December 15, 2013

new goals.

These are not New Year's Resolutions.  I don't believe in those.  These are simply a few goals that I have for myself that I will start working toward after the holidays.  (because nobody can change their habits when there's fudge on every table...)


goal one:  Eat better.  I really need to back away from cheeseburgers and fries.  They're sooo delicious, but soooo bad for me.  So I'm going to start eating less red meat.  Like, none.  (sorry John!)  And start integrating more fruits and vegetables into my diet.  Oh, and less candy and junk food, too.

goal two:  WAY less soda.  I'll never be able to stop altogether.  I just love it too much.  But I can stop drinking it at home, and limit myself to one-soda-but-no-refills at restaurants.  

goal three:  Move to Utah.  This one depends mainly on Ruthe and what her doctors think about the idea of spending the majority of our time in SLC.  We won't transfer her care up there until after her birthday, butte can and should be spending the majority of our time in the same state as her dad.  We miss him, a lot.

goal four:  Bust out the DSLR and take better pictures.  Now is the only time on my life I am ever going to have the opportunity to really get to know my cameras.  I want to be able to take frame-worthy pictures as my baby grows up.  And once she's mobile I'll never have a moments peace again!  I need to stop relying on my cell phone and it's lack of memory.

goal five:  Exercise.  Ugh, gross.  This is my least favorite of them all.  But I need to do it.  I need to get rid of my baby belly so I can fit back into my jeans.  Anyone know a good workout DVD?  I'd actually really love a recommendation for a baby&me workout, if anyone knows about those.


Alright.  There you go, internet.  Now you can hold me accountable.

more or less.

I feel like Ruthe has been home for a very long time.  But the truths is: she's still spent more time in a hospital bed than her own crib.

83 days, total, spent at Sunrise Children's Hospital.

And only 75 days spent at home...

But don't worry. This year for Christmas Eve, I'm getting a very special present.  I'm getting my baby at home.  Snuggled in my arms.  With her dad right next to us.  For the 84th day.

That's right.  It's going to switch for Christmas!  I'm pretty excited.  It will kind of make me feel like all of that surgery-nonsense is behind us.  That will be nice.

five months old.

This girl is growing up too fast!!



I'm not ok with having a five-month-old.  Although it helps that she's still such a weakling and wants me to hold her three seconds after I lay her down on her belly. :)  I love a snuggly baby.  Tummy-time is overrated, anyway.  We like flat heads.  She can skip rolling and crawling if she wants.  Sitting and walking sound like more fun.  We'll just go straight into those lessons, thank-you-very-much-miss-physical-therapist.

Ugh, I wish that could all be true.



"Neck-xercizing" is so much work.  I have no idea how I'll react when we have another baby and they just miraculously start holding their head up one day.  And enjoy being on their belly.  And teach themselves all kinds of new skills without a training regimen.

To start, we aren't supposed to let Ruthe be on her back at all when she's not asleep or in the car seat.  She needs to always be on her side, with the top foot touching the ground (even if I have to hold it there), and both hands in front of her reaching for toys or my face or anything.  She also needs to spend a significant amount of time (that's really only 5-10 minutes a day) on her belly with her head up, and in an upright sitting position.  The bouncer, swing, and hoppy don't count.  That's too reclined, so too much like laying flat on her back.  She we put her in the high-chair... with five kitchen towels rolled up and stuck every-which-way to hold her steady.  It's quite the production.



And how do you think Ruthe feels about all of this??  She hates it.  HATES it.  I don't blame her.  I love laying flat on my back too.  And I would really love to be able to just close my eyes and fall asleep anytime someone tried to make me do something I didn't want to do the way she does.  It's actually quite impressive... 

But I can't just sit here and complain that all of these things are just awful and produce no results.  She is getting stronger and smarter every day.  Today was the first time we out her in the high-chair, and I'm pretty sure she loved it.  For the first minute, anyway.  She just sat there and stared at me and held her head up like a champ.  And then she realized we were just going to keep staring at her and smiling like a couple of crazy-people, and she got really mad really fast.  She took a little nap laying on her side today, too. Which I totally count as exercising.  Hopefully she'll have made more than just a little progress at her next physical therapy appointment.



In other news, we started trying to feed her rice cereal.  She hates that, too.  But she won't keep a bottle in her mouth once she realizes that there's milk involved.  I'm running out of options for oral-feeding.  Maybe I'll try something extra delicious... like chocolate frosting!!  Nobody would cry with that in their mouth!! 

Ruthe is also quite the chatterbox, once she gets going.  She will just lay there and talk like nobody's business sometimes.  It's so cute.  



I just love this girl.  She has definitely caused plenty of stress and worry and sleepless nights, but the smiles and sweet snuggles make it all worth it.

