A week ago today, on March 13th, Emily and I’s beautiful baby boy, Cade James Griffin, was born 2 months premature to the day. We had been in the hospital for a week, because Emily’s water had unexpectedly broken just before going to bed. After a week of testing, waiting, and injecting Emily with unknown quantities of drugs to hold off birth, Cade was ready to introduce himself to the world.
Emily and I, along with our friends and family, were on pins and needles waiting for Cade to be born, because our doctors had a number of concerns about Cade’s health. Emily’s water had broken because of a very large amount of excess fluid in her stomach. The doctors were concerned that Cade wasn’t swallowing the amniotic fluid, which is why there was so much. He also showed some signs during the ultrasound of a recessed jaw, open mouth & little limb movement.
At 6:04pm on March 13th, 2014, Cade James Griffin began his brief 32 hours on earth. As soon as he was born, being 2 months premature, he was whisked off by the NICU doctors to be put on breathing support, and to assess what was wrong with baby Cade. After about an hour of stabilizing his breathing, and trying to figure out why Cade’s skin was so tight and fragile, the doctors were at a loss. They had never seen a baby with conditions like Cade. His skin was unbelievably tight, and painful to the touch (to Cade). His jaw was small and recessed, making it nearly impossible to put a breathing tube in him if things went downhill. He wasn’t able to fully extend his limbs, shut his eyes for very long, or close his mouth. The doctors didn’t know what was causing his conditions, but they knew he needed to be in a hospital that could better support him. So almost as soon as he was born, Cade was transferred by ambulance to the Children’s Hospital in Denver, where the doctors could give Cade a better chance of surviving if his vitals starting declining.
The Children’s Hospital would turn out to be Cade’s final home for his time on earth. Emily’s dad, Jim, and I went to the new hospital as soon as Cade was transferred, while Emily and her mom stayed at our delivery hospital to recover. When we arrived at the Children’s Hospital, the night NICU doctor was also at a loss. He had never seen Cade’s conditions, but he was determined to get to the bottom of it by meeting with all of the NICU doctors the next day. We needed someone who had seen this before, and in less than 12 hours we would find just that, and have our answers. Jim and I headed back to the hospital to be with Emily and her mom until the next morning.
The next morning we headed back to the Children’s Hospital to get the news that would change our lives forever. A NICU doctor named Dr. Horst, who turned out to be an unbelievable support for us, walked into Cade’s room where we were waiting. Dr. Horst amazingly had seen this condition before, 11 years earlier in this same hospital. One of the top Geneticists in the country also happened to be in the hospital that day, and confirmed what Dr. Horst suspected. Cade had an extremely rare skin condition in which his skin stops growing, while his body continues to grow. This explained all of Cade’s issues. His jaw was recessed because his skin wouldn’t allow it grow. His skin was tight because he had outgrown it. His mouth and eyes were difficult to shut because he didn’t have enough skin to pull them shut. Cade was in pain and there was nothing we could do about it. The condition was incurable and was not survivable. There had only been 40 reported cases of this condition in history, so to say it’s rare is a dramatic understatement. We were the 1 in a million, if not billion.
Over the next and final 14 hours of Cade’s life, our families rushed to Denver to meet Cade and support Emily & I. It was the longest, worst, and most beautiful day of my life.
We got to hold Cade in our arms.
We got to fall asleep with him resting peacefully on our chest.
We got to kiss his hairy little head.
We got to calm him when he cried.
We got to baptize him and pray for him.
We got to take pictures with him that will be with us for life.
In a nutshell, we got to be mom and dad.
Cade passed away in our arms at 2:30am that night, March 15th. His 32 hours on earth was complete. We got to hold him and be with him as he took his final breaths. It was incredibly difficult to do, but we wouldn’t trade it for anything. There’s no other place we would have rather been at that moment in time. Moving forward is not going to be easy. There will be days where we don’t want to get out of bed. There will be days when the last thing we want to do is see or talk to another human being. There will be good days and bad days. But we will pull through. Our journey to build a family is not over. Not by a long shot.
We will choose to be grateful, not angry.
We will choose to be hopeful, not hopeless.
We will choose to ask “What’s next”, not “Why us”.
We will choose to be thankful that we had to endure this, and not someone else.
We will choose to remember Cade with fondness, not sadness.
One of the many silver linings in all of this has been the incredible and unforgettable support that we have had from countless friends and family. It is times like these where a simple “thank you” is all that can be said to literally 100s of people that have been there for us. Bringing us meals. Cards. Flowers. Notes of encouragement. Financial help for the piling bills. We have been utterly blown away over the past 2 weeks. It helps bring us smiles during a time of far too many frowns. So for that I say thank you. Thank you for your help. Thank you for being there. Thank you for reading this. Without you, this road would be a lot more difficult to travel.
We are broken, but we are blessed. RIP baby Cade.
Cade James Griffin
March 13th, 2014 – March 15th, 2014