General resource pages -- a good place to start

• Preemie-L mailing list -- an invaluable resource for parents of preemies, and a wonderful community.
• The Early Edition -- "a collection of wisdom and discussions from the on line support group...PREEMIE-L"
• A primer on preemies -- general information from www.kidshealth.org
• Your baby's development -- remember that preemie development has to be adjusted depending on how premature they were.
• A preemie prayer
• Chances of survival based on gestational age at birth (Neil was born at 24 weeks, 6 days)
• Chances of disability
• Jeff's Life -- includes essays on his preemie son's hospital stay.  Lots of what they've experienced, we have too.

• A list of links from After the NICU -- advice for when you bring your baby home
• Mary Searcy's Resources for Parents of Preemies
• Premature Baby Internet Resources -- from Comeunity

• Ways to help preemie parents (We were so grateful when people have cooked for us, as otherwise we would usually eat at the cafeteria, a restaurant, or not at all... It also showed us that people cared but didn't put a big burden on us to reciprocate in any way, which helped.)
• Let me teach you about my premature baby and tell you how my life has changed...
• A Parent's Wish -- what parents wish others would understand about their preemie children
• Understanding Preemie Parents
• Facing a Life Sentence in the NICU.  A speech given by  Michael T. Hynan, Ph.D.
• Helping Parents Cope with a High-Risk Birth:  Terror, Grief, Impotence, and Anger.  Another Hynan speech.
• T-Bone's Guide for Preemie Parents
• Getting along with the grandparents of your preemie

• The Preemie Store -- preemie clothes, books, and other products.
• Prematurely Yours (baby book for preemies; also birth announcements)
• For A Special Baby (preemie clothes)
• Crochet Patterns for preemie clothes

• For Parents of Preemies: Answers to commonly-asked questions -- from the University of Wisconsin and The Center For Perinatal Care at Meriter Hospital, Madison, Wisconsin. Many of the following pages are at this site.
• What to look for in a NICU (Neonatal Intensive Care Unit)
• Bilirubin and jaundice -- Neil was under phototherapy lights for the first few weeks, dealing with persistently high bilirubin. He was on actigall for the first month after coming home, to help his body process the last remnants of the bilirubin, but it's finally not an issue any longer.
• Apnea of prematurity -- This was a big problem for Neil; somehow his body just didn't quite remember to breathe. He'd pretty much stopped being apnic by the time he came home, though he was still having the occasional bradycardia. Here's some more information about apnea; Neil does still have the occasional apnea associated with reflux.
• Patent Ductus Arteriosus -- Neil's was surgically ligated after indomethacin didn't close the PDA entirely.  After the ligation, he had pneumothorax -- excess air in the chest cavity.
• Retinopathy of Prematurity -- Preemies' eyes are checked weekly once they're 6 weeks old until their eyes are mature. At their worst, Neil's eyes were stage 1-2. They matured, though, and we only had to visit his opthamologist twice after coming home from the hospital. Preemies are at risk for other vision problems as well; Neil has a lazy eye, which we're trying to correct.
• Necrotizing Entercolitis -- This can be really serious, and scares preemie parents for quite some time. We saw one baby die from complications related to NEC; it's an evil evil thing.
• Infections (sepsis) -- Infections seem to strike without warning; they can cause a massive setback in your preemie's progress, and can even result in death.
• Cerebral Palsy 101 -- Cerebral Palsy is often an issue for babies with intraventicular hemmorhages, but babies without IVHs can get it too.
• Recommended Standards for Newborn ICU Design -- the environment in which preemies spend the first part of their lives is very important; here's some suggested standards for NICU design.

• Preemie Massage
• Parents' comments on preemie massage from After the NICU
• How to touch a preemie

• Tommy's Cyber-Nursery
• Inkan's Preemie Home Page -- with links to many many preemie baby pages, by gestational age.
• Small Miracles -- Conor Michael Williams, a 24-weeker like Neil.

Know other preemie-related sites we might want to include?  Let us know!

Back to Neil's page.