What the NICU (and NICU parents) can teach the Resistance

Each new headline hits like a wave — each one strong enough to knock me off my feet, leave me gasping and sputtering in the sand and salt, struggling to regain my footing.  Each one bringing a new and different level of pain, yet this combination of exhaustion mingled with fear and grief feels strangely familiar.  I scan back and quickly find the corresponding memories — of course! The NICU.  (That’s Neonatal Intensive Care Unit for the uninitiated.) It’s where my twins spent their first four months of life, where I began my journey as a mother, fifteen years ago.

It occurs to me that different as the events of the twenty-four hour news cycle may seem from the world of tiny babies struggling to survive, NICU moms (and Dads) and all special needs parents may have much to teach the rest of us about learning to survive and even thrive under a Trump presidency.  Strengthening our resilience without becoming hardened.  That is the balancing act called for in these challenging times.

So here are some “Lessons from the NICU” translated for a wider audience.

 1.  Look at the baby, not the monitors. Go to the Source

If you’ve never visited one before, you may be unprepared for what a noisy place a NICU can be. In the NICU, babies are constantly monitored for various vital signs. Each measure has its specific range, and alarms go off if the readings go above or below that predefined range. Preemie parents quickly learn to interpret and rely on the feedback from the dazzling amount of information on the monitors, to the point that some not so jokingly request to bring a set home at discharge.

Which is why almost from the beginning, NICU nurses train parents to look first at their BABY when an alarm goes off.

In a time when the free press is under continual attack from the president as “fake news,” where Russian bots are actively working to sow chaos and division, while it seems every day brings new revelations of how the companies we entrusted with our information have abused that trust. It’s no wonder people throw up their hands and say they don’t know what to believe.

But critical thinking is not dead. And it is a teachable skill. It starts with going to the source (or as close to it as you can get) for information on the issues most important to you.

We can train ourselves to do a few simple checks to find out where information comes from and whether it is credible.

Who is publishing the information? What is the agenda behind releasing this particular information and the timing of the release. Speaking of timing, when was the article published? Is this new information? Or is this old news repackaged with a click- sit headline to look new? Does it fit with our real-life experience of what is happening?

2.  Watch her, wait.  See what she does.  Watchful vigilance

This one frustrated me immensely when my own children were in the NICU.  I would be in conversation with the doctors about some condition or other that they had and I would ask, “What do you do for that?”  The response would come back, “Watch her, wait.  See what she does.”

I’ve since come to realize what good advice this is, not only in the NICU, but in almost any fast-moving situation where multiple factors are at play.  Rather than introducing yet more variables into the mix, it takes a fierce combination of patience and vigilance to just stay the course.  Treatments take time.  Allow what you have done already a chance to work.

The thing about this watching and waiting is that it is active.  This is not passive acceptance.  This is staying alert, ready to press the record button or take other direct action at a moment’s notice.

3.  Go get some rest Self-Care is Vital

As new parents of a critically ill infant it is tempting to stay at your baby’s bedside 24/7.  And today’s NICU, with private rooms encourages that. But while a parent’s presence is important, parents need care, too.  As more than one nurse put it “you’ll never have better babysitters than you have right now.”

It’s important to remember in any crisis situation that goes on for more than a couple days that life goes on. If you have other children, they need to get to school, and do homework and have regular meals and bedtimes. Providing that structure for them is helpful for you, too. As we remind each other in most of the resistance groups I participate in on Facebook, be aware of your needs. Tag out when you need to. Then return when you are rested and rejuvenated.

4. Keep to your “normal” routines as much as Possible

Routines provide structure and help us to move forward in our lives. This was especially important for my friends with older children at home who needed their parents and were too young to be expected to understand why their parents weren’t as available as usual while their new sibling was in the NICU.

Routines help us as adults too. While we may keenly feel the chaos of the administration, most of us have jobs or families that need us to be fully present to our own lives.

Daily Prompt: Fragile

via Daily Prompt: Fragile

 

Six hundred ten grams

Twenty-four weeks gestation

Miracle babies

A haiku seems appropriate for how tiny and fragile my miracle twins were.  Born at 24 weeks gestation “on the dot,” their survival was by no means assured.  The day before they were born I had turned the page in my pregnancy book to 24 weeks, and read “Welcome to the window of viability.” Of course we knew it was serious.  But the medical team wasn’t panicking, so I decided I wouldn’t panic either.

Amazing how, with all the technology and medical smarts we have, sometimes it all comes down to the will to live in a tiny scrap of human flesh weighing barely more than five sticks of butter.

Months after they were born, a member of their medical team confessed to me they worried the entire first month of their lives that they would lose one or both of them.  But 13 years later, they are still here! And although they have lifelong challenges as a result of prematurity, today our lives are  no longer oriented around the fact of their premature birth the way it was when they were babies.  They are middle schoolers, teenagers (!) with distinct personalities and interests.

A Defining Experience

Yet their premature birth remains one of the defining experiences of my life.

The NICU is a place no one intends to experience or wishes on anyone.  But having done so, it is a bonding experience like few others.  I have many times been in awe and gratitude at the amazing people who have come into my life as a result of my children’s premature birth.

Four years after my children’s birth at Women & Infants Hospital, I returned to the hospital, this time as the first Parent Consultant for the Neonatal Follow-Up Clinic.  In my six years in that role I met many families similar to mine, giving them support, suggestions of resources, and mostly hope that someday life could be something like normal again.

A Book? Yes, A Book!

One of the first projects I was handed was a thick folder of papers and pictures that it turned out were left over from the calendar project they had done the year before.  Neonatal Follow-Up Clinic Director Dr. Betty Vohr said to me, “Wouldn’t it be nice to put these stories in a book?”

It took five years and a whole team of people from all over our tiny state to bring to fruition, but in 2012, Precious Premies: The Post NICU Years was published!  (It is available on Amazon at the link above.)  It features 31 first-person “Inspiring Stories of Hope and Survival from the Littlest Babies in the Littlest State.”  These are all babies who were born at Women & Infants Hospital and followed by the Neonatal Follow-Up Clinic.

If you, like me, enjoy being inspired by the paradox of how something so tiny and fragile can prove to be so strong, I invite you to check it out.