October 11, 2013

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!!

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