What Not to Say Post NICU

Plenty of posts exist suggesting things not to say to current NICU parents. But what about when baby goes home? Believe me, the questions keep coming! People seem somewhat less restrained now that our 27 weeker is home. I believe that most people have good intentions, and if you have never walked this walk, it is difficult to understand how certain questions or comments could be taken the wrong way. Here are things NOT to say to the proud parents of a NICU graduate:

1. What was the total of the hospital bill?

Really? Our daughter spent 79 days struggling for life, and you are concerned with money. Everyone knows that hospital stays are not cheap, especially when they last 11 weeks! My answer to this question tends to be "priceless." When you ask about hospital bills, it feels like you are putting a price on our baby. I mean, I don't go around asking friends with new cars exactly how much they cost! I realize people may honestly be curious, but trust me, it's just plain rude. Keep all comments about finances to yourself. If the parents want to talk about it, they will.


2. Is she doing (insert milestone here)?

Again, I know people may mean well when they ask if L is smiling, rolling over, sitting up, etc... However, I cannot possibly get you to understand how much worry and pressure parents of premature babies feel (obsess?) about these things. It feels like your baby is constantly being watched and judged. I find that few people really understand "adjusted" age when it comes to milestones. When I am in public and strangers ask L's age, I just say 3 months, even though she is 6. I don't have the time or energy to explain. Trust me, my baby has enough doctors monitoring her every move.

3. She's so small! My baby weighed (insert giant baby weight here).

Okay, this is the one that gets me. My second child weighed 10 pounds at birth. I have experienced a big baby. But people should know that although my daughter is small (relatively speaking) for a 6 month old, she looks absolutely huge to us! If you have never seen a 2 pound human being, you cannot possibly understand how much progress she has made. People seem to think that all preemies need to do is grow after they are born. That is often the last concern. She has overcome the vent, cpap, nasal cannula, feeding tube, PDA, brain bleed, blood transfusions, PICC lines, infection, and the list goes on and on...

4. So, everything's good now?

This was said to me last week at my older daughter's preschool. It was meant with the best of intentions. It is very hard sometimes to step away from all I have learned over the past 6 months, and realize that the general public understands very little about the ramifications of prematurity. Hell, I was one of those people not so long ago. They catch up by age 2, right? Most people seem to think that when you come home, that means that the hard part is over, but for some it's just beginning. Many preemie parents won't be able to answer this question for years, and some not at all. It also suggests that things are only "good" if your baby has a perfectly clean bill of health, and while that would be fantastic, the definition of "good" to preemie parents could simply be the fact that we got to take our babies home. We saw some families that were not so fortunate.



5. You don't plan on having more children, right?

I'm so glad that some people feel the need to come into my bedroom and make decisions for me and my husband. We clearly need help, thanks. While this does happen to be our last child, I want people to understand how this statement makes a couple, particularly the mother, feel. It suggests that something was done wrong that led to a preterm birth, that the woman is defective and this situation is so horrible, that it would be irresponsible to risk repeating it. The cruel thing about premature labor is that in many cases, such as ours, there is no known cause or warning that it is going to happen. Just the week before our daughter was born, I received a glowing report from my doctor and was told I was on "cruise control" until the birth.


What should you say post NICU:

1. I've been thinking about you.
2. I'm here if you ever need to talk.
3. Sometimes actions speak louder than words. A card, meal, or other small gesture can mean the world.
4. What a little "ass kicker!" This is probably my favorite, and if you are a fan of The Walking Dead, you know this is what they called baby Judith. Trust me, preemies who make it home are ass kickers in every way. My daughter has been through more in her short life than me and the other adults in my family combined! Let the family of a preemie know that you recognize just how strong their little miracle is!

When NICU Dad is Also a Doc

I remember watching my husband over the course of our daughter's 79 day NICU stay. Born at 27 weeks, and just over 2 pounds, she was covered in wires and tubes and the beeping of machines were the lullabies played in her hospital room. As terrified as I was as her mother, I could sense that my husband was dealing with a feeling of helplessness that he had never experienced.

You see, my husband is an orthopedic trauma surgeon. He fixes people in these dire situations. Give him an OR, and he will use whatever screws and plates are necessary to piece together broken bones from car crashes and other unimaginable accidents. He didn't know how to help our daughter. He wasn't trained for that, and it killed him inside. This picture sums it up:

He could only stare at her and will her to fight this battle. If ignorance is bliss, his medical knowledge was torture. With every brady or desat, his mind would take him to the worse possible scenerio. Was she getting an infection? Did she need more respiratory support? Did her belly look swollen? NEC? Finally, instead of trying to solve her problems medically, I watched my husband transform from doctor to daddy, and all of a sudden, there was a lot of this going on:

His heartbeat and body heat could do what 4 years of medical school, 5 years of residency, and a year of fellowship could not. Father and daughter, skin to skin. She was his baby girl who needed him as daddy, not doctor. And with that, they both began to thrive.