December 10, 2013

the feeding pump of doom.

I have a love/hate relationship with Ruthe's nighttime feed.

It's continuous.

For TEN HOURS.

And it has to run from 9pm to 7 am, or else our day is pretty much shot. (ok - it could also go from 10 to 8, or anything in between.) That just makes her daily feeds a little more wonky than I like for them to be. I also have to refill the bag of formula every 4-5 hours. And wake up to give her a dose of medicine at 2am. I try really hard to coordinate those two things so I'm only waking up once during the night... But sometimes, like tonight, I end up just staying awake until 2.



In my defense, the past two nights I've been reading and completely lost track of time. Oops.

Anyway, back to the point: I hate the stupid pump. It clogs, makes annoying sounds all night, and the screen is always lit.  Oh, and when something "clogs" the line the stupid thing beeeeeps so loud it wakes up the baby.  (Kind of defeating the purpose of gaining calories without using them when she's screaming her head off.)  the worst part is that nine out of ten times there isn't really a clog in it at all!

I can't wait for the day we get to stop these nighttime feeds... but don't hold your breath about it for me - Ruthe still has a long way to go before she'll be considered a healthy eater.  :/

December 5, 2013

something sweet.

Having Ruthe around has been a wonderful blessing these days.  It's really difficult to wallow in our grief while this sweet girl is near by.  She has been such a calm, happy, talkative baby all week.


It's been quite a while since I gave anyone an update on her, so let's see if I can remember all her recent stats...

weight: 13 pounds + anywhere from 5 to 12 ounces.
length:  24-25 inches.
no one's actually told me her head circumference yet, but I know it's around the 50th percentile.
still fed 100% by g-tube.
still has a cleft palate (surgery for that should be around 8-12 months old).
we're HOPING she'll only have one more open heart surgery this year, but it could be two.
everything's still looking good from the last one, we're just waiting to see how it does and if her aortic valve grows.
not addicted to morphine anymore!! but I have a feeling she might get hooked on tylenol when she starts teething!
starting to hold her head up more and more during our little tummy-time sessions.
still hates the car seat.
watches me when I get up and walk around.
gives EVERYONE the stink-eye.
will sometimes-almost-kind-of-but-not-really roll herself on to her side when she's super mad and crying.
is the most adorable thing in the universe.


I still think she looks exactly like her uncle Tyler, but sometimes, just sometimes, I think she might be starting it look a little bit like me!  (sorry John!)

Speaking of John... we got to see him over Thanksgiving!  And he got to enjoy the wonderful experiences of Ruthe's day-to-day schedule.  Meds, feedings, diapers, clothes, more feedings, more diapers, and lots and LOTS of snuggles!!

And this happened: 


He loved it!! Ruthe loved it, too!  :)

December 1, 2013

My grandmother passed away over the weekend.

It was sudden, and it was a shock to our family.  She has always been so healthy, so vibrant, so full of life.  She was a beautiful person, through and through.


I am so grateful that she spent so much time visiting Ruthe in the hospital and coming to see us at home these past few months.  It was time with her that I took for granted, but now I'll always have these beautiful memories and pictures to treasure, and, best of all, to share with Ruthe.

We love you, Yiaya.  And miss you terribly.

LV Sun article
Review Journal obituary

November 19, 2013

four months.

Ruthe is four months old. Well, four months and eight days.  



She is 24 inches long, and in the fiftieth percentile for height. She weighs 13.2 pounds, which bumped her from twenty-fifth back up to fiftieth percentile for weight too. Her head is (surprisingly) on the small side at 15-ish inches, and closer to the twenty-fifth percentile. She's in size 2 diapers, but they're a little big so we fold down the top a little bit.

Ruthe is a much happier baby. She has started talking and smiling and aaallllmmooossttt laughing. She still really loves to blow spit bubbles, but they're more like slobbery foam now, than the awesome bubbles she was blowing right after she was born.  

She tries so so so hard to get herself rolled on to her side, but still needs a little boost to swing her hips over. Next week we can start laying her on her belly, propped up on pillows and blankets. Hopefully she'll get the hang of it real quick and build up those neck muscles!!  

She loves her binks (or pacifier, passy, nuk, soothie, whatever you call 'em!), especially the weird pink cow-like creature on her first Wubbanub.  She'll tolerate the frog, and only likes the giraffe of we hold it for her - which kind of defeats the purpose of having the little animal stuck onto it...  


Ruthe is learning to enjoy being in the car - when it's moving.  Her initial reaction when you out her in the car seat is to give you the stink-eye.  And then she immediately goes to sleep, hoping that when she wakes up it will all be over.  It probably doesn't help that we call her car seat "the chokey," does it?!


