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Ethan's Story – His Life


Ethan, baby with anencephaly, with his parents

What will I do if I have to come home without him?
That's the question I continued to ask myself as the days, weeks, and months flew by as I waited to meet my son. Before I knew it, the time had come.

It was the night before we went in for the scheduled C-section and I wasn't sure if I would be able to even close my eyes. Our dear friend Sarah had flown in from Michigan and was in the other room getting ready for bed. Nick and I prepared for bed slower than usual and as we climbed into bed I started crying. We laid together under the covers and prayed for what was to come. With Nick's hand on my belly, cradling a lively, strong and kicking Ethan, we both drifted off to sleep.

June 19, 2013

We all try to escape into our dreams, for there we don't have to face our realities.
The alarm went off way too soon. We got up and began getting ready to go. Sarah rallied the kids and Nick and I checked and rechecked all our bags we had to take to the hospital.
At the last minute we were asked to do another interview with FOX 5's Aungelique Proctor before we checked into the hospital so we had to leave at 8 to meet her at 9. Nick's Mom and sister arrived promptly and we loaded up and got on the road. We had a suitcase for me, a suitcase for Nick, a suitcase for the kids with snacks and toys, a cooler with drinks and snacks for Nick, 2 suitcases full of molding and casting kits, and 2 large bags full of Ethan's things. I remember thinking and later telling everyone that packing for the hospital to have a healthy baby doesn't come close to the packing and planning needed to prepare for our type of situation.

We met Aungelique Proctor and her camera man down the road from the hospital and did a quick interview on how we were feeling the morning of. She asked us again what our greatest wish was, and we both agreed that all we wanted was to meet and hold Ethan alive.

We pulled into a parking space at the hospital at about 9:30 and started unloading. As we all walked in, I thought to myself, this is it, the time has come. We went straight upstairs to the Maternity floor and took ownership of the large waiting room. I had been preparing for this day for so long and had sent out an email to our family and closest friends we wanted to be there when Ethan was born. I'd asked everyone to arrive at 10:00 because I was supposed to check in at 10:30 and I wanted us to all go to the Lord in prayer before I went back. Slowly everyone started showing up and taking their seats that they would be waiting understandably impatiently in. We greeted everyone with forced smiles, but were happy to see our loved ones there with us. We chatted a little bit, and when 10:25 rolled around, we all stood and held hands and prayed for God to be with Ethan, us, and all the medical staff watching over us.

Ethan, baby with anencephaly, with his parents

At 10:27 my nurse came out to get me. They triaged me in the room closest to the OR so that when they had me all sewn up they could wheel me straight into my private room for recovery. I changed, got my IV, and was answering questions left and right preparing for surgery. And then all too quickly, it was time to go.

They walked us across the hall to the OR at around 12:15. Nick was instructed to stay behind and get dressed while they prepped me. My nurse led me into the bright white room and sat me down on the operating table. The anaesthesiologist began to prep me for my spinal as nurses and doctors piled into the room with me. I was trying so hard to be brave and not lose it, that my body started shaking. I knew I wasn't going to make it through this without something for my nerves, so I let the doctor know right away that I wanted something as soon as he was done with my spinal. After the first and second failed attempts at a spinal, another anaesthesiologist came in and said "If we can't get the spinal this time, you will have to be put to sleep". I was already in a panic and praying to myself the entire time they were trying to get the spinal in, but when he said that, I started praying out loud and harder. I knew that if they put me to sleep I wouldn’t get to meet Ethan alive. Pushing my back out as far as I could, I suddenly felt the meds working and my legs going numb. Thank you, God!! They finished getting me prepped and finally Nick was allowed in.

He rushed to my side and grabbed my hand. We knew it was starting. I laid there as they pushed and pulled and I tried so hard not to hold my breath. I wanted Ethan to get all of my oxygen before he was cut from my life cord. Suddenly, I felt empty. So empty. I knew he was out. A hush like no other fell over the entire room and we were all silent…even Ethan. I asked my OB "is it bad", and she said, "I'll let Dr. W. (Ethan's Pediatrician) explain everything to you". I knew immediately his anencephaly was severe. I needed no explanation. There was still no cry from Ethan. I started to panic and had to be given more meds to calm me down. In about 30 seconds, Ethan was in Nick's arms and on my chest. He was beautiful, but so still. I started crying and looked at Nick and asked "is he alive?" Nick wasn't sure, so he asked the nurse and she said "Yes! He's alive!"

I kissed his face and held him so close to my face and just stared at him. Nick and I sat there and just watched in awe of our miracle baby as the whole room faded out. It was just us, and him, and God.

Ethan, baby with anencephaly, with his parents

The nurse did 2 checks for a heartbeat and with each reply of "I still have a heartbeat" we relished in our time with him. Ethan's color started to change and with him on my chest, in both mine and Nick's arms, Ethan took his last breath.

The final heartbeat check was done and our fears were confirmed. He was gone. In his Mommy's and Daddy's arms, wrapped in love, Ethan was escorted into the arms of Jesus.

Ethan Nicholas was 4 pounds 15 ounces and 16 inches long. He lived a glorious and miraculous 21 minutes.

Once Ethan's passing was confirmed, I became inconsolable and was heavily sedated. They finished up with me and wheeled me into my recovery room. Nick followed with Ethan. We spent some time together alone before having our kids come back. Once we brought them back, we spent time as a family and let Leo and Ryanne say their goodbyes.

My dear friend Jessica faded into the background taking pictures non-stop. We rotated everyone out to meet Ethan and say their goodbyes. Once everyone had been in to see us and Ethan, we took tons of pictures and started the molds, castings, and prints. We held Ethan and loved on him. We changed his clothes and we swaddled him. As night fell we were moved into another room. We said our goodbyes to Leo and Ryanne and we settled in for the night.

I fell asleep that night holding my dear sweet Ethan. I knew it would be the only night I would get to rock him to sleep.



Last updated April 3, 2019