It's 1:45am on October 31rst. I'm wide awake thinking about so much. Today is my baby boys first Halloween. The NICU nurses dressed him up as a cute little turtle :)

He got put on his first room air trial (no extra oxygen) on October 29th at 9pm. We expected him to do well until it came to feeding time. The doctors anticipated he be perfectly fine without it through the day. No drop in Oxygen saturation, no heavy breathing. They were right. He's done perfect!! But they waited to see if he would be able to finish his bottles without oxygen.... During the day, he did okay. Slowly decreased how much he would take 57, 50, 49, 40. With 50 being the minimum he can take without being considered for another feeding tube. Getting sleepy earlier and earlier during eating. Before his room air, he had been taking full bottles, or at least getting to his minimum before going to sleep or getting too distracted by other things to finish. He finished a whole 2 ounces in 10 minutes one time! But, as the room air trial goes on, I worry he's gonna be set back....

They figured this would happen. They just needed to prove it before insurance would cover him to go home on oxygen. I just got told tonight he no longer has a minimum he has to take. At this moment, because he's not dropping any stats insurance needs more proof he needs oxygen to go home. So, they're going on a theory called weight maintenance based oxygen. He's basically working so hard to breathe and eat he's wearing out and losing weight because he isn't eating enough to keep his weight. He can't go home with a feeding tube because he has no medical reasons he has to have one. So, oxygen it is. They're unsure how long they're gonna watch him to make their decision. I was told it can be 2-5 days, depending on the doctor he has that day. I know they can't do anything until he loses weight. The nurse said it has to be a decent amount of weight loss for insurance to consider him for "weight maintenance based oxygen". Either way, I feel my son will be coming home on oxygen. They're not saying if, they're saying when. Like they're not expecting him to pass because he gets tired when eating without it. Which I understand.. but it's heartbreaking. To have him breathing so perfect every other time but to have to be on 24/7 cannula just because he needs it to eat.. I'm thankful that's the only issue though. Some mom's have it worse or aren't as close as we are to home. And to you moms I say, I'm sorry I'm bitching about something so small.. but after 3 months and seeing how well he does without it until it comes to feeding, it's a little discouraging. Not because he'll come home on oxygen. But because this may set him back. He took feedings from a bottle perfect for 2 days. Now, room air trial, he's not. I asked the nurse if they'd put him back on oxygen before they'd do another feeding tube? She said it depends on the doctor. So depending who is there and if they decide they're gonna make the call, he may just get another feeding tube until he can eat proper amount rather than go back on oxygen!! I'm so scared and frustrated. They've been able to tell me everything with certainty until now. The End. Or close to the end, when I want certainty the most!