Every single one of her doctors appointments has gone well.  It's so wonderful to hear the doctors tell me that she really is doing as great as I think she is!!  We've started slowly increasing the amount of milk she gets at each meal, with the intent of getting her off the pump at night, it's going to be a slow process, but I'm so glad to be moving in that direction!

We're still waiting to find out what the next heart surgery will be, and when they'll want to do it.  I'm hoping it's not until the spring... I would really really LOVE to be able to spend some time in Utah with John before she has another big surgery and has to stay in the hospital again. 

So far Ruthe has only spent 49 days at home... compared to 83 days in the hospital.  

hospital: July 11 - September 8  (60 days)
home: September 9 - October 9  (31 days)
hospital:  October 10 - November 1  (23 days)
home:  November 2 - today  (18 days and counting)

By the time Christmas comes around she'll have been home longer.  And I really really like the sound of that!!

November 18, 2013

a normal baby.

I have a complex-heart baby. She's fed through a g-tube. She takes meds multiple times a day. Her development is delayed because of multiple surgeries and extensive hospital stays. Her calendar is filled with follow-up appointments for surgery, cardiology, endocrinology, immunology, and gastroenterology. She has speech, physical, and occupational therapists. She has more scars than I care to count. She's a complex-heart baby every single day.

I have a normal baby. She cries to be held. She likes having everyone's full attention. She needs her fingernails clipped. She gets diaper rashes. She has to hold my hand to fall asleep. She stares at lights and fans and ignores me and all her toys. She hates diaper changes, being naked, putting on clothes, wearing socks or shoes, and the carseat. She smiles in her sleep. She's a perfectly normal baby every single day.

I put a post on Facebook and Instagram, that touched on what a heavy burden it is to have a complex-heart baby. And that I sometimes feel guilty, because there has to be someone to blame, and I'm the most obvious suspect.

But Ruthe is not a burden at all. She's a blessing, a miracle, a beautiful soul all wrapped up in a sweet little package that I get to call mine. She's the strongest and bravest person I've ever met. She's a warrior. And she's my hero. I love my Ruthe Clementine.

October 31, 2013

do the noodle dance!

Noodle!  Use your noodle!!  Do the noodle dance!

ok, I'm done.

This post is about Ruthe's noodle.  Her noggin.  Her cranial region.  Her head.  And a little about her brains.

While I was still pregnant, and we got to have ultrasounds every month to monitor Ruthe's heart, one of the measurements they check is the width of the ventricles in the baby's brain.  There are two, a right ventricle and a left ventricle.  There are also right and left ventricles in the heart.  So sometimes we would hear the doctors and nurses mentioning that a ventricle was a little larger then normal.  We just assumed they meant in her heart, since that's where all the problems were, anyway.  

When we sat down to meet with Ruthe's surgeon for the first time (still pregnant) he read a line out loud that said there was a "cranial abnormality".  My mom and John and I all just looked at each other, a little bit confused.  The surgeon said it was only mentioned in the report, and since there weren't any other comments about it, that it was probably nothing, they were just keeping an eye on it in case it started to get worse.  Kind of like how they were watching her kidneys for the same reason.  Ok, cool.  My baby has a broken heart and a funky head.  NBD.

That really was the last we heard anything about her head/brain/cranial abnormality, aside from the questions we asked each of the other doctors.  And we kind of just let it be.  The doctors were always much more concerned with her heart, and assured us that the larger ventricles in her head were a fairly common issue and would probably never even be brought up again once she was born.

Until her fontanelle was bulging, her white blood cell count was elevated, and her cultures all came back negative for any infection.

(I like to say "her fontanelle was bulging" because it sounds way cooler than her soft-spot was a little raised.  But that's really all it means.)  

One of Ruthe's nurses was pretty concerned about it, in case it was a symptom of meningitis.  I guess one of the other patients in the PICU had meningitis, too, and she just wanted to be extra cautious.  Which is fine.  Except then the doctors wanted to do a spinal tap.  I really hate subjecting my baby to unnecessary tests, and the blood and urine cultures hadn't come back yet, so I wanted to wait and see what those results were before we did anything else invasive.  So, I nstead, we had them do a head ultrasound to check for any swelling or pressure on her brain.  That came back normal.  Her ventricles are still a bit large, but no one ever said anything about it.  Not even the neurosurgeon.  

By the time Ruthe's cultures came back, her white blood cell count was already significantly lower, meaning that the antibiotics were doing their job.  We still don't know what job they were doing, exactly, but I'm perfectly ok with that!

And today, Ruthe got an IV in her head.  It was Halloween, after all.  We needed something a little scary!!  But it's really perfectly normal.  Ruthe has very small, and very deep, and very tricky veins in her arms and hands.  It takes a LOT of pokes before they can ever get a good one.  Until today.  The veins in her head are kind of perfect!

