Today, October 15th, is Pregnancy and Infant Loss Awareness Day. This is an issue that is close to my heart, and I feel honored to share this story of the precious time that Nicholas Dean Riehl spent on this earth. The following was written by his mom, Kathleen Riehl, and is being shared in hopes of raising awareness of this topic and honoring the memory of their son. The intensity of their courage, their pain, and their love is breathtaking. Please join me in embracing parents like Jim and Kathleen and their family, and remembering children like Nicholas by breaking the silence and letting them know that they are not alone. I know that in writing this, it is Kathleen’s hope that their story will touch other parents and families who need to hear it, who need to know that they are not alone, that they are not forgotten and neither are their precious little ones.
365 days… 52 weeks… 8760 hours… 525,600 minutes… 31,536,000 seconds…
At 6:45pm it will have been one year since the last time I held you.
One full year has gone by since the day you took your final breath and yet, I still feel like it was yesterday.
On the day you were born your were given a 10% chance of survival. Your daddy and I had to make a decision that day if we wanted to give you a chance of life or to let you go… we chose a chance of life. We thought you boys deserved a chance. Born on June 24th, 2015 at 1:23pm, you weighed 1lb 1oz and were 12” long.
We were quickly educated by the doctors and were told of the huge uphill battle a baby born so small, at 25 weeks, was about to face. We were told it was going to be a struggle… you had to start your little lives off fighting, and my god, you sure did fight hard.
It was such an over-powering feeling to look at you for the first time. I couldn’t touch you, I couldn’t cradle you, I couldn’t speak in a normal volume. All I could do was look over the side of your isolette at this tiny little baby for the first time. It was one of the most terrifying yet wonderful moments of my life. Although I couldn’t touch you, I could feel your strength. You and your brother are the strongest people I have ever known.
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Your first few days of your life went pretty smoothly, no big complications… they call this the honeymoon phase. Your daddy and I even laughed a few times thinking this “roller coaster ride” everyone was warning us about was so easy. Ignorance is bliss.
The following weeks did not go as well.
On June 30th, 6 days after you were born your daddy and I were called by the NICU at 3:30am and told we needed to come in to see you, quickly. Your oxygen needs had gone up drastically, you were put on an oscillator machine at 100% oxygen, nitric gas was given and you were loaded with steroids. Your lungs were failing and your body was not getting the oxygen it needed. We called in the chaplain, she said a beautiful prayer and you were blessed for the first time.
Your daddy and I never left your bedside. We sang to you, talked to you, held your tiny hand and hoped that you would miraculously pull through… and you did.
The very next day, you opened your fused-shut eyes and you were able to look at the world for the very first time.
On July 3rd around 11:30am you met your sister for the first time! She wanted so badly to hold you. I wish more than anything she could have had the chance. She loves you so much. She is the best big sister and she talks to you and about you often. She will look up to the sky on a sunny day and yell “I love you Nicholas!” She even made up a song that she sings to you. She really misses you.
On July 7th at 11:15am I got to hold you for the very first time! I had waited 2 weeks to to be able to finally hold my baby. The whole time you were on my chest I would rub my face and chin on the top of your little head. It was the only way I could snuggle you and give you a kiss. I can still remember what it feels like… You loved your head being rubbed. The next day, your daddy was able to hold you for the first time too.
On July 17th at 5:00am we received another phone call and we were told we needed to come in as soon as possible to see you. You had become septic with an infection, your liver and kidneys were failing and your potassium levels had skyrocketed causing you heart arrhythmia’s. For a baby as small as you were, a normal range for potassium in your system was between 3.4-4.7 mEq/L. Your levels were above a 10, so high the doctors where shocked you were still alive. Most adults would have died from cardiac arrest at this point, but you fought so hard… The chaplain was called in, she said a beautiful prayer and you were blessed once again. The harpist came in and played you some amazing music, you loved when she played for you. Your daddy and I sat next to you and never left your bedside. We sang to you, talked to you, held your tiny hand and hoped that you would miraculously pull through… and you did. By July 19th your potassium levels were back down to a normal range and your heart rate had steadied.
On July 19th, your Grandma’s and Grandpa’s came in to visit you. They gave you hand hugs and talked to you. You would wrap your tiny little hand around their finger and hold on so tight. They are so proud of you and I know they miss you so very much.
