NICU Insensitivity

You announce you are pregnant, which is supposed to be one of the happiest moments of your life, but at that point, you can start to get some advice that you didn’t necessarily want or need.

One instance for me had to do with a menu choice at a restaurant.

It is amazing how something so simple can actually be somewhat hurtful. Now prior to going to the restaurant I looked at the menu and had done my research based on what I wanted to order to make sure I knew it was safe during pregnancy so that I would make good choices for my baby. When I said what I was ordering, a family member was like “you are pregnant you can’t eat that” like I was some sort of moron. I then recalled that she drank during her pregnancy, and yes some say a glass of wine here and there is ok or if you can mentally justify it because you can’t live with out it then it must be fine, but if you look at the actual research no amount of alcohol is technically ok during pregnancy and it has been linked to some developmental disorders. I remember never saying anything to her about that because I would never call someone out like that and it is their choice and they are an adult even if it was something I would never do, so I remember in that moment feeling hurt that it was done to me.  Of course there were other small things here and there during my pregnancy, but I learned to fluff them off as I realized that there would be advice or things said that I might not agree with because that is called life and everyone has an opinion, but we can all make our own decisions.

Now you have a baby that was born too soon.

No one can understand what you are going through other than other NICU parents. This is not for the weak. You become more medically versed than you ever expected in your life and you literally watch the tiniest human you have ever seen fight for their life. You assume your family and friends will understand what you are going through automatically and that they will know the type of support that you need, but that really is not the case. Instead things can be said or done that hurt you because they do not realize what things you might be sensitive to now that you are a NICU mommy or daddy. I call this the NICU Insensitivity.

Some of the NICU insensitivities I had to deal with were certain things people said or did not do that I thought they would for my baby and my husband and I.

Some were comments in social media posts that may have seemed innocent to the person or a way to vent or maybe a way to get sympathy from others, but it seemed like the most insensitive thing in the world to me because of not only what I was going through, but what the parents I had met in the NICU were going through that had a much longer and harder road to go down than what I did with Poppy.

For example, there were posts made that were complaints about being a stay at home parent and how hard it is or not having a moment to yourself now that you have a child.

Your first thought is “welcome to parenthood, that is what happens when you have a child and are responsible for another life,” but when you are in the NICU, all you want is to have your baby home with you.

You want the opportunity to hold your baby whenever you want and not at scheduled times and to be the one to care for them. You want them off of the machines and you don’t want to hear beeping anymore. Some NICU parents do not ever get the chance to take their baby home because their little one lost their fight and your heart breaks for them. You don’t want to feel as alone and isolated as you do in the NICU as you sit guard of your baby while the world moves on around you.

Once I got the opportunity to be a stay at home parent for a while, I really didn’t understand why they would ever think it is so terrible. It was the best few months ever to me. Now that I am back at work, I can’t wait to be home with Poppy at the end of the day because I feel like I might be missing out on something great that she does developmentally while I am at work. So this just added to the frustration with those posts. Those comments hurt because you want nothing more than the opportunity to have your baby at home, but you can’t tell the person how selfish they are being at that point because they won’t understand your point of view or will think you are being insensitive to them. So you don’t comment or even acknowledge that you ever read those posts for fear you might say something you could regret later.

The first weekend Poppy was born, we had a ton of visitors and phone calls, which was amazing. Then that began to dwindle. You are watching a literal miracle happen before your eyes each day your baby fights for their life, but you feel like this is insignificant or an inconvenience for the people that mean the most to you when they quit showing up and you can’t understand why, even though you know their life does go on. I will always say that our parents were the biggest support system during our NICU stay and we are so appreciative of that, but others that you would expect to be there weren’t and that is what hurt. This would make that feeling of loneliness seem so much greater than it was. When we were finally able to let family members and close friends hold Poppy, we were so excited because we could finally have all of those first photos in the hospital that you can’t wait to have for baby books and such, but not everyone came. Some that didn’t come made the biggest deal out of this when they had their children that you just thought how hypocritical of them, or why do you think this moment for us is any less important than it was for you. These are now pictures we will never have.

The final insensitivity I will mention is drama.  You never know when it will show up, but showing up while in the NICU is more than anyone can handle. I remember the music therapist who was supposed to be there working with Poppy one day after a dramatic event happened ended up being someone I could talk to when I needed it most and she would always check on me after that point. The nurses that you get to know end up being great therapists as well. I just remember thinking “why do I have to deal with this now on top of everything else and why are these people so willing to take care of me when they didn’t have to and when they are supposed to be taking care of my baby?” Of course I will be forever grateful for what they did, but why did it have to come to that?

I remember all of the feelings of frustration I had over these different things during my time in the NICU and after we got out, but couldn’t quite figure out why I was so sensitive to them and still am today or why these people couldn’t realize how much it was actually hurting me.

These are people who are supposed to love me, but why were they betraying me in a way or just causing so much disappointment?

Why did I internalize everything instead of saying how I felt because some of these events still bother me?

It is probably because I watched my child fight for her life and heard the stories of other babies doing the same so it makes some of these feelings seem trivial in the grand scheme of things.

It is because I gave birth to my hero that is truly a miracle and some people might not have experienced feelings like that before.

It is because I met a new village of friends, my NICU family that is so supportive that I know I will be able to go to them for the rest of my life. It is because we can move on from things that hurt us even though we won’t forget them.

It is because I realized it is okay to be sensitive to things if you feel it is important.

It is things like that that make us stronger individuals and more aware so we don’t make someone else feel the same way.

It is because I watch Poppy grow everyday and she continues to amaze me with what she can do.