Have you had just about enough with all this boring nonsense about my baby's perfectly abnormal heard??!  Here are a few pictures as a reward for making it through all that:




halloweenie.

Someday I'll be able to dress my family up as Star Wars characters, like I've always dreamed.  Although, that new Verizon commercial is kind of killing any semblance of awesomeness I've ever imagined... have you seen it?!  It's hilarious.  (Not the commercial part, just the costumes.)  Anyway...

Ruthe has been doing SO GREAT!!  All of her numbers look good, and her run of antibiotics ends tomorrow, which means, as long as there are no unforeseen complications, she will be home on Friday!!!!!  She did lose a little weight today, but since I know that ahead of time, I can mentally prepare myself for her maybe possibly not coming home until Monday.  We are taking it one day at a time.  But we are HOPING for Friday!!  We are doing a LOT of hoping for Friday!!!

Since we don't have very much else to do in the hospital, I have been dressing Ruthe up in some festive outfits for Halloween!  It's also because she won't get to wear any of it ever again after Thursday.  Except for her ladybug jammies... those are cute all year long!!





If you follow me on Instagram, you've already seen these... but they're just too cute not to post everywhere I can!!  Ugh, I love that grouchy little ball of chubb!  She is the absolute best baby ever, even when she yells at me for sitting down, or for looking at her, or because she can't see her heart rate monitor...  always.  She is always the best baby!

I have to admit, I get a little grouchy myself, when I see other babies doing things that Ruthe should be doing.  Like holding their heads up, rolling over, or trying to sit.  She's three months old, and she's still as immobile as a newborn.  It kind of sucks.  The worst is that I know she wants to lift her head up, and roll all around, and lay on her belly.  And as much as I would love for her to, I just can't let her do it. I have to remember that she is more than a beautiful, healthy baby.  She's a warrior.  She has fought so hard for her life, and it's hardly even started!!  Someday I'll get to watch her run and jump and do cartwheels and probably scare me half to death every single minute.  But for now, I'm just going to soak up all the sweaty snuggles and endless hours of holding her close that my arms can possibly bear.  Because she is perfect, exactly how she was meant to be.  And this Halloween might seem tricky, but it's definitely going to be full of treats!!

October 25, 2013

so close.

Look at this sneaky little face...


Ruthe is just teasing me with that little smirk!!  But she's still the most adorable baby in the universe!!  I can't get enough of her sweet little face.

We got some good news today!!  The blood and urine cultures came back negative, and her white blood cell count is down to 17!  YAAAYYYY!!!!  It's still not great, but she's almost back to where she was when all of this started, so we know the antibiotics are working!  I think the doctors are still a little concerned that they don't know what the actual problem is, but no one's said anything else about a spinal tap, or any other tests.  We're just going to sit and wait for her WBCs to drop all the way back down, and keep a close eye on all her to make sure we don't miss any symptoms.

Thank you all for all the prayers and healing thoughts that you've been sending our way!!  We love our little Baby Ruthe so much, and are so grateful that all of you do too!!

October 24, 2013

little by little...

Ruthe is doing a little better today!  She was awake for quite a while today, and it was really nice to see her reacting to me and the nurses and to hear her just talking instead of being fussy.

When I got to the hospital this morning she was just starting to wake up and look around.  She had two nurses today, because they're training a handful of new people, which I LOVE because then they have to do everything slow and explain it all step-by-step.  It's nice for my brain to get a break from all the fast-paced medical jargon.



Anyway, the nurses came in, gave her some meds, listened to her heart and lungs, and told me that her WBCs came down to 27!  I don't know if that's really good or just okay, but down is the direction we want it to go, so I'll take it!!

They've also started compressing her feeds, weaning her off the nasal cannula, and reducing the sedative and some of her other drugs to get her closer to coming back home!  

October 23, 2013

news.

They say that no news is good news.  But good news isn't no news.  And bad news, well, nobody likes that.  Unfortunately, that's what I have today.

Last night, before my mom and I left the hospital, Ruthe's nurse told us that her white blood cell count was a little high.  That made me nervous, but I know that I can't really do anything about it and I just have to trust the doctors to treat her.  Then, when I got to the hospital this morning, her count had gone up even higher!  (It was 16, and jumped to 33 - in case you understand WBC numbers, because I sure don't!)  The doctor told me that they'd taken some blood and urine cultures to test for infection, and started her on antibiotics.  So now it's just a waiting game, because the cultures have to be given 48-hours to grow before the doctors can decide if they're positive or negative.

I'm kind of hoping that this is just a little flare-up of her VRE, and the antibiotics will take care of it before it even turns into a big deal.

