So what does a trach mean for Josiah and our family. First, it means we can get the breathing tube out of his mouth and and the feeding tube out of his nose and all the tape off of his face. It will be the first time we've ever seen his beautiful face completely That will be absolutely wonderful. Second, it is not permanent. We will be able to remove it once he is able to breath on his own for sure. Most likely, 1-2 years. After the trach is inserted Josiah will be hooked up to the ventilator just like he is now but it will be attached to the trach in his neck. This is a lot more stable and so it will allow Josiah to be more active and we will not have the constant fear of him pulling the tube out of his mouth. We will spend the rest of the time we are here trying to wean him on the vent as much as possible. My goal is to be able to take him home where he can be off the ventilator during his awake hours and hooked up to the ventilator while he sleeps. One of the biggest benefits of the trach is how much more stable it is. That means we can begin working on normal baby stuff with him and try to get him caught up developmentally. He'll be able to get out of bed and work on head control and sitting. He'll have his whole mouth free so we can work more on oral stimulation so that one day he may be able to eat by mouth. It will allow us eventually to get him out of this room where he can experience more things and allow his brain to be stimulated more. Ultimately, the best part is that we could take him home where he can experience the love of his sisters and his mom and dad.

The downsides are that it is a ton of work. Josiah and our family will be more limited than we would be if we were bringing him home without a trach. He will require constant care and monitoring. We will most likely have home nursing care for portions of the day. Out goes the privacy of home. We could very easily be going to bed at night while a nurse is taking care of our son across the hall. I guess I'll have to invest in some pajamas! We will be bringing home a very sick and very fragile baby. That is so scary when you also have two pre-schoolers you are taking care of. Life will look a lot different when we get home. We are going to be forced to be a much different family than we were 5 months ago when we left Greer. I think that is the scariest thought. Just not knowing what that will look like, the stress that will cause and how it will feel to live such a different life. Oh, I have so much more to say about all that but it is hard to express.

I have to quit and go home. More to come.

- A heart that holds on