Saturday, January 3, 2015

A Year At "Home"

I wrote this post for our family blog but with so many year end recaps floating around, I thought I would share here what our year looked like.  It wasn't a year of juggling work, a baby and training.  It was a year of survival, of learning to administer IV meds and tube feedings at home and hoping for a new liver for our baby.

One year ago (on Decemeber 31), I left my job with every intention of finding something with a more flexible schedule.  We also knew something might be up with Megatron when I gave my notice because his spleen continued to swell. Within hours of leaving my office for the last time, Megatron was was admitted to the hospital.  And that kicked off the year of the hardest job I've ever had: "stay at home mom to a medically complex baby."  So much happened early in the year that I hardly remember the details.  It was a couple days in the hospital, a couple days out, then back in.  It felt like this happened over and over and over forever but it was really "only" about two months.  It wasn't until I went back through my 2014 planner to transfer dates into my 2015 planner that I was able to grasp just how much we went through this year...and this was just for Megatron.

We drove over 5000 miles for treatment.

We attended at least 89 medical appointments/procedures.

We spent 50+ days in the hospital.

We dealt with nine weeks of 3-5 times daily vomit.

We spent a total of eight weeks in Pittsburgh.

There were two calls to 911 and two ambulance rides.

Don't forget the two helicopter rides.

There were two major surgeries.

Most importantly though? One new liver.

I didn't earn an income and yes, that was hard not just on the bank account but it was also emotionally hard.  I never wanted to be a stay at home mom.  But that's how it worked out and I'm so thankful it did.  Can you imagine trying to manage everything above while also working?! Ha!

Our sweet boy, despite the recent challenges, is thriving.  We've been able to devote our attention to not just his health and healing from two surgeries but also to making sure he caught up/stayed on track developmentally. You would never know he spent 50+ days laying on his back in a hospital crib, either too sick or healing from surgery, to do the much needed tummy time.  You would never know he was cut open from limb to limb...twice...because we worked hard in physical therapy to teach him to overcome weakness, underdeveloped neck and back muscles, and abdominal muscles that were severed.   You would never know any of it by looking at him.

I'm sure the last 17 months aged the rest of us by a decade and it shows on our faces but it was worth it.  The drained bank account was worth it.  It was worth it because now we, and the rest of the world, will have the joy of getting to know this sweet boy.

I have no expectations for 2015.  Whatever the year throws at us, we will just keep taking steps forward.  Even if we take some backwards steps from time to time, the goal is cumulative steps forward.