Connor,
Since you arrived here on this planet just over a month ago you have begun to touch people on a global scale. If you were an airborne virus people would be referring to you as an epidemic, if you were a youtube video you would have quickly been deemed "viral", and if you were a television show you would probably be lining up for awards in the very near future. But you are none of those things, you are a little boy with a big heart and a will that even your name can't even begin to describe in terms of its strength.
Every day that passes brings another "oooohhhhh wow! look how good he is doing" from some unsuspecting nurse or doctor who hasn't seen you in a while. Today you got a visit from one of your fans, a woman who used to help clean your room when you were over in the other POD. She stopped in to talk to daddy about her upcoming trip to Africa and all the shots she has to get to be ready for it and she poked her head in your blankets for a little peak. "WOW, look at all that hair on such a tiny little man!" was the reaction I heard from across the room. Another fan for life I bet.
This morning I want to tell you about one person in particular who has been seeing you more and more lately. His name, as I know it, it Dr. Ileus. It has been partially explained to me that his name is not actually Dr. Ileus but rather something much longer with a few extra syllables in it. I haven't heard that first hand so for now I am going to just continue down my path of blissful ignorance and call him by his short name.
Dr. Ileus is from Greece, and he has a little bit of a funny accent that would almost suggest that he is from somewhere in southern Spain as well. He speaks very clearly though, and makes sure to make his point every time he opens his mouth. Your mommy and daddy respect him a great deal for that because we know how hard it can be to finish a sentence here in the hospital when someone with a bigger voice starts talking. But Dr. Ileus always does and he always makes really good points.
Even more to his credit though, he listens as well as he speaks. He is happy to let mommy and daddy ask all the questions we want and even point out a few things that we have noticed about you or your numbers when we talk to him. He is kind of like Dr. Nelson in that respect because he makes sure we have all of our questions answered before he walks away and if he doesn't have the answer he makes sure to find it one way or another. If I am remembering correctly, the other day one of the nurses brought up a point to him that your mommy raised and as it turned out it really helped and actually made for an order change during rounds. They say it takes a village to raise a child, well this village may be mostly sterile and covered in loose fitting clothing called "scrubs" but its a village none the less.
In the last six weeks Dr. Ileus has been a big big part of your stay. He was here the first night when you gave daddy and Pappaw and Gigi a heart attack and he has been here many many times since. He was the attending here at rounds all of last week and was even here over the weekend to help out. And on Saturday he was part of one of those moments that daddy will never in his life forget.
It was just you and I sitting here in the room Saturday morning, mommy was finishing her milkshake duties, when Dr. Ileus quietly slid the door open and stepped in. He walked over to you and uncovered you slightly, just like he always does, looked over you with the scrutiny of a trained eye scanning for problems, and then backed away and crossed his arms. He stood looking at you for a brief moment, the type of moment that has lasted a lifetime since you were born, the moment when the doctor decides what he has to say about you.
The look that came over his face was at first puzzling to me, it was clearly a good sign, but the emotion or thought behind it was untraceable by lines on his face. Little did I know it, but that was probably the same look that I have had a few hundred times over the last five plus weeks as I stood over your crib and looked down on your sleeping face. The look was one of amazement. After that brief moment passed Dr. Ileus quickly regained his composure, smiled ever so slightly, looked over at me with a big thumbs up and said "This one, he is a winner".
Dr. Ileus may be from Greece but in that moment he was seeing and speaking a language that transcends culture. The emotion he was conveying was one of happiness. The tone one of joy. The words didn't matter, they were merely a secondary way of expressing what his posture and his eyes had already said as clear as crystal. He was both proud of you and impressed by you, you are a winner against odds that seemed insurmountable.
Keep on winning son, every day.
I love you Connor.
- Daddy
Monday, November 5, 2012
Sunday, November 4, 2012
Double Snuggles
Good evening little guy,
This was by far the best weekend we've had in a while. In fact it has been the best I can remember since you've been alive. Yesterday you were awake and happy more than you have been all week and for the first time since surgery we were allowed to hold you. Mommy got to hold you not once but twice in one day (which has never happened). Poor daddy didn't get so lucky yesterday and only had you for a few minutes before you made an impressive mess in your pants for which you insisted on being changed but made up for it today with a long happy snuggle. Today you were out of bed and snuggled up twice for about an hour each time, once with mommy and once with daddy. You sure do seem happy to be in mommy and daddy's arms and out of that bed. Hang in there little man. We are working hard to make sure you get more and more snuggle time.
