The Plan

So this morning we met with Dr. Messner from ENT to talk about the tracheostomy. We had a list of questions to ask her about it and she was able to answer just about all of them. We still really don't want to do it but we know that it is what she needs for now. We are still waiting on a date for when they will do it but it will possibly be sometime next week.They have already ordered and received a trach that should hopefully fit her considering she has such a short trachea. Caydence will also be getting a g-tube so she doesn't have to have a tube hanging out of her nose all the time. Now her face will be completely free and you can really see how beautiful she is. As much as I hate for Caydence to go through all of this and knowing how this is going to change our lives, I am starting to realize that this will be good for her. She won't be stuck in that hospital bed all the time lying on her back not being able to move anymore. We will be able to get her up and starting to be a normal baby and to catch up on all that she was missing out on these last 4 1/2 months. I can't believe it has really been that long. Crazy! That's the only word that I can say to explain what this whole experience has been for us. We have just been on this crazy rollercoaster that seems to never end. Even though Caydence will be getting the tracheostomy and this rollercoaster probably wont really end until it comes out, I am actually starting to see a little bit of light at the end of the tunnel (meaning hopefully this will get us out of the hospital and home soon.) Basically this is all we are waiting for. She still has her omphalocele but that really isn't an issue and we are just going to wait until she is about 1 or so to repair that. After getting the trach put in and she recovers from that, all we have to do is wait and just hope that we can get home nursing. As long as we can get nursing for her at home we can go. That's my only worry. We've talked to a home heath agency and they just said that it is going to be difficult but hopefully with recruiting they can find us some nurses to take on the job. If we can't get home nursing, we have to go to another facility called CRC. We've heard such great things about that place but it's not where we want to go. That only means that it is longer that we aren't home. All we want is to bring Caydence home and start to be a real family and move on with our lives. We know that even with nursing at home it is going to be extremely difficult but we are ready for the challenge.