November 21, 2016

Yesterday, I got to clip Louis' finger nails and change his diaper. Funny how those chores are usually dreaded but in my current reality, they're a treat. Things seemed to be on track. Louis had his chest tube drain removed and stitched up. His arterial IV was also removed, which means he's on lower medications. But I'm really frustrated today. There's no where to put my frustration, and no one to blame it on or anything to take it out on, so bear with me.

Medicine is a delicate balance and so are my emotions. Everyday I am so grateful that this life-saving hospital is in our backyard, and there are the most genuine, selfless, caring people here who are giving my baby boy the best chance at a healthy life. Everyday I am grateful for that, without reservation or doubt. EVERY. SINGLE. DAY. But some days, like last week; a emergent open heart surgery for the second time, followed by almost a week on ECMO with an open chest, and now today, are hard. And maybe it's my own fault for getting my hopes up, but I had imagined I would get to hold Louis today. We anticipated that they would decide to take his breathing tube out and then we could hold him.

Last night, they had increased his feeds through his feeding tube and he vomited a bit, so they stopped feeds. Then did an x-ray this morning to find that his lungs looked a bit cloudy. Cloudy lungs could mean a number of things; perhaps aspiration from the vomiting (a fancy way to say 'down the wrong pipe'), or possible withdraw from the heavy narcotics (Morphine, fentanyl), or even a potential complication with his heart repair. The latter, is not a big concern right now, as his heart rates, pressures, and rhythm look great. 

So they've ordered some respiratory therapy, where a therapist comes and uses this funny rubber suction cup and taps on Louis' chest to free up whatever is clouding his lungs and then they suction it out through the breathing tube. The first time we were in the hospital, something similar occurred and it set his surgery back an entire week.

I realize a week is a relatively short period of time, considering he's just a baby and there are children here who are living their lives in the hospital. But at the same time, he's just a baby and we've spent most of his newborn life being terrified and in the hospital.  It has been two weeks since I held my baby. The last time I held him, I was carrying him out of our front door and into an ambulance, with my shoes and socks tucked under my arm, heart in my throat, holding my breath. 

There are so many unknown variables that have led us down the path we are on. And it's easy to let my mind wander into thoughts of "why me?! why not someone else?! How come everyone else can have a healthy baby?!" But that's not fair or constructive or helpful to anyone, especially not us. I have to allow my gratitude to squash all those negative thoughts which is a real test of my humility. 

I read this in my book last night;

"I was too dazed to follow right away, because there was something new happening, a wheel inside my heart I'd never noticed before, and it was spinning so fast it made me dizzy. And the farther away I got, the faster it spun, like there was an invisible cord unreeling from it that stretched between us, and if she went to far it would snap- and kill me. 

I wondered if this strange sweet pain was love."  ABSOLUTELY HOW I FEEL EVERY TIME WE LEAVE THE HOSPITAL WITHOUT LOUIS.

In this minute, I AM REALLY MAD BECAUSE I'M SAD AND I CANNOT SEE PAST THIS HARD MOMENT YET. AND I JUST WANT TO HOLD MY BABY. 

And now, I will quietly get over it.