Wednesday, March 17, 2010

Preemie Parent Power

If you have experienced a premature birth and have had a child in NICU please read on. I recently contacted Deb Discenza, co-author of "The Preemie Parent's Survival Guide to the NICU, How to Maintain Your Sanity & Create a New Normal." I could have used this book 2.5 years ago when my twins were born at 32 weeks gestation. I am forever grateful to the March of Dimes and the staff at my hospital for supporting my husband and me during the time my little babies were in NICU. It was by far the scariest time of my life. Deb and Nicole wrote this book to help other parents. If you don't have a medical background (and maybe even if you do) it's difficult to listen to and understand what the NICU doctors and nurses are telling you. You are overwhelmed with emotion and are just plain scared. "The Preemie Parent's Survival Guide to the NICU" will help you understand and navigate the NICU and make it easier for you to do what's best for your child. Here is a beautiful excerpt from "The Preemie Parent's Survival Guide to the NICU" by Nicole Conn and Deb Discenza that I found very touching:
  • As you leave the NICU with your baby, realize that you are a changed person.
  • You live life one day at a time because you understand that life can change in an instant.
  • You understand that life is truly fragile because you have watched your baby struggle day in and day out.
  • You are resilient because you know that to be your baby’s parent you have to bounce back from the trauma and focus on the moment and the joys within.
  • You are strong in mind because you have handled a stressful situation and knew what to ask and how to help your baby.
  • You are strong in body because you know that you have to take care of yourself to be the best parent you can be.
  • You know the true meaning of joy because you have held your baby in your arms after wondering if that would ever be possible.
  • You are an advocate for your baby and have talked with doctors and specialists with knowledge about your Preemie that no other parent can truly conceptualize.
  • You are an advocate for yourself, making sure that you are clear with others in terms of what you want that is best for you and your family.
  • You have the power to vocalize your requirements in terms of how your baby is handled in the real world.
  • You stare down adversaries who refuse to wash hands at visits and believe that to be okay.
  • You are capable of organizing more than you ever thought possible—daily routines, medical and therapeutic appointments, insurance matters—all while the rest of life continues at its feisty pace.
  • You no longer let the small things bother you. You know what is and what is not worth worrying over.
  • You understand that what you have been through has changed your life forever and that not everyone else will understand that.
  • You have a new passion and a new reverence for all that life has to offer.
  • You leap over all problems in an effortless bound—you truly are a supermom!
  • You believe in gratitude and no longer take ANYTHING for granted.
  • You believe in miracles. Your baby is one. And you helped make that happen.
To purchase this book or find out more Visit Preemie World!


Selmada said...

I had twin preemies at two different NICUs (one moved during an emergency). I could have used anything and everything to help. I am etternally thankful for the wonderful nurses who kept me sane.

Margo Dill said...

I didn't know this book existed. Thanks. And so true about the March of Dimes. They had so many cool programs when my baby was in the NICU at Children's Hospital in St. Louis.

Susan Bearman said...

This seems like an excellent resource for preemie parents. My twins were born at 24 weeks more than 19 years ago. Back then there were very few preemie resources at all, and virtually nothing for babies as small and premature as ours were. I'm happy to report that they are now happy and healthy, though we spent nearly five months on the NICU and many years of delays and therapy. Good luck to everyone still on this journey.

Meredith said...

Wow I wish I would of known this book existed!! I jus had my son on Feb 9. I had preeclampsia which caused him to have intreuterine growth restriction so he stopped growing inside me at 28wks, but doc didn't discover that until right before I had emergency c-section at 33wks. so my lil guy was 2lbs 5.9oz . I was at hospital all day long everyday, I did hate talking with doctors because I didn't know their lingo and when I'd go to Google to look it up, I'd find all stories w/tragic endings. I cud never really find a happy preemie story so in my mind I felt like he would never get better. I finally stopped going to Google and jus made doc explain things until I got them. Like my son had a brain bleed (4get medical term) and that sounds really scary right? Well his was low grade and most preemie have it and it ended up self resolving but in Google all stories were worst case scenario. I thought hospital would never end (39days spent there) but know he's 4mnths old and it all feels like a dream. Happy its all over and happy I have a lil fighter on my hands!I still want to get this book tho :)

Marianne said...

My first two daughters were preemies, born at 31w and 33w. I read a ton of preemie books but that one sounds really amazing.

Mr and Mrs Hasler said...

Thanks for the post - looks like a very interesting book. I'm a Dad to a 30 week born boy who is now 34 weeks today (4 weeks) and have been thinking about looking for a book like this. I blog to keep my self sane!

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