New normal...

Hey there Bubba,

Well it appears that our plan to keep up with writing notes every day has been less than successful. The good news about that however, is that you are doing better and there is so much less news on a daily basis that we really just don't have too much to report to your friends and fans. Instead we have decided it might be best to just wait a day or two and then once we have a few days worth of stories to tell on you we can share them with everyone else.

So the last few days have been full of information and learning. They have also been full of getting used to a lot of new things, and not all of those things are happy or comforting. Sometimes these new things sneak their way in disguised as good things but then after they are here they show their true colors and we realize that while they may be good they are also going to be challenging and a bit terrifying.

We have told you about all the things we have been learning the past few weeks as we get ready for you to venture out into other parts of the world but if you can believe it we have actually been learning even more each day. In the last couple of days we have become proficient at cleaning your g-tube and trach, cath'ing you, even suctioning out your secretions. Now we are learning to give your medications through your g-tube and get your feeding pump ready when its time to feed and cleaned up when its time to stop. Those things really aren't that big of a deal but just like with everything else we are learning they are going to take some practice before they become routine.

Today we had a first though. Your mommy changed your trach out for the first time today. Now the trach itself has been changed since you got it but this was the first time mommy and daddy have had anything to do with changing your trach and we were not overly excited to jump right into it. We are OF COURSE more than happy to learn and always ready to do so in a hands on manner when it comes to you but this was one that had been built up so much that it was more than a little intimidating. Since it was time for you to get a trach we have heard how important it is to learn how to take one out and quickly get the new one in without a hiccup. We have been told that we will have to practice and practice and practice so that we will be able to get it right. We were warned that it may not be the easiest thing to do since you have such a tiny little neck right now and your chin and cheeks are so puffy. Ppppssssshhhhh. Mommy's got this.

Daddy helped by holding onto your tubes while mommy just took charge and grabbed your old trach, pulled it out and quickly popped your new one in. She did it in the blink of even the smallest eye and before you knew what was going on we were in good shape. Apparently this is going to become such a routine thing for us going forward that we won't even think of it as an event, just as Tuesday. Who knew something so foreign could seem so normal?

Now we are getting ourselves geared up for a permanent field trip. The doctors have been talking for the last two weeks about getting you moved out of the CICU and down into the transitional care center (TCC) where we will learn even more about your trach and whether or not you will need a vent. They are also going to teach us how to hold you and play with you and even get you some belly time. I know that sounds exciting and from what I hear it will be a pretty big deal for your development so mommy and I cannot wait to see how well you do with it.

But here was the sneaky part. All of those things sound really good but what we didn't think about was the fact that we are going to have to learn all new nurses and RT's and PT's and OT's and even the nice ladies that sign us in and out of your POD are going to be replaced by a counterpart in the TCC. I know those aren't necessarily bad things but they are kind of scary things. You aren't the only one who has had his hand held these last several months, your mommy and I have also been blessed with some of the most amazing people we could possibly imagine helping us through what has been such a trying time and the thought of not having those hands holding ours anymore is scary. But we know that is the next step to get you ready to go home, or at least to grandma and grandpa's house for a while, so we are ready to face whatever it is. I mean after all, it will only be a matter of time before that places feels pretty normal to us I'm sure.

Something else we are facing right now that I would have never EVER thought of as scary is the possibility of moving out of Ronald Mcdonald next door. We aren't sure that we will have to but there is a chance that once you leave the CICU mommy and daddy won't be eligible to stay there any longer and will have to go stay with grandma and grandpa at night. Sure, that sounds like a good thing right? We will have our own bed, a kitchen we can use whenever we want, television that has more than a handful of channels, and couches to sit on when we just want to relax. But we won't be very close to you at night and that is a pretty terrifying thing.

If we look at the other side of that coin we will find that perhaps this is just a step to get us ready for what will eventually become our new "normal". To quote a football commentator that mommy enjoyed listening to during the Super Bowl the other day, "we are coming very close to realizing our dream". Very soon we could get the chance to get you out of this hospital and into a home for the first time. That means we need to figure out where you will sleep, what kind of medical equipment we will need to help you, what kind of schedule we will need to be on to make sure you have all the help you need, and a million other things that we haven't even begun to think of yet. So sometime this coming weekend we are going to have to make a trip up to grandma and grandpa's house so that we can start getting some of these things together and set up our new normal.

So don't be scared of all the changes that are coming buddy, whatever they are just remember that no matter how different they may seem at first they are just steps to get us to the place we eventually want to be... in our own home, on our own couch, watching our own tv, cuddling with our very own little man. We may not get back to "normal" life but we will have our own version of normal and it is going to be pretty awesome if it involves the three of us together at home.

Get some rest little man, sleep tight and keep on working. I promise mommy and I will be working as well, trying to get everything ready for you so when you tell us its time we will be ready to take you home. We are so very very proud of you Connor.

We love you Connor.

- Daddy