July 31, 2013

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.  :)

July 30, 2013

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!

video

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!]

July 28, 2013

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!!

pump you up!


[sorry, I had to.]

Pumping breast milk is kind of the worst. It hurts, it takes forever, and it hurts. And I'm really just building a stockpile right now... Ruthe was only eating about 4 oz. over 24-hours for two or three days. And they'll start her off really slow again, at about a half-teaspoon every couple hours to see how she tolerates it. So when I get seven-ish ounces in a day, I know that it's all going to sit in the freezer for weeks! It's not very motivating.

I am really glad that the hospital has been so great about storing the breast milk for me, and all the nurses have given me some good tips on getting the most milk for my effort. The dietician we met today even said that while Ruthe's in the PICU the hospital will provide breakfast and dinner for me because I'm pumping. Score!!

Ruthe will still be fed through a tube for quite a while. There are a handful of things that have to happen before we can try to breast- or bottle-feed. Her chest tube has to come out, along with the arterial line (I think), and she has to tolerate larger feedings well enough to have the energy to be able to suck long enough to fill her belly. And even after all of that, we may have to experiment with different bottles and holds because of her cleft palate. I have a feeling that getting her to eat well enough to go home will be the biggest hurdle we face. :/

July 27, 2013

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.

video



July 26, 2013

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.

July 25, 2013

day 15.

Two weeks old!! Can you believe that?! Because I sure can't. Ruthe is just the absolute greatest baby in the universe. [You know, besides not knowing how to grow a heart the right way.] She just amazes me every single day with how strong and brave she is. I'm sure all the doctors and nurses and all the poking and prodding are so scary for a tiny little baby, but she handles all of it like a little champion. Except for that stupid thermometer in her armpit - she totally hates that.


Today, all the nerves and stress started to sink in. My baby is having open-heart surgery tomorrow. My BABY is having OPEN-HEART surgery TOMORROW!!! Babies should not have to have open-heart surgery. Their mommas shouldn't have to think about a knife cutting through their sweet, soft, newborn skin. Babies should just be snuggled all day every day for the first ten years of their life.

I thought I would be a lot more of a mess today. But Ruthe is such a little champion, she doesn't ever make me feel like I should be worried about her being able to handle this surgery. And, luckily, my mom and I had some things to do to keep me and my brain occupied.

After leaving the hospital, around twelve-thirty, we went to my dad's office so my mom could sign some papers. Everyone there loves my dad, and by extension, they love Ruthe. She has so many people sending good thoughts and prayers her way - it's just the best feeling. We get that pretty much wherever we go. It seems as though the entire world has teamed-up to make sure our little girl is going to be OK. I really can't thank anyone enough... I'm going to spend the rest of my life feeling grateful, and that is a great feeling.

I had a doctor appointment to check my incision, and make sure it's healing we'll, at three in Green Valley, so my mom and I went to lunch at Pei Wei. Every neighborhood should have a Pei Wei... It's the best. Those restaurants should dot the earth like McDonald's.

My appointment went great. My incision is healing exactly how it's supposed to. Nt that any of you really care about whether I'm going to have a scar or not. But I want to have a written record that the doctor told me, to my face, that it would be barely noticeable. Because I feel like they said the same thing about my appendix scar.

After the doctor, we headed home so I could take a little nap before heading back to the hospital with John. Naps are my favorite part of the day.

My parents came with us to the hospital, so they could see her once more before surgery. And our home teacher came, so he and John could give Ruthe a blessing. I've said it before, but I am so grateful that John holds the Priesthood and he can use it to give our sweet baby blessings of health, strength, and comfort.

We got to hold her again. For the last time in a while. After surgery she'll have an arterial line and a chest tube, and neither of those are things I want to have to worry about. It's sad to think that I have to wait again to snuggle her little body, but I know it's for the best and I can just hold her hand and kiss her chubby cheeks in the meantime.

July 24, 2013

days 13 and 14.

I had a post about Tuesday and Wednesday halfway finished on my phone. And then I fell asleep and it disappeared. :(


Tuesday was a pretty boring day. I went to visit Ruthe, the nurse said her jaundice numbers went way down so they'd probably be able to take the lights off her after the next blood test came back. I did a little research on feeding a baby with a cleft palate while Ruthe held my hand and napped, and then I left and bought some shoes for five dollars.

