Weary & Burdened Ep. 016: The Knowing

Imagine my heart in my hands for you to see. Held out publicly for your inspection. I’m sure you can gather the level of vulnerability that would require. The trust I’d need to place in you to lay so bare, my hurt, in your presence.

So we need to make a deal at this point. If you’re going to continue on this journey with me, I’ll require something of you now. Up till this point you’ve been a passive listener to my story. As we move forward I need your continued role of hearer and not judge because I’m about to share with you the hardest day of my life. I’m shining the light into my darkest hours so you can have an unobstructed view. Drawing back the curtain on the heartbreak. Inviting you behind the scenes to witness my misery firsthand.

January 3rd

At 3:30 am I fell asleep. David wasn't doing so hot but I was exhausted. I woke up at 6:30 to check on him. Before I had a chance there was a knock on the door. The doctor told me to call Reuben and tell him to come quickly and have everyone we knew pray for a miracle. They were losing David. I couldn't believe what I heard.

I phoned Reuben and my mom. I remember apologizing to Reuben for sleeping while David was so seriously ill. I ran, sobbing, into see David. There was a large group of doctors and nurses around his spot. He was once again listed as critically ill. His x-ray showed full blown NEC. I cried and listened to the terrible news through my tears. The medical staff had worked for hours to stabilize him. I sat by his incubator and read Psalm 86 and 121 to him. “Don't give up now little honey,” I pleaded.

I was in shock. How did we get here? He was fine the day before. More than fine. When my brother came to visit the other day David was doing great. Why was this happening?

My mind flashed back to the first doctor I spoke to way back in October. The kind man in Kamloops who explained the risk factors of severe prematurity. He mentioned NEC. Necrotizing Enterocolitis. He explained it affected the gut. I distinctly remember brushing it off. I didn’t think it was nearly as bad as some of the other stuff he’d listed. Little did I know.

Months later, on the 3rd of January, I was sitting in the NICU at BC Women’s Hospital with a doctor explaining how NEC could have a rapid onset without warning.

I put my finger into the incubator and David squeezed it tight. He fell asleep but didn't let go. He just kept squeezing my finger and if I moved, he squeezed harder. That was the first time he'd ever done that so I kept the incubator open and read him the bible until he let go.

Reuben arrived safely. He visited with David as I rested in the room at the hospital and prayed. I prayed that God would heal every cell in his body; I prayed for every ounce of his bowel to be restored; I prayed for a miracle.

Reuben came in to inform me they would perform emergency surgery on David. We met with the surgeons. They had moved babies out of 41 and upgraded them to the "back" to make room for a makeshift operating room. They planned a second laparotomy on our sweet David. The procedure could end his life but if they didn’t do it, he would die. We signed the consent forms. I knew he could survive the surgery. He was just that kind of baby.

We waited in our reserved room for hours. Our primary nurse brought us drinks, a snack and an angel pin even though she wasn’t on his care team that day. A doctor came in to explain everything. Most of our time was spent crying and praying. I prayed for a miracle but in my heart I had a bad feeling. A peaceful feeling but a bad one nonetheless.

The surgeon and doctor returned. No, please, don't say it, NO! The surgeon said that David had been strong but not strong enough to win the battle. He had survived the surgery but his entire bowel was dead. It was like gray tissue paper. Nothing was salvageable. You can’t live without a bowel. You need some. Even a tiny bit will do. The surgeon searched every millimetre. There was none. He was sorry. So sorry. I could tell by the look on his face how sorry he was. Genuine. Deflated. Defeated. We thanked him for everything. We knew he tried his best.

Up until then Reuben and I were tearless. When the doctor and surgeon left Reuben disintegrated. I stayed for a minute and then ran to my locker and grabbed my camera. I needed to see my baby.

