Prematurity is a world you never know exists, unless life takes you there

Taking a unexpected shove into the NICU world is hard enough, but it seems that not many people understand what you are feelings. Here are a few ways to describe what I was feeling and hope that it is helpful.

What is the Parent Feeling?

Guilt. Wondering what have I done to my child? Did I take something that caused this? Did I do something to cause this? Failure. Why couldn't my body carry this child? Shock and fear. No one can tell you the end result. No one can tell you what will happen hour to hour. Disappointment. I was afraid that I had disappointed EVERYONE. Like it was my fault. Denial, grief, loss, joy, sadness, elation, anger, terror and powerlessnes. Most of these emotions come within a short amount of time.

Some emotions that come as they start their travel into the NICU journey:

They feel alone and abnormal.
Because the NICU experience is out of the norm and a relatively "secret" place, there are not many people the parents may know who have experienced it first hand and can lend support and guidance.

They feel uneducated.
Since there is usually little, if any, preparation for a preemie birth, there is not time to prepare and educate yourself on what will happen. Consider that parents normally spend nine months reading, attending classes, talking to doctors in preparation just for the birth process that is only 1-2 days in total. In comparison, preemie parents are thrust into a birth that was unexpected, with terms that are unknown, with an outcome that was totally unprepared for, and without any teaching or education to arm themselves for an experience that often lasts several months. Many parents do not even know if their preemie will survive the birth, let alone what happens behind the NICU doors!

They feel isolated.
As parents start to learn information about their baby at an incredible rate to overcome these emotions and cope with a special needs infant, they become educated about preemies. However, just as they begin to understand it all themselves, they find they are now the "outsiders" because they are the only ones who understand this NICU world and their preemie. Now, unless they explain every detail to friends and family, they are left feeling alone and isolated when they try to communicate.

They feel alienated.
This fine line they walk can leave parents in a tough spot. When they do not explain, people do not understand and do not know how to react. But when they do explain, people still sometimes do not know how to react. Parents can feel even more alone and alienated from those to whom they are close.

They feel pressured
At a time when parents want to focus totally on their baby and their own adjustment, they can feel immense pressures from family and friends. Grandparents and family members can unknowingly place a huge amount of undue pressure on the couple. They want to be included, be informed, be a part of what is happening, be present. They may also want their feelings acknowledged and their questions answered. They may feel it is a priority for others to address their own needs and feelings.

A few other tidbits of advice I feel should be given:
Acknowledge the baby's birth and treat it as normally as possible.
Watch that you do not treat the baby as abnormal. Find something to admire about the baby when you see it or a picture. (Avoid: Why is she so tiny? Does she have all her body parts? I don't know if I could hold a baby like him.)
Lavish the attention and gifts that you would if the baby had been full term. Lend congratulations to both parents. Hug them. Tell them you can't wait to meet the baby. Although we had a preemie we were so proud and wanted to share pictures. I wanted a baby shower. I wanted others to be proud of my baby.

Acknowledge the great difficulty of a preterm birth. Realize that parents are facing many challenges and do not have time to relax or recover from childbirth, as much as the misconception adds to that belief. Do not minimize the stress and struggle. (Avoid: Gee, I bet it's nice to have the nights to yourself. You are lucky you didn't have to go through the end of pregnancy. I wish I had nights full of sleep when I had a baby.) This one was a big one from those who were pregnant....

Don't abandon the parents!
While the time crunches and pressures of the NICU take its toll on relationships and friendships, accept that this is a temporary condition. Do not be offended when the parent doesn't respond to phone calls and visits. They will when they can, which sometimes is weeks away. Often when the baby gets better and comes home, the parents will have more time for communication. Until then, don't forget to keep up with them. Things that especially appreciated...prepared dinners, thoughtful cards, small baby gifts, encouraging messages on their answering machine, decorating the house when discharge time arrives.

Rise to the occasion when they need you.
Often parents will call when the tough really hits and they need your support. Offer company, prayer, compassion at these times. This is when they need you the most. Don't allow their prior lack of communication to affect the support you offer them now.