Nevy’s Story
Submitted by Meghan Jedrzejczyk on Wed, December 17th 2008.
Category: Loss and Healing
We can hardly believe our daughter was born one year ago today. The 10th of every month has been difficult and filled with so many emotions, but none quite like today.
I can remember every moment like it was yesterday.
The first moment I saw her, she took my breath away. I remember that her small body was swaddled so tightly in a blanket that I worried she wasn’t comfortable. I remember touching her perfect skin, first her foot and then her head, and for the next two months, this is what our daughter would know as an embrace.
The first days of Nevy’s life were so uncertain. All we asked of God was to do what was right for her, not what was right for us. We celebrated weekly birthdays and for her first one, Nevy’s Grandma Peggy brought her a stuffed cupcake with candles. Every Friday I would put those on top of her little incubator until she graduated to a big girl bed.
I held her for the first time on 0n Aprill 11, 2006, two months and one day after her birth. I was so amazed at the way she fit perfectly into my arms even with all the equipment. The nurses and doctors that were with us every day celebrated as if they were holding their own daughter for the first time. They understood what a huge moment this was for both of us.
We were able to go home to Portland on May 23rd and on May 26th, they removed her from the ventilator that she had depended on for just over 100 days. We were so elated!
We sat with her and held her. We listened to her voice and it was music to our ears. Tommy had to peel me out of the hospital that day. I was so scared that if we left, when we came back, the tube would be in again. I called that night every 25-30 minutes. Her nurse was so good to us and assured us all was well.
In her short life, Nevy went through four surgeries, more x-rays then anyone I know and countless pokes and prods, but she never lost her smile.
Even at the end she was smiling.
Looking in from the outside, she had a complicated life, but for us it was her life. She came here to do something (as we all do) and once it was accomplished, it was her time to leave.
I have never experienced highs and lows like the ones during her 5 months with us and in the 7 months since she has passed. But what I can tell you now for certain: if I was asked to do it all again, knowing the end result would be the same. I would do it in a heartbeat. She has impacted our lives in such a profound way and having met her and experienced her, I am a better woman and I will be a better mother.
The test results came back on a Saturday. It was supposed to be a routine look at her heart and for the first time, I was not worried about the results. I didn’t even give it a second thought. We had started to put the finishing touches on her room and were so hopeful she was going to come home.
But then we got the phone call.
It is strange to have a moment so important that you can remember it clearly. We slept in that day. We didn’t have the cell phone ringer on high the way we had almost every night since her birth. Nancy was her nurse that morning. The instant I woke up, I called to check in and she had great news: Nevy had taken a whole bottle! I was so thrilled! But there was more. Had I checked my messages? No, I hadn’t. You guys should head in. I knew then. We had never had a “come on in” conversation. Not on a Saturday. I froze. For the first time in Nevaeh’s life, I didn’t know what to do. I laid in bed paralyzed with fear.
After another phone call to the NICU and a wonderful conversation with Nancy, I knew we had to go. So we went. And we listened. And we knew. Her heart had suffered a great deal from being intubated and there was nothing we could do.
We needed to enjoy the time left with her.
Tommy and I knew instantly that we would not put her back on a vent, that we would not keep her alive for our own reasons. We knew that God had a plan from the beginning and it was time for Nevy to go home. We had no idea that it would happen so quickly. I guess I thought there would be time. I could not have prepared myself to say good-bye to her in a week’s time. But I think that is why it works that way.
Enjoy what you have because you just never know when it will be gone.
Nevaeh Simone Jedrzejczyk passed away on July 9th, 2006, 1 day shy of her 5 month birthday. We held her all night long, we told her things we wanted her to know about us. We invited our friends and family to be there. We cried and we laughed. Thanks to one of the most amazing doctors I have ever met, we were able to take our daughter outside to the garden. And we just sat there. There was nothing left to do or say. We were on God’s clock, just as we had been all along. Tommy and I took Nevy into a private room for the last five minutes of her life and we snuggled in a bed with her. The one and only time we would ever lay in a bed with her. It was an intensely special day for us.
When you become a parent you know that it is your job to do all that you humanly can to protect and love your child. I had no idea that for us that would mean seeing her out of this world in such a short time. Our daughter lived everyday with a spirit I hope to have one day. She was bright and so silly. She made people smile and she brought people together.
She was an angel here on earth and I miss her every single day.
The months following Nevaeh’s death were so difficult. I didn’t know which way was up. We were lost and we hurt deeply. I wish that we had turned to each other immediately but for whatever reason, we couldn’t. There was a lot of hurt and many events that took place that I still can’t explain. But as time passed, we realized that we only had each other to share the feelings we were experiencing. We began to come back together. We searched for meaning from all that had happened. I leaned on my family a great deal and threw myself into work.
On the 10th of November something changed for me.
