Kristie McNealy, MD

For today’s edition of Blogging for Prematurity Awareness Month, I’d like to share a few books that I think could be useful not only for preemie parents, but extended family, caregivers, and other people who work with preemies on a regular basis.

One of the first things I learned after my preemie was born, was how isolating the NICU experience can be.  Even after discharge, family and friends don’t always understand what you’re going through, or what special care your baby might require.  In fact, you’ll probably feel lost a lot when it comes to doing what’s best for your preemie, and sometimes doctors aren’t much help either.  Unfortunately, it can be pretty hard to find good quality information about common problems experienced by preemies either online or in print. If you’ve got a preemie in your life, and you’re looking for resources to help you cope or advocate for your preemie, check out this list of must read books for preemie parents.

General Preemie Parenting Books

• The Preemie Parents’ Companion – This book by Susan Madden provides a comprehensive discussion of preemie parenting in the first days, through the first years. It is well written, fairly comprehensive and easy to understand. It’s a recommended read if you’re looking for a general resource on preemie parenting basics.
• The Premature Baby Book – While some people say that The Premature Baby Book by Helen Harrison is depressing and outdated, this book provides realistic insight into many of the untold complications of premature birth. Helen is the mother of an adult preemie with sever lifelong medical problems, and she has been inspired by her experiences to help bring some of the more difficult realities of prematurity to light.  It may not be the latest book on preemie parenting, but it does give more information than most books on many of the lifelong impacts extreme prematurity can have. While no two babies are alike, this book could be for you if you’d really like to know more about possible problems and complications your preemie could be facing in the long run.

Other Problems and Complications

• Colic Solved: The Essential Guide to Infant Reflux and the Care of Your Crying, Difficult-to-Soothe Baby – Colic Solved by Dr. Bryan Vartabedian is an excellent resource for parents of preemies who suffer with reflux, or who have been labeled as “colicky” by their pediatricians. This book explains the myths and facts surrounding reflux, colic and other things that can make for a fussy, difficult baby. It’s an easy read, but still manages to be packed with excellent information and great examples.  As a mom of three fussy babies, I found the explanations in this book invaluable in working towards making my babies more comfortable.
• The Out-of-Sync Child – Sensory problems are fairly common among preemies, and these issues can have a major impact on quality of life for both preemies and their families.  The Out of Sync Child, and it’s companion, The Out-of-Sync Child Has Fun are both excellent resources for parents of preemies who struggle with sensory issues. Both books, which are authored by Carol Stock Kranowitz, provide excellent resources, explanations and activities for children who suffer with sensory processing disorders, with alternatives for both hypo and hypersensitive children with a variety of difficulties.
• Hydrocephalus: A Guide for Patients, Families and Friends – This resource by Chuck Toporek and Kellie Robinson provides valuable information to families coping with a diagnosis of hydrocephalus. It covers a variety of topics, from choosing a neurosurgeon, all the way to longterm management and coping issues.
• Cerebral Palsy: A Complete Guide for Caregiving – This book on cerebral palsy is written by a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Institute. It covers the complex and uncertain aspects of a cerebral palsy diagnosis, and provides a comprehensive guide for parents, family, caregivers and even young adults with cerebral palsy.

Preemie Baby Books / Journals

• My Early Arrival Baby Journal – By far my favorite preemie baby book, My Early Arrival was written by two NICU nurses. It has adorable color illustrations, and contains places to record both NICU milestones, doctor visits and monthly challenges and accomplishments throughout the first year. I have a copy for my own preemie, and I’d gladly purchase it again!
• Early Passage: A Journal for Parents of Preemies – While I haven’t personally used this preemie journal by Priscilla Hernandez, it has received excellent reviews from other parents. This journal provides parents with a place to organize and let out all of the complicated and overwhelming feelings brought up by having a preemie baby. It highlights common experiences and provides information, along with plenty of journaling space.

I hope you find these books helpful to your situation. If you have other books you think preemie parents should read, feel free to leave your recommendation in the comments!

Similar Posts:

• Book Offers Relief for Parents of Fussy Preemies
• Coloring Book Helps Big Brothers and Sisters of NICU Babies – What’s New Wednesday
• Physical and Mental Disability in Preemies at Age 5
• Choosing a Pediatrician for Your Preemie – Blogging for Prematurity Awareness