Hard Day’s Night

“It’s been a hard day’s night
And I’ve been workin’ like a dog
It’s been a hard day’s night
I should be sleepin’ like a log
But when I get home to you
I find the things that you do
Will make me feel alright”

–A Hard Day’s Night, The Beatles

Sixteen days. Sixteen nights. Sixteen mornings. Going to sleep anxious, waking up to find she’s still here. Good news in the morning, bad news at night, and vise versa. A roller coaster of emotions and updates. But she’s doing it. She’s fighting the good fight.

On Monday morning, the team told us the line running through Penny’s umbilical cord could no longer draw blood, so they’d need an alternative. The best option they had was to install a broviac central line, a surgically placed line to a vein in her chest.

Surgery.

The word lingered in the air. Jenny and I dared not look, in hopes it might dissipate. But this is what she needed, so we faced it head on.

Her size is always a worry. Things that would be common place for a preemie just two or three times her weight are a struggle for someone so petit. Our doctor didn’t have exact numbers, as they don’t see many babies Penny’s size, but her ballpark estimate was they had a 50/50 chance at placing this new line.

Unfortunately, the timing wasn’t ideal. She was needing more oxygen at the moment, and was showing other signs of potential infection. Her blood cultures came back positive. The procedure would need to wait. And as the venerable Tom Petty so aptly put it, the waiting is the hardest part. We sat with her most of the night, watching her oxygen needs ebb and flow. A traumatic tide, coming in and going out every 30 minutes or so. At some point, we decided to say good night. It’s never easy to leave the NICU, on nights like this it seems impossible.

The next morning, she was doing better. Better in this case, however, meant it was time to call the surgeon. Then we wait. We’re aiming for afternoon. More waiting. Looking at 2 pm. We wait some more. We’re going to prep her at 4. I don’t think even Tom Petty waited this long. We sat in the family lounge, distracting ourselves. Jenny with her embroidery, me with my 600-page preemie textbook. The different ways we cope. Every sound outside the door pulled our minds back to reality, our eyes darting to the lethargic clock on the wall.

After what seemed an eternity, but was actually more like an hour and a half, Dr. Matoba popped in.

“She’s ok! She did great, the line is in. She did great!”

Our stomachs and hearts switched spots. The blood rushed in and out of our heads. The air was sweet with relief. She continues to amaze, this tiny superhero of ours.

We ate well that night. Jenny had gnocchi, I got steak frites. We had a glass of wine. We felt normal for a minute. We celebrated a win, knowing it might only last that long. And it did.

The next morning her stomach looked bloated and shiny, a potential sign of necrotizing enterocolitis (NEC), or what my textbook says is “the most common and serious intestinal disease among premature babies.” It can happen for a variety of reasons, and can lead to death of intestinal tissue and, in some cases, a hole (perforation) in the intestinal wall, requiring immediate surgery.

Surgery.

There’s that word again. Inescapable in a place like this.

They removed the obsolete line from her stomach. They stopped her feedings, started x-rays every few hours, and kept her on her antibiotics from the days before. We waited again. Another day. Another night. Another morning.

We woke today, quickly dressed, and power walked our way to the hospital. She looked good. She looked healthy. She looked cute. A fully formed baby who could fit in your hands. Our very own Polly Pocket.

Her stomach looks better, her oxygen needs dwindled. They think her belly may have been irritated from the old line and taking it out cleared it up. Or perhaps all the meds she’s been on for infection, pain, and sedation had her intestines backed up. She is my daughter, though, so an early April Fool’s Day prank is a very real possibility. I’m on to you, little one. I can’t wait to get you back in 16 years.

Not every day and night are like this, but enough are to keep us on our toes. And NEC is not off the table. Like most things with preemies, the odds get smaller as they get bigger, but they’re always at risk of something. We’ll keep waiting, though. However many days, nights, or mornings she needs. The good news, the bad news. Whatever it takes.