Sit Down, And Grab Some Egg Nog

I hate not having her here. It’s quiet and I feel like we’re missing something big – like the front door…or the bathtub. Something big and important that you need to have there and it would just be weird and wrong to not have it there if it were suddenly gone.

We get our front door back on tomorrow. Or today, by the time most of you read this.

At this point it’s a pretty sure bet, although I suppose we can’t discount the possibility of an eleventh-hour crisis of some imaginable sort, but…really? No. She’s done really well this week, and is pretty much back to her regular self now. She’s making lots of noises and moving around as much as her cords and her crib will allow, and at this point we’ve weaned her settings back to where they were before she got sick. She’s still isolated and under observation, but that’s just for the window view and the VIP service at this point. By the time most of you read these words, she’ll be home where she belongs and we’ll be taking it easy and just keeping her under observation.

The PICU Edition

I miss the NICU. Never thought I’d ever utter those words, but having spent two weeks now in the PICU—also known as the TCU, or transitional care unit—compared to the nursery down the hall, it’s way harder this time around.

In the NICU Nyana wasn’t able to crawl the length of her crib, and pull to standing and tangle in her cords. She wasn’t able to remove her bipap mask and lean over the edge of her crib when no one is looking or sit herself back up when I try to lay her down for a nap. In the NICU I didn’t have to bargain with nurses and care aids to keep her company when I left the room. And she definitely wasn’t able to scream for us to stay when we tried to leave her.

In the NICU Don and I didn’t know how empty our apartment felt without her, how silent our place is without her tackle, or how much we’d miss the schedule of Nyana time when she wasn’t with us. In the NICU I didn’t know just how much I hated the trek across the city to see her, how burnt the Second Cup coffee tastes and how dry the constant hand-washing and sanitizing was making us. In the NICU we had no idea exactly how much awesome we were leaving every night when we closed that door and left her. Leaving her every night in the NICU was exhausting; leaving her every night in the PICU is heartbreaking.

Back To The Beep

The original title of this post, when I started writing it on Saturday night, was The Emergency Room Edition. Then on Monday night when I sat down to continue, I changed the title to The “My First Cold” Edition. And now here we are on Thursday, four days into Nyana’s most recent hospitalization, and we’re fully entrenched in the beeps and the cord management and the nurses and the long yellow hallway—a hallway that is noticeably shorter now that we’re in the ICU instead of the NICU, but a long walk to and from Babygirl nonetheless.

Nyana occupies herself in the triage room, waiting for the doctor.

Treatments For Noah

It was almost a year ago now that I told you about my friend Olivia and her baby boy Noah. I called her Liz back then when I told you about her, in an attempt at anonymity for her and her family, but it was last Christmas we all learned of my friend Olivia who’d had a perfect healthy pregnancy that resulted in what doctors are calling “a random accident” in the delivery room which resulted in Noah being deprived oxygen at birth. Told that he’d never walk or talk, last Christmas Olivia’s family was converging at the hospital to say goodbye to a little boy they’d just met.

But then something of a Christmas miracle happened, and Noah proved he had a suck reflex. Despite being removed from all life-saving equipment, Noah survived, and in the past year at home with his family, has thrived. Diagnosed with HIE (hypoxic ischemic encephalopathy) due to his birth trauma, Noah faces a list of potential health challenges including intellectual disability, developmental delay, seizures and cerebral palsy.

Happy World Prematurity Day!

From the March Of Dimes website:

• In the United States, 1 in 8 babies is born prematurely.
• Worldwide, 13 million babies are born too soon each year.
• We’re working to address the crisis at home and abroad.

“Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive. November 17 is World Prematurity Day and when we focus everyone’s attention on the serious problem of premature birth.

“Like” World Prematurity Day on Facebook. Read stories from around the world and share your own. Help spread the word by updating your Facebook status with a message on premature birth. Together we can raise awareness of this serious problem and help more babies start healthy lives.”