Wow... here's a crazy update

Remember yesterday's post when I said it would most likely be weeks before Eden's trach procedure? Well here's a bombshell - it's happening tomorrow afternoon. Wow... ready or not here we come!

The ENT specialist who will be doing the procedure is currently the only pediatric ENT in the state so we were given a heads-up that she may not be able to squeeze us into the schedule for a while. It took us about a week just to get her over here to meet with me about the trach so I thought for sure we would have a couple weeks.

So she came yesterday to discuss the procedure and answer questions and then we started discussing the schedule. She said, "We could possibly fit her in on Wednesday if I can get a second OR room." It completely took my breath away and I said, "You mean this Wednesday? As in the day after tomorrow?" Yup, that's what she meant.

So needless to say I've had quite the anxiety bubble inside of me since yesterday afternoon and feel as though I may burst at any moment. The good news is that this is the path we feel is right so we might as well get a move on!

So once the plan was in place for her to get the trach Wednesday, the neonatalogist decided that we would try one last extubation today just to make sure. Well, Eden decided she didn't want to wait until today and took the liberty to take her tube out herself last night. They got her stabilized and then put her on the CPAP but again, the problems were immediate and she was not able to sustain her oxygen for very long at all. This is what I was expecting to happen, but I knew I would always wonder if getting the trach was the right thing if we hadn't tried at least one more time. So now we know for sure that the trach is what she needs in order to progress. So here we go!

Today has been a busy day for me with meetings and visits from all kinds of doctors and specialized nurses. The last meeting today was with the trach nurse that will be helping us through the process. I know I'm going to need her a ton so I am glad to know that she seems like a great person to work with.

We have also been receiving a lot of information about developmental programs and home care nursing programs, and many other very useful resources that we will need once we are home and adjusting to life with a "medically fragile" child. This is going to be interesting. I knew life as a stay at home mom was going to be busy, but I think this is going to get a whole lot more complicated!

Also on the schedule for today was to give Eden a bath so that she is nice and clean and ready for her big day tomorrow. Besides, with the recovery after the procedure I'm not really sure when I'll be able to give her a good bath anyway. I enjoyed that and always love the clean baby smell!

So for all of you reading this today, please remember us, and especially Eden and the doctor performing the procedure, in your prayers tonight and tomorrow.

So to finish up the post, here's some general info:

Eden is now getting 63 ccs of milk every three hours via the feeding tube. They have decreased the amount of extra calories they are adding to the milk too because she was putting on weight so quickly. She is now 8 lbs 1 oz!

An explosion of pink... right down to the bracelet! :o)


We can't wait to be able to see her whole face without all the tape (even though it will be a while before her cheeks can heal).