Sorry to all who've wanted updates--to say we are exhausted doesn't even begin to cover it.

They moved Isaac over to the Child Breathing Program on Wednesday night. Jaska and I have been trading off staying at the hospital each night since. I'll stay during the day, and then one of us will stay the night.

The new floor of the hospital that he is on is very different from the NICU. For one, Isaac has his own room--nothing fancy, it's just a hospital room, but it's still a room. Also, no one knows Isaac and his quirks and disposition, so Jaska and I really have to take the lead in his care. I have to make sure the nurses do things a certain way, at certain times, etc. I tell them how much he eats, etc. This is really great--but also really exhausting--having to be aware like that all the time, making sure they are doing what is best for Isaac. We are also in "training" to bring him home--so we have to prove that we can care for him on our own--give him his meds, feed him around the clock, handle his O2, etc. Add to that the fact that Isaac has had a really tough time transitioning to his new home and we are so beyond spent.

Having to do the toughest/most exhausting part at the end is just torturous. Our energy levels are already at zero. The last 2-3 weeks have been without a doubt the darkest and most difficult of my life. We are trying desperately to hang on to our sanity and keep our family together. We weren't prepared for all of this--we thought he would be going home from the NICU. It's a necessary step for Isaac, but one we weren't prepared for.

Isaac has had trouble with reflux which has been acting up since his move. He refused to eat for three days--which was my favorite thing ever. Being there while he screamed and screamed for three days, knowing that for every minute he cried was expending valuable energy and basically ensuring an extended stay in the hospital sent me spiraling down into despair. We are trying desperately to get him home, but it just feels like things are stacking up against us. I have tried to remain positive throughout the last four months--for lots of reasons, but I admit it's mostly for my own sanity. This week however, I ran out of energy to fight my despair. I've been a total zombie. Every scrap of energy I have had, has gone to Isaac and Jonah--and to repeatedly trying to pull myself together to keep from losing it.

Today was the first bright day in a couple of weeks. Nothing about Isaac's status changed, but I was finally able to muster enough spiritual energy to see my blessings and be grateful for what I have been given and to just enjoy the time I had with my boys.

The plan for Isaac was originally to send him home at the end of this week. He passed (barely) both of his stress tests that measure how he does without O2. The plan was that if he passed, he would be taken off the O2 for 3 days. If he continued to grow, he could go home.

Because he just barely passed his stress tests and because he has been losing weight--his discharge has been pushed back a bit.

Isaac finally started eating well today, so I'm hoping things in that department are on the up. If he gains over the next day or two the MD will probably take him off the O2 and see how he does. The MD would rather send him home on the O2. We're fine with that, but since he is so close to not needing it, we want to give him a fighting chance to come off of it before he comes home. She seems pretty flexible, so I'm sure we can come up with a good plan for Isaac.

I am aware that Isaac could come home next week, but I've grown a bit cynical. I'm in this, "I'll believe it when I see it" mode. It's just too hard to hope for it and plan for it, only to have it changed again and again. I'm just going to stop thinking about it and try to get through today.