3 weeks in the hospital, seriously?

Yesterday was a tough day for our family. After finding out in the morning that they were planning to take Olivia's breathing tube out I made arrangements to be at the hospital the better part of the afternoon. Once before, when Olivia was in NICU, they had to intubate her after surgery. Finally, the day we hoped for--the day the wanted to take it out came. That day 2 hours after they took out the tube they had to replace it--she just wasn't going to do it on her own yet. (Actually, we got a call at 3am that next morning saying she took the tube out herself--something that happens relatively often in NICU and that she was doing great without it so they didn't replace it.) Unfortunately, it went about the same yesterday. Though I was prepared for Olivia to be re-intubated and emotionally ready to handle the situation I was sad to see it happen.

This is how it went: As soon as I got to the hospital they were talking about going ahead to pull the tube. They had been weaning her sedatives so she was going to be awake enough to do some work on her own. She had been breathing on a CPAP setting on the ventilator that shows them her lungs are ready to at least be on a CPAP mask if not her regular little cannula, or no oxygen at all. Right after they pulled the tube she looked great--breathing great without any help. Here is where the problem lies: not only the lungs have to be ready, but the throat. Her little throat was so sore from having the tube down it for so long that it restricted with inflammation after they took it out. Livi's lungs are ready to breath on their own, but her throat was too irritated to move the air down to the lungs well. Now she is on steroids so that when they are ready to try again, her throat should stay nice and open for her. It is protocol to wait at least 48 hours before trying again--its such a taxing thing for her. At the earliest they will try again tomorrow, though I imagine they might wait longer to make sure she is ready this time. She is doing well so far and her settings on the ventilator are still low.

We know she will get off the ventilator sometime relatively soon, we know she will come home to us after a while, but fatigue is setting in. We miss her more every day. Please continue praying for our family. We have great support and could not make it through this without so many people who love our family, but we miss our girl horribly. We are praying for comfort and peace for Livi all the time-- something we cannot even give to her, but the kind the Lord provides. It becomes more apparent everyday how little we can help her or even put her at ease. We are trying to rely solely on God (not family or friends or each other or the doctors) to provide the things that Olivia needs or the things we desire for her--not only when she is in the hospital, but all the time. Lord, help us.