Last night I finished reading The Preemie Primer, by Jennifer Gunter, MD. Truthfully, it’s the first book about preemie babies that I’ve read cover to cover. I was pleasantly surprised at how helpful and informative many sections of the book were, but I was also disappointed at how unpersonal it was. Jennifer does share her story, and her personal experiences are scattered throughout the book, but the main content of the book is written much like a college textbook.
Admittedly, I started out reading The Preemie Primer hoping for a personal parent-to-parent type feel with advice, confessions, humor, drama, and heart-wrenching experiences. After all, it’s “A Complete Guide for Parents of Premature Babies”, and what guidance is more needed than personal tips on how to survive the whole preemie baby experience? Instead, I found a formal and sometimes hard to read resource book filled with difficult terminology. Not what I was looking for, but certainly useful in many ways – especially if what you’re looking for is facts and information.
So, I’ll give you an overview of what the book contains and insert my own thoughts about each section. The Preemie Primer is nicely divided into six parts that outline causes and information about prematurity, having your preemie in the hospital, parental health and well-being, navigating insurance and government programs, raising your preemie at home, and other miscellaneous information.
Part 1: The Beginning
Here you’ll read general information and statistics about prematurity, detailed information about many of the causes of prematurity, risks and information about being pregnant with multiples, and what your delivery might be like when a premature delivery is necessary or spontaneous.
Very little of this information was new to me because I have already been there and done that (you learn so much from experience!), and because I did a lot of research after delivering my second preemie that would empower me in my third pregnancy. My thoughts were that most parents of preemies would have learned as much as they could about their high-risk condition as soon as the problem arose, or would have been educated by their doctors and nurses in the midst of their complications. A majority of the information in this section that would be relevant to any one parent would be review, not new and enlightening information.
Part 2: Your Premature Baby and the Hospital
Here you learn about what happens to your baby when they come early: where they go, what tests are done, who cares for them, and what health complications are possible or likely to arise. This section contains a lot of detail about medical procedures and tests done on preemie babies. You’ll read about lung problems, blood work, the nervous system, infections, nutrition and feeding, stomach and bowel issues, and vision and hearing tests.
This is the section of the book that was difficult for me to get through because of the talk about blood and needles and painful or risky procedures. I couldn’t even get through much of what my preemie had experienced, because I’m a true wimp when it comes to medical details and I get nervous and light-headed when I think too much about it. I had little desire to read about the frightening things my baby never faced, but, despite my jitters, it was good to gain a more clear understanding of what DID happen to my baby. I learned a lot more about my baby’s medical issues from this book than I did from the neonatologist’s surface-level explanations. (I must add that I’m very grateful I did not understand everything so fully while in the NICU because it would have scared me a lot more than it did… which was bad enough.)
I think this section is a bit frightening for parents who are still in the NICU because Jennifer clearly and unapologetically states the likelihood of serious complications, disabilities, and even death due to prematurity issues, illness, or even medical mistakes – like someone with no empathy for your situation would spout off to you. Many parents cling to hope and success stories to get them through rough times, and negative statistics are too frightening for their vulnerable state. (Then again, maybe I think this because I never wanted to hear the worst-case scenario. I was absolutely set on a positive outcome because I didn’t think I could make it through each day unless I stayed 100% positive and hopeful. Maybe many of you were able to face the risks head-on without faltering. If so, I truly admire your strength!)
I think this section is best suited for those seeking direct answers or information about a specific condition, or for those who truly want to understand (and are emotionally strong enough) all of the risks and possibilities. Personally, I wasn’t strong enough for all of this information until long after the immediate danger was passed… like now… four years later.
Part 3: The Mind-Body Connection
This section briefly suggests to parents ways to cope with grief, depression, and post-traumatic stress disorder, and ways to improve your emotional health and physical and mental awareness.
Some of the suggestions here are intuitive, but I think I might have greatly benefited from taking better care of my mental and emotional health.
Part 4: Making the System Work for You
This is actually the portion of the book that I learned the most from. Jennifer gives invaluable information about health insurance, prescription drugs, government programs, and how to be an advocate for your baby. She tells you who you need to contact for information, how to organize yourself and documents so that you always have proof of transactions and promises, and helps you to understand the system well enough to get the best financial help that you can get and avoid problems down the road.
I was never 100% clear on who was paying what and why and who was taking advantage of me and who was trying to help me when it came to finances. I tried my best to be informed, but it can get very confusing when you have multiple programs offering help, double insurance to deal with, and money coming in and going out in all directions. I was especially wary because with preemies you’re talking about thousands and hundreds of thousands of dollars! If I ever have to deal with it again I now feel better prepared to face the challenges.
Part 5: Life at Home
Jennifer shares NICU qualifications for taking your baby home, tests and requirements that must be met, and how to find a Primary Care Provider for your baby. She talks about doctor appointments, infections, taking baby home on oxygen or g-tubes, nutrition and feeding, and many other issues that are not specific to just preemie babies like reflux, constipation, allergies, etc. She also discusses growth and development concerns that may arise and where to get the help and support that you need.
I enjoyed this section of the book because I could relate with so much of it. It made me grateful that my preemie did not struggle with so many of the lasting prematurity-related issues that were likely, and it confirmed to me that I did the best that I could caring for my tiny preemie at home, especially during the most difficult first year. I think this section would be most helpful to parents who have just brought their baby home and are figuring out how to care for their preemie on their own.
Part 6: Other Things You Should Know
This was a very short wrapping up of information that is good to know that wasn’t shared earlier, such as; choosing a hospital for your baby (if there are options), dealing with conflict (with doctors or suggested procedures), and missing out on a full-term pregnancy.
Personally, I think that if a university offered a course titled Preemie Babies 101, The Preemie Primer would be the perfect textbook. It starts at ground zero defining what a preemie baby is and works its way up through most of the challenges the preemies and their parents face for years to come.
It’s hard to know how to recommend this book to parents of preemies, or at what stage of the prematurity experience it would be the most useful. “Part 1″ would be best for parents who are preparing to have a preemie, but how many parents actually have enough warning to prepare themselves? “Part 2″ is a perfect resource section for parents to pick and choose what they need to know based on their own preemie’s health concerns. I imagine “Part 3″ through “Part 6″ will have information relevant to everyone at some level, and its usefulness will likely differ depending on your preemie’s gestational age at birth, pregnancy complications that caused prematurity, length of time in the NICU, your financial situation, and of course whether or not your preemie has lasting disabilities or health issues.
If you had one preemie and are considering getting pregnant again, knowing that the risk of having another preemie is great, The Preemie Primer could be invaluable in filling the gaps of information you experienced the first time.
This book is not for parents looking only for emotional healing and support and an array of success stories to lift them up. It’s a resource book with enough personal experience shared to help an outsider understand just a little bit better, and for a preemie parent to feel understood to a degree (the fact that Jennifer is an MD gives her a few advantages, I think).
Overall, I enjoyed reading The Preemie Primer and learned much from it. I can see it being very useful to all parents of preemie babies at various points in their experience, and I greatly appreciate Jennifer’s story and her desire to educate and help others through all of the challenges that come with having and raising a premature baby.
I give it 4 out of 5 stars!