We became NICU parents just moments after our baby boy was born. And in the moments and hours that followed that, we became PICU parents, ECMO parents, and oh, actual parents too. It was always amazing to me how you could walk into a hospital as two people and magically come out as parents. In an instant you become parents and it just somehow works; you figure it out one day at a time and accept your new normal with this tiny human. Mark and I have quickly learned over the last 16 days that this also applies to NICU life. You somehow manage to find a way to adapt to your new normal, even when it’s not normal at all.
My day starts at 6 AM after a somewhat sleepless night. A quick shower is followed by a pumping session in an attempt to stock up plenty of milk for our baby boy and also keep my supply up. Breakfast and coffee are consumed while I stare longingly at my breast pump, waiting for the day it’s our baby instead. Lunch is packed and myself and several bags head out the door by 7:15 AM.
My new commute is no longer to an office, but instead to a hospital downtown. What should be a quick 30 minute drive takes an hour in traffic. I unpack my several bags full of books to read, blankets to switch out on our baby’s bed, and sweatshirts to stay warm and head up to the room we call home for now. The day nurse briefs me on any updates and plans for the day during the 45 minutes before rounds starts; I can usually squeeze in a quick hello to our baby and a kiss on the head between blood draws, suctioning, changing lines, checking vitals, and giving meds.
Rounds is usually attended by a dozen individuals; doctors of every breed, nutrition, child life, social work, etc. While I’ve already gotten an update from his nurse, I wait to hear of any last minute plans for the day or any concerns. Many of the stats and numbers slip by unnoticed, but there’s always the ones we know. In a matter of hours after joining the NICU you start learning “the numbers” and which ones you care about. You learn how to read the dozens of screens around your baby’s room and suddenly you care about end tidals, oxygen saturation, bilirubin level, B.U.N. levels, blood gases, ECMO flow, and fluid removal. I wait eagerly to hear all these results, even if I’ve already gotten report from his nurse, just to commit them to memory and wait for our next steps. Sometimes rounds takes a few minutes; but, when your baby is in a trough, this activity might last 10 or 15 as every professional has an input to the plan.
The rest of the day passes usually with a quietness that is enjoyable (at least now that things have slowed down). Labs are drawn, meds are given, and I spend my day staring at more numbers and pumping. Mark has returned to work and arrives at the hospital by mid afternoon. I’ve provided him updates throughout the day, but he’ll come in with a fresh set of eyes and ears to ask questions and retain information. We spend the rest of our day mostly in quiet reading books, playing card games, and working. We read to our baby every day; we stand by his isolette and tell him about life at home and all the people praying for him; we hold his hand and we’ll stand there for hours; we gaze at him, longing for the day we actually get to hold him in our arms; we imagine what his cry and tiny coos of babyhood will sound like; and we look at “the numbers”.
Everyday is changing; we thankfully have reached a steady climb and often head home to have dinner together. We are able to go home for dinner because our baby is still heavily sedated and intubated; it’s both a blessing and a curse. It forces us to leave, to see the outside world and breathe away from this hospital. But, it’s heart wrenching every second we’re away; the guilt of walking out of his room when he can’t leave weighs heavy on our hearts and it hurts. This steady climb will hopefully transition to less medications and extubation – a turning point and a time to adapt to yet another new normal where we’ll finally be able to spend nights with our precious baby boy in his hospital room.
The evening and night pass in an uneventful matter. If we have any emotional or physical strength left we finish some house chores; if we don’t, we veg out for an hour watching a light-hearted television show to simply turn our brains off for a short while. I spend the night visiting my breast pump every couple of hours. Usually some time around 12:30 AM I’ll call for an update about how the night is going; his night nurses have (thankfully) gotten used to my middle of the night phone call and patiently feed me updates and all the numbers I’m hoping for. I climb into bed after my phone call and wake Mark up to share what’s happened, and we discuss any changes, ups or downs. Then I drowsily drift off to sleep for a couple hours until it’s time to pump again. By 6 AM, we start all over.
It’s not normal. Our NICU life is far from normal for any new parent, but we’ve adapted. In the same way that new parents figure out parenthood, we are figuring out NICU parenthood with the constant hope that one day we’ll get to figure out normal parenthood minus the beeps, clicks, and numbers of the NICU.