When John and I went back that evening, things weren't going so well. Remember how Ruthe tried to pick off the tape holding her breathing tube in? Well, her slobber seemed to have loosened it up even more and when the nurse repositioned her last night the tube came out a little bit. With all Ruthe's excessive slobbering, she started to have trouble breathing and so the nurse called in the respiratory therapist and the NICU doctor, who had to put in a fresh tube. Luckily, our awesome friends Brian and Alisha came by with dessert, so we were conveniently distracted in the family lounge instead of watching our sweet baby be tortured.

She was off the jaundice lights, so we could get some better pictures. And then Alisha showed us up with her fancy camera and her professional photographer skills. We just love the shots she got of our sweet baby girl!!



 Wednesday was a really good day. The occupational therapist came by the help me "kangaroo" hold Ruthe. That's my favorite time of the day. She's so snugly, and I love to feel her soft baby skin against mine.

John and I went back Wednesday night, like every other night, and got to hold her some more. We just love all that time alone with our little baby nugget. She is everything our hearts could have hoped for in a baby!

I know I'm probably forgetting a lot of the little details about this past week, and I regret not having finished this post on time already. :( I know Ruthe is bound to have so many questions about why all her baby pictures were taken in the hospital, and I REALLY want to be able to tell her every tiny detail of her story. She is such a strong little girl. I am just in awe of all that she's been able to deal with in only two short weeks of life.

July 23, 2013

feisty.

Ruthe has blood drawn every day to test different levels for different things. This morning she decided they'd gotten enough and it was time to be finished, so she kicked the nurse and spilled the vial of blood.

That's my girl!!

July 22, 2013

day 12.

There's really not a whole lot to report on from today.

Ruthe's still under the lights.  She still hates that stupid mask.  Although, they did decrease the amount of light on her.  She still needs to go down a few more points before they take them off completely.


It's hard to take a picture of her when the lights are on.  The camera only picks up whatever happens to be under the light.  Exhibit A.


Ok, so that picture's not so bad... but that was from earlier this morning with two lights shining down.  Now that there's only one light, the circle is much smaller and you can't get more than half her body in the shot.  And it's just the middle-half... no face and no legs.

They had to put in a new IV to give her some blood.  It's not a bad thing, she's not losing any of her own blood.  Not much, anyway, when they prick her heel.  Her hematocrit is just lower than they like for it to be before babies go in for surgery, so they're trying to boost it.  I tried to get a picture of all the lines going in.  The dark red one is the blood going into her hand.  The rest of them are going into her leg, with meds and baby-gatorade, and lipids.


I said on Facebook today how I'm pretty sure working at the plasma center in Rexburg prepared me for all of this.  It's kind of a strange way to look at it, comparing finger-sticks on fully grown adults to pricking the tiny heel of my precious little baby who can't even cry out loud to tell us how mad she is about all of it.  But the nurses always ask me before they do something like that if I'm squeamish around blood.  And I thank the plasma center for being able to say "No." confidently.  I feel like the times I'm standing next to Ruthe, rubbing her head and holding her hand, as a nurse is milking the blood from her heel go a lot better than the times she has to be alone while they do it.  I don't like watching it, but at least I don't have to dash off to the bathroom, or worse, pass out!

This morning they had to put in that IV in her hand, and I watched the whole thing.  It's pretty sad, watching your baby struggle because they have no idea what it is but it hurts and oh my gosh just stop poking me for five minutes!  Since baby veins are so tiny and hard to see or feel, they used a light under her hand to shine through and show where a good vein was.  You know how if you put a flashlight up against the ends of your fingers or your ear or something not-too-dense it kind of glows red?  It was exactly like that.  Only her entire arm was glowing!!  That's how tiny babies are.  Some things just put it into perspective.

I got sick and tired of all the doctors and nurses accidentally saying "he" or "him" today.  Like three of them did it.  I know all babies look the same, and unless they're dressed in pink or blue nobody can really tell.  [Sometimes even THAT doesn't help.]  But I didn't like it.  So I fished around in my diaper bag and found this adorable hair clippie to add a little femininity to Ruthe's look.  It helped.  And made her even more adorable!  :)


John and I just got back from our nightly hospital visit.  Ruthe's still under the lights, but her numbers are going down, so she should be off them sometimes tomorrow.  Fingers crossed.  As soon as those lights turn off I'm gonna snatch her right up and snuggle her close for about seventeen hours.  Well, that might be a little bit of an exaggeration... I can't exactly just pick her up all willy-nilly.  It's quite the process, and generally takes three people to juggle the baby, her IVs, and her breathing tubes.  But I'd totally snuggle her for seventeen hours straight if I could.  I'm not exaggerating on that one. 

