Please Understand

Almost every preemie mom has a list of things they wish others knew. Here is mine:

  1.  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).
  2. 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.
  3. 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.
  4. 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”.
  5. There are plenty of good sources to learn about preemies and the NICU. Please stop believing misinformation that is circulated like gossip.
  6. We live a very day to day existence. On tough days, it is one minute to the next.
  7. I miss many of my friends. We want to see you. Please invite us to visit or accept our invitation to visit.
  8. 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”.
  9. 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”.
  10. 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?

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

8 responses to “Please Understand

  • Nicole

    I hate “when will Max come home”-my reply has turned into, “when the doctor decides he is ready”. At first I would tell people that Max would be home around his due date, but as that is quickly approaching and he is still on cpap and now colonized with MRSA, I realized that preemies have their own schedule and don’t read calendars!

    Like

  • thebabydinosaurismine

    This is a great list. My favorite was when people stated the obvious. “He’s so small”, “Look at how little he eats”. I just wanted them to get that all of those things are a button for us, a sensitive topic. They may seem “cute” to you, but every time you point them out I’m back in the NICU crying by an incubator. Keep fighting the good fight!

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  • Fran Quarles

    All very good points…while I do agree with not wanting to hear about how another preemie is progressing because every journey is different, I was always encouraged by hearing from parents of preemies that were much older. Whether they were considered “perfectly normal” or still had struggles, they gave me hope when the doctors offered none. My girl is 11, she still has struggles but I couldn’t be prouder of her and how she proved every doctor wrong.

    Oh, I would add…stop looking at me horrified or judgmental when you ask me how old my 1 year old child is and she is still the size of a 3 month old. Yes, I feed her!

    Like

  • kelleywaleski

    You Said My Thoughts Exactly. While I Do Not Have A Preemie, I Might As Well. Thank You For Saying What We Are All Thinking!

    Like

  • A Miracle In the Works

    You hit the nail(s) on the head. And agree, please don’t mention how small she is…I know. I don’t need to be reminded!

    Like

  • talesofatigerlilly

    I can relate to this so much! My daughter wasn’t premature but was very poorly when she was born and spent some time in NICU. She is 6 years old now but this brought back some strong feelings from when she was younger x

    Like

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