Somehow, at some point you simply realize several months have passed and you've driven the same route, parked in the same lot, paid at the same parking meter, walked up the same flights of stairs, and rang the same buzzer to get in to the secure unit that your baby called home. Somehow you've done this every, single, day.
When meeting other preemie parents currently going through their own NICU experience I often get asked the same two questions.
"How did you do it?"
"Do you have any advice for getting through an extended NICU stay?"
These questions have often been two of the most difficult for me to answer. There has never been a black and white solution, no magic way of coping with your time in the NICU but having been asked the same questions so many times forced me to look at our experience and figure out exactly that... how.
Like I said before, there came a day when I felt like I was living my own personal groundhog day. I woke up, pumped, showered, packed up all the milk I had pumped for Hazel that night, grabbed coffee on the road, drove an hour and a half on the same route every morning, and parked in the same lot. It required very little thought... I was constantly on auto pilot. I went in the same entrance every morning, took the stairs up to the second floor, turned left, rang the buzzer, answered "Good morning, it's Hazel's Mom!" walked through the doors, hung my coat, scrubbed in for 5 minutes, and went to Hazel's bedside. I said goodmorning to her nurse, asked how Hazel had been overnight, and then I pumped (again) before starting my daily routine with Hazel. I would spend 10-12 hours in the NICU, say goodnight, and pull myself away from Hazel's bedside with an aching heart. I'd walk down the same set of stairs I had just been up 12 hours prior, walked back out the same door and into my car. Some days I felt numb, some days I ugly cried in the car before pulling myself together, and some days I was just okay and I turned on the music and hit the highway to head home. Once home, I said hello to Jeff and our dog Luke, I pumped, had dinner, called the NICU to check on Hazel, climbed into bed and started it all over again the next day.
When I started to realize my routine had become a routine it felt normal yet uncomfortable. I didn't want to be in this routine, but I was happy to have a sense of "normal" even if it was no where near what any parent should be used to.
But there were things that helped get me through those 6 months. The biggest thing was something Jeff and I decided from the moment we learned Hazel would be delivered early and that was to be as positive as we could be. We couldn't change the hand we'd been dealt, and being sour about the situation wouldn't help us to cope, and it certainly wasn't the kind of energy Hazel needed. We looked for the positive in everything and we smiled. Hell, we smiled A LOT in the NICU to the point where Hazel's pediatrician said "you are always smiling! It's okay not to smile sometimes" and there were times, where smiling was out of the question. I had days where I was frustrated beyond repair... I felt like I could scream, and some days I did. Some days I would go out to my car, and scream and pound my fists on the steering wheel. And I cried.... holy cats did I cry. But that's not to say we didn't make every effort we could to smile. And our nurses smiled, and the physicians smiled, and the support staff smiled. We said hello to housekeeping, and to the unit aids. We got to know everyone that was directly or indirectly involved in Hazel's care. Even the lady at the lotto desk downstairs would smile and say good morning.
We also asked questions. So many questions. Yes, we were those parents. But to us, knowledge was power. Knowledge gave us the ability to understand, and when we understood it wasn't nearly as frightening as when we didn't. And BONUS, it kept me from searching out Dr. Google for answers - and we all know how that ends.
The biggest piece of advice I've always given has been to try and be positive and ask questions. Don't be afraid of understanding what your baby is going through.
And as important as those things are, remember to take care of yourself. I didn't... and for the first couple months I held on until two mornings in a row during rounds I started to cry and thankfully it was Hazel's pediatrician on call both mornings because he saw the tears both days (which was highly unusual for me in the NICU, I typically didn't cry in the NICU, especially just out of the blue) and at the time I was annoyed that I had cried in front of him not once, but twice but eventually I came to be thankful for it because Dr. Stavel recognized the stress I was under. He could see I wasn't taking care of myself, and that I needed to step away. He suggested taking a day off from visiting Hazel and I just smiled and said "mmhmm" because what I wanted to say was "Are you fucking kidding?", so I smiled and nodded. Later that afternoon the NICU social worker who had been so supportive and helpful with resources throughout our time in the NICU stopped by Hazel's bedside and acted surprised to see me there. I just smiled and said "Beth, Dr. Stavel sent you, didn't he?" and she smiled and asked if I had given any thought to his suggestion. I told her I had and I just couldn't take a "day off" like hazel was a job. She understood, and we continued to chat about our days and she told me to drive safe with the possibility of snow in the forecast that weekend".
And then, the following morning the highway was awful, white out conditions and terribly slick roads and we made the decision to stay home for two days which forced me to take a day (or two) outside of the confines of the NICU. When I went back on Monday my mind felt clear again (as clear as it could be in that situation) and I felt more present for Hazel. My emotions were easier to control, and I was smiling.
My point being this, it's hard to be away from your sick child but you have to take care of yourself. If you aren't going to do it for yourself, then do it for your baby because they need you at your best.
When I saw Beth on Monday I told her how the weather had kept us home and that I was thankful it had because Dr. Stavel was right, I absolutely needed a mental break.
I tried to remind myself often that yes, this was not how we planned on bringing our baby into the world... it is never what you want for your child. But regardless of the situation, these days were still Hazel's newborn days and though I don't miss the NICU, I miss Hazel as a newborn. Like any mother, I still find myself emotional over how much hazel has grown since then. Those hours of snuggles, and teeny tiny feet... the tiny little cries.. it's all a part of her story and remembering that these moments were fleeting even though they felt like an eternity at the time helped me to savour them.
Ultimately, we survived the NICU by having a positive outlook and taking it day by day. If you are in the midst of your NICU journey I hope this will serve as a reminder to practice a little more self care, and to try to have a positive outlook. If you are ever feeling like you want to chat, please don't ever hesitate to reach out!