July 21, 2013

day 11.

Happy Sunday!!

I finally fit back into some of my real clothes.  :)  Granted, it was a very stretchy and forgiving skirt, and I wore the belly-binder from the hospital to keep everything tucked in...  Still, I'm totally counting it.  I did finally get around to weighing myself today, too.  It wasn't as bad as I thought it'd be.  Babies, and all their extra stuff, are heavy little stinkers!  If I can just get this tummy flab under control, things should be good. 

John and I went with my mom to Sacrament meeting, and then headed out to the hospital to spend some time with Ruthe.

That poor girl was NOT having a very nice time today.  She's back under the jaundice lights, which means the superhero mask is back on, and she hates it!  She tried to scratch it off or push it up or move her head back so it slips off.  Silly girl.  She'll just be blinded by the lights and get even more upset.


She's also started trying to pull out her breathing and feeding tubes.  Our little stinker will get one finger up underneath the tape on her lip and try to pick it off.  You've gotta hand it to her, going for the tape first, instead of just yanking on the tube.  She's pretty clever.  It makes me nervous.

The nurses have had to keep her sedated all day, because every time she starts to come out of it she is just not a happy camper.  I'd be sick of it all, too.  And she's got plenty of time left in there.  At least four weeks of recovery after surgery.  Poor girly.  Maybe she'd calm down if she got to watch movies like the baby next door... except that she'd have to open her eyes for that.

We stayed for a couple hours and then headed home to rest for a while [I needed a nap!] before going back to check on her around 9pm.

She was still under the lights, so we couldn't hold her today.  I really, really hate jaundice!  We didn't stay long, because it was so late, and because she really just needed to rest and not be bothered.  Hopefully her labs come back really good in the morning and we can turn off those dang lights and get our snuggle on!!

Radioactive baby!  Maybe she'll have superpowers after all this...
[I should hang on to that mask.]
They also followed through on increasing her feeds again.  She's up to 16cc's every three hours.  That equals about a half ounce at a time.  So if I can pump at least 4 ounces each day I can keep up with her...  for now.  Getting more breast milk should start to help the jaundice, too.  We're hitting it from all angles!!

2042.

I thought I'd give you all a little tour of Ruthe's set-up.  It's pretty impressive, for such a tiny person.


This is what you walk in to.  It's intimidating.  And all these machines beep.

Sometimes Ruthe likes to set them off on her own, because she can.  Like when she breathes over the respirator, it makes a loud honking kind of beep.  And if she yanks off one of her chest-stickers, the monitor beeps low at first and then higher if it takes too long to fix the problem.  The bed measures her temperature, and goes off if she's playing with that little probe and its sticker.  Her IV pumps she can't control, but they're timed to go off every so often so a nurse has to check the settings.


The IV pumps give Ruthe her daily dose of baby-gatorade, that's the bag hanging.  Some lipids, for pure calories so she doesn't lose too much weight.  And any and all medications they need to give her.  These all go into her body through the PICC line in her ankle.


This is obvious.  It shows her heart rate [green], the amount of oxygen in her blood before and after going through her heart [blue], and her breaths per minute [pink].  And it shows the time.


The OMNI bed [that's just what I decided to call it, I'm pretty sure it says that somewhere... there's also a giraffe on it somewhere, too] holds Ruthe.  It's a bed, for all intents and purposes.  But it has a lid.  And a heat lamp.  And a LOT of cords and wires running in and out of it.  It has those hand-holes, too, so you can reach in and touch her even when the lid's closed.


This is the respirator.  Or ventilator.  Whatever.  It has about forty-seven numbers on it at all times.  I don't know what any of them mean.  Luckily, a respiratory therapist comes by every couple hours to check those mysterious numbers and write things down on a chart hanging from it.  Whenever I see them I make sure to ask if everything looks good.  The answer has pretty much always been "Yes".

And now, as a reward for looking at all those boring machines, here is another video of Ruthe.  She learned some new hand-flexing tricks and how to pretend being cold.  She even sticks out her tongue for you!!

video


do you like my hat?

The nurses put this hat on Ruthe the day she was born.


Later, someone added a little bow onto it.  It was pretty cute.  I don't have a picture of Ruthe wearing it, oddly enough it's the only thing I can't find a picture of.  But I'd seen the look they were going for on Pinterest, and knew I could do better.  All I needed was to swipe another hat.

