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Parents of Premature Babies Inc. FAQ |
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advice from Preemie-l http://www.preemie-l.org |
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Here are some voices from our parents .... "The isolation I felt was the worst. The only thing I asked was that someone - anyone come see my little girl in the hospital! She wasn’t deformed, she was just tiny." "Once when [our baby] was having deep troubles my brother just said: "I have absolutely no idea what to say to you." I found his comment honest, complimentary and supportive." "...the doctors had told us that [one of our babies] would die, and [the local twins association] sent us a card with a picture of two beautiful healthy babies that said, "Congratulations on the birth of your twins". I was so hurt." "Just hearing "I’m sorry to hear about the baby" wouldn’t have seemed right either. I think I wanted to hear "congratulations" but I wanted people to recognize that my son’s birth wasn’t completely normal either." "I remember thinking that it didn’t matter HOW he ended up, damn it, why weren’t people celebrating that he was HERE??? And being really mad at the people who ignored his birth." "I had been on bedrest for 6 months, but I wasn’t prepared. Everyone said "congratulations" to me. No one said "I’m sorry your baby is in the NICU." I really wanted some acknowledgement that things were not normal." "What I needed more than anything was someone to drive me to the hospital so that I could see my baby each day. I was much too stressed to be driving all the time and I ended up having an accident. It made things so much worse than they already were." "Everyone and their dog wanted to visit but that meant me getting out of bed post c-section to take them to the NICU every hour on the hour, and the phone rang all of the time, so my sister spent a day in my hospital room beside the phone, and answered all of my calls and read today’s update to them all, and met all visitors at the door and asked them to let me sleep and call me the next day for a visit." Some Resources Two great resources are Kerry Bone’s Understanding Preemie Parents (
http://members.aol.com/KBone91/understanding.html ) Rebecca & Steven Pittelko’s Imagine Site ( http://www.waisman.wisc.edu/~pittelko/imagine/imagine.htm ) will give you some idea of what the new preemie parents may be going through. The Parents of Premature Babies Inc. Forum ( http://groups.yahoo.com/group/preemie-list ) is a great place to ask questions or to listen in on preemie parents talking about their concerns. The Early Edition newsletter ( http://www.vicnet.net.au/~earlyed ) has many good articles on how preemie parents deal with the experience and how friends and family can help. Remember: Draft April 1999 - comments to: garyh@vicnet.net.au |
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