I can’t believe one year has passed since you were born.
One year since we anxiously awaited your arrival and prayed you would somehow be okay.
One year started the biggest heartbreak of our lives.
I never felt sadness or pain the way I did when I watched you suffer. I wanted things to be a bad dream, for them to not be real. How they be real? How could this be happening? I still wonder how the hell that was actually our life. It was real. It was not a dream.
Before Harrison was born, I knew something was wrong. I had stopped feeling him move about 2.5 weeks prior and I told my midwife this. I dopplered his heartbeat almost every day to make sure he was still there, afraid every time I put the probe to my stomach, he would no longer be there. I felt alone, my midwife wasn’t doing anything for me, she wouldn’t give me an NST because I was too early and she didn’t see the importance of an ultrasound. I will never forgive myself for not insisting she do something. Once I finally talked to a doctor, this amazing physician, she sent me for the ultrasound. She LISTENED to me and ADDRESSED my concerns. The ultrasound showed multiple problems. He was struggling. I was right in my worry.
This was literally my worst nightmare. At the time, being an L&D nurse, I knew his problems were bad, but how bad? Would he survive? Would he be delayed? Would he be disabled? It never crossed my mind that he would die. When I was admitted, they warned me, “we may have to do a “crash” on you”. Harrison’s heart rate tracing looked awful. I prepared myself for the worst. March 10 came around and he was still alive inside my belly.
He was born at 11:22am via c section. I listened for his cry but the room was silent. My coworkers were silent. I knew it couldn’t be good. The NICU team was waiting for him. I don’t know what happened behind the closed door when they were resuscitating him, I’ve seen some records, but from what my coworkers told me, he didn’t do well. The team debated continuing, but were able to get an ET tube placed. They brought him by while they were finishing my c section but I couldn’t see him. Billy showed me pictures and he looked adorable, his little breech legs stuck straight up. His pink and blue hat all bloody. He was here. Part of me felt relieved, my body was not able to keep him safe. I thought he would be better in the hands of my coworkers, the people I’ve worked with before and stood by and trusted. I trusted these people to care for him in one of the best hospitals in the nation. I thought we were in good hands. The other half of me knew this was about to be the worst few months of our lives. Trying to balance my own recovery, Ava and home life would be hard but I could do it. It’s only temporary. Harrison would be home in a couple months and we’ll carry on with our lives.
Once I got transferred to the postpartum area, I was able to go see Harrison. He was tiny and red. His eyes were closed. His skin was sticky. His arms were tight and contracted. His legs were stiff and straight. He looked uncomfortable, like he was in pain. I knew he was not a “normal” preemie, but maybe this could all get better? I didn’t know what we were really in for, but I had hope.
I couldn’t believe my ears. Things the doctors were telling me were unimaginable. I never dreamed it would be like this. They said he had a “genetic condition”.
When Harrison was less than 48 hrs old, he was doing very very badly. His oxygen settings were very high. They prepared us for the worst and asked us the most awful questions. If your child begins to deteriorate, what do you want done? I asked if his lack of movement before he was born had anything to do with it. The team taking care of Harrison at the time insisted no. I sent Billy home to be with Ava. He had been with me at the hospital everyday for 4 days. I was exhausted. I blew Harrison a little kiss and went back to my hospital bed to try to get some rest. Less than 20 minutes later, the nurse came with a wheelchair and said Harrison was doing badly and I needed to come immediately. I called billy. I was rolling down the hallway where Harrison’s room was, and the familiar pink cart was outside his room. This is not a good sign. The pink cart is for a code pink. That means your baby is dying. There were people all over. I started to cry. I thought oh my god this is it. Harrison is going to die already? How is this possible? I called billy again. I watched and waited. No one came to tell me what was going on. They asked me if I wanted a cup of water. How the hell could I drink anything? I was hysterical. Standing there waiting for billy watching my son die. I watched his saturation’s fluctuate up and down. I watched them intermittently doing chest compressions and poking him. Proding him with needles over and over. This was one of the worst nights of my life.
Billy came and he watched. We were helpless. We thought they were going to tell us to come say goodbye to him, but instead two doctors came and took us to a quiet room and told us how badly Harrison was doing. They felt he might not make it through the night. They said they made a mistake. They said he developed a pneumothorax in his left lung, but they misread the X-ray and placed a chest tube on his right side. Not one chest tube, but TWO chest tubes. Once they placed the correct tube on the left, he began to improve but was still doing poorly. He was placed on a special ventilator and if he didn’t do well on this ventilator, then the options would be limited. Days later, when Harrison was still struggling, we found out the chest tubes were actually placed INTO his lungs. We were infuriated. I remember glancing at the clock, it was after 3am. I don’t think I had slept much in days. We were bawling and completely exhausted. I had never been in so much pain. My heart ached, my abdomen burned, my head pounded. I could barely process this. I couldn’t believe that my team, my people, my coworkers had made a mistake on my boy. Coincidentally, I was the Safety Coach on L&D. Funny, right? We always talked about how simple errors cause big mistakes. How did this happen to MY son???This literally was a nite mare unfolding right before my eyes.
Harrison fought through the night. He was doing poorly, but we sat by his side as much as we could. I would have to go home soon, discharge was only a few days away. What would happen when we weren’t here? What if he crashed again and we couldn’t get there in time?
We had very little trust in the team at this point. We asked for a different team, which was granted in a few days. I went home. It was hard. It was near impossible. I cried every single day. After I left the hospital, I was so overwhelmed. The clock continued to tick, the world kept turning. Ava still has to be in school almost every day. Billy had to go back to work within a couple days. Laundry piled up. The refrigerator was empty. My body ached to be with Harrison, but Ava needed me too. Our family was incredibly helpful and supportive, but I wanted to be with Harrison as much as possible. The balance was truly impossible. Harrison had more scares. The communication with the team was terrible. No one wanted to take care of Harrison, as his settings were high and he was finicky and we asked a lot of questions, called constantly. I knew things were bad, but Hope is a funny thing. And as a mother, you see what you want to see. I understood some things from a nurse perspective, but I held onto the hope that Harrison could get through this. We let go of the possibility that he would be a “normal” little baby. He would likely need assistance in many ways. I’m a nurse, I could handle it.
As time went on, Harrison did not improve. He failed trial extubations three times. Over the course of his little three month life, he had several chest tubes, fentanyl drips, collapsed lungs, more than one medical error, MRSA, PICC lines, arterial lines, probably hundreds of chest X-rays, brain scans, MRIs and countless blood tests and transfusions. His genetic testing came back normal. Our genetic testing came back normal. We had no answers as to what happened to Harrison, but eventually connected with a wonderful attending doctor who loved and took care of Harrison AND our family. She didn’t think Harrison had a genetic condition but thought maybe the placenta never made a good connection. They thought maybe Harrison had a stroke in utero. Something that was incredibly rare.
Over the course of three months, we watched our sweet boy deteriorate. We prayed and hoped for a miracle, but we knew his time was short. We loved on him and cuddled him and kissed him. He loved being passed around and held.
We knew our lives would never be the same. Today, we remember him and his beautiful but short life. I wish none of this ever happened to us, to Harrison. I wish I was celebrating his first earthly birthday. That I was bouncing him on my knee and hearing him giggle, watching him crawl, walk and grow.
I think I will always wonder Why Harrison? I will always question WHY he had to suffer. I will always pray that he is safe and comfortable in Gods arms. I will pray no other parent ever has to endure what we all went though.
Today we miss you Harrison. We celebrate your strength and our love for you! We will be looking for your signs today and always. We love you so much sweet boy. I can’t wait to hold again one day. ❤️❤️❤️❤️