December 8, 2017. 6:06 pm. This was the first time that I got to leave the ICU and visit Miles. I had spent the past day and a half only being able to see him through pictures, videos and FaceTime. I was incredibly thankful for a strong and loving husband who balanced taking care of his wife and son on two different ends of the hospital. But it was a weird, awful, and painful experience to not be able to be with my son… He needed me… And I needed him…
As soon as I had received my last blood product for the day, my nurse made it her mission to get me to the NICU… Something that meant so much to me. I was so fluid overloaded from all of the blood products I had received but Marcus and my nurse helped me get out of bed for the first time – a simple, yet very difficult task for me. I had been through so much not only mentally but physically and it was incredibly painful to move, even just from the bed to the wheelchair. But we made it there, we had made it to the NICU… And as they wheeled me up to the incubator, I laid my eyes on that head full of hair, those long fingers, his little big feet, and every inch of his precious, beautiful face. He was so little, but so perfect… And I couldn’t believe that I was meeting my son for the first time. The last 48 hours had happened so fast and I was so overwhelmed, but so thankful that he was doing so well. We got to spend a little bit of time together as a family before I had to go back to the ICU… And when it was time to go, I hated to leave him… I didn’t want to… It felt wrong… But I knew that he was in the best hands with the NICU team. We will forever be grateful to the nurses, doctors and respiratory therapists who cared for our Miles during those seven days… They took care of him, they did things for him medically that we couldn’t and when we told them that we wouldn’t give up on our son, they didn’t either…
When I get flashbacks of our hospital stay, of that week in the NICU… It tears me in half, it breaks me, over and over again… I get taken back to that heart wrenching grief, that all consuming anger, that deep and painful sorrow… And sometimes it’s hard to get myself out of it… But I want to tell his story, I want you to know how hard our boy fought… And how beautiful that fight was…
Viability. A word that had been thrown at us over and over again when we were in the hospital with Brooklyn – something that I still struggle with to this day. But when we made it to 23 weeks with Miles, I was so excited. We had conquered a huge milestone in my high risk pregnancy. But I remember the Neonatologist coming to our room the morning I delivered and using the word “viable”… An awful term, a terrible word to say to parents. But she told us what the statistics would be if Miles was born at 24 weeks. 50/50. He would have a 50/50 chance at living. Truthfully… I don’t remember everything she said… I didn’t listen much to those bad, scary statistics… I remember thinking to myself, “Well, that won’t be him. He will be just fine”…
And throughout the whole time, Marcus and I would talk about how he was going to be different… He was going to be a little miracle, he would defy the odds, conquer every obstacle and we were going to take him home, we weren’t going to lose our son… We had faith… We had faith through the pulmonary bleed, through the oscillator, through the grade 4 IVH (Intraventricular Hemorrhage), the blood transfusions, the perforated bowel, the drain placement, the many attempts at PICC / central line placement… We had faith through the countless times where we didn’t know what the next minute, hour or day would bring… I pumped through it all, we talked to him, let him hear our voices, touched his little feet to let him know we were there, brought Brooklyn’s angel to watch over him when we weren’t able to physically be there… The past week had been a roller coaster… He had some good days, some great days… But he also had many hard days… And it was difficult to see our son struggle, it brought us to tears to see his tiny body go through so much, to see him hooked up to machines and IVs, but he wasn’t giving up… And as long as he wasn’t giving up, neither were we…
But when the moment came where it was too much, where he was tired, where he let go… I couldn’t. We couldn’t. I begged and I pleaded for my son. I needed him to stay with me. We couldn’t lose him. He was our rainbow. I didn’t know what we would do without him, and I didn’t know how we would survive it… And as the NICU team was trying to resuscitate our son, it was at that time where I had wished that I wasn’t a nurse… I wished that we weren’t in the medical field… We understood all too well what was going on and what the hospital staff was doing… And I don’t know if that made things worse… To not only have had your daughter die your arms, but to witness a team of people performing CPR on your own son… It was the most traumatizing and horrific thing to go through, and we are still traumatized to this day…
We were a mother and a father begging our son to stay, begging the nurses and doctors to save him... And when we were told that there was nothing else they could do… I let out the most gut wrenching cry… I told my husband and my son over and over how sorry I was… My broken body had failed my family yet again… And I was consumed with guilt, grief, sorrow and anger… But as I fell to the floor, Marcus held me up… He buried my face in his chest… And we clung to one another. Clinging onto the only pieces we had left. Broken pieces. Shattered and ruined. Angry. Angry at the world. Lost and tired. With nothing left to give. And no more strength…
My parents and Marcus’ brother had been at the hospital with us… And the rest of our family soon joined… We spent time with him. We held him – for the first and the last time. Bathed him. Kissed him. Memorized his precious, tiny face. Amazed at how much he looked like his sister. But that time we spent with him was not enough… It never would be… And when it came time to leave, I remember Marcus and I spending those last few moments with him alone… And as we walked toward the door, I stopped, looked back at my son and sobbed… I looked up at Marcus, with endless tears streaming down my face, and told him that I didn’t want to leave him… How could we leave him there… Alone… How could we leave the hospital without our baby, again… This wasn’t how things were supposed to be…
I died that day… The woman I was before my children was gone… That person died the night her daughter passed away in her arms and died all over again when she lost her son… That normal, carefree human being had been ripped into shreds… I had birthed two children and had also buried two children… Something no parent should ever have to do…
…I don’t know how we made it through that first night… Or through the past few months… Some days feel endless… But other days I don’t know where the time has gone. The world doesn’t stop spinning. Bills still need to be paid, you eventually need to go back to work, and everyone around you has continued to live their life. So what do you do? You live… Live the new, broken life you were given… You try to somehow survive… And your way of surviving may just be one day at a time…
…But I have learned that, ultimately, there are some things in this life that you have no control over… This is not the path I would have chosen for myself or my husband… But I feel my children with me every minute of every day… This world is so much bigger than we are… It doesn’t end here. God is still writing our story and His story is bigger than our own. He paints on a canvas the size of the universe… And one day, I believe that we will come to see that big and beautiful painting…
To my husband… Thank you for being the foundation of this family. For being not only a wonderful husband, but a wonderful father. Thank you for never letting me stand alone. For letting me lean on you. For being strong when I am not. I, too, will hold you up. Thank you for being my soulmate. The love of my life. My partner. My best friend. And thank you for creating this beautiful family with me…
To our Miles… Thank you for fighting. Fighting for me and Daddy. You have, in turn, taught us how to fight. How not to give up. You are our baby boy. Our brave, little fighter. You fought so hard. We are proud of you. And we will always be proud of you. And I want you to know that it’s okay… It’s okay that you were tired… I am grateful… Grateful for the time we had with you, grateful that God chose me to be your Mama… And I want you to know that no matter the pain, I would never change any of it… I am your mother, and my life has been made greater because of it…
I love you my sweet boy…
“Child loss is not an event. It is an indescribable journey of survival.”
Love, The Johnsons 
Nicely penned👍
LikeLiked by 1 person