It could also be a symptom of diGeorge Syndrome, and there could be an issue with her thymus.  In some cases of diGeorge, the thymus is totally absent, causing some immunodeficiencies.  Ruthe's thymus is definitely there, but they weren't sure if some had been lost during her first surgery, or if it was underdeveloped, or if it's just completely normal and they saw it at a weird angle.  And all of her blood work came back normal, suggesting that she won't have any serious issues with infections.  But we'll really only know for certain if she stays healthy as she grows and continues to be exposed to different things.  

There are a couple of good things going for us... First, Ruthe hasn't been acting like she's sick.  She's sleepy all the time, from her drugs, but when she is awake she's definitely her regular self!  And second, she hasn't had a fever, at all, the entire time she's been in the hospital.  Actually, I don't think Ruthe's ever had a fever!  

I sure do love my little baby nugget!  I'm really hoping that this all gets figured out quickly, so I can bring her home again!!  Please keep her in your thoughts and prayers, because we all know she's not the only one fighting this battle - Ruthe has more well-wishers, cheerleaders, and guardian angels than anyone else I know, and every single one of her victories belongs to all of you, too!!


October 22, 2013

hey, good lookin'!!

Last month, when John was in own for the weekend, we woke up bright and early to take some family pictures with our wonderful friend Alisha. 

John was pretty grouchy because I made him wake up at 6am on a Saturday on his vacation.  I was totally stressed because I had to get myself all the way ready by 6:30 so I could spend the last thirty minutes getting Ruthe dressed and cleaned up and make a headband for her giant noggin.  Ruthe was mad because instead of her usual morning snuggles, I strapped her into the carseat and took her out in the cold morning air.

But as soon as we got there, the sun came out, Ruthe didn't cry at all, and I couldn't think of anything else to stress over.

Here are a few of my favorite shots... and if you're looking for a great photographer in Las Vegas, check out Alisha's website and blog.  [She took my maternity pictures, too!]








watching her sleep.

Ruthe is so boring.  She sleeps aaaalllllllllllllll the time.  Such a lazy bum!!

Ok, so she might still be just a little bit sedated... but I think I have more pictures of her sleeping from the past week-and-a-half than from her whole first two months of life.

Honestly, though, she's starting to wake up more and more.  The other day they tried to wean her drugs way down, so she could have more natural sleeping habits, but it was just a little bit too much for her little body and she started having some withdrawals.  Poor little thing!  They turned it back up, but have started weaning her slooooowly this time.

On Saturday they took her breathing tube out for good!  And since then she has been doing so great breathing with just a nasal cannula.  Hopefully they'll be able to wean her completely off in the next couple days.  She's already come down quite a bit... so I think it's do-able!!

All of her doctors are saying that she looks really good!  The cardiologists come in everyday to check all her meds and stats and listen to her heart and lungs and so for no one has given me anything but good news!  They are watching her blood pressure, because it's staying a little higher while she's resting than it should be, but they're switching her Milrinone to something else that does the same thing plus helps her blood pressure and they're confident that it will solve the problem.

UPDATE!!

Today, October 22nd, 2013, I got to hold my baby girl again!  For the first time in twelve days!  It was wonderful - for me.


Ruthe seemed to be a little bit annoyed by the whole process...  I can't blame her...  There are eight different tubes and cords that you have to juggle along with her squirmy body when you pick her up.  And then you have to make sure you don't trip on any of them while you back up into the chair.  And then you have to figure out where to lay them down after you sit.  And then you have to situate yourself.  All the while making sure Ruthe is secure and comfortable and her blanket doesn't fall.  It's crazy.  But so worth it!


October 13, 2013

drugs.

This is a list of the handful of drugs that Ruthe's been on since surgery.  I mostly wanted to write them down so I would remember what they're called and what they do.  The doctors and nurses throw around so many different terms it's hard to keep track!  And I thought it might be interesting for all of you, too, so you can get a glimpse of the miracle that is modern medicine.


Lasix - a diuretic, to help her get all the fluids out of her body.  She was on this in the hospital last time, and the whole time she was home between surgeries.  Her dosage is higher in the hospital, but only because they're pumping her full of more fluids than normal.  They've taken her off the IV drip of Lasix, and put her on doses every 8 hours, and by the time she's home it will probably be every twelve hours.

Heparin - blood-thinner, to keep clots from forming in her shunt or on any of the scar tissue in her heart.  They've switched this out for once-a-day aspirin, and that's what she'll go home on.

Precedex - a non-narcotic sedative, keeps her relaxed and sleeping without affecting her respiratory system.  That means they can keep her sedated and wean her off the ventilator at the same time, a big bonus for a baby who needs to stay asleep but hates hates HATES the breathing tube.

