Connor,
Hey there buddy boy. So we haven't been able to write you any notes the last few days because our connection to the internet hasn't been working very well. I know that is no excuse but it is the reason for the lack of writing lately. Next time we have a plan though, the notes may not be posted but they will be written and just added when we can get back on the internet. But enough of that, there has been a lot going on lately so its time to catch you up.
Your Gigi has been here since last Friday and she has been with you almost non-stop since she set foot in Kentucky and crossed the river to your hospital room. She has found a whole new side of you that we didn't even know existed yet. Apparently you like to be picked up and bounced around and cuddled and just held all the time. We knew that from time to time you enjoyed snuggling up in mommy or daddy's arms but we had no idea just how much you liked being up out of that bed of yours. But Gigi used her magic to figure out how you like to be played with and how to keep you calm when you get up and around so that she can play with you. Mommy and I are going to try and replicate this magic but forgive us if it takes a few attempts, we are kinda behind Gigi in baby experience after all.
In the days since your last note you have been busy working too, not just playing with Gigi. You got the doctors to turn your feeds back on and you are back up to five milliliters an hour. Now that is a long way from your goal of twenty-two an hour but I bet it has to feel good to have some food back in your belly. You seem to like it and it seems to be doing its job because you are growing again. I think mommy said your last weight was over four kilograms, that means you are getting closer and closer to nine pounds. That may still sound like a small number but considering where you started and what all you have been through I think getting you up to nine pounds will be a huge accomplishment. But then I guess that will just be another notch on your wall of achievements, one more milestone knocked down and out of the way.
You have also been doing so well with your breathing that they are weaning your high-flow down every few hours and you are back down to two liters per minute. The next step will be one liter per minute, then one-half, then, assuming you are still kicking butt, they will take the oxygen off completely sometime tomorrow. This would mean a lot of big steps. Aesthetically speaking you will, for the FIRST TIME IN YOUR LIFE, have no tubes on your face, no tape on your face, no tagaderm on your face, nothing bothering your adorable little face any more. However important we all may think that step is I have to tell you that it is going to be an even more important step forward to have you breathing all on your own. There will be no more assistance from any machines and no more oxygen flowing in your nose and bothering you while you sleep. That is one of the biggest hurdles to get over before getting you out of this hospital room and back home with mommy and daddy. So of course you are acting like its nothing and just flying right past it. That's how you roll.
So if your feeding and your breathing are almost under control now that means there is only more more thing we need to work really really hard on to get out of here. The doctors are going to have to start slowly (VERY VERY SLOWLY) weaning down your sedation medication. They tried this a little while back and it didn't go so well but hopefully we learned a thing or two from that last attempt and we can do a little bit better this time. So today they started weaning you down a little bit (it was Catherine's idea, but it was such as mall amount that I'm not sure they can really call it weaning...) and tomorrow we will move a little bit more and then the next day a little bit more and hopefully, after a few days, we will be able to get you off those medicines completely and we can really start talking about things like moving to the step down unit and maybe getting out of the hospital. One step at a time though, so lets not get too far ahead of ourselves today.
In the world outside of this room another big thing came and went, New Year's Eve. The year 2012, your birth year, wrapped up and the whole world welcomed in the start of 2013. As the world waits and watches together people all over join in an old tradition and make resolutions. These are kind of like goals, except they are supposed to be even stronger than goals because they are tied to the start of the new year and the beginning of something new. Now most people come up with some generic New Year's Resolutions like "this year I am going to drop 15 pounds" or "this year I will learn to play the guitar" but mommy and I have be learning that we can't think the same way we used to before you came along so our resolutions were a little different.
This year we will take you home. This year we will make sure and pick you up and hold you at least once every day (that will become significantly easier once we get past that other resolution). This year we are going to thank God for every day we have with you. This year we are going to make sure that as soon as we get out of here we give back to Children's Hospital and the Ronald McDonald house because we wouldn't be this far without all of those wonderful people. This year we are going to take LOTS of pictures. This year we are going to take naps, all three of us, together. The list goes on, and even though not all of these resolutions are in our control we have every intention of following through on all of them.
Right now you and Gigi are saying your goodbyes and giving hugs and kisses and Gigi is leaking some of her love for you. Remember what I told you about the tears you see when the people you love are holding you, they are just the love we feel in our hearts finding a way out. And Gigi has a lot of that love so you may see a lot of it leaking out as she tells you bye tonight. Don't you worry though, she will be back, and next time with your Grandad Rooster too, and you will be able to play again.
So how about you close your eyes and take a nap and think of some resolutions of your own. Don't be scared to dream big son, you have already proven that you can do big things and I think the older you get and the bigger you get the more you will be able to do. But for now you are in need of some sleep so close your eyes and rest, dream of Gigi's hugs and mommy's kisses.
Mommy and Daddy love you Connor.
- Daddy
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