Hey Bubba,
That's the new name I have taken to calling you lately, you seem to respond to it well and there is a nostalgic quality there for me as well. I used to call your uncle Sebastian that when I was little. Not because that was his name but because I wanted so badly to call him brother and despite my best efforts the word that came out over and over again was "bubba". It stuck with him a while, just like I'm sure it will stick with you a while. It is one of those names that, in the case of children, just says "love" in a way all its own. You're my Bubba, I love you, that's just how it is.
I am certain you have noticed a few things in the last several days. One, we haven't written you any notes lately. Two, the notes you have been getting aren't quite as cheerful as the ones from a few weeks ago. Three, you have been awfully upset lately. Four, mommy and daddy have been too. I'll catch you up with these things one at a time so we can keep them all straight, even though they are all basically the same problems just materializing in different ways.
One. We haven't written you because of some problem we are having with our computer and the internet service at Ronald McDonald. I am pretty sure it was something that I did wrong or updated when I shouldn't have but I cannot figure out what it is and are therefore without internet in the late evenings. Now mommy and I had a plan about that, we were going to make sure and either write your blogs in the morning or in the early evening, right before or after dinner. It sounded like a great idea. It should have worked beautifully. However, you had some other plans for those times of day. Most of the mornings you have made sure to greet mommy with some sort of fit or episode (we are back to the sitcom these days) and therefore tie up most of her morning. Then, somehow, the doctors and nurses and breathing treatments and therapy sessions seem to take up most of the middle of the day. So when either mommy or I settle in on the love seat in your room to write you a little note you decide that it would only be fitting if you both began the day with a fit and then ended it with one as well. And that, my little man, has kept us busy until late each of the last several nights, keeping us from getting anything written before heading to sleep for a few hours at Ronald McDonald.
Two. The notes haven't been nearly as cheerful lately because the steady stream of positive energy and signs of progress has screeched to a halt since last Wednesday. To be completely truthful here I have to tell you that not only are we not making any significant progress these days, most of your doctors seem to agree that you are declining daily. That is a pretty scary thing, I know. Try not to worry too much, the doctors are still doing everything they can to try and get you better even if they don't know what will work at this point. Every one of them that stops in makes sure to tell us that they are still working diligently to figure out what is going on. Even Dr. Nelson with his busy schedule took a good chunk of time out today to sit down with mommy and daddy and discuss what some of the next steps are. Looks like we have some more tests coming soon little man. Hopefully those will bring forth some new answers and some good news and we can get some of these notes back on track.
Three. The last week has seen some of your most epic fits. I feel like you have been battling on and off for the last week, struggling with something that we can't identify and you can't quite seem to beat. You keep waking up, from a complete sleep, gasping for air, fighting for every breath. The first time mommy and I saw this we thought maybe you were just upset and you had to go to the bathroom or something but it quickly became apparent to us that there was something more at work here. It has been taking us a long time to calm you down and you even had to go back on CPAP a few times to help get your lungs working and your airways open. It seems like no matter how much sedation you have on board or how strong the breathing support is you can't seem to fight off whatever this unseen enemy is that keeps attacking your breathing. Today was especially bad, you woke up fighting, after a long night of restlessness and battles, and even though you were sedated and had your CPAP mask on you couldn't quite catch your breath. You turned blue quickly and mommy and the nurses and respiratory therapists had to act fast to get you to come back to them. From what I understand today was the closest call you have had since the first day you showed up here at Children's, and that isn't a good thing at all.
Four. This past week has been very hard on you, but it has been pretty hard on mommy and daddy as well. There are two things that seem to wear on us the most. The first is that we hate to see you in pain and it hurts us every time we do. But the thing that hurts us even more than seeing you in pain is knowing that we are completely helpless to do anything about it. We try to hold you and rock you and calm you down. We try to pat your chest and rub your head and tell you it will be okay. We try to sing to you and talk to you and play with your mobile. But nothing works. Nothing helps. Nothing fixes the problem. Nothing seems to make you feel any better. That is our pain, that is why we are upset. We want nothing more in the world than to make it better yet there is nothing we can do but watch and hope that the doctors and nurses can help you. The other thing we keep facing this week that hurts us is the future. Mommy and I keep hearing things like "tracheotomy" that terrify us. We don't know what the future holds for you and like any parents we want yours to be bright and full of wonderful things, but lately the light has seemed to dim down and the wonderful things have become less possible. This week we have had a hard time feeling helpless when it comes to the moment we are in, and even more helpless when it comes to the days that lie ahead of us, and in particular you.
