“For being warned that this journey would be a rollercoaster, flip flopping between compressed/gavage and CPAP/no CPAP isn’t so bad considering where we started… I will be very ready to take Oaklee home when we get to. I’m grateful we’ve had a little more time to prepare at home, so in a weird way, this has been good, but I just want it to be over with now.”
On the 29th, Oaklee was one month old. She’d spent 31 days in Area 11 of the NICU. We’d spent 31 days going to and from our child who was confined to one of two rooms she’d ever been in. While she laid in her isolette, her only responsibilities sleeping, eating and breathing, we ran around like chickens with their heads cut off, always feeling like we should be somewhere else.
Any NICU parent – and especially a long term one – can tell you in some fashion about the schedule guilt they faced when their child did time in the NICU. Where should you be? The hospital? Home? Work? Surrounded by your friends and family? In hindsight, I see there was no right answer, but in the moment, I was convinced there was one and I was never getting it right.
I’m at the hospital, and I feel like I’m wasting my time, like I should be at home setting up our nursery.
I’m at home, and I feel like I should be with my baby, like I might be missing out on a “first” we’ll never get back.
I’m at work, and I feel like I should be surrounded by friends and family, like I can’t be myself with my co-workers because I can’t be emotionally eratic at work.
I’m surrounded by my friends and family and I feel like I should just be with my baby, like she’s the only person in the entire world that matters right now.
In so many ways our lives were both put on hold and expedited at the same time. We needed to be in several places at once, but we needed to focus on our baby. Deciphering what that looked like or how to do it best was no easy task.
Kevin and I struggled to say yes to our typical summer lives. Was it ok to enjoy watching a movie, sitting by a campfire, going boating or hanging out with our friends? Was it ok to enjoy being away from the stress of the hospital? Was it ok to enjoy anything when our baby was fighting for her life?
Throughout our first month of NICU life we learned we had to take time for ourselves or we weren’t our best selves for our baby. We learned we couldn’t be “doing” or “going” 100% of the time. We sometimes just had to “be”.
Unfortunately, the hospital is not a place you can just “be”. You don’t just get to snuggle with your baby on your living room couch in your jammies. You can snuggle, sure, but while you do, you’ll be half dressed in a room full of people with cloth screens as your only length of privacy and a monitoring of your baby’s hopefully good looking vitals as your entertainment. And mid-snuggle, you might have a nurse tell you it’s time to put your baby back in her isolette. Or you might have a doctor come in and chat with your half naked, skin-to-skin-practicing self about how your baby failed her trial off the CPAP. Or you might have an isolette across the room get filled with a new, critically ill baby fresh from her mother’s womb. You can’t just “be” in the NICU.
So every Sunday morning we would make a tube of Pillsbury cinnamon rolls and a pot of coffee and watch our church’s sermon from the previous week on a computer in our living room before going up to the hospital. On Saturdays we’d either sleep in and take care of things around the house before heading up and spending the second half of the day there or we’d get up early, get to the hospital and leave with enough time to run some errands or relax at home.
In Oaklee’s first month, we learned that our NICU journey would be hard the whole way through. We learned that no matter how well our baby was doing, this part of the journey was still next to unnavigable. We were making progress, yes, but we were exhausting ourselves with both the places we needed to be and the perception of the places we needed to be. We were exhausting ourselves with our responsibilities, our relationships and our minds.
It’d been one month.
We were exhausted.
Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP
In the stats:
Birth weight: 2lb, 12oz
Last known weight: 3lb 13oz (7/29/17)
Gestational Age: 32 weeks, 1 day
Days in the hospital: 31
Sets of visitors to see Oaklee: 29
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 25