Almost every preemie mom has a list of things they wish others knew. Here is mine:
- Even though Charlie is no longer in isolation, I am still afraid of her getting unnecessarily sick (and having to return to the hospital). Please cover your mouth when you cough, do not touch her when we meet you in a doctor’s office waiting room, and refrain from asking to hold her immediately after graphically stating how sick you are. Please do not smoke around my baby (or any baby).
- I am exhausted. She is no longer in the hospital but it does not mean our ordeal is “over”. We are swamped with medical appointments, counting calories, managing medications, and various therapies. She needs to be fed often, sometimes she fights feeding, and struggles to keep down what she has eaten. There is very little that is “normal” about our lives yet. I still need your support and understanding.
- I do not know when or if she will reach her next developmental milestone and neither do her doctors. I can not answer questions such as “When will she be able to walk?” or “When will she be able to wean off of formula?” When people ask these questions, it reveals how disconnected they are from my world. It is similar to when we were constantly asked, “When is she coming home?” when she was in the NICU.
- I’m begging you. Please, no more anecdotes. Every baby (and preemie) is different. Charlie is doing things on her own time. I am okay with this. I do not want to hear a story about some other preemie that is “fine”.
- There are plenty of good sources to learn about preemies and the NICU. Please stop believing misinformation that is circulated like gossip.
- We live a very day to day existence. On tough days, it is one minute to the next.
- I miss many of my friends. We want to see you. Please invite us to visit or accept our invitation to visit.
- I had a plan of how I wanted to do things but it did not work out. I know breast is best, reusable diapers are better for the environment, and so forth. Many choices were made for me based on Charlie’s medical needs. I do not need to be “educated”.
- People who understand the least about what we have been through often feel they know the most about what is best. I am tired of being told “what I need to do”.
- I am really proud of my baby. We celebrate A LOT.
Other NICU moms, what do you think? Did I miss anything? What would you add?