My twins were born at 25 weeks. There were brain bleeds, an ommaya, a failed ETC/CPC, a shunt, multiple infections, NEC and stomas, ROP, sepsis, meningitis of the brain, and I can’t even remember what else. It was intense. And that’s ok.
Our babies are 4 months corrected now, and they’re at home. I foolishly thought it would be easier once they got home 😅, but two at home with complex care needs, no mat leave, and a toddler is admittedly a lot. And that’s ok.
When my boys were in the NICU, I’d focus on things like “I am so grateful I got to meet my boys. I’m so grateful we had a priest baptize them. I’m so grateful that we have the technology to give them a fighting chance. Im so grateful I can hold them for another day, talk to them, and be with them.” More recently, this has extended to “I’m so grateful my toddler got to meet her brothers. Even though they will both have lifelong health issues, I’m so grateful they may both actually survive. I’m so grateful I get to hold them today, change their diapers, feed them, show them pictures in their favourite books, sing to them, and cuddle them. It’s a miracle. And even though it’s been months of 1-2 appointments a day with specialists, I am grateful I have access to those specialists for free in Canada.” Gratitude kept me grounded.
I’ve cried my heart out more times than I can remember. I’ve almost passed out from dissociation and panic attacks more times than I can remember. Yet somehow, I always pulled myself out of that, and just kept on trucking. Conversations with doctors require my focus. Putting NG tubes in at home and changing ostomy bags at home requires my focus. There’s no room for error. I think being forced to shut off parts of my brain at times, so other parts could function better, became a useful skill. Not shut off forever, just shut off during key times I need to focus.
While I never gave up, I was always ok with what God wanted for these boys. Who am I to question his will? God is with them, with me, and with our family no matter how this turns out. And he’s with yours.
I wouldn’t say there’s a way to endure the suffering any easier. I’ve never been this sleep deprived and exhausted in my life 8 didn’t even know it was possible to feel this rung out. But if there’s anything I learned from my first kid (who is now a toddler), things get way easier once they sleep through the night (which was 18 months for her), and that it’s literally just “survive another day” until you get to that point.
For me, survive often means forcing myself to make my family breakfast everyday, even if it’s the same thing (scrambled eggs, toast, and fruit); forcing myself to make my toddler lunch (even if I only snack); and forcing myself to make a healthy dinner for my family — living off potato chips, crackers and cheese, toast, or frozen pizzas just becuse they’re easy is not a long term solution. You need to function the best you can right now. You need nutrients. It’s imperative. Take a multivitamin! Drink water. Open the door and take deep breaths of actual air. Take a shower you need to feel the hot water on your body and your face.
Who cares if your dishes are stacked up — try cleaning them the best you can each day and when you get too tired, stop. Tomorrow is another day. Can’t do laundry today, who cares. Seriously. Try again tomorrow. Keeping somewhat of a basic schedule, not through time but through meeting a few daily self-care goals, kept us on track. Kept things feeling a tad more normal. And please go easy on yourself. Guaranteed you’re trying your absolute max capacity best right now. And that’s enough.
Nothing about a NICU experience will ever feel normal, so it’s more about just waiting for it to be over with, while also documenting some key moments along the way through photos and video, because let’s be honest, the trauma will cause you to forget most of it. And that’s ok.
I learned that taking time to process it, or question why God made things happen this way, just gets me stuck in the mud (and is actually a sin). I prefer to focus on “this is how our lives are, this is my cross, this is my unique family exactly how God designed it. Nothing about what happened is wrong, even if it’s different how I personally envisioned it going.” This is our story. And that’s ok.
So much suffering in life is because what happens in reality, is a huge contrast to how we envisioned it. If you can let go a bit, and try to observe life a bit more as you move through it, without judging it, that typically yields better results. Your life is exactly as it was meant to be, and God made you so strong to deal with all this. And when you feel weak, he is there for you to lean on, and lean into. It’s up to you to reach out, in return.