Wednesday, May 9, 2012

On Special Needs Parenting, Part II

"Please don't deny our despair, just be there with us.  If you can't give me back my dream, help me through this nightmare."  Janice Fialka, on her experience in the NICU
I didn't originally intend for there to be a "part 2" when I last wrote.  However, I just completed a webinar for work on recognizing mood disorders in parents of NICU babies.

This is a subject I really, really don't like talking about.  It's simply too close.

As the webinar opened, the speaker recognized the diversity of "attendees."  And he stated that at least one person currently had a baby in a NICU in Chicago.  The baby's name is Emily, and he dedicated the webinar to her.

I cried for twenty minutes.  As the list of symptoms of postraumatic stress disorder came barreling at me through my computer screen, I could see myself as I was 2 1/2 years ago.  I thought about Emily and her parents, and how I just wish I could hug them.

The day before Sadie was delivered via cesearean, Chris and I were taken to Riley for a tour of the NICU.  We walked down a sterile-smelling corridor with brightly-painted walls, before coming to a desk with an attendant who had to open the doors to the NICU modules.  The doors flung open.  The bright walls were replaced with gray ones.  The faint sound of muffled cardiac monitor alarms poured out of every door.  We entered a module with ten isolettes.  It felt like I was walking into a picture of a polio ward from the 1940's, with rows of iron lungs.  I hated it, and proclaimed that I didn't want my baby to be there.  As if I had any say in the matter.  Back in my room, my father-in-law tried to reassure me that this was exactly where Sadie needed to be, that they were the best in the business.  But, as a mother, I knew that it was no place for a mother and her child.  Unnatural, impersonal, clinical.  Dreams of delivering with a doula were gone.  Visions of kangaroo care hopped right out the door.  My unborn child, whom I had carried and protected for seven months, would be surgically removed from my body and placed in a plastic shoe box for the next 3 weeks.

For six days, I did not get to hold my baby.  She did not feel like my child, nor I like her mother.  But once she was placed in my arms, I was surprised by how much of the NICU world around me disappeared.  The beeps and alarms, even the staff and other parents, faded into the background.  We were given a screen, and Chris and I were able to block an area between two isolettes and truly be alone as a family.  Everything changed after that.  I became a member of her team.  I gave her her first bath.  We took her temperature, changed her diapers, rotated the placement of her pulse oximeter; we even got to dress her in preemie clothes that my best friend bought for her.

Joy started to trickle into our dark world.  And when Sadie moved out of the NICU and into the infant unit, I fell in love with her.  Chris had gone back to work, and I would hold her all day, stopping only to pump milk (usually I didn't even eat).  I still had my dark moments, and to this day I still struggle with flashbacks.  But I was finally liberated by the freedom to parent my baby girl, to hold her and touch her at will, to feed her and dress her and care for her.

How can you help someone with a baby in the NICU?
  • Just be there.  Don't abandon them.  It's okay to be there in silence, but just be there.  
  • Don't minimize.  Having a baby on a ventilator is not the same thing as the time you took your four-year-old to the ER for a sore throat.  Don't pretend to understand, unless you actually do understand.
  • Recognize that the parents are grieving the loss of the childbirth experience they thought they would have.  Their dream is lost, it's painful, and it matters.
  • Congratulate them.  Ask to see pictures. 
And if you are a parent with a baby in the NICU, I've been there in the trenches.  Virtual hugs to you.  You are stronger than you think.

2 comments:

  1. Thank you, I'm moving into a new group of friends and some of them have had premies, and one just brought her son home last week, another is in danger of having a preemie, it is nice to get a view into their world and perhaps be able to give a little assistance.

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  2. What a thoughtful friend you must be! These moms are lucky to have you in their lives.

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