Neonatal Intensive Care Awareness Month

September is Neonatal Intensive Care Awareness Month (it is shared with the VERY IMPORTANT Childhood Cancer Awareness Month).  Two extremely important topics.  I can speak of NICU Awareness because I lived it.  My good friend, Stephanie, can and always has spoken about Childhood Cancer Awareness month because her son, Tanner, fought childhood cancer. 

Steph is someone I greatly admire because she fought this ugly disease WITH her son and even with Tanner being in remission now, she continues to fight it for all of the other children fighting this horrible battle.  She started a foundation and it is remarkable and I am so proud to call her my friend and someone I look up to as a mom AND advocate.  Here is her foundation: https://www.tannerstouch.org

Speaking on NICU Awareness Month, I have read so many amazing articles and blog posts this month that just really touch my heart.  They speak my truth.  Unless you have lived the NICU experience (or have a close family member that did) you don't really know how hard it can be as a parent OR as the baby fighting.  The NICU is not just for preemies, it is also for full term infants who could have one (or more) of many different issues (heart defects, breathing issues, genetic disorders...).  My personal experience with the NICU started with my niece, Jolie, who was born with a congenital heart defect called, Ebstein Malformation of the Tricuspid Valve (http://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/symptoms-causes/dxc-20199188) AND Wolff-Parkinson-White Syndrome (WPW) (http://www.mayoclinic.org/diseases-conditions/wolff-parkinson-white-syndrome/home/ovc-20265961).  My second experience was the premature birth of my niece, Magdalene.  She was born at 25 weeks and spent the first few months of her life in the GBMC NICU. 

 

My last experience, as known, was the birth of my twins, Jace and Eliana, at 27 weeks 3 days.  I experienced both ends in the NICU; a tragedy with the loss of my sweet Jace and a miracle with the fight for life and eventual turn around to health, of my sweet Eliana.

 

What can I say about our NICU experience.  It was so many things.  Traumatizing and heartbreaking.  I gave birth to my twins prematurely, I never expected that to happen.  My babies were supposed to be with ME.  But instead, they were in an Isolette that was supposed to mimic my womb.  They were hooked up to machines, iv's, beeps and noises all around them.  They were having their diapers changed and temperature taken by nurses and doctors.  They were fighting for their lives.  And all of this because my body didn't do what it was supposed to do.  So, along with the trauma and heartbreak, I experienced guilt, anger and depression/anxiety.  The guilt eats you alive.  My body not doing it's job caused my babies to go through pain.  AND it caused my son to get a devastating disease that in turn, took his life.

 

There are also the good NICU experiences.  The milestones being reached; the LOVE your babies receive from the incredible nurses and doctors, who truly are their parents, when we can't be there; the LOVE we received as parents from those same incredible nurses and doctors as they took care of the most important people in our lives and took care of us.  It's truly a roller coaster ride, and they tell you that from the beginning.  Your babies and you are going to have good minutes and bad minutes, good hours and bad hours, good days and bad days. 

 

My advice to parents new to the NICU: let yourself feel all of those feelings.  Cry. Scream. Fight. Laugh. Be Weak. Be Strong. Stay. Walk Away. Sleep when you can. Take Care Of Yourself. Believe. Let Go Of The Guilt. Love Yourself.  Love Those Babies. NEVER GIVE UP. 

 

It's not something you can be prepared for and it WILL change you.  Take that change and try to make a difference in your own life and the lives of others.  It's important that those that don't know these experiences, walk outside of their comfort zones to be there, in any way possible, for those that are going through it or have been through it.  And it's just as important for those that have gone through the NICU experience to be there for each other. 

 

To those who have experienced the NICU, are experiencing it now, or will experience it one day, I am here.  Please reach out: to cry, to sit in silence, to scream, to ask advice.

 

I hope my writing is helping at least one other person.