Epinephrine - adrenaline to help manage her blood pressure.  Ruthe's been weaned off this and has been managing her blood pressure just fine for the past day.

Morphine - pain management.  Last time Ruthe had surgery they were giving her a combo seditave/pain killer.  This time they opted for morphine, because - really - who doesn't love morphine?! She's still on a very low dose, they're weaning her slowly so she doesn't have withdrawals.  Poor nugget :(

Milrinone - for contractility.  Another heart-med.  This one helps the chambers of Ruthe's heart contract the way they're supposed to, since the surgery changed the way her heart's been working until now.  

Benadryl - an antihistamine to treat the itchiness caused by the morphine.  When Ruthe was first starting to come out of the anesthesia, she would wriggle around like a funny little worm.  It took a couple times for the nurse to realize that she was probably itchy and didn't know how to handle it.  Once she got the first dose of benadryl that girl just relaxed so fast and fell right into a peaceful slumber!

boring.

Remember all that time spent with our boring baby in the NICU?!  And how it made for some pretty lame blog posts, but it was really the best thing we could ask for??  Well, it's happening again!!  

[can you believe she's already three months old?!]

Ruthe is doing SOOO well!  We really couldn't be happier with her recovery from this surgery.  I think she must have read some text book entry on recovering from open heart surgery, because she's been on track pretty much this whole time.  

She's doing so well that they're even closing her chest a whole day earlier than they thought they would!!  

Her chest was left open after surgery to help reduce the swelling of her heart and lungs, and for fast access if something were to go wrong, or if the surgeon thought he needed to put in another shunt.  Those things can still happen, after her chest is closed, but it's fairly unlikely since she's been doing so well!

In the next couple days they'll be able to start waking her up, letting her move around, and weaning her off the ventilator and most of her meds.  Then they'll start to give her a little bit of food at a time, to get her stomach working.  It's another slow baby-step-by-baby-step process to get her fully recovered, but hopefully we'll get her home in just a couple weeks!!



October 11, 2013

two point five.

Wednesday was our two-and-a-half-year-iversary.


It feels like yesterday.  It feels like decades have past.  It feels so absolutely wonderful to get to be with my best friend forever.

I just love that husband of mine.  He is so smart and strong and steady.  He keeps me grounded when I'm going crazy and lifts me up when I'm falling down.  I couldn't imagined a better person if I tried.  He's the best husband, and an incredible father.  



Ruthe and I are so lucky that he's ours.

here we go again...

Whoa.  Yesterday was... well, exactly what I thought it would be.  Crazy.  Stressful.  Boring.  Sad.  Frustrating.  Long.  Exhausting.  Did I say stressful??

No one wants to have to take their baby into the hospital for anything ever.  Babies should really never have to be there, apart from being born.  (And that really a whole separate debate in itself.)  So imagine not only having had your baby live in the hospital for her first two months of life, but then taking her back a month later for another major surgery and undetermined length of stay.  Not fun.

Someday we'll celebrate Ruthe having lived outside of the hospital longer than she's lived inside. But before I get ahead of myself planning that, let me tell you about yesterday : 10/10/13.

We woke up sooo early.  Ruthe had to be at the hospital by 6:30am to get ready for the procedure.  And aside from leaving my wallet at home and having to turn around halfway to the hospital for it, the morning went fairly smoothly.  We got in, changed Ruthe into a baby-sized hospital gown, and then just kind of waited...




She was pretty content, happy even, while we were in that awkward little pre-op cubicle.  She fussed a tiny bit, but I think she was just hungry.  She was MUCH more well-behaved than the other baby we saw/heard in there, and his surgery was waaayyyy shorter and smaller (and let's face to, lame-er) than Ruthe's!  (I only know that because I eavesdropped on the mom telling some family about the procedure.). I'm pretty sure open heart surgery trumps just about everything.  Ok, everything but brain surgery.  I'm off-topic...

The nurses took Ruthe's weight and height. (12lbs. 2oz. and 22in.)  Then they did her blood pressure, pulse, and oxygen saturation.  We held her whenever they weren't doing anything like that.  But a couple times she was just fussy and wanted to stretch out, and that's when we got those cute pictures above.  :)

We met with her anesthesiologist to sign the consent forms.  Then her surgeon came back in to review the procedure with John and answer all the questions I'd thought of since Monday.  After that, they whisked by baby off to the operating room and told us to wait.  For five to six hours.  I hate waiting.

Even better, they came in at about 11am and told us they had some trouble finding a good vein for her IVs, so the surgery had just barely started.  Which was nice to hear, because at about 10:15 I could have sworn I saw Ruthe's surgeon through the window in the hallway and thought to myself 'he doesn't belong there...'