So I know I didn't give you a ton of detail today but I don't think there is much more to say that will be any more helpful. The next week will bring with it a myriad of tests and procedures, each having the ability to lighten the burden we currently bear, or hand us yet another weight to carry. We will hopefully find answers this week, be they good or bad, that will help us to start moving forward. These tests will shed some light on the path we are headed down, now lets just hope that the light leads us down a happier path than the one we have been on recently.
So sleep now Bubba. Dream of that crazy tiger and his zebra buddy (on your mobile) and the games they play while they dance over your head. Get rested up and get ready for the next round of fights and tests because tomorrow we start again. Know that your mommy and I are so proud of you, and that we are in awe of your strength.
We love you Connor, with all of our hearts.
- Daddy
Wednesday, January 9, 2013
Sunday, January 6, 2013
ZZZZ....
Hey there Sleepy Head,
I'm guessing after last night's note you have a pretty good idea what the doctors wanted you to do all of last night and all of today. Yep, that's right, they wanted you to sleep. So after your fits last night Dr. Ilias got you all fixed up with plenty of medicine and plenty of breathing support so you could get some much needed rest. Your lungs have been doing well today, your secretions have been less than usual, and your heart rate has been doing pretty well too. But of course all of those good numbers and good signs come with a cost, and today that cost has been extra doses of your sleepy medicine. Lots of extra doses.
I think because you are keeping this respiratory issue of yours a secret for now the doctors have made the decision that it would be better for you to be sleeping and resting than awake and potentially throwing a fit. Every time you get upset lately your color gets bad, your lungs start to work too hard, and your heart rate jumps and won't come back down. Mommy and I had gotten to the point of not freaking out every time you had a little fit but the events of the last few days have brought us right back to where we were two months ago. We see you start to get a little fidgety or upset and we rush over to your bed and do everything we can to calm you down before you start to work too hard.
Even though mommy and I are doing our best to help keep you calm (mommy has been doing way more work at this than I have, you have put her through a pretty rough week little man) we can't seem to be here all the time and stop all the fits. So because of that the doctors just keep upping your medicine more and more in the hopes that you will eventually just level out and rest. If we get to that point (maybe we are close today?) then we can start weaning back off of your medicines and your breathing support again and see if we can figure out what is going on and why we can't seem to get over this hurdle. That is the plan for now anyway.
This week should be an interesting week for you. Dr. Morales really wants you to have some fancy scan done this week that will watch you breathe and hopefully see something we can point to and fix. Your ENT friends want you to have another MRI, this time to take a good look at your ears and see if they can determine what all is going on with them and how they can help. You are supposed to have a follow up audiology test but I think maybe that one has been pushed back. And then, of course, we are going to start weaning you off your breathing support and your medicines again. Oh, and we can't forget your milkshakes. They will make a comeback too I'm sure.
Maybe that doesn't sound like a lot compared to some of your weeks since you have been here, but as you know these weeks where we try to wean you off of things are never easy. And one test always leads to another test. So for now how about you just keep on keeping on and sleep your little day away. You deserve it, and odds are you are going to need it. But know that mommy and I are here, and we love you, and we are SO proud of you and your strength. You continue to inspire and amaze us every day.
We love you Connor,
- Daddy
I'm guessing after last night's note you have a pretty good idea what the doctors wanted you to do all of last night and all of today. Yep, that's right, they wanted you to sleep. So after your fits last night Dr. Ilias got you all fixed up with plenty of medicine and plenty of breathing support so you could get some much needed rest. Your lungs have been doing well today, your secretions have been less than usual, and your heart rate has been doing pretty well too. But of course all of those good numbers and good signs come with a cost, and today that cost has been extra doses of your sleepy medicine. Lots of extra doses.
I think because you are keeping this respiratory issue of yours a secret for now the doctors have made the decision that it would be better for you to be sleeping and resting than awake and potentially throwing a fit. Every time you get upset lately your color gets bad, your lungs start to work too hard, and your heart rate jumps and won't come back down. Mommy and I had gotten to the point of not freaking out every time you had a little fit but the events of the last few days have brought us right back to where we were two months ago. We see you start to get a little fidgety or upset and we rush over to your bed and do everything we can to calm you down before you start to work too hard.
Even though mommy and I are doing our best to help keep you calm (mommy has been doing way more work at this than I have, you have put her through a pretty rough week little man) we can't seem to be here all the time and stop all the fits. So because of that the doctors just keep upping your medicine more and more in the hopes that you will eventually just level out and rest. If we get to that point (maybe we are close today?) then we can start weaning back off of your medicines and your breathing support again and see if we can figure out what is going on and why we can't seem to get over this hurdle. That is the plan for now anyway.
