They say this experience is a roller coaster ride. I can handle the ups and downs but today I feel like we completely jumped the tracks. Brody is back on the ventilator after trying to take him off 4 times in the last week. His throat is so swollen that they could barely get a tube intended for a 1 pound baby down it. He is doing great back on the vent but he has been through so much. The plan now is to sit and wait. We are waiting for him to get bigger and outgrow the edema in his throat. They won't even think of trying to get him off the vent again for 3-4 WEEKS. While I was having a breakdown from that news Cameron stopped breathing twice and had to be bagged as he wasn't coming back. Both boys now have OD tubes instead of their normal feeding tubes. They will bypass the stomach and feed them into their duodenums to attempt to minimize their reflux.

Every time I feel like we can finally exhale for the moment all of this comes back ten fold. I feel silly for having started to prepare for their homecoming. I'm scared of what will be in 3-4 weeks when they finally try to take Brody off again. Every time they have a bad episode I'm afraid they won't wake up. I try to be optimistic every day but today I am terrified.