On July 21st at 2:00am we received another call from the NICU to come in to see you. Your chest cavity had filled with air and fluid causing your lungs to collapse. They found bacteria and fluid in your chest cavity that wasn’t supposed to be there. They had to drain the fluid because you couldn’t breath. Your liver and kidneys were still failing, your neck and body had started to swell and we were told about “redirection of care.” (a.k.a. pulling life support)
Because of infection risks, the NICU almost never allows twins to be put together, especially twins this small. But on this day, they made an exception. I got to hold you and your brother together for the first time… and the only time. The nurses placed you first in my arms and I bent down and gave you the biggest kiss on top of your little head. A minute later they brought Noah over and placed him right next to you on my chest. Noah reached out his little hand and placed it on your head. The two of you snuggled together and relaxed. You were finally together once again. I sang to you, talked to you, held your tiny body and hoped that you would miraculously pull through… Holding you boys together was one of the best moments of my life.
On July 27th around 3:00pm your daddy and I had a consult with a surgeon to look at your neck and the possible cause of the swelling. The surgeon decided he needed to drain some of the fluid and test it. Unfortunately, the surgeon delivered us the news that we were hoping he wouldn’t tell us. A little duct in your neck (which regulates your lymphatic system) was leaking. It was pushing fluids and bacteria into your chest cavity causing your lungs to collapse. Because you were so incredibly tiny and because your liver and kidneys were still failing all possible options for a cure were taken off the table. There was nothing left to do to fix it, you were to small & fragile for surgery.
Your doctor sat us down and told us that their wasn’t a lot more they could do for you. Even if you did somehow survive all of this, you would eventually need liver and kidney dialysis and/or a transplant. He told me about “redirection of care” once again. I asked for a second opinion… unfortunately the second doctor agreed.
That night your daddy and I went home and had to make the hardest decision of our lives. We decided that the following day we would choose “redirection of care.”
On July 28th your morning started with your daddy holding you for a few hours. You snuggled up on his chest and you looked so peaceful. After your nap, we were able to bathe you for the very first time. All of your IV lines were removed and we were able to finally put on your very first outfit. It was blue and white striped, preemie sized… you were swimming in it, but you looked so handsome. Your nurse wrapped you in a blue knitted blanket that had a matching hat and she handed you to me. It was the first time I was ever able to hold you in my arms like a mother does with her baby. I squeezed you gently, rubbed my face against yours and I walked you over and laid you down next your brother one last time. You were both asleep but I know your souls were able to say goodbye one last time.
At 4:48pm your daddy and I took you into a room that had the biggest window looking outside. We wanted you to see the grass, the trees, the wildlife, the sky, the sun and the beautiful hot summer day for your first and last time. We sat next to that window and we sang to you, talked to you, kissed you, hugged you, held your tiny hand and hoped that you wouldn’t struggle. I can remember telling you that it was “ok to let go” that I was “so incredibly sorry” and that “I loved you so very much”.
On July 28th at 6:45pm the doctor came in to the room for a final listen. She placed the stethoscope to your chest, looked at the clock and called it… “Time of death…” Your tiny heart had stopped beating and at that exact moment, my heart broke and my life was forever changed.
“I wish people could see you when they saw me. As if I wore a badge that let them all know you were mine- out of pride, out of love – but also to let them know that even though you’ve been gone for some time now, you’re still one of the largest parts of me. I wish they could see you. That they could understand why I still answer “three” when I’m asked how many kids I have. Why I smile and laugh, but occasionally I still cry some days for a simple reason: you’re not here, you should be, and I miss you. Why I am undaunted by death, unafraid, because you took part of me when you left, and now I live body and soul residing on this ground. But the part of me that held my hope – you took that with you, tucking it into your hands as you left – and now it rests, safely vested in heaven, in eternity. You’re why I cry at the pain of others, why I want to drop everything when I see someone else in need, why my heart is split open. I wish people could see you when they saw me. I wish they could see why I’m better, kinder, richer, more whole. Because I met you and fell in love, and even though you’re physically gone, you’re forever one of the very best parts of me.” – Scribbles & Crumbs
Nicholas, I promise you that I will never stop talking about you. I will always say your name, share your story and show off your pictures. I will never forget you and I will not let my friends and family forget you either. You are my baby, I am so proud of you and I will love you forever. I just miss you.”