An Open Letter to my Fellow NICU Mamas

When you are a parent of a NICU child, your hero or heroes sit before you every day. Much like a fireman saving you from a blazing fire, my children saved my life. They saved their own lives and they are only 4 years old.  They fought battles and won.  

We are a family of warriors.

I have become a very strong woman, an extremely proud and devoted mother, and a person that is grateful for each passing day.  I try my best to thank God for my children because I saw miracles happen right before my eyes.  I go about my day as all other people do and I have my simple challenges and my crazy moments.  I deal, I move on, and I live my life.  Not everyone knows I am a NICU Mom, but I know that it makes a difference in the woman I am each day.

Every day I think of our journey at least once; every night while watching my children sleep, I thank God that they are here with me.

We are a family of warriors.  

I think we all live a fairly normal life, but our experience in the NICU plays a huge role in my everyday. All five of us have both external and internal battle scars.  My husband and I have memories that could most likely be compared to those suffering from post traumatic stress disorder.  Sometimes, when a friend mentions anything related to a hospital experience, without invitation I immediately start telling my story and give details about my children’s stay at the NICU. The memories come flooding back and my mouth starts speaking even before I know what I am saying.  I think most of my friends have heard my stories, but they just allow me to talk because it is polite and because they love me.

We are a family of warriors, but I am forever fragile from this experience.

We are a family of miracles. Even though I am tougher than I was before the NICU stay, I am still as fragile as the second the doctor told me 30%.  He told me that 30% of the children with my son’s condition do not survive.  I am still as fragile as the second that the social worker asked if we would like to see a member of the clergy.  I am fragile as the time I was holding my breath when my son’s ventilator was removed for the first time.  I am as fragile as the time that they took my son to the operating room in an isolette when he weighed less than 5 lbs.  Even though I am tough, even though we are warriors, I am forever fragile because I know that life is fragile and I know that every second with my children should be cherished because they were gifts given only to us.

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All that being said, I am a regular mom.  

I live a regular life and I think regular thoughts for most of my days.  I have the occasionally slip ups every now and then, but it’s not easy being a mother and it is not easy having triplets.  People often ask me how I do it, and I know how I do it.  I do it because I would never want to do it any other way.  I need these three children like I need air and I know that I am not perfect but they have made me who I am and have showed me that they are willing to fight for me. I will fight for them every day.  

Like any mother, I have to discipline them and teach them how to be respectful and loving children, but how do you teach  the fireman who saved your life how to fight a fire? Every time I become frustrated with my children, the NICU flashes like lightening over and over again in my brain. “Be thankful for those children, they fought so hard to be with you.”

I can get over much of what the NICU imprinted on my soul.  I can forget the horrible moments easily and move on because I have my children with me.  There are a few things that my body and soul will truly not ever let me forget.  Whenever I am in a doctor’s office or a bathroom or in the ER with my daughter when she gets croup, I have a hard time getting up the courage to wash my hands.  As we all know, hand washing in a hospital is necessary and 100% disgusting if not done.  However, the smell of the hospital soap brings back every fear and and every memory I ever had at the NICU.  The smell makes me remember how terrified I was of every germ and how even the smallest virus or cold could make a huge difference in the lives of my children.  I remember using hand sanitizer at least 100 times a day, and I washed my hands before entering the NICU until my skin was raw.  I kept my cell phone in a baggie tucked in a sanitized bag.  I clean every inch of my home when the babies came home and every person that came near them had ALL vaccines.  I put signs on their carriers that said “DO NOT TOUCH ME”.  I was scared to death every second of every day.

I am a warrior, I am fragile, and I am a NICU Mom through and through.  

I have the guilt of not carrying my children to term. I have the memories of each roller coaster moment from all three of my children’s 94 day hospital stay.  I have found strength in the eyes of my babies, and I have learned to be compassionate for all.  The NICU is like the teacher of a class you never wanted to take.  It gives you lessons that you will remember forever.  Many of my memories from the hospital stays are horrible but I have a few that are great.  I am forever thankful for the nurses and doctors that raised my children for those three months when I could not.  I will never forget the names or the faces of the nurses and doctors that saved my son’s life especially.  I know who you are, I know where we were standing when you told me the news, and I remember the love you showed me. I have met countless heroes along the way and I think I can honestly say that I am grateful for this crazy journey.  When leaving the hospital with my third child a neonatologist said to me “Ya know, one thing I learned about the NICU is that every person’s journey affects them the same way.  Whether you are here for one day or nine months, all parents are affected.  The fear that you have is the same.”  

Here’s to all my fellow NICU Mamas.  

We are all warriors.

We are all fragile and each of our journeys is our own.  

Do not feel weak when the smell of the soap brings you to you knees.  

​It is just God’s gentle reminder that we should continue to be grateful for the wonderful gifts in our lives.

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About the Author:
​Heather S. is the Mom of three miracle triplet’s Savannah, Max and Lillyana.  They were born at 28 weeks 1 day and spent over three months in the NICU.  Her son was transferred to AI Dupont Hospital For Children’s NICU at just 13 days of age where he received several life saving surgeries.  Her triplet’s just turned 4 years old in August.

Heather has been generously giving back by volunteering with Precious Kisses, a division of Project Sweet Peas based in the Philadelphia area.  She and her family, friends, colleagues and school students have be helping support families with babies in the NICU at Nemours Alfred I. duPont Hospital for Children.  She strongly believes that helping others promotes healing.  ​

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