Tales of TCH: Part The First

So I'm sitting in a room at the Ronald McDonald House at Texas Children's Hospital. Nyx took a turn for the worse and things got hairy really fast. She had a couple of Tet spells (turning blue, basically) on Tuesday. By Wednesday morning at her cardiologist visit, her oxygen saturation levels had dropped to the high sixties and low seventies. Our cardiologist got on the horn and within minutes we had orders to high-tail it to TCH. We were admitted through the ER a little after five and then to the cardiovascular ICU (CVICU) an hour or so later. She continued to have low sats so the decision was made to get her into surgery ASAP.

This morning at 7:15 Nyx was wheeled into the OR for a shunt procedure. She's just too tiny for the full repair so this was the best option at the time. A little after 2 in the afternoon, she emerged from the OR after the successful placement of the shunt. Her oxygen saturation levels are in the mid-nineties now and she's pink! Pink!!! My baby is pink!!!

This is a big deal, folks. Until today, Nyx has been this weird bluish purple pink depending on whether she's calm or crying. Eventually I'll get up some pics and you'll be able to see the difference.

She's currently sedated and in the CVICU until further notice. She has a long way to go before we leave the CVICU. She has to come off the ventilator and start breathing on her own again. She'll have her chest tube removed. (They had to deflate a lung to get the shunt into place.) She has to start eating again. And so on and so forth.

But we're hopeful she'll make a speedy recovery.

So anywho. That's what's going on here. It's been an incredibly stressful and harrowing forty-eight or so hours. I don't think there's any experience quite as heart wrenching or terrifying as watching your fifteen-day-old baby being wheeled into an OR for heart surgery. It's just...too much.

But we're hanging in there and slogging through it. It's sort of sad but this is our new normal. We've spent more time in hospitals than we have at home. And it sucks. Big time.