We were so blessed to have so many people come support us and Ruthe, giving up their time to sit an wait in the ugly surgery waiting room.  I really can't express how wonderful it feels to have friends and family there... it makes the day feel more natural, and really helped me to relax and be able to wait patiently without the worst-case scenario playing in my head on repeat.  Although, in all honestly, I'm going to have that problem non-stop until Ruthe comes home again.  But friendly faces and casual conversation and really the best way to ward off any kind of nerves or anxiety or panic attacks.

Ruthe's surgery finally ended around 4pm.  Her cardiologist came in to tell is that the surgery went well, and our baby girl is a rock star!  We already knew that, but it's nice to hear that her doctors think so, too!  There was only one part of the surgery that her surgeon was going to keep an eye on - the stent they put in to increase blood flow to her right lung may be a little smaller than what she needs.  Right out of surgery Ruthe's oxygen level was in the high sixties.  That's low, even for her, but it's also a common side-effect of having any kind of heart surgery.  So the doctors are all going to keep a close eye on her saturation level tonight, and as long as it trends upwards and doesn't ever get lower than about 65, she should be absolutely fine!  (Ruthe's normal sats are anywhere from 75 to 85, that's healthy for her.  But these are percentages, and a normal healthy person sats at 100, to give you a better idea of what this all means.)

After nearly seven hours of waiting, I could finally let myself really relax.  It took another forty-five minutes before they brought Ruthe out of the operating room for us to get a peek at her.  She looked so pale and little and weak.  It really is hard for me to think about her little body being under so much stress and in so much pain.  But that's what doctors and drugs are for, right?!  



Ruthe's chest is still open.  They'll leave it open for a few days to help relieve the pressure and for easy access in case anything starts to go wrong.  It's a pretty amazing thing, to see her tiny little chest exposed like that, and knowing that it's a good thing.  But the image is pretty graphic, so we won't be posting it anywhere.  I'd love to share it with anyone who wants to see, but I'll do that through text or e-mail.  Don't hesitate to ask, we want all our friends and family to feel comfortable asking questions and understanding Ruthe's journey.  (And of you're a stranger to me now, fighting with your own heart baby or you have a heart baby close to you, don't be shy!  I want to meet you and talk with you, share stories, and offer any kind of support or help or knowledge that I can.)  You can comment here, or e-mail me at sydney.w.orr [at] gmail [dot] com.  

We finally got into Ruthe's room at about 6:15pm.  I really just wanted to climb up onto the bed and snuggle my sweet baby girl, but that's not going to happen until her chest is closed. :(   Her room was pretty crowded without us there: two nurses, the doctor, a respiratory therapist, her surgeon, and the intensivist for the PICU.  What can I say, she's a popular girl!!  We made the hard decision to let Ruthe rest on her own tonight.  John and I drove home, are some dinner, and I went straight to bed.

I didn't even think that her bed and blankets and clothes would upset me.  But the second I walked into my room I just broke down.  My baby should be in her bed, next to me.  She should be wrapped in her own blankets.  Wearing her own jammies.  I should be stroking her sweet head and singing my really bad version of "Hush Little Baby" where nothing rhymes and there are more Harry Potter references than are really necessary in a lullaby.  My baby should NOT be laying in a hospital bed, with plastic wrap across her open chest, on a respirator, with more IV lines than I took the time to count, and monitors on every part of her body.  Babies belong in the arms of their mommas.  Period.

Excuse my ranting.  It's late.  I'm an emotional wreck.  I'm going to go back to sleep.

Thank you ALL for your love, thoughts, prayers, and support throughout all of this.  We truly couldn't have done it without you.  Ruthe is the luckiest baby in the world to have so many people who love her!!

September 30, 2013

so glad when daddy comes home.

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

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



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

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



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

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



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





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


September 28, 2013

trending up.

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

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

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



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

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

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



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

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

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

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

Heart babies are the best.

September 24, 2013

two weeks home.

How has it been two weeks already?!!  I'm not complaining... Ok, I am a little bit, but only because time is going by sooo fast!!  I feel like my baby should be a teeny tiny newborn still, but she's getting so big and so non-newborn-y.  It makes me sad.  

We scheduled her next surgery this morning, for October 10th.  If someone could please invent a time machine before that, so I don't have to live through another horrible day of waiting, that would be fantastic.  This surgery is going to be pretty major (we think!)... the doctors still aren't completely sure what it is that they'll be doing, whether they'll go ahead and repair her whole heart, or break it up into a couple of staged surgeries.  The whole idea of what they'll need to do is still way over my head - but I know that her doctors and surgeons all know what they're doing and have Ruthe's best interest in mind.  I mean, they're factoring in what her potential lifestyle will be limited to depending on which direction they go... it all just boggles my mind.

