The Home Stretch

Hard to believe it's been two weeks since my last update.  It's bizarre, the weeks have flown by but the days have been L-O-N-G.  Our calendar, for the most part, has been clear, which is weird.  In the last five years, that's never been the case.  So, I guess it's nice to take a breather and not to be hustling to get out the door every day, all day.  But, it has made for some difficult days.  Like never-ending, what seem like 40 hour days.  However, this scenario is not likely to happen again, oh, for the next 15 years so I guess I won't complain too much.

Elena has been doing really well.  She has definitely had some good days and some bad days, but in the last week, it's becoming evident that she's on the mend finally.  She's happier, more interactive, less tired and can be moved around a lot easier.  We've been fighting some major reflux issues for whatever reason, but that's been the worst of it lately.  That, and the nights.  We get a good night (two or less wakes) about every four terrible (awake every 30 minutes) nights.  I mean a newborn may be easier than Elena has been at this point!  It's hard to figure out with Elena if it's reflux, her leg, or just wanting to make sure Mom and Dad stay close.  I tend to ALWAYS think it's the latter, but Daddy (whom Elena has wrapped tightly around his little finger!), usually disagrees with me, shocking I know!  This happened with the last surgery.  She got used to us running to her with every little peep and kept up that routine for like a year until something that I can't remember that we did to fix it.  I'm really looking forward to being awake all night for the next infinity.  Maybe the newborn will be like Cal and win all awards, ever, for sleeping?  Please?  God, help us!

Now that we are emerging from the post-surgery survival mode, I'm beginning to feel the anxieties of the beginning of the school year arising.  It's reallllllllllly scary sending your five year old to Kindergarten, especially with all the needs and accommodations that come with Elena.  The whole process is a lesson in lack of control, which of course, I hate.

Oh yeah, then I'm having a baby sometime in the next four weeks.  So there's that.  I do have the car seat washed, a set of white onesies set aside, newborn diapers ordered from Amazon and three swaddle blankets on the ready which means I'm pretty much ready.  It's hilariously opposite from the preparations of a first (or even second) time parent.  Poor third child.  I can say that because I am one.  I promise we'll figure out a name for him/her but for now, there's A LOT to do.

I do want to thank all of you who have been so thoughtful and kind to us the last couple weeks.  The meals, the prayers, the texts, the encouragement has all meant so much.  It has definitely made the surgery awful-ness, much more doable.  

Home

We're home.

We got home last night about 8pm and I don't think I've ever been happier to be here.  My shower, my couch, my bed....Calvin!  We left the hospital yesterday morning at 9am and drove straight through.  Elena was the champ.  She never fussed one time.  We stopped twice to get her out, change diapers/dressings and move her leg around, popped her back in the car and off we went.  We have been amazed at how well she has done thus far.  Riding in a car seat 72 hours after a major orthopedic operation for 11 hours is unimaginable to me, but it was nothing for her...Chad and I complained more than she did!

Last night she woke up just once (hallelujah!) so we were all pretty darn well rested this morning.  We've been able to manage her pain with just Tylenol and overall, she's doing really well.  Granted, she's still "off", lethargic, painful to move around, her digestive system is a little awry and her little body is bruised and swollen but she is doing so much better than last time. And we are SO thankful.

We are so appreciative of all the messages, texts, prayers, meals and love we have received.  It has been such an encouragement to us.  It's definitely a crazy (and I mean cuh-ray-zeeeeee) season in our life but our support network has been amazing, and we are thankful for each one of you.

The last month of our lives has been so beautifully orchestrated.  Everything came together fairly easily for this all to happen and I totally recognize the blessing that is Dr. Nuzzo.  He was worth the trip all the way to New Jersey a hundred times over.  The fact that we were able to have an alternative to what 99.9% of orthopedic doctors would do to our little girl (that literally has a 100% failure rate over time and an up to 2 year recovery) makes all the difference.  We are so fortunate to have had the opportunity for him to fix our precious girl.  That being said, we won't stop praying that this was the LAST orthopedic surgery she'll have to face for a long, long time, if not ever.

For now, we'll be hunkered down here at home, enjoying a freed-up summer schedule with the sweetest little patient and adorable 2 year old.  That, and waiting for this other little babe to make his or her arrival AND give me that looooooong over due glass (or bottle) of wine. Cheers!

