As a NICU nurse for more than 20 years, I thought I knew everything there is to know about the life of a preemie, of a micropreemie and what life would be like after the big graduaation daay from my NICU. Then I became the mother of a child born 16 weeks early and weighing 1lb 6oz...
I have been enjoying reading this last week Dr. Jennifer Gunter's new book The Preemie Primer.When Dr. Gunter contacted me last year about her project writing a complete guide for parents of preemies that not only covered the basics in the NICU through the toddler years, but beyond, I was very excited. There are a lot of great comprehensive guides to preemies for parents out there but most I find just don't address what happens after you go home and after your preemie reaches that magical age of two when we no longer have to consider their adjusted age. To someone who doesn't know better it would seem that everything is okay then and we all live happily ever after. But to many parents of NICU grads who spent any length of time in the NICU there is no magical date where everything is normal and all caught up...at least there isn't a well-defined mark in a preemie's timeline where we can point and say, "Here! Here is where your ex-24 weeker will be all caught up in growth and development and you can stop worrying."
It ain't there, people.
OB-Gyn Dr. Gunter herself has lived the NICU experience not as the medical professional but as the parent of surviving triplets, Oliver and Victor. Her son, Aidan, died soon after his birth. Her book is exactly what it is a titled, a primer for parents of preemies explaining the basics of a baby's NICU stay; the care they will receive, the potential complications that they are almost certain to have; the system that is insurance, prescription drugs, durable medical equipment and government assistance programs and how to navigate them; emotional and physical self-care; the real world after discharge and the other things that you should know but no one will tell you. Dr. Gunter reaffirms what I have come to realize that those of us in the biz really, truly don't know what happens after we bundle up our NICU grads and send them home to happily ever after unless we have personally lived it. I felt prepared the day Daniel was discharged home with his oxygen and other medical supplies but I truly wish I had a book like this then. I might have been better prepared for the re-hospitalizations, the endless doctor appointments, the therapies, the surgeries, the feeding tube, the unknown.
One of the best things about this book is Dr. Gunter sharing parts of her own story in each chapter. My favorite was the conversation she had with one doctor about her son's chronic lung disease where the doctor told her that he would never climb Mt. Everest and how she reacted. I remember so many conversations like that..."he'll never hear your voice"..."he'll never be a fighter pilot"...he'll never sing opera". Just like Dr. Gunter, I couldn't help but mourn the "he'll nevers" even if I couldn't imagine in a million years my son doing those things. Some of the "he'll nevers" were and are indeed realistic and some predictions proved to be wrong still it is so unbelievably painful to hear your son shall be limited before he even manages to leave the NICU...even if you already know and understand these things as a medical professional like myself or like Dr. Gunter.
All in all, I wholeheartedly recommend and endorse this book. It should be available in the reading libraries of every NICU and would make a great gift for NICU parents as a bedside companion in the NICU while they keep watch over their baby.
One of the very best parts of her book is the epilogue, Dr. Gunter's "poster" of NICU graduates including someone we know. My only quibble is Daniel actually weighed 630 grams (1lb 6oz) at birth but everything else is Daniel's story from his perspective based on my interviews with Dr. Gunter. After I read Daniel's story to him, he offered his autograph which I had to accept of course. But he is not the only amazing preemie grad featured in the epilogue. Each story is real, sometimes raw, honest and always heart-warming. Life with a preemie is hard in the NICU, after discharge and after the magical age of two when everything is all-better. But it is also happy, joyful and victorious as we discover that there is life beyond the "he'll nevers" where we get to witness and celebrate all the amazing wonderful things that our preemies can do...
...like their earning their green-striped belt in Tae Kwon Do as Daniel did this last weekend.
originally written and posted at [...]