The surgery date also means that she'll celebrate her three-month birthday recovering in the PICU... so, once again, no cupcakes.  :(

Luckily, we've been able to pack quite a bit of activity into Ruthe's short time at home.  Let's see what I can remember from the past two weeks...

Her first Saturday home was the Walk in Memory - Walk for Hope event in Green Valley.  Last year we lost my cousin CJ to suicide.  I've never actually talked about it out loud.  CJ taught me how to snowboard.  He hired me at the Abercrombie he was the manager of, even though it was technically against the rules.  He helped me shop for wedding shoes when he worked at Nordstrom. CJ always made me laugh, and although thinking of him now mostly just makes me cry, I'm so glad that I have my handful of memories to hold on to.  This walk was a great experience.  I'm so glad that I was able to go with my family and support suicide prevention efforts in Las Vegas.  Ruthe, on the other hand, slept the entire time.  Lazy bum.


The next day was Ruthe's first day at church.  And can you believe that we didn't have any dresses for her?!  We had to go shopping last-minute on Saturday to get one!  Ever since she was born we kept putting off buying anything really adorably for her because we weren't sure what size she'd be when she finally came home.  Poor planning, I know.  But don't worry, we found a super cute dress for Sunday, and a few more for all the future days at church!  :)


Oh, did I mention that she slept through that experience, too?

The next week was a little easier to manage, since we'd survived through pretty much everything she could throw at us.  (I'm still working on our sleeping schedules, though.)  We had some very anxious visitors named Matilda and Paizley who have been ready to see Baby Ruthe since they found out she was going to be a girl!!  Seeing Ruthe in the arms of a second-grader makes her look gigantic!!  


Let's counteract that with a picture of her and my 6'8" brother... now she's so tiny!  Much better!!


Ruthe had her first follow-up appointment with the cardiologist on Monday.  He did an ultrasound, and had them do a quick blood test.  They just prick her heel, but then they have to squeeze out enough blood, and you can just tell that Ruthe HATES it.  She had those tests done all the time in the hospital. And others like it.  In fact, I'd say that she had her poor little heels pricked on average every other day.  At least they have cute bandages at the doctor's office...


Wednesday was our friend Teri's birthday, so Ruthe dressed up in her fanciest little ladybug outfit to go and visit!  We love our Mama T - and can't imagine what our lives would be like without her!!  :)

The only downer part of Wednesday was that Ruthe had to have some blood drawn for a handful of tests that her pediatrician ordered.  And by "handful of tests" I mean enough to require an actual IV line, instead of just a couple heel pricks.  It was kind of a miserable experience.  I don't even like seeing a needle go into my own skin, but I've learned to just tough it out for Ruthe because she needs to have what little comfort I can give.  It took the lab techs four tries before they hit a good enough vein to get all the blood they needed.  :(  My poor baby was so brave and strong!  She only cried a little bit, when they were holding her arms so stiff.  I had tears welling up in my eyes just watching her, I'm surprised I kept it together through everything!  Once we got home I just let her cry it out while we snuggled.


Ruthe is really starting to let her personality shine through.  When she's not asleep, that is.  I try to just watch her pand savor the moments when she's smiling and being her adorably silly self, but I also know that I need to capture those moments in pictures and videos to share with John.  Being away from Ruthe (and me, but mostly Ruthe) is so hard on him.  I can tell him about the funny things she does, and we can skype and FaceTime, but I know all he really wants to do is hold her and snuggle her and kiss her little face.


I've been sewing button-holes into Ruthe's onesies, to accommodate her g-tube.  I has really expanded her wardrobe!!  We figured that she'd only be wearing any of these onesies a handful of times anyway, so why not make them work for us, and not against us?!  The first couple tries were pretty sad and ugly.  But now I know the best location, width and process for putting it in.  Trial and error is sometimes the best way to handle things like this.

Last, but not least, is Ruthe's very first dress-up costume!!  Teri had a 50's themed party for her birthday, and while the invitation said costumes were "optional" we couldn't pass up the opportunity!  My mom made a circle skirt for me (because even though I talk a big game, I really hate sewing from a pattern) complete with a tulle slip!  And I made a little matching skirt for Ruthe.  Then we ironed-on some monograms to our shirts to get the complete look!  Adorable, right?!


I also made a full-on, layered Jello mold.  Very 50's housewife-y.  You can search Facebook for that picture.  I'm not going to make it that easy for you all to tease me!!

That's it for Ruthe's first two weeks at home!!  I'll try to get on a real computer and post the handful of videos that I have of her being especially cute!

Until then, keep us in your thoughts and send good vibes to her doctors we can get this surgery out of the way and move on with our lives!! :)