In higher spirits!

Tom and I were pretty down in the dumps last week after talking to one of the surgeons. She was just not the most positive person in the world. They all have their ways of telling us stuff, but she was just not very supportive I guess. To quote my friend Sarah (whose O baby Aidan is now 3!) - "Try not to listen to that one doctor. Unfortunately, too many are unaware of the reality, that more and more O babies are surviving, that it is not a death sentence. It's really frustrating that some doctors are still so in the dark about it. But the truth is that parents like us need to advocate, and prove that our children are survivors. So just hang in there, and keep on teaching them that!"

But Fiona is doing good today (and has been for the past few days). They weaned her pressure support from 12 to 10. They also increased her feeds to 1.5 cc/hr. She hasn't pooped in about 4 days so we are really hoping for some poop soon, haha! We're still not sure what time our meeting is tomorrow. The ENT (ears, nose, and throat) doctors are supposed to be there too. Even though she has been doing better the past few days everyone is still pretty sure she is going to need a trach. And I guess they are thinking maybe as early as some time this week. They gave me some info on getting her first round of immunizations since she is coming up on 2 months already! But her nurse today said they want to hold off on them until they at least know what is going on with the trach because if she did have some kind of reaction they would need to know whether it was from one of the shots or from her surgery. We did find out that after she gets the trach she won't be able to be out of bed for 5 days :( They won't even be able to weigh her during that time. But the good news is that after those 5 days she will be able to be much wigglier (haha) than she already is. She will be able to move her head around more. And also the Occupational Therapists will be able to start working with her. Hopefully it will get us on the right track to getting home! I will post sometime tomorrow after our meeting.