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An Open Letter to my Fellow NICU Mamas

9/19/2016

 
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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.  ​

Marion Phillips
9/19/2016 06:00:16 pm

My daughters twins were 23 weeks. Lizzie is 13 and the love of our life. Every word you said is so true. NICU the only club you got to join that you never wanted to be in.

Jean Karppinen
9/19/2016 06:32:50 pm

24 weeker mother here! This was truly beautiful, I sit here in tears reading this, and it all comes flooding back! I agree with everything you wrote. God bless our miracles!

Meghan krystyniak
9/19/2016 06:43:08 pm

This made me cry, brought back a flood of memories for my daughter who is soon to be 11. She was full term but had many many issues.

Stephanie link
9/19/2016 08:16:18 pm

The soap. Oh my goodness the smell of the soap. I broke down in tears when I read that because I thought I was the only one who has problems with hospital soap after our nicu stay! Thank you for this. It was beautiful.

Rebecca
9/19/2016 08:49:05 pm

I delivered my twins at 27weeks and 2 days after staying in the hospital a month before. My son did not survive but my daughter is starting to thrive. She will be 8 weeks old tomorrow. She is currently on a vapotherm nasal cannula after coming all the way from a jet ventilator. She's now able to hold her temp and be in an open crib. We have about a month left in the nicu and it couldn't come fast enough. I am over protective already and have no life left. I can relate so much to your story already. I was told that Caucasian males born premature have the most trouble and the least likely to survive. My baby boy was only 1.5 lbs when he passed and his sister was an entire pound heavier. Now she is weighing in at 4.5lbs and feisty as ever. We have come a long way and still have forever to go. Thank you for sharing your story, it is very touching.

Tina
9/20/2016 05:42:20 am

I am so sorry for your loss. You and your family are in my prayers.

Beka
9/20/2016 05:17:38 am

My sweet 1.5 lb baby is 12 now and I just realized this year why I panic every time she gets a cold. Deep down I still worry that this will be the time she is taken from me.
Your precious words reminded me, I am forever different after 2 NICU babies and many months in the hospital. But that change has made me strong, compassionate and able to lean heavy into God when the whole world shakes. These kids are a treasure. Each one. Every story.

Mary
9/24/2016 09:55:06 am

These posts touched my heart, as the Mom of a 28yo son who started out at 29 wks., one year after the birth and loss of my 20-wk daughter. Our family has enjoyed many Miracles and a fuller appreciation for the gifts of Life, Good Health, and Caring of those who join our family through their shared experiences. I am fortunate to now work with families of children with complex health concerns, and thrilled to see that so many families fill their toolboxes, over time, with grit, incredible knowledge from the School of Hard Knox, and caring toward other families on the same path. All of these gifts come from the Love of our Tiny Miracles. Thank you to caring professionals everywhere. There is grace in our lives.

Joanna
3/25/2017 07:35:48 pm

I felt you were taking the words out of my mouth. It was a journey like no other and my family and I are forever changed by it. Even though it will be almost 2 years since my third child arrived at 26 weeks, there are days that truly feel like just yesterday. Thank you for your article. Hearing that I'm not alone helps a lot.

Marybeth Maxwell
3/25/2017 08:14:50 pm

Oh wow...it's been 23 years for us and I feel the EXACT SAME THINGS. My boys were 28 weekers and even now, after they've graduated from college, the feelings are there. I don't think you ever outgrow them as Mom, though I am thankful every day that they have no memory of their stay. They both have the physical scars but we carry the emotional ones. However, I would carry this burden for as long as I need to, since I do still have my sweet sons. Others can't say that. And for me, that blessing makes it all worth everything I've --WE'VE-- been through.

Louise
5/23/2017 02:31:55 pm

You said it, perfectly. I think about it every day. I tell me story to strangers. I am a warrior but I am fragile. The smell of the soap brings me to my knees. The beeping. The scars. Everything. Thank you for reminding me, us, that we all have different roller coaster rides but Nicu parents are not alone. We are a team of warriors with heroic children. Our babies are such incredible fighters. Thank you for your words. Thank you ❤️

Stephanie
6/4/2017 01:58:01 am

I cried reading this I had my son at 34 weeks I had no choice I had to go save both our lives I feel guilty that because of my multiple complex severe health issues he had to be pulled into the world earlier than he should of been. It makes me feel like I failed him. He is almost 4 weeks old but shouldn't of been here until 16th June. I am grateful for the fighter he is and that he only spent a week in the NICU and he proves everyone wrong and surprised them with being able to detox from my medications in less than 4 days and that's with pretty much no symptoms. I am grateful for him everyday as I was told I could never have children and then fell pregnant with him after I almost died from my health issues again last year (the ethical time in 8yrs) but I also feel like I'm being stupid when I'm being over protective. I also feel that since I was only a NICU mummy for a week and that's whilst I was still in the hospital because I had to have another procedure 48hrs after my section that I don't deserve to feel this changed as you said strong but fragile. Thank you for your words Wyatt and I are grateful for your post so this mummy doesn't feel alone with her feelings. X


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