Update: we’re having a memorial service for Samuel on Saturday, February 4th, 2017. All are welcome. See our invitation for details.
Samuel David Kniley passed away peacefully in our arms today, Wednesday, January 25th at 4:30pm. We didn’t think his health would worsen so quickly, but today worked out much differently than we expected.
Samuel was doing well his first day, and was scheduled for surgery at 11 this morning, but overnight his breathing capacity started to decline. This is a common occurrence in Trisomy 18 babies, but Samuel started down that path sooner than most.
The medical staff started to give him increasing amounts of breathing support as his numbers worsened. In the morning his changes were gradual, and they thought he might make it another 24 hours or so.
But after lunch he took a turn for the worse and needed increasingly frequent additions to his oxygen support. He rapidly approached the upper limit of what the medical team could provide, and we agreed the best thing we could do was hold him and keep him comfortable.
Joanna sat in a chair next to his bed and we handed Samuel to her for the first time since right after she delivered him. Our wonderful nurse gradually disconnected his wires and tubes as they became unnecessary, and Joanna got to hold our beautiful little boy as his breathing became less frequent.
Eventually we sat together, and Joanna graciously let me hold Samuel for a long time. Joanna carried Samuel for nine months and delivered him into this world, and she allowed me to hold him as he left it. His heartbeat continued for over an hour, and finally stopped at 4:30pm.
Most of our family joined us in our room to hold Samuel for their first time and cry with us. Our nurse helped us make some memories and keepsakes, and Joanna and I got to pray and enjoy Samuel on our own after our family left.
We are so profoundly thankful for the gift that Samuel has been to us. We had 38 hours with him and are heartbroken beyond words to have lost him so soon, and we will grieve his absence for a long time to come. But he will always have an incredibly special place in our family as our second child, and we will cherish his memory forever.
We’re on track to come home from the hospital tomorrow. Our plan is to lay low for a while, and we’ll probably have a service in the next few weeks to remember and celebrate Samuel’s life.
We’re sad that we didn’t have time to share Samuel with so many of our friends and extended family in-person, but we’re so thankful for the many people who read this blog and express so much love and support for us. We might not be able to respond to every message we get, but please know that we receive all of your love with great affection and kindness in this difficult time.
Thank you for standing with us. We are thankful, and devastated, and grateful, and blessed, all at the same time.
– The Knileys