Not only were you awake during some snuggle time today but you were awake for the better part of the day. As thrilled as mommy and daddy were to see you awake and happy I think there may have been two people happier than us. Grandpa and Pappaw were both here today and very excited to have awake play time with you. At one point you had Grandpa's hand on one side and Pappaw's hand on the other. You seemed to really enjoy it as you looked around, moved your little arms and legs and listened to all the exciting stories they both had to tell you. Grandpa brought you a special present today. This is kind of a big deal because as you will learn your Grandpa isn't much of a shopper (that may be the understatement of the year). But for you he went to the store and picked out a special car that talks and makes noise but is still soft so you can keep it in your bed. As you grow up I imagine you will spend countless hours playing cars with Grandpa and someday help him work on the real cars. If you haven't caught on cars is kind of your Grandpa's thing.
I have to admit that as much as I enjoy watching your little face interact with your daddy, Grandpa and Pappaw I enjoy watching their reaction to you just as much. Your daddy was so worried that if we had a little girl that she would have him wrapped around her finger. We won't tell daddy but I'm pretty sure you've already done the same thing. Mommy loves to watch daddy's eyes light up when you look at him and get that little smirk on your face. She also loves when you make daddy laugh by stinking up the whole room or making funny faces. It is amazing to watch the love he has for you pour out. Your Pappaw and Grandpa are the same way. They are both pretty loving guys already but to watch the level of love that you bring to their lives is pretty amazing. I love to see them smile when they talk about you and brag about you to the nurses. They are all so involved in your progress and care that it makes mommy proud of all the men in her life.
Well son that's enough mushy stuff for now. We'll get back to watching some football as you fall asleep all wrapped like a burrito. Great work on today little buddy. Mommy is so proud of how long you were awake, happy, playing, snuggling, and even laying on your right side without any sleepy juice or major fits. I hope you sleep well and dream of playing with cars and snuggling.
I love you Connor,
Mommy
Saturday, November 3, 2012
Football...
Connor,
So your mommy wrote you an awfully sweet note last night that kind of caught everyone up on how you are doing and where you are headed. You have been making some serious progress lately and you are looking more and more like the little boy that we got to know before you went in for your big heart surgery. There was a brief period last night when you even sat, wide-eyed and happy, for a while and let mommy play with your curly hair.
Then mommy went to make you a milkshake and daddy got a turn to play with you and you decided it was time to flip out and go through your best impersonation of a tomato trying to make itself explode. Thanks buddy. But we did get you changed and cleaned up and calmed down and you went to sleep pretty early so that mommy and daddy could go try to get some sleep too. And sleep we kind of did. I only say kind of because I had lots and lots of dreams about you coming home and daddy trying to figure out what goes where and when to do what and I wasn't very good at it in my dreams. I will be better when get to game time though, I promise.
Now today I want to talk to you about something VERY VERY important. This is probably going to be a major part of your life as you grow up and maybe even once you are a grown up yourself so you better pay attention. Today we are going to talk a little bit about football. That is your daddy's favorite sport and it has been, among other things, a lifeline that your mommy and daddy have clung to the last five weeks here in the hospital (by the way happy five week birthday son).
You see Connor, football has been the one and only constant for your mommy and I over the last five weeks. Every single other piece of our lives has been flipped upside down or turned backwards or taken away from us entirely. That isn't to say that we don't still have a lot of the same things we had six weeks ago, like great friends and loving family and each other, but all of those things have been taken and shaken up. Our schedules are inside out, we only get to see our friends and family at certain times and almost always here at the hospital, and even the time mommy and daddy spend together (and not talking about hospital related stuff) is pretty limited.
So that leaves us this ritual of sorts, something that your mommy and I have had in common since we met each other many many years ago. That ritual is football. Saturdays and Sundays in the fall we devote a portion (some weekends its more than others) of our time to this game that represents happiness and frivolity for mommy and I. The outcome of the games doesn't actually affect our lives in anyway but the games themselves give us a window of time when we are free to get excited, or sad if you are a Bengals fan lately, and act like nothing in the world is wrong.
This ritual of football takes many forms and can sometimes run from sun up on Saturday to sun down on Sunday. Sometimes we sit quietly in your room and silently cheer for the small people running around on the blurry screen hanging over your sink. Sometimes we watch on our laptop or our phones as fantasy points (this is an explanation for another day, and another game that keeps our family together in a way) move up and down as our favorite players and teams do great things out on the field. Sometimes we are lucky enough to get to watch the games with our friends and/or family and cheer collectively when we see something great.