This week should be an interesting week for you. Dr. Morales really wants you to have some fancy scan done this week that will watch you breathe and hopefully see something we can point to and fix. Your ENT friends want you to have another MRI, this time to take a good look at your ears and see if they can determine what all is going on with them and how they can help. You are supposed to have a follow up audiology test but I think maybe that one has been pushed back. And then, of course, we are going to start weaning you off your breathing support and your medicines again. Oh, and we can't forget your milkshakes. They will make a comeback too I'm sure.
Maybe that doesn't sound like a lot compared to some of your weeks since you have been here, but as you know these weeks where we try to wean you off of things are never easy. And one test always leads to another test. So for now how about you just keep on keeping on and sleep your little day away. You deserve it, and odds are you are going to need it. But know that mommy and I are here, and we love you, and we are SO proud of you and your strength. You continue to inspire and amaze us every day.
We love you Connor,
- Daddy
Saturday, January 5, 2013
We love you!
Hi Connor,
Mommy and daddy don't have much to say tonight. It has been one of your longest and hardest days yet. You have worked extra hard to breath all day and tonight it got especially rough. Luckily Dr. Ilias is here and knows you so well that he knew despite your numbers being ok you were far from ok. He put you back on CPAP and gave you some extra medicine to help you relax. You are finally resting for the first time today. Mommy and daddy just wanted to say how very much we love you. We are so proud of how hard you continue to fight especially on these extra tough days. You have won over the hearts of so many people that work here, that when you have a hard day your room is flooded by people wanting to help out. You are the most amazing little person I have ever met and I am so thankful you came into my life. You are my life little man. I am praying extra hard that you have a peaceful night and your body is able to recover from all the hard work you put in today.
Mommy and daddy love you Connor.
-Mommy
Mommy and daddy don't have much to say tonight. It has been one of your longest and hardest days yet. You have worked extra hard to breath all day and tonight it got especially rough. Luckily Dr. Ilias is here and knows you so well that he knew despite your numbers being ok you were far from ok. He put you back on CPAP and gave you some extra medicine to help you relax. You are finally resting for the first time today. Mommy and daddy just wanted to say how very much we love you. We are so proud of how hard you continue to fight especially on these extra tough days. You have won over the hearts of so many people that work here, that when you have a hard day your room is flooded by people wanting to help out. You are the most amazing little person I have ever met and I am so thankful you came into my life. You are my life little man. I am praying extra hard that you have a peaceful night and your body is able to recover from all the hard work you put in today.
Mommy and daddy love you Connor.
-Mommy
Friday, January 4, 2013
Back again...
Good Morning Connor,
Its been a rough thirty-six hours for you big boy. You almost made it through Gigi's visit with nothing but good days and better days, almost. But just as soon as daddy finished writing your note the other night you started to fuss a little bit. I put away the laptop, put on my jacket, started to kiss you good night when all of a sudden you were upset in a big way. Luckily for us Gigi had found your new pacifiers and that calmed you down pretty quickly. We all could breathe easy again. Then Gigi walked over to kiss you goodbye and you started to fuss again. This went on for about half an hour until you finally let loose and went into a full fit. That's really when the trouble started.
You had one of your favorite nurses that night and thankfully she was able to stay calm and think clearly because after almost an hour of you going back and forth between a calm and happy sleeping baby and a full blown "hot mess" (as mommy likes to say) mommy, daddy, and Gigi couldn't think straight. We started to get worried about you because you didn't look good, your color was off and your breathing seemed awfully labored. It was at that point that your labored breathing and fussing started causing your oxygen levels to drop, and drop quick. You didn't go into a crash or anything but you dropped to the sixties and seventies and no matter what we did with your sensor the numbers weren't coming up.
That is when your nurse's level head saved the day. We were all trying to calm you, assuming that you would look worse or turn blue if your oxygen was really that low. Your color wasn't good but it wasn't that bad either. Lather, rinse, repeat, we have done this a thousand times. But your nurse knew something was wrong, something was different. She ordered a blood gas for you and when the numbers came back people started moving fast. You may not remember this, but your aunt Alisa once told your daddy that in a hospital you don't ever have to worry until people start to move fast. Crap.
Turns out your CO2 levels were the highest they have ever been and your other numbers (most of those I don't understand completely) were way off as well. As soon as mommy heard them she was worried too, but the nurses and the respiratory therapists were already in action. The doctors had been called. Now it was time start panicking. Even Gigi's face, which I have seen stay calm in some of the most intense situations, started to show some concern. Not again, not now. Mommy and I were worried that breathing tube was going back in.
