When my twins (2 fraternal twin girls, now 19 months and healthy) were born at 29 weeks, I quickly shifted my gaze from the SWAT team of doctors and nurses in the delivery room to my understandably exhausted and concerned wife, and thought, “Wow, this turned out a lot different than I had ever expected having kids might.”
From that moment on, I found solace in emotionless metrics. What were their APGAR scores?… Did these change between birth and five minutes later? Once they were given what we hoped would be very temporary housing and care in the NICU, these questions were replaced by ones like: How many episodes did they have last night? (i.e., How many times did one or both “forget to breathe independently?” or “have their heartbeat slow to a dangerously low rate?”) And by the way, how many grams did each gain in the last 24 hours?
For the next 3 months, my wife and I alternated between being grateful when one of our girls surpassed the 3 pound weight threshold or went a night without an episode, and frankly felt helpless at other times when they experienced setbacks including an inability to digest milk and improper blood flow between their lungs and heart.
We went religiously to the NICU every night during visiting hours and (especially early on) craved even the slightest touch of one of their hands – the simplest of pleasures. We quickly grew accustomed to all of the machinery and monitors, though never truly outgrew the alarms that were triggered when something wasn’t quite right with one of our babies.
At times, we were amazed by the responsiveness of the nursing staff while at others, we were outraged at what seemed like a pronounced delay in addressing our babies’ critical needs. We dealt in seconds, not minutes.
The reason I became a preemie mentor for Graham’s Foundation is that I remembered how low and defeated I felt watching my babies struggle to survive and feeling there was little I could do to influence their course. During our time in the NICU, we learned 4 things that I believe may be helpful to others traversing the preemie journey which I will share here:
- Lean on each other – you and your partner that is. You can keep each other going through an experience unbelievably difficult to imagine and equally difficult to adequately convey.
- Counter to the first point, don’t JUST lean on each other. Seek connections with complete strangers (one proximal group is other parents in your NICU); this seemed like an obvious thing to do, despite the fact that I am not the type to quickly disclose my personal trials to those I don’t know well.
- You have one job when your baby (or babies) are in the NICU – be your kid(s)’ advocate – plain and simple. Accept nothing but the best possible care available for your little one(s) though temper that with the understanding that NICUs staff professionals expertly trained and prepared to deal with crisis situations
- Keep the faith – I am not religious in any way shape or form though I do have faith. The NICU journey is one that requires it and an iron will at a level you might never expect you were capable of – not only faith in trained medical professionals, but also faith in what seems like a completely crazy situation somehow at some point coming to a positive conclusion… welcoming your kid(s) home.
I know the NICU journey was one I wouldn’t wish upon my worst enemy. I hope some can benefit from what I learned in navigating it.