Well, today I had my chance!  As we were leaving I snuck into the drawer under Ruthe's bed [I really don't have to sneak - it's just full of diapers] and grabbed the old hat.

The old hat.

John had already taken the new hat off Ruthe's head, so when I went to kiss her goodbye I just snatched it right up and slipped it into my bag.  I'm such a sneaky thief!

When I got home, I got on Pinterest and looked up the how-to for the "hospital bow hat" to double-check that I remembered how to do it.  All you need is scissors.  It's the best kind of craft.  This is where I found the instructions.  Don't give me any credit for this adorable version of the boring uni-sex hospital hats.  I'm not this clever.

bigger bow = better hat

Here is my finished product.  It took me all of two minutes.  I'll add a picture of Ruthe wearing it tomorrow!


July 20, 2013

days 9 and 10.

See that?! ^ ^ ^ Ruthe is so boring I can't even come up with a daily post anymore!! Best.Thing.Ever.

The flash-floods last night totally bummed me out, since the roads were too bad to get to the hospital. Today, we planned ahead and are probably going to be trapped INSIDE the hospital until the rain stops and the roads drain out. No complaints tonight. I'll sleep on the hard, cold, germy tile floor if I have to. ;)

This is how my exhausted husband fell asleep last night... that maroon pillow is where my head belongs.  And yes, we are sleeping on flannel snowflake sheets with a down comforter.  Just because it's a hundred degrees outside all night doesn't mean I don't still get cold.


Yesterday, while I was holding my sweet girl, my mom and I decided that she needed some accessories to make her look less like a boy [read: less like Tyler].  So we stuck this ADORABLE homemade headband on her.  She pretty much hated it.  But I loved it.  She's the cutest baby in the world.  [Sorry to all my friends who just had babies... yours are all pretty cute, too.]


 Anyway, Ruthe is doing soooo well. They increased her feeds again [saying it like that makes her sound like a prize pig...] so now she's getting 12cc's of breast milk every three hours. It's not much when you think about it - less than two-and-a-half teaspoons. But she has a teeny tiny tummy, and she does absolutely nothing to burn the calories. Homegirl can't even cry them out. She's gonna be so chunky by the time we bring her home! I love chunky babies!!!

My mom and Teri brought me out to see Ruthe this morning, and she got her very first signed book!! Teri just came back from a librarian party/book symposium and had the author of the Clementine books sign one for our own little Clementine! :)  I can't wait to read it to her.  We're actually thinking we'll record John reading it out loud to play to her while he's gone, so she can still hear his voice.


She's going to be a chunky bookworm.  It's all I've ever hoped for in a baby!!  :D

My mom and Teri have also decided that Ruthe is going to be weird like me and hold her pens/pencils/crayons/markers "wrong".   I use basically my entire hand to hold a pen, not just my thumb and first two fingers like the rest of the world.  I don't understand holding a pen the "normal" way.  It hurts.  Here is a close-up of her hand, which made them think she inherited my "awesomeness".


 This morning the doctor told me they'll probably go up on Ruthe's feedings again tomorrow.  And for that much food they'll put it on a pump, instead of just letting gravity do its job.  The nurse tonight actually put one of her 12cc feedings on a pump over 30 minutes, and I thought it was so much better!  I feel like sending that down to her tiny little tummy all at once must have been hard for Ruthe to handle.  She wasn't fussy at all during this feeding. 

She was also being snuggled my my mom, which probably helped the non-fussiness.   

 Grandmas  [I mean] Auntie Heathers are the best!!


 The nurse put Ruthe in a little snap-up t-shirt and hat and socks to help her stay warm while we were all holding her.  She looks pretty cute in clothes.  But I still prefer my babies naked!

July 19, 2013

mommas and papas.


I realized today that I haven't really said much about John and I since the baby came. But we're doing pretty good, handling all Ruthe's issues and juggling a regular life. [Who am I kidding?! My life isn't regular, but John still has to go to work.]


John has been amazing. He wakes up early to go to work, spends all day outside sweating like a pig, comes home to shower, and then lets me talk him into staying at the hospital until way too late, just to do it all over again the next day. He doesn't even complain about being so exhausted. I know it's because he just loves Ruthe so much it doesn't phase him. And I love him more and more every day because of it.