It is still a game though. One that has touched your daddy's life in a multitude of ways and will forever be one of my great loves. Now I have two that have leaped ahead of football on his list of loves, you and mommy of course, but it is still there and it still represents a happiness in life that can help to get me through some of the hardest times. And over these last 5 weeks it was these games that kept your mommy and daddy attached to the real world and things like days of the week or even months of the year. Those games on Saturdays and Sundays kept us grounded and gave us something we desperately needed, an attachment to normal life, the life we will all head back to when the doctors tell us you are good and ready.
So until that happens we will continue to watch those games and live our rituals (like the burnt orange shirt daddy has on right now or the bright green Irish shirt mommy has on) and share those with you as we begin our lives together. To help with this daddy went out and bought you something, I think its the first gift that your daddy has bought especially for you since you showed up 5 weeks ago today. This is my gift to you Connor, one that I hope will help you through life just like it has helped daddy all these years.
So your mommy wrote you an awfully sweet note last night that kind of caught everyone up on how you are doing and where you are headed. You have been making some serious progress lately and you are looking more and more like the little boy that we got to know before you went in for your big heart surgery. There was a brief period last night when you even sat, wide-eyed and happy, for a while and let mommy play with your curly hair.
Then mommy went to make you a milkshake and daddy got a turn to play with you and you decided it was time to flip out and go through your best impersonation of a tomato trying to make itself explode. Thanks buddy. But we did get you changed and cleaned up and calmed down and you went to sleep pretty early so that mommy and daddy could go try to get some sleep too. And sleep we kind of did. I only say kind of because I had lots and lots of dreams about you coming home and daddy trying to figure out what goes where and when to do what and I wasn't very good at it in my dreams. I will be better when get to game time though, I promise.
Now today I want to talk to you about something VERY VERY important. This is probably going to be a major part of your life as you grow up and maybe even once you are a grown up yourself so you better pay attention. Today we are going to talk a little bit about football. That is your daddy's favorite sport and it has been, among other things, a lifeline that your mommy and daddy have clung to the last five weeks here in the hospital (by the way happy five week birthday son).
You see Connor, football has been the one and only constant for your mommy and I over the last five weeks. Every single other piece of our lives has been flipped upside down or turned backwards or taken away from us entirely. That isn't to say that we don't still have a lot of the same things we had six weeks ago, like great friends and loving family and each other, but all of those things have been taken and shaken up. Our schedules are inside out, we only get to see our friends and family at certain times and almost always here at the hospital, and even the time mommy and daddy spend together (and not talking about hospital related stuff) is pretty limited.
So that leaves us this ritual of sorts, something that your mommy and I have had in common since we met each other many many years ago. That ritual is football. Saturdays and Sundays in the fall we devote a portion (some weekends its more than others) of our time to this game that represents happiness and frivolity for mommy and I. The outcome of the games doesn't actually affect our lives in anyway but the games themselves give us a window of time when we are free to get excited, or sad if you are a Bengals fan lately, and act like nothing in the world is wrong.
This ritual of football takes many forms and can sometimes run from sun up on Saturday to sun down on Sunday. Sometimes we sit quietly in your room and silently cheer for the small people running around on the blurry screen hanging over your sink. Sometimes we watch on our laptop or our phones as fantasy points (this is an explanation for another day, and another game that keeps our family together in a way) move up and down as our favorite players and teams do great things out on the field. Sometimes we are lucky enough to get to watch the games with our friends and/or family and cheer collectively when we see something great.
It is still a game though. One that has touched your daddy's life in a multitude of ways and will forever be one of my great loves. Now I have two that have leaped ahead of football on his list of loves, you and mommy of course, but it is still there and it still represents a happiness in life that can help to get me through some of the hardest times. And over these last 5 weeks it was these games that kept your mommy and daddy attached to the real world and things like days of the week or even months of the year. Those games on Saturdays and Sundays kept us grounded and gave us something we desperately needed, an attachment to normal life, the life we will all head back to when the doctors tell us you are good and ready.
So until that happens we will continue to watch those games and live our rituals (like the burnt orange shirt daddy has on right now or the bright green Irish shirt mommy has on) and share those with you as we begin our lives together. To help with this daddy went out and bought you something, I think its the first gift that your daddy has bought especially for you since you showed up 5 weeks ago today. This is my gift to you Connor, one that I hope will help you through life just like it has helped daddy all these years.
Thank you for sharing this with me son.
I love you Connor.
