Discharge soon & parenting thoughts

Ugh – I still can’t get over how much I hate the word discharge… sorry. 

Anyhow, Ellie had a few days where she was rocking 4 different heart rhythms… just continuously switching from one to another.  She’s silly like that.  However, in the past 24 hours, she has had normal sinus rhythm (the rhythm normal hearts beat in) and first degree heart block (where there’s a little delay in transmittance, but nothing too concerning).  As long as Ellie has another solid 24 hours, it looks like we should be able to get out of here… thinking either tomorrow or Saturday.  We can’t head home just yet, though… we’ll have to stick around to have a clinic visit early next week to check up on her before we start the 13-hour trek home.

After a few days of heavy sedation and several more days where Ellie was not yet herself, we finally got our sweet girl back yesterday.  On day 7 post-op, she regained her personality.  It takes a while to wean off of paralytics and sedatives… and I’m sure there was plenty of pain that she was trying to push through while awake.  Right now, she’s just on Tylenol as needed – which isn’t often.  She’s teething something fierce right now, too… so sometimes we give her Tylenol just for teething pain.  You’d think the massive incision and sutures in her belly would still be causing her pain, but she’s kind of a rock star.  But seriously – teeth!  It’s kind of amazing to be back to the trials of “normal” kiddos.  I remember teething being rotten for our boys… it’s kind of awesome to have some normalcy up in here.  (Did I just say “up in here”?  I’m old!)  So yeah, we’re looking forward to breaking out of here soon and taking our girl on some local adventures over the weekend before we have to come back in for an outpatient visit next week.  Fingers crossed that she doesn’t throw any of her shenanigans out at us in the next day or two.

See... she's back to her ornery, happy little self

The boys are playing hard... and crashing into nap time!

BTW, Lance and Brandon even sit the same way.

On a completely other side note, Brandon and I went out to dinner and we were talking about how much our lives have changed in the past nine-ish years.  It’s hard not to think that way… Boston is chock-full of students.  Like, really, there are at least 10 colleges in the city.  Yesterday, we sat at a random dive joint and sat next to some “kids” fresh out of college.  They weren’t quiet, so we could overhear everything in their conversation.  They sat talking about how amazing and original their weddings would be, and how they were going to raise their kids and how they were only going to feed them certain things (everything based on research, of course) and how they were going to live this amazing life that they’d always dreamed of.  Their innocence was kind of sweet… but we also had to giggle to ourselves.  Oh, life… how it’s so full of surprises.  I remember Brandon and I having the same conversations before we were married.  Uncountable curve balls later, we’re just trying to stay above water most days.  Sometimes the kids are in jammies until lunch… sometimes they eat happy meals… sometimes they have chocolate long past bedtime… sometimes we yell and react in ways that aren’t as controlled as we would hope to be.  You know – life happens and you fight like crazy to do your best.  Then there’s Ellie.  This little girl has been through the ringer and so have we, as her parents.  We’ve lost more sleep and had more breakdowns in the past nine months than we have in the last four years (and two kiddos) of parenting combined.  But you know, parenthood is kind of amazing… and by “kind of”, I mean really amazing.

Not until we had our own kids did we realize how naïve and selfish we’d been as single people or as a married, childless couple.  We had no idea how much time we really had… nor did we really appreciate a full night of sleep.  We had no idea how natural it was to always, ALWAYS put someone else’s needs ahead of your own.  Not until we had a medically complicated child did we understand deep, gut wrenching fear.  Not until we were knocked down time and time again emotionally did we develop coping mechanisms and a deep understanding of surrender and faith.  Not until we started raising a child with special needs did we truly understand empathy and compassion.  Not until we were completely unable to shoulder a burden alone were we able to accept the blessings and generosity of friends and family (even complete strangers).  Not until we had real struggles and real pain did we find that struggle and pain are universally relatable.  I’m not saying that you have to have children, (typical, complicated, or differently abled) to understand these things… these are just the things that have changed the paradigm in our family… in our relationships… in our lives. 

Do I have regrets?  Not when it comes to the kids.  I sometimes regret reacting to them (the boys) the way I do.  I don’t always keep my cool in the midst of a tantrum or downright defiance.  I’m working on that.  Do I wish we’d done things differently?  Maybe sometimes.  But mostly, I wish that it didn’t take me 27 years to stop being so selfish (that’s when I had Lance).  I wish that it didn’t take me 30 years to learn how to really empathize with others and find beauty in the simplest things… in unconventional things.  Having kids… especially since they’re all three so very different… has surely made me a better person.  They bring out a vulnerability that other people understand.  Our journey with Ellie has brought us through some of the deepest trenches we could have ever imagined… but these are relatable to others.  You might not have a medically complicated child or a child with special needs, but you may be painfully struggling with infertility or experiencing the battles of a changing family dynamic.  Our situations might not be comparable at all, but our feelings and our struggles surely unite us.

I guess what I’m trying to say is that this life we’re living is so much different than the life we thought we’d be living when we were college “kids” sitting around planning out our future.  We could have never predicted where our paths would lead… and thank God for that.  This life is more beautiful and complicated and messy and amazing than we could have ever dreamed.  We have downright awful days… yes… but we have more joy and love and fun than we ever imagined.  We also clean up more bodily fluids than we ever knew possible, too… but hey, that comes with the territory, right?

Okay – sorry for the random tangent.  Thank you for all of your thoughts and prayers as we continue to truck along this wild ride with our sweet Bug.  Thank you for reading along through my scattered thoughts.  As we prepare to wrap up our stay in Boston (praying it goes as planned) and bring home our Ellie bug with a brand new heart, we’re happy to share some pictures from our last few days here:

Music therapy... Ellie liked to feel the guitar with her piggies

Ellie loved making music with these, too.  

She ran her fingers through them and kicked them, too.

The music lady gave Ellie a maraca... coolest. toy. ever.

Jess - our primary nurse... Ellie LOVES Jess (so do we!)

 

Daddy blowing bubbles for Ellie

Daddy says it's okay to be Red Sox fans since Boston fixed my heart... 

I've never heard of a better reason to follow a team!

(Don't hate us, Balfour!)

Warning:  the next picture is of Ellie's incision and sutures... 

stop here if you're not up for that image...

I know this probably doesn't look great to you... but it's amazing to us.  She's healing beautifully!  Just below her incision are the two spots where her chest tubes used to be.  To the far left and right of her abdomen are the insertion sites of the wires to the external pacer.  Those should come out just before we leave.  I have to take these pictures so that when her scars aren't as visible when she's older, we can appreciate how much she's healed.