!

August 2, 2013

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.  :)

August 1, 2013

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. :/