Dr. Ilias was on the case though, he got your high flow pushed back up and your oxygen turned to one hundred percent. He ordered some more medicine for you and he promised mommy and daddy that he would do everything he could to keep you from moving too far backwards. Too far, we were holding on to that idea because it was clear you were going backwards, again. So we held on, with your Gigi right there with us, and hoped that Dr. Ilias could keep you on your high flow. It was a really tense forty-five minutes or so until you finally settled in and your breathing slowed down.
During that time the doctors took an x-ray of your lungs, they just wanted to make sure that you didn't have anything in there. The good news was that you didn't have anything in there. The bad news was that you almost completely collapsed your left lung, again. So the respiratory therapists went to work on you and started doing your chest percussion therapy and suctioning to see if they could get your lung to open back up without us having to put the tube back in and bronch you again. Thankfully you have some great nurses and doctors and respiratory therapists because they got your lung back and finally, after about three hours, you were calm and sleeping. Granted it was with the assistance of some serious drugs but serious times call for serious measures.
That was just Wednesday night. Maybe when I have caught up on some sleep and have a little more energy I will fill you in on yesterday but for now you are stable again. You are back on super-high high-flow and you are no longer getting any milkshakes but you are stable. So sleep and rest and maybe we can make another run at the mountain next week.
Mommy and Daddy love you Connor.
- Daddy
Its been a rough thirty-six hours for you big boy. You almost made it through Gigi's visit with nothing but good days and better days, almost. But just as soon as daddy finished writing your note the other night you started to fuss a little bit. I put away the laptop, put on my jacket, started to kiss you good night when all of a sudden you were upset in a big way. Luckily for us Gigi had found your new pacifiers and that calmed you down pretty quickly. We all could breathe easy again. Then Gigi walked over to kiss you goodbye and you started to fuss again. This went on for about half an hour until you finally let loose and went into a full fit. That's really when the trouble started.
You had one of your favorite nurses that night and thankfully she was able to stay calm and think clearly because after almost an hour of you going back and forth between a calm and happy sleeping baby and a full blown "hot mess" (as mommy likes to say) mommy, daddy, and Gigi couldn't think straight. We started to get worried about you because you didn't look good, your color was off and your breathing seemed awfully labored. It was at that point that your labored breathing and fussing started causing your oxygen levels to drop, and drop quick. You didn't go into a crash or anything but you dropped to the sixties and seventies and no matter what we did with your sensor the numbers weren't coming up.
That is when your nurse's level head saved the day. We were all trying to calm you, assuming that you would look worse or turn blue if your oxygen was really that low. Your color wasn't good but it wasn't that bad either. Lather, rinse, repeat, we have done this a thousand times. But your nurse knew something was wrong, something was different. She ordered a blood gas for you and when the numbers came back people started moving fast. You may not remember this, but your aunt Alisa once told your daddy that in a hospital you don't ever have to worry until people start to move fast. Crap.
Turns out your CO2 levels were the highest they have ever been and your other numbers (most of those I don't understand completely) were way off as well. As soon as mommy heard them she was worried too, but the nurses and the respiratory therapists were already in action. The doctors had been called. Now it was time start panicking. Even Gigi's face, which I have seen stay calm in some of the most intense situations, started to show some concern. Not again, not now. Mommy and I were worried that breathing tube was going back in.
Dr. Ilias was on the case though, he got your high flow pushed back up and your oxygen turned to one hundred percent. He ordered some more medicine for you and he promised mommy and daddy that he would do everything he could to keep you from moving too far backwards. Too far, we were holding on to that idea because it was clear you were going backwards, again. So we held on, with your Gigi right there with us, and hoped that Dr. Ilias could keep you on your high flow. It was a really tense forty-five minutes or so until you finally settled in and your breathing slowed down.
During that time the doctors took an x-ray of your lungs, they just wanted to make sure that you didn't have anything in there. The good news was that you didn't have anything in there. The bad news was that you almost completely collapsed your left lung, again. So the respiratory therapists went to work on you and started doing your chest percussion therapy and suctioning to see if they could get your lung to open back up without us having to put the tube back in and bronch you again. Thankfully you have some great nurses and doctors and respiratory therapists because they got your lung back and finally, after about three hours, you were calm and sleeping. Granted it was with the assistance of some serious drugs but serious times call for serious measures.
That was just Wednesday night. Maybe when I have caught up on some sleep and have a little more energy I will fill you in on yesterday but for now you are stable again. You are back on super-high high-flow and you are no longer getting any milkshakes but you are stable. So sleep and rest and maybe we can make another run at the mountain next week.
Mommy and Daddy love you Connor.
- Daddy
Wednesday, January 2, 2013
New Year's Resolutions...
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
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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