October 29, 2020 was one of our best days and simultaneously the worst nightmare imaginable for us. Our son Elling Neil Rice was born at 1:13 PM weighing 4 lbs. 13 oz. and measuring 14.5 inches.
To get to this day, we had a series of good days and bad days. Finding out we were pregnant was one of the good days. The first ultrasound on May 1, 2020 that found his precious beating heart was another good day. The first time we felt him move, and all the other times after were also good days. Then our 20-week ultrasound on July 13, 2020 came. That day was great, we found out that we were having a baby boy, and we started narrowing down boy names. However, July 14, 2020 was the first worst day. We found out that our baby boy had abnormalities and deformities with his bone growth. Our primary doctor referred us to a specialist to take a closer look with better equipment.
We had our first specialist visit on July 17, 2020. We were expecting to hear news of a disability that our baby would have, and we would have to figure out how to adjust our lives to raise him. If only that were true, we may have had a good day. Unfortunately, we were blindsided by the news that our son more than likely had a lethal form of skeletal dysplasia, which made this our new worst day. In layman’s terms abnormal bone growth that results in death. From the imaging results the three top possible diagnoses were Thanatophoric Dysplasia, Osteogenesis Imperfecta Type II, or Campomelic Dysplasia. All of which are deadly in the womb or shortly after birth. The only way to know for sure was to get genetic testing from both of us. We went in and had our blood drawn on July 23, 2020. We received the results about a month later that our baby boy had Osteogenesis Imperfecta (OI) Type II, the lethal form of OI. There is a 0.005% chance of being born with one of the 19 types of OI. The chance of getting type II is unknown due to its rarity. Sadly, the majority of OI Type II births result in a miscarriage or stillbirth.
Shortly after discovering Elling’s diagnosis, we had to have weekly appointments to monitor his head growth. While his arms and legs were short, his head growth was outpacing the rest of his body. The larger his head grew, the higher the risk his birth became. We found ourselves trying to balance having Elling too early or having him too late. On October 22, 2020 we were given another week of monitoring. However, his head size was getting close to the point of needing to deliver him. On October 29, 2020 we went to our appointment expecting to make a plan to deliver Elling the following week. Our doctor got us scheduled for a delivery at 9:00am on November 2, 2020. Before we left the hospital, Katie was checked since she had some cramping. It turned out that Katie was actually in labor, and we were immediately admitted. The next couple hours were a rush of notifying close family and Katie getting prepped for delivery. Elling was breach, which means he was the opposite direction of what he is supposed to be to have a delivery that is safe considering his head size. The doctor tried three times to invert Elling to the right position, but it failed. The doctor then proceeded with a C-section, and our beautiful baby Elling was born at 1:13 PM, which made this one of the best days of our lives. The next 45 minutes were spent with me holding Elling, while Katie was closed back up. We anxiously watched his little chest move with the rhythm of his heartbeat. As we left the operating room, I was finally able to pass Elling off to Katie while we were moved to the recovery room. He held on to life and let us soak him in for a little over an hour. Elling passed away in Katie’s arms shortly after moving to the recovery room, which turned one of our best days into the absolute worst day of our lives.
We stayed in the recovery room with our precious baby Elling until October 31, 2020. During our visit, the nurses and doctors would acknowledge Elling like he was still with us to provide some sort of comfort, but we painfully knew he was not. The funeral director came to take baby Elling on October 31, 2020 and that was another very bad day. Shortly after Elling was taken, we left the hospital with our belongings and a box full of mementos that the hospital staff made to remember Elling. We are happy they were so kind, and we have objects to help remember Elling, but we want our precious baby not a box of souvenirs.
On November 1, 2020 we were able to have a small visitation with family and close friends to say our last good-byes. It was our way of stealing back some of the time that was stolen from us. Elling was loved by many that night, and he made an impression on their lives even though he was already gone.
Instead of reading stories to Elling, we are reading stories to Keeva about sibling loss and grief. Instead of setting up Elling’s nursery we are picking out an urn that should never have to be as small as it is. Instead of taking a picture a day to watch how Elling grows through his first year, we are stuck writing his story to keep his memory alive. Instead of snuggling our precious baby, we are snuggling the blankets he was wrapped in while we were at the hospital. Instead of having a photographer at Elling’s wedding, we had a photographer at his funeral. The rest of our lives will be filled with insteads.
Despite all the insteads, we are incredibly grateful for the time that was given to us. Elling’s heart was too big for this world. However, he is the strongest person I have ever seen. For only being expected to live for a few minutes at most, Elling gave us an hour. There were moments that we thought he was gone, but then his heart would beat stronger again.
Elling gave us a miracle and taught us so much in his short time here.
Elling taught us how to be strong when the world makes you weak.
Elling taught us how to be brave and hold on to what matters as long as you can.
Elling taught us to capture every precious moment you are given.
Elling taught us to be compassionate to others because you do not know their pain.
Elling taught us to not be afraid of the inevitable.