Wednesday, December 26, 2012

Notes from the NICU: Things People Say

Things that Help
I will be ever appreciative to all of the doctors, nurses, occupational and respiratory therapists, hospital staff, friends, and family who were able to say congratulations to us right off the bat. It felt strange, at first, for people to be congratulating me for failing to stay pregnant and for having a baby who had to live in a plastic box for several months. But it was the right thing to say. The word recognizes that what happened - a traumatic medical experience  - is not all that happened - we also had a baby! Something that should be celebrated! Something we should be proud of! Something that changed our lives! I saved every card that was sent to us, and I treasured every bouquet of flowers.

Everyone in the hospital refers to us as "mom and dad," even calling us that to our faces. This also seemed weird to me at first (what, don't they bother to learn our names?), but I am so grateful that they do this. Early on when there was no parenting I could do, when I had a hard time believing that I was a parent, I felt a little lost among the people who knew what was going on. Being called "Baby M's mom" made it easier for me to identify myself as such. It also helped us find our place in the NICU. Everyone else has a title: Doctor, Nurse, RT, Social Worker. Mom and Dad are pretty unique and definite titles!

Things that Hurt
I will never forget the words that a dear family member uttered when I called with the news of Baby M's arrival. "She might not make it." I wanted to scream. I know this person was trying to protect me in case the worst happened, and I knew (oh believe me, I knew) that this outcome was possible. But it was the last thing on earth I wanted to hear.

One friend, who I emailed with the news, wrote me back "I'm so sorry." I understand the sentiment that she was trying to convey - that she was sorry such a traumatic thing had happened to me, that she knew it wasn't what we'd wanted, but it still smarted. I'm not sorry Baby M was born, regardless of the circumstances.

Do not tell me statistics. Either I know them by heart or I am purposefully avoiding them, and your recitation of them isn't going to get to the fact of the matter, which is that statistics tell you NOTHING about an individual. Even the doctors refuse to quote me statistics when I ask for them, so I don't want to hear it from anyone else.

Maybe surprisingly, the words that I hate hearing the most are "You're so strong. I could never handle what you're going through. I couldn't cope."

Guess what?

I do not have a degree in coping. I have no special training in being a NICU parent. I had no preparation for seeing my child kept alive by machines. There is no secret to doing this. I just do it. Sometimes I am sure that I can't handle it, that if one more fucking thing lands on my plate I will completely go to pieces. That it isn't fair, and it isn't right, and this is not what I signed up for. But falling apart won't help me, and it won't help her, so I get out of bed, and I pump six ounces of breast milk, and I drive to work before the sun is up, I work a full eight hour day and I am more productive than I have ever been in my life while pumping every two hours, and I speed through rush hour traffic and I wait impatiently at hospital security and I scrub up and I get updates from doctors and nurses and I change diapers and I silence monitors and I untangle oxygen cords, and I read about surgery outcomes and medication side effects and disability statistics and the blogs of other preemie parents, I eat dinner from a charity and I pump more breast milk and I take pictures to take home with me because I can't take my child, and every night when I walk out of the hospital so tired I can't see straight, my heart breaks in two. And I drive home and pump milk all night and I do it again the next day. And it's worth it because every time I snuggle my daughter, I think I can do this.

And you could too, if you had to. You'd have no choice.


  1. Hello, I have a 2 year old daughter and she has liver disease. It is genetics so there is no cure for it. I don't know how she has it since we have no family history of it. Somehow she just has it and it's 1 in 100,000 live birth. I really love your NICU series. My daughter is in and out of hospital all the time and I still remember how hard it is the 1st year. I don't know how I get thru but I did. You are an amazing mom and things will definitely get better each day. I hope baby M is coming home soon! Take care!

  2. When my mom was diagnosed with cancer years ago people would tell me all about their friends and family members who died of the disease. Well, hello, that wasn't helpful. She's been cancer free for years now, but I still remember how hard it was to have conversations about her illness. The truth is in difficult times it's hard to figure out what to say. Keep in mind that most people have the best intentions, they just have trouble finding the right words to convey them.

  3. BIG BIG HUGS ((((((((LMMB)))))))))


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