I really don't know if I'm handling everything as well. I feel like I should be at the hospital more often, like I shouldn't ever leave, like the second I step outside the NICU something horrible is going to happen. It's not fun at all. Especially right now, sitting at home instead of at her bedside for the first night since she was born. [Have I mention how much I hate flash floods??]  But again, John is being so strong through all of this for me.  He's better than the best.

John starts law school in one month.  I remember when I still had a month left to be pregnant... that went by too fast.  I really hope we're ready for this challenge.  We did the whole long-distance, skype-every-night thing while we were engaged.  But now we have a baby, and I know she's all John will be thinking about in his spare time.  I really just hope he doesn't have very much, for his sake.

Our hope is that Ruthe will totally kick her surgery's butt, and come home in record time, and do great, and not need vary many check-ups, so we can go visit John on the weekends.  Keep your fingers crossed for us!

flash flood nevada.

Las Vegas gets some pretty bad flash floods. It only happens once or twice a year, but when it does its crazy. Once, when I was little, our pool overflowed. That was kinda funny. Until the water came up to the back door and I had a panic attack thinking it was another biblical-level flood and I was going to die. Nightmares for weeks.

Since then I've always hated thunderstorms. Mostly because they wake me up at night and give me those stinkin' nightmares, but today it's reached a whole new level.


I can't go see my baby.

John and I left the house when it was still fairly clear. There were clouds down over the Strip, and it was REALLY windy, but there wasn't any rain until we got down the road a couple miles. And then it felt like it just all came down right at once! By the time we'd gone a few more blocks and turned down the road that leads to the hospital it was a mess. There was water everywhere, filling the gutters and outside lanes, and it was coming down so hard you could hardly see anything. We made the hard decision to turn around. It was either go home and talk to Ruthe's nurse on the phone to check on her, or probably get the car stuck in a flooded intersection. :(

I really hated turning around, and I'm probably going to stay at the hospital all day tomorrow to make up for it. I just feel so bad knowing my baby girl is laying in a bed all by herself all night. Even if she does sleep 98% of the time.



July 18, 2013

day 8. [my sweet nugget]

Ruthe is kind of a big deal around here.  We're all completely smitten with her.  And today she hit a milestone...


Who told this girl she could start getting older?!  She needs to stay my tiny brand new itty bitty baby nugget for at least five years.  Then we'll talk.

She was extra boring today.  Although, she was wide-awake when I got to the hospital.  I really wish she didn't have to be on that stinkin' respirator so I could hear her make all her little baby noises.  And her cry.  I think the saddest part of this entire ordeal has been watching her get mad and start trying to cry - but no sound comes out, so she just tries even harder!

Sometimes you can hear her make weird half-noises.  It's kind of like exhaling so hard a sound comes out.  That's pretty much all we get.  :(  You can kind of hear her a couple times in this video.  [Let's hope it loads for you!]  [[and please ignore my silly baby voice]]

video

 The NICU doctor told me they were going to increase the amount of her feedings today, and keep her off the jaundice lights.  I don't know if she ever really followed through on the feeding thing though, because she was still getting the same amount at noon.

Ruthe had visits from both of my grandmas this morning, and she slept through everything!  She's so rude.  Someone needs to teach this girl some manners!!


I put this hat on Ruthe right before I left this afternoon, and it was off when we came back tonight.  I don't think the nurses realize how adorable she is as a ladybug...

There's a fly in my house... buzzing around my keyboard and bowl of ice cream.  I just thought you needed to know that.

Anyway, the nurse from last night told me that if I wore a button-up shirt tonight I could kangaroo-hold Ruthe.  It's when you hold them upright against your bare chest so they can feel you, smell you, and hear your heartbeat.  So I spent the extra two minutes before we left the house to iron a shirt.  Pretty much as soon as we got there the nurse asked if I was ready to hold Ruthe.  I love this nurse - she just gets right to it.

I thought holding Ruthe last night was awesome.  It doesn't even come close to how I felt today.  I absolutely LOVED being able to feel her warm little body against mine.  I didn't even mind her knees digging into my stomach or all the drool.  I could kiss her sweet head and feel her little heartbeat and stroke her tiny back and rub her sweet bum.  It was perfect.  Just absolutely perfect.


John got another turn while I pumped, but he didn't wear a button-up shirt, so he just snuggled her.

He's not very good at taking selfies...

When I came back they were both like this...  I love it!  Although, he'll have to learn how to stay awake once she's home and there's not a nurse on stand-by.  ;)