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!!

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!!

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!  

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!!

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!