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:


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


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.


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


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!


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!!