Killian’s Story

Site created on June 2, 2021

Welcome to our CaringBridge website for Killian Robert! We are using it to keep family and friends updated on Killian’s journey in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting!

Newest Update

Journal entry by Alisha Roe

Day 143 💙
I am so sorry I haven’t been updating on Killian lately! We have all been so crazy busy between work, going down to see little man, and getting our home ready for him to come home. 
Going back to last week, Killian kept improving on eating but still had to work on waking up on his own to eat during the night. His eyes improved and his right eye was completely vascularized to the laser and showed no ROP and his left eye only showed stage one. With this improvement they transitioned him from the RAM CPAP to a normal nasal cannula 😊he did amazing with this transition and had no problems with the lower support! He actually does better with keeping the cannula in his nose better! 
Sunday was my birthday and Garrett and Killian got me a really nice camera so we can take pictures of little man 😊 We also got cupcakes and other sweets for all of the nurses, doctors, and other staff who have taken care of Killian. 
Killian was circumcised at the beginning of this week. This weeks eye exam showed stage zero (no ROP) in both eyes! Killian also improved on waking up and eating on his own and ate all of the offered bottles so on Wednesday he was able to be advance to phase 4, which meant he could eat whenever he wanted and as much as he wanted. He just wasn’t allowed to go more than 4 hours without eating. He did absolutely amazing with this! He was supposed to meet his goal of ounces eaten in 24 hours for two consecutive days before they could pull his NG, but he did so good they ended up pulling it Thursday  afternoon!
With this, there was nothing else keeping him from coming home so we started to set up all of the education Garrett and I had to go through in order to take him home. We were told it would be Sunday or Monday that he could come home. Friday morning we completed our oxygen and monitor training during rounds were told of his oxygen concentrator could be set up that we could take Killian home! 
The oxygen got set up around 3:30 and we headed home with our little man around 4:30!
We surprised my grandma and grandpa Urbain by visiting them on the way home! And Garrett’s parents came to visit little man when we got home, this was the first time Lee was able to meet Killian! 
Our first night at home went really great and we are all getting settled in! Even Mae is excited, and very curious, about Killian being home! 
We could not have made it through any of this without the love and support of all of our friends and family. While we still have a long way to go, we are so happy to be at home with our favorite man! 💙
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