What we wish our family and friends knew about having a preemie/NICU/sick infant.

I read this on a facebook site and also on the mothering.com discussion board and copied the lines that I could relate to for you to read. I apologize for some of the harshness, but there were moments that I had all of these feelings at least once. Just to clarify, I AM NOT thinking all of this everyday now, and alot of this may not have been the way I would have worded it...


•Please don't judge me or my choices(this includes my birth choices and choices made in the NICU). This was not my dreamed for pregnancy, and nothing is going the way I want it to.
•Please don't tell me all the horror stories you know about pregnancies gone wrong. It just adds to my worries. My doctor probably has done a very good job educating me about risks and outcomes. Once people knew I was having problems, I heard all about theirs, their family, their friend’s cousin’s neighbor and their baby who died/was brain damaged/missing an arm etc
• Please don't tell me how hard the last few months of pregnancy are or complain how horrible it was to be overdue around me.
• Don’t tell me about how lucky I am to not have to go thru the last month or two or three to four (in my case )of pregnancy.
• Don’t tell me how it’s ‘no big deal’ and everything will be fine because people have preemies all the time and they are just fine.
• Don't compare my preemie baby's death to the death of an older person as no big deal since "you didn't know her anyway".
• Call and ask if I want visitors. I wanted people to come see my baby, but I needed to know so I could be there. Most NICU's have a limited visitor policy, so I need to be able to do some planning.
• Please don't continually ask me when my baby will be coming home. I have no idea.
• Please tell me how cute my babies are and try not to go overboard on the "look how tiny!" stuff.
• Research is great. Educating yourself is awesome. Please do not act like you are an expert on the subject because you read something on the internet or know a friend of a friend. Each baby is unique and different, and as such my baby may not fit into what you have read. Please do not attempt to teach me about my baby.
• I appreciate that you had a close friend or family member with a baby in the NICU and you have seen a NICU baby before. I hate to sound harsh, but if it wasn't your baby you really cannot completely understand how I feel
• Don’t expect me to answer your call or return it within the first 4 weeks of my preemie's arrival.
• Don’t expect me for dinner today, Sunday, any upcoming holiday maybe for the next year. Now, because I will spend it with either my family at home or in the nicu. Later because your child may give my baby rsv and it could hospitalize her or kill her. Or maybe she doesn’t like the loud crowd. That being said, please don't stop inviting me to do things.
• Don't tell me how "lucky" I am to have a small baby...I didn't WANT a small baby...
• When you come into the NICU to visit my baby, focus only on my baby...don't peer at anyone else's baby. Privacy is nonexistent in the NICU, so we parents and visitors have to respect others' right to privacy and keep our eyes and ears on our own babies only.
• Ask me questions! There's a lot about preemie care and NICU life that people don't understand, not to mention questions about my baby's condition. Don't be afraid to ask me...most of the time I am willing to answer and explain because talking about it helps me understand it too, and if you understand more then you can be more supportive.
• Also if I am crying it isn't Post Partum Depression, it's because all my hopes and dreams for a healthy pregnancy, vaginal delivery and healthy baby have blown up, I've suffered a tremendous loss losing Jessica. I don't need medication, I need support!
• That said, mommies of Preemies/Nicu babies are at high risk for Post Partum Depression. Please keep an eye on me, without smothering me, and help me get needed support and treatment if PPD does hit me.
• If you made an appointment to visit, please be on time. I may have scheduled a pumping session around your visit, and your being late will mess this up
• Ignore the tubes and wires and tell me she is beautiful. Because she is.
• Please let me know if you are sick. If I get sick, I can't see my baby, so I don't want to risk it. If you are sick at all, please do not come and see my baby.
• Please don't tell me I'm being ridiculous when I'm fastidious about hand washing and keeping sick people away from my baby, RSV kills little babies like mine.
• Don't expect to hold a baby when you come over (especially soon after they come home). I may not want them out of my arms.
• Please don't preach to me. If you have not been here as the mother of a sick baby, you don't know anything about this.
• Please understand that while my baby is in the hospital that is where my focus is. Please don't expect me to come to social activities.
• I'm still a new mom. I'm hormonal. Please be kind to me, and give me lots of breaks for any bad behavior.
• I'm tired. Please don't say "be glad your baby is in the hospital" or anything like that. I am not sleeping well; I'm either up pumping or worried for my baby.
• Please don't ask questions I can’t answer, like will my baby ever be "normal".
• Please ask how I am, I may need a shoulder.
• Don't back away when I cry, it is very emotional to have a baby sick, and a baby who passed away.
• Please don't say clichéd phrases like, "if it was meant to be...", no baby is meant to be born early and sick, or die before they experience life.
• Please don't tell me a story about your friend's cousin who had a baby so much smaller than mine and tell me what a "good size" my daughter is and how she will be okay. Four pounds isn't a good size to me, it is still scary.
• Thank you for the congratulations but please don't pretend that everything is wonderful right now and I should be a glowing new mother.
• It is not easier to be a new parent to a preemie because I'm "resting and letting someone else take care of her." I want to be taking care of her. Waking up every three hours to pump is not restful, and it is much, much harder than waking up next to your sweet newborn baby to breastfeed.
• I'm not "over it" and I might not ever be. Try not to be awkward, change the subject, or roll your eyes if I still get emotional about my daughters births, death and NICU experience 2 years later.
• Unless you have also spent 12 plus weeks in the nicu or picu with your child. Do not tell me what I should do, what I should have done, how I should act or what I should tell you. If you're hurt because I didn’t give you details or blew you off, I have the rest of my life to listen to you and I may not have had that time with my child.
• Don’t keep pestering me for answers. Don’t say- But you said she was doing good. Guess what, that all can change in a second which is why they call it an emotional roller coaster.