Our goals for today were to wean down John’s oxygen to a point where he could take a bottle and get some food. Initially, we were able to turn down his oxygen but he failed his swallow test when he went into even worse respiratory distress while trying to drink his milk. We had to increase his oxygen and he’s been working very hard all day just to breathe. 
They placed a feeding tube for him (which we asked for!) because he’s gone so many days without food and barely weighs 6.5 pounds at 2.5 weeks old.. 

The ENT surgeon came to see him and said the parts of his nose that were successfully dilated are already starting to reconstrict. At this point, we believe his breathing issue is causing silent aspiration which has brought us to this spot. As such, he will need to have a second surgery on his airway for him to be able to breathe and eat effectively long term. This surgery will require general anesthesia (again) and drilling down certain parts of his airway/skull. Since his breathing has been unstable, they’re working to decide the optimal time for this second procedure. 

For today, we are most thankful that he is getting some calories in his tiny body to help him keep fighting.