Home at Last!

Yes, we're finally home with Jonah.  He was discharged Monday.  After a morning flurry of therapists, nurse practitioners and doctors coming in to assess Jonah one last time, we were finally given the green light:  we could go home.  There was a lot to do:  get pulse oximeter equipment, schedule the home health nurse, find a cooler to pack up the gallons of frozen breast milk archived over the last 3 weeks, run to Walgreens to pick up baby aspirin, reflux medications and vitamins/supplements from Walgreens (note: no cardiac medicine!), sign discharge paperwork, etc.  Many of his favorite nurse girlfriends at the PSHU stopped by to see him off.  So by 3pm we were all packed up and had Jonah ready to go in the car seat!  We were nervous, but so excited and proud....we may have held our breath the whole way home:)

Jonah did great for his first car ride.  He slept most of the way, but by the time we were pulling into our neighborhood, he was fussin'.  And the fussin' didn't stop.  We were quickly overwhelmed with trying to sooth and feed Jonah, unpack and get organized around the house.  Before we knew it, it was 7pm and we realized we hadn't eaten all day.  Luckily reinforcements, Jonah's grandparents, showed up just in time with dinner and a helping hand.  Jonah quickly behaved for his company, sleeping soundly the entire time.  Unfortunately, that would be the last time he would sleep the rest of the night.  Mom was up all night with him.  Dad got a couple hours of sleep, but often interrupted.

The schedule just doesn't allow for sleep.  Jonah needs feedings every 3 hours.  It's a 2 man operation at this point. One of us consoling Jonah and keeping him calm, and the other holding up the syringe elevated at the right height to control the speed in which the milk runs through the NG tube and into Jonah's stomach.  Each feeding takes 30-40 minutes to administer. Then there's the milk preparation, the cleaning, the diaper changes, Mom's pumping, giving the meds...and by then it's time to feed again.

Currently we have 2 challenges:

1. 1 in every 3 meals has been ending in a spit up/throw up. We're still trying to figure it out, but it seems like something is causing an upset stomach.  We have a couple theories and are just trying different tactics.  It might be the formula (which is added to the breast milk for extra calories).  Each time we've skipped the formula, Jonah has kept every drop down.  It could also be the timing of the Reglan. 
2. Keeping Jonah calm and happy.  Jonah's heart is still healing, so it's important to calm him down the minute he starts to fuss.  We understand he's a baby...and babies cry, however when Norwood babies get too worked up it causes unwanted blood flow and pressure in the lungs and can make for further distress. 

Overall, the first 24 hours seemed to be a balancing act of what works and what doesn't, what is normal and what isn't. We're scrutinizing every detail. Needless to say we are facing as much of a mental challenge as we are emotionally and physically. Then again, each moment we have had with Jonah in our arms, looking up at us in the comfort of our own home, we delight in the fact that we have our courageous little boy with us completing our family!

My first bath

My Radio Flyer ride to step down room

Hit the gas daddy, we're going home!