As I washed my hands I, too, fell apart. The surgeon saw me, paused and then tearfully rushed away. I started to hyperventilate. I couldn’t catch my breath. It felt like my heart was being sucked out of my body. The nurses helped me to his incubator. The lid was removed so I stuck my hand in and touched David. I told him it was okay; I told him I was so sorry he had to go through all of this. I took some pictures of him. He looked so sick. And tired. Oh he looked so unbelievably tired. I stuck my head beside him and laid it on his blood soaked towels and sheets. "I'm so proud of you sweet baby. Thank you for trying so hard sweet baby," I cried. "I love you sweet honey. I love you too much little baby. David, mommy loves you. You did so good. You are such a big boy. You're so strong. You're so sweet. Everyone loves you little baby. God loves you. You know what sweet baby? Jesus loves little babies. He loves them so much. God loves you sweet baby. He's going to wait for you. He's going to love you sweet honey. Just like mommy does," I sobbed. I stroked his sweet head. The nurses were crying watching me. Our primary had to leave. She was bawling and was being consoled by the chaplain.

I asked the nurses to get Reuben. I was so afraid he'd miss seeing David alive.

They had planned to move David to P2. The same room he was admitted to after his birth. They were taking us there for privacy. The doctors said there was nothing more they could do. David's only chance was a miracle. They wheeled David into P2. A sense of peace came over me. Perhaps God had prepared me earlier for what was to come. I don't know? I stopped crying and was determined to spend as much time with David as possible.

The night prior at 7pm I had dinner and decided to fast and pray. It was 5pm and I continued on with my fasting and praying. I prayed for a miracle for my baby. God can do mighty things.

The chaplain came in and she brought in a battery operated candle and we put it on David's incubator. At that point David was on 100% support. They were giving him 100% oxygen support, pain support, antibiotics and meds for his blood pressure. He was barely hanging on. Our primary rejoined us. Bless her soul.

Another primary joined us too. I remember looking around and seeing every single person in the room crying. Our baby was so loved. Nurses that had cared for him only one single time came in and cried. The doctors were heartbroken for us.

I called my parents, who were watching the kids back home and asked them to come to Vancouver. It was one of the doctors ideas and to this day I’m thankful she suggested it. She told me it was important for the kids to see; It helps them understand and grieve. My parents left for Vancouver right away.

Reuben and I took turns holding David. We sang, read to him and prayed for him. It was the longest we'd ever held him. Hours.

Our primaries were awesome. One stayed after her shift to make sure we took in every moment. She called a professional photographer to come in and take photos of us and him. She moved David from my arms to Reuben and back. This doesn't sound like a big deal but it took three people to do it and sometimes up to 15-20 minutes to complete the move.

It was my first time to kiss my baby on the face. Can you believe that? After all that time.

Reuben and I wept. Our tears falling on his sleeping face. His tired, tired face. "Sweet little David, I'm so sorry baby. I'm so sorry you had to go through this," I whispered. "We're proud of you no matter what little baby. You did such a good job. Such a good job."

My brother Jeff and his girlfriend came, as did my mom, dad and children. Many hours the kids and my parents stayed to talk and pray with our David. Scanning the room, every face showed only anguish. There was not a dry eye. Except for Josh. Our big boy didn't fully understand what was going on but bless his little heart, he became our great comforter. He handed out so many hugs and kisses. He brushed the hair out of my face. He held David's hand and rubbed his head. Mya was visibly shaken. She kissed his head and said, "I love you David," many times. Kiana cried and cried. Her little chest heaving. She kissed David and said she loved him. She was so upset. I hugged my kids. The girls knew how sick he was. They looked scared. We all were.

The nursing staff cared for David so lovingly the whole night. Every medical staffer bent over backward to help us and our baby. They gave us two rooms so my parents and kids could stay at the hospital. Reuben and I stayed in the room with David. We slept on and off taking turns checking on him.

I’ve always said January 3rd was the hardest day because of the knowing. The learning of the terrible fate we were to experience. I’ve since learned there is a name for this: anticipatory grief. To me, it's the worst kind.

The glimpse into the future rocked me to my core. January 3rd, 2012 was the day I knew my son was going to die and I couldn't do anything about it.

My heart shattered. As it crumbled, I helplessly let it happen and watched as the hearts of those I loved did the same.

The knowing, it ruined me. Of all the long lasting effects of my time in the NICU, that part of the journey has haunted me the most. Persistent. Unresolved. It’s the biggest part of my brokenness.

My son, David, was going to die.