What we wish

A friend of mine emailed this to me... I think it will explain a lot


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

General NICU/Medical Questions/Visiting

• 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 be hurt if I don't want you to visit. I may not have the energy. Please do not expect to hold the baby, as my time holding my baby is very limited and honestly, I can't spare that time with others.

• 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.

• Please take your cues from me and the other people in the NICU and don't freak out at every alarm.

• 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 compare my child and her development to other preemies. It may give them hope but there will be other things that can happen to that baby that didn’t happen to my baby.

• Don’t expect me for dinner today, Sunday, any upcoming holiday maybe for the next year. Now, because I will spend it w 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.

• Don’t ask about doll clothes.

• Don't then ask me why my baby isn't doing such-and-so yet, so-and-so's baby is doing it who was born within days...

• 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.

Illness/germs/After Nicu

• 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 an overprotective first time mom when I won't let you hold baby or bring baby to your party, we spent months in the hospital, and are not eager to return.

• 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.

• I wish that people would respect that just because she is home doesn't mean she is like every other baby.

• Don't even think about touching my babies without using antibacterial hand sanitizer... even if you think it contributes to allergies in our society.

• Don't expect to hold a baby when you come over (especially soon after they came home). I may not want them out of my arms.


Emotional Support

• 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 don't "should" on me. I'm doing my best. Please don't tell me how I "should" feel, react, behave. Please don't tell me I "should" live at the NICU, or judge me for staying at the hospital all the time.

• 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.

• Please don't give me parenting advice. I'm not really parenting my baby anyway; I'm doing what the hospital allows. I probably don't have the emotional energy to fight hospital policy.

• 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 don't casually ask "How's the baby doing?" Even a year later... there won't be a short answer unless I'm blowing you off and I hate to feel rude. If you really want to know then I'll usually be happy to share.

• PLEASE don't try to tell me that you understand, because unless your child/baby is sick, you truly, honestly DON'T.

• Please don't tell me how you know of this other preemie who's now 18 and 6 feet tall and completely healthy.

• Please don't tell me about another smaller, younger baby who is 'just fine'
because every baby is different, has had different circumstances in utero, and frankly, isn't my baby.

• 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.


Gifts/ Physical needs/Cards

• Don't ask me what I need. I don't know what I need. Give me some suggestions if you want to help.

• Please feed me, even if I say I am not hungry - just leave the food where I can get to it.

• On the food thing, most homes need milk, bread, toilet paper, and laundry soap on a regular basis. If you want to help but don't know what to do, purchase a regularly used household item and drop it by.

• Bringing over dinner, without asking, was a gesture so sweet it brought me to tears.

• Baby gifts, even when my child is in the hospital, are wonderful and give me joy and something to look forward to watching her grow into (and I'm sorry if the thank you notes are late).

• Do drop off a care package of tabloid magazines, anything you know I like to read or something I like to do to pass time. Pumping rooms are so lonely and need something to read. Besides, the nurses also like tabloids and it takes the edge off sometimes.

• Do give me the cutest preemie outfit you ever saw and say you saw it and thought of my baby.

• Offer to bring me lunch at the hospital while I'm there with my baby, don't expect conversation, but if I seem to need to talk about it, let me even if you've heard it already.