I got the greatest feeling. I woke up that day and the first thought I had was about Nevy’s life, not her death. It was amazing! I smiled before I cried. I remembered all the special times we had. It felt so good. From that day forward there was a floodgate that opened and has yet to close.
I have received so many lessons and blessings from my daughter’s life. And I got it. Nevaeh is where she is supposed to be. She is home. She is where we all want to be at some point. She lived a perfect life from beginning to end. She is with us all the time and that will never change.
I realized how lucky we were that God saw fit for Tommy and I to see this little being through her journey. That He trusted us enough to make the right choices for her and to love her deeply. He knew that we were the perfect parents for her and even though it would hurt deeply, He believed in us and matched us perfectly. He knew that Tommy and I each had stuff we needed to deal with and by bringing Nevy into our lives, it would open a door for the most intense healing possible. He knew we would not give up on her and that we would not give up on ourselves or each other. And believe me when I tell you, we have battled. We have battled our own demons and our own mistakes.
But today we are in a better place then we have ever been.
I know now that not everything has a clear purpose that we can see right away. I searched for meaning to her death for weeks after she passed. I wanted a book that would tell me how long it would hurt and when I would be “normal” again. But that book does not exist.
It was when I started to find meaning in Nevy’s life that it all changed. When I realized the gifts she gave to us in her time here. That was where the real healing has been.
On Christmas Eve we went to the NICU to bring a swing and blankets for the unit. We were told that there was a family that could really use some support, and of course we told the staff we wanted to meet them. We were invited into the unit (a place I had only been one other time since she passed) and there we met a family that would change everything for me.
They had twins born 5 1/2 weeks prior and things were not looking good. After a long few weeks it was time for their daughter to go in a few short days. And Tommy and I were able to stand next to these total strangers and be part of this special time. We were able to listen and we were able to share. We knew just what they were going through on a deep level.
Their son was in Nevy’s old room and they asked us if we would like to meet him. As I walked through the door and saw Sam, I was filled with peace. Tears filled my eyes and I knew this was no longer Nevy’s room. That she is with us all the time. Sam was there in “her” spot, fighting the same fight, and I was filled with peace that things were ok. As we were leaving the NICU, I grabbed the mom and thanked her for allowing us to share that time with them and allowing us to talk about our daughter in such an amazing way. I assured her if she needed ANYTHING she could call and that we would be thinking and praying for their family. To this day I don’t think they know what a healing gift they gave Tommy and me.
That experience was huge and it was all Nevy. We were able to go and reach out to a family that was hurting so deeply. We were able to understand their hurt on a personal level. We were able to assure them that hurting was ok. We were able to hear their daughter’s test results and diagnosis in the same way most new parents talk about sleepless nights and diaper rash. We were able to create “normal” in the most “abnormal” circumstances. I realized that part of my healing process would be to reach out to other families and be with them if they needed me.
Nevy is our warrior princess.
My greatest accomplishment in life thus far is that I am Nevy’s mom. There are days that I wonder who she would be right now. If she would still love Bach and if she would still light up every time we walked into a room. I wonder today on her birthday if she would have liked the taste of cake and if we would have had a party. I don’t think the wondering ever stops. There will be milestones that stir emotions, but overall we are in a great place with Nevaeh and her time here on earth. I have gratitude for nights that I dream of her and can feel her in my arms and for the quiet mornings when I can feel her spirit near me. We miss her with all that we are, but we know that what was supposed to happen did.
Tommy and I will be welcoming our second child on July 1, 2007, and I can hardly believe that in a year’s time we have given birth, given back and are getting ready to give birth again.
I am confident that we will be better parents as a result of having Nevaeh. I think we know now what is really important. I don’t think we will ever take for granted the small stuff, like holding our baby and hearing his or her sweet voice.
Nighttime feedings and sleepless nights will be cause for celebration in our house because we never got to have that experience with our daughter. Through this pregnancy another type of healing has occurred that I believe only could have occurred by way of pregnancy. I am so clear in my intention that I can be a healthy vessel for this child and fear will not stand in the way of this baby’s life. I have let go of any beliefs I had that I did something wrong that caused Nevy to come early. I really thought I failed her and today I know that to be so untrue. I know where ever my daughter is, she celebrates the intense bond we had in the same spirit that I do. We are one and that will never change. I was the best mom, Tommy was the best dad and Nevy was the best daughter. We were paired perfectly and no one let anyone down.
Next year we are planning to start a nonprofit in Nevy’s name that will be dedicated to putting NICU nurses through school and contributing to the NICU in whatever way we can. I believe that through this organization. we will keep Nevaeh’s legacy alive and well. She gave so much in her short time here and while that is a concept she could not even grasp, it is what she did.
Again thank you all for being part of this journey with us. Thank you for believing in us and reminding us that God does have a plan even when we cannot see it. Remember to hug your kids today and call your parents. 
HAPPY BIRTHDAY BABY GIRL!
All our Love
Tommy, Meghan and Super Star Angel “Nevy Noodle”
