Being a parent to babies in NICU is the most terrifying experience and also the most isolating.
It was terrifying because we truly just did not know if our babies were going to be OK. Being twenty three weekers they had complicated health issues. They had compromised lungs- machines had to literally breath for them for a very long time, and there were times when actual resuscitation happened. They had compromised brains with JoJo having a grade three brain bleed. They had complicated hearts, they both had holes in their hearts that we had to wait and see if they would close over if not its surgery. They had compromised skin that was tissue paper thin that the mere touch could peel it away. They had compromised stomachs; their tiny stomachs were too immature to digest milk and they would writhe around in pain. They had compromised eyes, as you can see from photos of the early days they were born with their eyes fused shut, you are waiting waiting for them to open their eyes but you are also terrified “Its too soon! You’re not supposed to see the world yet!! You should still be safely tucked in my womb!!” and once those eyes open then begins the weekly eye checks to check for retinopathy of prematurity which can lead to blindness.
So, there’s no “congratulations!!” “You have had two beautiful boys!!” there’s no extravagant gifts, no visitors, no family members taking over for a couple of hours so you can have a luxurious lay down. There is just you and your partner clinging to each other for dear life. There is just that pure fear that is icy and makes its way through your entire body so that you are frozen. You are literally frozen in fear. Every time your phone rings your stomach drops, you shake as you answer it, you stutter “huh huh hello?” terrified about what the hospital is going to tell you. Terrified over what’s gone wrong now? Terrified they are going to want to have that ‘talk’ terrified you will have to make a decision to pull your babies off life support. And then at the back of your mind in the deepest darkest place there is a tiny voice that pops up every now and then and says, “but even if they do make it Lucy, are they really going to be ok?” and you push it down down down. I will have to face that when I come to it. Right now, all I have is today. Today they are alive. This minute. This second, they are alive.
So without meaning to we totally isolated ourselves. We had no room to think of another human being. There was no room for anything else. So, if we came home and there was only one piece of cold pizza left we shared it falling into bed. Did the bills get paid? We don’t care. We can deal with later. Did I reply to my best friend’s text? I can deal with that later. Lawn overgrown? Who cares. Do we have clean clothes? Deal with it later. Did I thank Tim and Sarah for the beautiful flowers and kind words? Deal with it later.
The day started rushing to hospital checking my phone every five seconds for any news from the hospital. Running into NICU in time for the doctor’s rounds. Listening our hearts dropping. Our minds exploding, only to be interrupted by my pumping alarm. Pump. Sit with the boys. Find out as much information as possible. Pump. Ask a million questions. Pump. More sitting staring at our boys in their clear boxes. Finally go home for dinner order takeaway pizza third night in a row. Who cares. Pump. Fall into bed. Wakeup at midnight to pump again. Mind racing with a million questions a million scenario’s. Finally get to sleep at five am only to be woken by my pumping alarm at six………and then it just started all over again. Just like that. Day in Day out. That’s why it’s called the NICU Groundhog Day…..until well, the changes happen and you finally finally get your little NICU wins.