November 19

Well today was a tough day. They always told us that she would call the shots and she sure has! We arrived this morning to find her off her oxygen and feeding tube out. We were so excited. She statted so well for us while we were there and fed her at 10:00 this morning. When we arrived back for the 1:00 feeding, the oxygen was back on. Now they can send us home on oxygen so this was not that big of a deal...just one more cord will have to work around for a while. She ate really well all day taking more than 60cc at most of her feedings! Tonight however was another hurdle we didn't quite make it over. They have to do a test with them sitting in her car seat for the amount of time that it takes to get home without dropping any of her vitals. She sat in her car seat for about a total of 10 minutes and her oxygen plummeted. We were so disappointed to hear this but the nurses reassured us that this too will not keep us here. Instead she may have to go home in a car bed which is just a car seat that lays flat. We are actually thinking this may be easier anyways with her on oxygen as the nasal cannula is hard to keep on her head! The bad thing is that hopefully the hospital has one we can use or else we are going go have to find one. We should know more in the morning after the doctor is in. Hoping to be in step down in the next few days as she is still eating like a champ and gaining weight. These little hurdles with the oxygen and car seat are not going to hold us back! We are so ready to be home but so going to miss all the wonderful people we have met over here!