Here's Elena yesterday on our ride home, happy as can be!

Happy Birthday to Our Five Year Old!

What a fifth birthday.  While obviously not ideal, she had a really decent day.  We had some major vomiting issues over the night that we can pretty much chalk up to the anesthesia.  That curtailed this morning and we actually had an above-average-expectation day.  

Elena seemed comfortable and pain-free, except when we had to move her and the four needle sticks that it took this morning to get a blood draw.  Other than that, she napped on and off (as did we).  We read her some books, watched a couple shows and listened to her usual tunes.  Medication has been minimal and she even braved a brief PT session today.  

All of this reminds me of her incredible strength and resiliency.  This girl has endured far more than any five year old should.  She presses on through every challenge with her brave face and even a smile.  My heart aches that we have to put her through this but to see how she gets by is incredibly inspiring.  If only you could see her incision today or hear us describe what the doctor did to her and know that she was giggling today when we would flush the toilet, squeal when I read her Dr. Seuss or smile when Daddy was kissing on her; the trauma her body has taken is no match for her happy spirit.  

And today, of all days.  It's supposed to be a day where you have a Pinterest-worthy party, celebrate with her little girlfriends, eat cake, open presents, blow out candles.  But for me, it's a bittersweet day, one where I remember how perfectly healthy she was.  Where I dreamt of all that her life would hold, as all new parents do.  It certainly wasn't this.  Yes, today we always celebrate the blessing that she is in our lives, but I also grieve for what it was supposed to be and for what she has endured the last five years.  And what a reminder as here I sit, in another hospital room, comforting my birthday girl as she winces in pain with every movement.  

But my Elena, my precious five-year-old, Elena.  You my girl, are our light.  And even though we grieve for you, we thank God for the constant blessing that is your every breath.  You are brave, resilient, beautiful and exude joy.  From the moment I laid eyes on you, I was changed for the better.  I love you more than words can say and am so proud of you.  My sweet girl, happy birthday love.

Day 1 Down

This will be brief because I am exhausted.  Our day started at 4:30am and it has been incredibly long.

Surgery went well.  The doctor remained perplexed by Elena's case all the way up until he had her in the OR under anesthesia and could really examine her.  Fortunately, he was able to manipulate her enough for her not to have to have the more invasive procedure.  She had the same procedure she had on her left hip with a bit more extra, what he called "bone shaping".

Overall, she's done fairly well today.  She was pretty darn uncomfortable from about 5pm to 8pm, we think from pain and nausea.  We are hoping she can relax longer than the 20 minute increments she's been able to most the day.  Considering we are all running on little sleep, this would be a huge blessing to have a somewhat peaceful night.

Our hope for tomorrow is to be able to start her feeds again, with no vomiting and to be able to see her a little more comfortable than she was today.

Thanks to you all for the encouragement, prayers and messages.  Knowing Elena's team and our family has been covered in prayer has been such a comfort.  I say it all the time, but we could never get through this without the enormous support network we are blessed to have.

Xox
Chad and Emmalee

Surgery Tomorrow

Just wanted to send out a quick update.  We made it to New Jersey safely and, though it was a long 11  hour drive, Elena was a road warrior!  Not one fuss out of our awesome girl.  We saw the doctor yesterday morning and he still wasn't sure upon examination what procedure she will have.  He thought it best to wait until he had her under anesthesia to really check the stability of her hip socket. Her surgery is first one tomorrow morning at 7:30am.  It's going to be an incredibly long day for us and an unimaginably difficult one for Elena, so your prayers are appreciated.  We feel very at peace with whatever procedure she has to have and have full confidence in Dr. Nuzzo.  We just hate that our precious five year old has to endure this.

We have had a fun couple of days with her and are glad to see her so happy.  And she has been SO HAPPY.  For her fifth birthday present, we took her to see The Lion King on Broadway in NYC yesterday, and needless to say, she loved it.  It was a special treat for our girl.  We are slowing things down a bit today in anticipation of tomorrow's exhaustion.

Thanks for all who are praying, sending encouraging words, love and even helping at home.  We couldn't make it without everyone's support!  And lastly, we miss Cal terribly but know he's loving all the attention from his grandparents.

Xox
Emmalee