The day my baby died – October 15, 2018

Our little Bean is gone. Killian died, fighting like hell, at 11:45 this morning. Dean and I were with him through the fight, and were able to hold him for his last few minutes. It all happened very quickly. We’ve been with him today, and just said our goodbyes. Thank you to every single person … Continue reading The day my baby died – October 15, 2018

October 14, 2018

Well, like I said before. This is a roller coaster. Killian took quite a turn early this am. He’s been in a fairly critical state since about 530 am. He was doing very well, until he wasn’t. He’s had to be put back on the ventilator as his breathing wasn’t doing well. His temperature and … Continue reading October 14, 2018

October 13, 2018 “Calm before the storm”

Our big man is off the ventilator! He did great. He’s being given a low flow of humidified air to help keep his poor airway happy. He’s being great though. Quiet and uneventful is a good thing. He’s still being given antibiotics to make sure any infection is being taken care of. They’re slowly starting … Continue reading October 13, 2018 “Calm before the storm”

October 12, 2018 “The Gtube”

Big day today. Killian goes in for his gtube surgery early this am. A gtube is a feeding tube they goes directly into his stomach. This will allow us to remove the ngtube which has been going through his nose, into his stomach, since he was born. I really struggled with agreeing to this surgery. … Continue reading October 12, 2018 “The Gtube”

October 10, 2018

This morning, I was sitting with Killian, giving him his morning medications, and messaging with another mom on this floor. I came to a very strange realization. Absolutely no one can plan for something like this. No one deserves it. No one prepares for it. That being said, all the things that I’m doing and … Continue reading October 10, 2018