There's so much about this experience that I simultaneously want to bleach from my brain because it's so draining and I just want to move on to better days and I also don't want to forget at all because this journey is what currently defines my life, defines the beginning of Arthur's life, and is what I will reflect back on forever when I think of how far we've come.
So. In order to not forget what it means in the most practical sense to be a NICU parent, this post is going to detail a normal day.
When we were at Arthur's birth hospital in Roseville and I had just freshly been discharged as a patient, Hunter and I needed to quickly come up with a visiting schedule that worked for us beginning the very next morning.
We needed to consider Arthur's schedule for the day so that we showed up at the beginning of his "cares" which is the routine that manages every three hours of a NICU newborn's life.
Cares begin with waking up and being changed, examined, having one's temperature taken, and being fed. The rest of the care routine may include other specific treatments for baby, but those are the basics. For example, when Arthur was still wearing his CPAP, the beginning of cares is when his nurse would switch out his nasal mask for a nasal canula or vice versa in order to lessen the risk of skin breakdown from being in contact with the same shaped device smooshing on his face for too many hours. His pulse oximeter on his foot would also be switched to the other foot for the same reason. After those things are finished, the baby is expected to sleep or rest until the beginning of their next care routine at the end of that three hour cycle. Timing- wise, it was pretty familiar sounding to a typical newborn routine, but unlike "real life", in the NICU, it is truly like clockwork.
If the parents are involved and baby is stable enough, they can change baby's diaper, take their temperature, watch the nurse do their parts, and then hold baby while they eat and sleep.
There's no rule that parents must arrive at the beginning of a care cycle, but for Hunter and I, this is how we manage our plan for the day. We feel it's important for us to get involved with Arthur's routine and then relax with him when all the chores are done.
While Arthur was at Roseville, our day began at 6:15am when we would get up, pump, eat breakfast, get ourselves ready, pack our lunch and snacks for the day, pack the pump, and hit the road for 30-45 minutes of morning rush hour traffic no later than 8:30am.
This means we got to the hospital in time to pump (again) and then go see Arthur for the beginning of his 9:30am cares. Some mornings we would have frozen milk from home to pass off to the nurses, and other days they would be begging us to stop overstocking their freezer. I never could get a hang of bringing an amount that appeased everyone. Oh well. Arthur always had plenty and that's all that really mattered to me.
During our first visit of the day, it was Hunter's turn to do the care routine and then hold Arthur skin to skin for his tube feeding and rest time. A tube feeding for Arthur takes 45 minutes. A large syringe with his pre measured milk is popped into a metering machine that is hooked up to his feeding tube and it slowly presses the plunger down over the course of whatever timer the nurse punches in.
We always ended our visit with about 45 minutes to an hour left in the 3 hours to tuck Arthur back into his isolette and let him finish his nap undisturbed. We took this opportunity to go eat our lunch and sit in the quiet of the car (there is nothing like 20 minutes of silence after the hubbub of the NICU) before the beginning of the next routine at 12:30pm.
But before that routine began, you guessed it, I had to pump. Good. Lord. People. They say it's a full time job. It is indeed a full time job. I either pump every two or every three hours to time out our day correctly. The mental gymnastics of scheduling 8 sessions in 24 hours with NICU visits and car rides in between was a steep learning curve to get a handle on at first.
After all that, it was my turn to take over the chores and enjoy my own skin to skin with Arthur.
During these times, Hunter and I would listen to the goings on around us from behind our privacy curtain, we would talk about Arthur, talk about how the day was going, how we were feeling, hum songs, or just sit quietly and stare at our baby. We also took exactly 4 million pictures.
Once that visit was finished, we would head out, I would *gasp* pump before we got in the car, and we'd get home around 4pm. Exhausted. Hungry. Dragging ourselves to bed early.
We did this routine until Arthur was 10 days old and then he was transferred to the hospital only 8 minutes from our home because his medical needs were far fewer and matched the level of care available at our "home" hospital.
Our routine suddenly needed to change with the new location. Additionally, his cares had been adjusted to begin an hour earlier (8:30am) a couple days before because another baby was assigned to his same routine times but her needs could not accommodate a schedule change like Arthur's could.
Now that we don't have to drive as far, we don't have to get up any earlier to make it to his 8:30 cares, and because we aren't so far away from home, we can split up our visits to be once in the morning and once in the evening instead of spending seven hours away from home. This allows for lunch at home, little chores, and NAPS. Glorious naps.
The ugly trade off is that our home hospital has different policies around visitors during COVID times and we were not made aware of this until *after* our transfer. Hunter and I could no longer visit together, so we needed a new plan.
Since the transfer, we arrive at the hospital together at 8:15am and Hunter stays in the car until I'm done doing Arthur's cares and he's done with his feeding. Then we switch and I go sit in the car until 10:30 at which point Hunter comes back and we go home for pumping, lunch, nap, pumping again, chores, snack, and...pumping again. Is anyone else tired of this yet? I can assure you that I am. Our hands are cracked from all the parts washing in hot water and soap. No amount of heavy duty lotion does the trick for long. This is the reality of pumping people.
At 5pm, we leave the house and repeat what we did during the morning for his 5:30pm cares, except Hunter goes first and recently he has begun to get to feed Arthur a bottle with just a fraction of his normal amount of milk before he is hooked up to his feeding tube machine. Arthur is just beginning to learn how to eat with his mouth and gets a couple of practice runs a day now. It's very tiring work for him, so it's a slow and steady process of introducing it.
While I wait for my turn, I pump. Yes, in the car in the parking garage. Gotta hit that 8 session goal.
We get home by 8:00pm, eat dinner, do our nighttime routine, I pump one last time before bed (but let's be real, we'll be up twice in the night to stick to the schedule) and we begin the day all over again at 6:15am.
We are ruled by alarms set on my phone to remind us when to do things. We have many conversations a day checking in to make sure neither one of us is forgetting something because it doesn't seem to matter how many times you do the same thing - if you're sleep deprived at all, it takes two brains and lots of reminders to get the simplest tasks done.
This life is hard. All newborn life is hard, NICU or not. We only know this version.
It's a huge mental load, a huge emotional load, and it saps your energy even though you didn't do much physical work all day.
The keys for us to keep moving forward without completely burning out are to prioritize eating, sleeping, communicating about what we need, and spend at least a few minutes doing something just for ourselves each day. My "doing something for myself" is sometimes writing while I wait in the car for my turn with Arthur in the evening...which is where I am presently.
The final key is to have a lot of grace. Nothing is getting done at home. And that's okay.
We eat food my mom made for us because making food is absolutely not in my wheelhouse right now. We do the bare minimum laundry to stay in comfy clothes. I don't think I've swept the floors in approximately one millenia. And that's okay. It's all okay.
These days are insane. They're abnormal. They're overwhelming. They're exhausting.
They're the reality of our lives as NICU parents.
And now I'm going to go squish my baby for one perfect hour. Goodnight.