TRIGGER POINT: SCHEDULING SURGERY

Levi will be 10 months old on Monday.  I just returned home from Levi's cardiologist appointment.  James is usually at Levi's appointments too, but today he is on a business trip and returns late tonight.

It's time for surgery.  The echo today showed that because of his severe aortic valve leakage, his left ventricle has dilated to a z-score of 3.  Four weeks ago it had a z-score of 2.  That's a significant increase and the main trigger we've been waiting for.

It's been a hard waiting game, knowing that surgery is imminent, but not knowing when.  Going from appointment to appointment, wondering if this is the appointment.  As much as we really, really hoped Levi would be older and bigger before he needed surgery, in all honesty, there's a little part of me that's relieved to have the waiting somewhat over.  But, I'm so sad for Levi.  That he has to go through this surgery, a slew of appointments and tests, plus he'll have to go through these things for the rest of his life. Because there is no cure for aortic valve disease, this is only the beginning.

After receiving all the opinions from the various centers, we've decided to put Levi in the hands of Dr. Frank Hanley at Lucile Packard's Children's Hospital at Stanford.  We spoke with him for the second time by phone just yesterday morning.  He's known as an outstanding surgeon and one that we're very comfortable with.  He has graciously answered our many, many questions and we feel like we can trust him with our baby boy.

As far as what he'll do during surgery, it's still not 100% determined yet.  He'll repair Levi's ascending aortic aneurysm for sure.  Then after beginning surgery and getting a good look at Levi's aortic valve, he'll determine if a durable repair is possible or if a Ross is needed instead.

So from here, our cardiologist will contact the surgeon's office with Levi's latest results and start the ball rolling for scheduling surgery.  She asked me this morning what would be ideal timing for us.  In a perfect world (which this is not!) it'd be after my mom gets out of school (she's a teacher) in mid-June.  Then she could fly up to Bend to watch the older boys while we fly down to Palo Alto, CA for Levi's surgery.  Recovery time, if all goes well, is 7-10 days, plus travel time.  I'd also love it if Levi could make it to his 1st birthday on June 18, without surgery.  It certainly may need to be sooner than that, and we'll do whatever is best for Levi.

We'll see what the surgeon has to say about timing once he sees today's results.  In the meantime, Levi is scheduled for another echo in three weeks on May 3, assuming that surgery is not scheduled before then.

I feel like I say this a lot, but it's hard to imagine sometimes that Levi even has a heart defect.  He is developmentally right on track, active, alert, adorable and happy as can be.  He's crawling everywhere and pulling up and cruising on everything, exploring anything within his reach.  He's babbling and eating table food.  This is such a fun age!  How can something be so wrong inside his little body?

We pray that these seemingly overwhelming challenges facing Levi will only make him stronger as a person. That his life story will be used to impact the people around him and glorify God.  As we approach the year mark of Levi's life, I know James and I are not who we were a year ago.  Our lives took an unexpected turn.  Though we wouldn't have chosen this path for Levi, it has shown us that God is in control and goes before us each day. Our priorities have been rearranged and are more clear now than they were before.

I've been listening to a new song on the radio lately, entitled "Blessings," by Laura Story.  These words about life's struggles have been an encouragement to me.

What if Your blessings come through raindrops 

What if Your healing comes through tears 

And what if a thousand sleepless nights  

Are what it takes to know You’re near

What if my greatest disappointments 

Or the aching of this life 

Is the revealing of a greater thirst this world can’t satisfy 

And what if trials of this life 

The rain, the storms, the hardest nights 

Are Your mercies in disguise

For now it's one day and one step at a time.  We trust God with the tomorrows.  He knows what's ahead and just what we need.  He is walking this journey with us and already knows the story of Levi's heart.