"Three months of breathing clean air, I still miss your dragon smoke" (words modified from David's Godmother Taylor). Three months. Some days are long. Some are short. I just know I never want to forget a single moment we shared together. Also, don't worry - David's smoke was just his nebs which didn't have any … Continue reading September 20, 2024
Author: Jess
June 27, 2024
One week. It's been one week since we said goodbye to David. I've wanted to post something for a while, but it is a struggle. If anyone is familiar with Randy Pausch's Last Lecture, at the end he said the whole lecture was a head fake. It was not a lecture for those in the … Continue reading June 27, 2024
David’s Obituary
https://www.mattsonfuneralhome.com/obituaries/david-tilly David Walter John Tilly, born on November 1, 2023, in Minneapolis, Minnesota with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Sadly, he passed away in his parent’s loving embrace on June 20, 2024, at the tender age of seven months. He brought immense joy and love to his family and everyone … Continue reading David’s Obituary
Service Details
The world has lost a bright light. David's memorial service will be on July 8th, 2024. There will be a visitation from 3-6 PM, followed immediately by a service. This will take place at our church St. Paul Lutheran Church in Wyoming, MN.
June 17, 2024
So, I'm sitting here at home and don't know what to do with myself. There is plenty of stuff to do here that has been neglected the last few months since it didn't seem as important as being with David, but my mind is still with David tonight. I was able to spend last night … Continue reading June 17, 2024
June 15, 2024
This is not the post I want to be making. David’s EEG (brain activity monitor) is showing that David’s brain activity is minimal and he has lost the part of the brain that makes him who he is. The part that has made everyone fall in love with him. His brain stem is intact, but … Continue reading June 15, 2024
June 13, 2024
David earlier today. No one knows why he crashed. He had gagginess this morning, but had lots of periods of happy play time too. He even made a recording of his heartbeat with music therapy. He received compressions for a long time. Only time will tell how it may have affected his brain and other … Continue reading June 13, 2024
June 13, 2024
Adam just informed me David is having rhythm issues and is coding. Please hold him in your prayers.
June 12, 2024
David was kind of sleepy today. His day started off with an echo. He mostly slept through it until the probe was near his neck but this is always his least favorite part. Remarkably, he didn't scream his way through it, but just kind of wiggled. He responds very well to holding hands, so we … Continue reading June 12, 2024
June 11, 2024
This morning started off with a bit of a shocker to us, hearing that David was on the list to head upstairs. After yesterday, we thought they would like him to be a bit more stable before making the move. It turns out, that was the case and David probably has a few more days … Continue reading June 11, 2024