Days Like This

“Mama said there’ll be days like this, there’ll be days like this my mama said.”
– Mama Said, The Shirelles

Penny had a good first 11 days. She’s already jumped a few tall hurdles. Her day three and seven head scans came back with no signs of brain bleed, which is huge. She gained around 75-100g in the first week. She pooped. These are big steps in the right direction. But every nurse and doctor has warned us, there will be bad days, too. For every step forward there might be two steps back. It’s a rollercoaster and some times there will be dips.

Today we felt a dip. A step back. A bad day.

When you’re a parent in the NICU, everything feels like an emergency. Every beep, ding, and flashing light feels like the end. Last night and this morning the beeping was incessant. Babies born this early often contract bronchopulmonary dysplasia (BPD), a form of chronic lung disease. They don’t have fully developed lungs, so they need extra help outside the womb to keep them growing. She’s on a ventilator which helps her lungs expand and receive the oxygen they’re giving her, as well as nitric oxide to help keep that oxygen saturated. Over the last 24 hours she’s been needing more oxygen to keep her stable, and while that’s not surprising to the doctors and nurses, its gut wrenching to her mom and dad.

Yesterday, she was able to come off the nitric oxide, a step forward. Today, she’s back on it and at higher levels, two steps back.

When the alarms do sound, I’ve found the key is to watch the nurses. Are they panicked? Are they stressed? If not, we can probably relax a bit. Do they sprint to her side? Or do they give it a minute and stroll over to make adjustments when needed? If it’s the latter, then it’s likely our baby is doing alright. But you have to speak up and ask questions when you’re worried. That’s also key. Not just to quell your mind, but to advocate for the little one in that big plastic shell who can’t yet cry, let alone form words. You stare at your child a whole lot more intensely and with different eyes than their caregivers, so you might have some insight that otherwise goes unlooked.

It’s more than any one person should have to handle. One day you feel on top of the world, the next crushed by the weight of it. That’s why it’s so important for Jenny and I to be present for each other, to sleep, eat, and try to find moments to relax, to breath.

I worry about Jenny, though. Days like this are especially hard on her. There’s a bond a mother has with her child that we as fathers can’t replicate. Penny grew for 24 weeks within the walls of Jenny’s womb, they’re forever connected in a way only other mothers could understand. When those alarms go off, regardless of how the nurses react, I can see how much it pains her. I worry how someone can sustain that pain, potentially over months. But that’s my job, to hold her, to calm her, to remind her that no matter what we’ve got each other. And while there will be more days like this, there will be more good days, too. Whatever tomorrow brings, we’ll face it together. Together, we’ve got this. We’ve got her.