- Daddy
Friday, November 2, 2012
Due date
Hello Connor,
Hard to imagine that today is finally your actual due date. I guess you're like your daddy and didn't want to be late but I think 5 weeks early may have been a little excessive. I can't imagine how big you would have been if you had 5 more weeks to grow in mommy's belly (and I'm not sure I want to think about what that would have meant for your delivery). I also can't imagine what life would have been like the past 5 weeks without you here. Just think how much you have taught daddy and I before you were even suppose to be here not to mention how much you have already accomplished. You're a pretty amazing little guy.
Today has been a good and productive day. You got the last of your three chest tubes out and as of now you're not getting anything in your IV. You're back to only eating milkshakes and not that other yucky stuff. Also you got rid of that big oxygen sensor from your forehead tonight. I know that had to be annoying. Plus they keep lowering the settings on your breathing machine to make your little lungs do more and more of the work. The next big step we have to conquer is getting that pesky breathing tube out. Dr. Morales wants it out yesterday but there has been a bit of disagreement as to if we have to wait for your nose surgery or not.
It seemed the ENT department had fallen off the face of the earth the past few days but with a few friendly calls from Dr. Morales and your cardiologists the ENT fellow showed up today. You are finally on the books for Tuesday to have your little nose fixed. The ENT said this procedure should be a "walk in the park" compared to what you've already been through so don't get too worried about this one little guy. Just think how nice it's going to be for you to be able to breath through both nostrils. Plus that means you'll be able to blow snot bubbles out both sides of your nose instead of just one!
It has been great to see you awake some today and actually pretty content most of the time. You have gotten a little upset here and there but not as angry as the few days before. We do however still need to talk about laying on your right side. I promise it is not the end of the world to face the right. Mommy and daddy won't let anyone sneak in your room without you seeing them coming. I promise laying on your right now is going to be a lot better than all the stretching we're going to have to do to undo your love of laying on the left side. All of the nurses and therapists can't believe how strong you are to undo their fancy positioning and barricades to try and keep you on your right. As the therapists say (and mommy agrees) we can fix tight muscles, it's not the end of the world. You know what you like and you're not giving in, that's for sure.
It's amazing how much you have changed mommy's life in the past five weeks. Although this experience has not been anything like mommy pictured having a baby would be she wouldn't change anything because she wouldn't have you. Connor, I love you with all of my heart and I am so thankful to call you my son.
I love you little man,
Mommy
Thursday, November 1, 2012
Feisty...
Connor,
How about you and I have a little talk about a few things, father to son. Don't worry, its not time to have any of the "important" talks about buzzing insects and flying feathered creatures or why it is important to know how to drive a manual transmission even though they don't really make them anymore. We aren't going to talk about anything like that. Rather, we are going to talk about a little thing that your daddy is learning more and more about each and every day, and that is patience.
You may hear this word thrown around a lot while you are here but before you settle into some arbitrary meaning that you derive on your own let me explain a few things. First and foremost the difference between "patients" and "patience". You are Ben's patient (well I guess today was the first day you were no longer Ben's patient, which brings to light a good point that I will discuss later) and you are Dr. Morales' patient and as I sit here typing on this keyboard in the dim light of your hospital room you are Krista's patient. She is your nurse. Doctors and nurses have lots of patients and if they are good doctors and nurses they also have lots of patience.
But not everyone has a lot of patience. This word actually refers to your ability to deal with stressful or tedious situations gracefully. I'm sure Webster has a better way of saying it but I really don't feel like looking that up and for the purposes of our little chat I think my definition will be just fine. You see Connor, when something you aren't necessarily thrilled with is happening you sometimes have to be patient (tricky language we speak and write isn't it? Spanish is way easier). Or, when you are waiting for something to happen, or someone to show up, you have to be patient while you wait for them.
This isn't something your daddy has ever been very good at but since you have come into the picture it is something I am learning more and more about all the time. I have not always been (and am still not great at being) patient with people when they do things that annoy me, or when they run late, or when they don't show up all together. I'm not naming any names here because that isn't the point and because I don't know the name of the ENT's who appear to be avoiding our room despite telling your doctors they are coming to visit you. But that is neither here nor there because we are talking about being patient right?
So the last two days I have been patiently waiting on the ENT's to show up and schedule your surgery for next week. Today I was within 50 feet of your room for approximately 15 hours, minus the time it took me to get mommy some dinner, and they didn't show up. So you know what I did? Not a thing. I sat here and played with you and read my book and asked politely every chance I had to see if anyone had an update. The nurses and the other doctors were great and they too were patient when they were responding to me.
So lets take a look at how this relates back to your life in the little crib across the room. You see, you have about as much patience as daddy has swimming medals. You aren't laughing now because you have never seen me in a pool but trust me, one day that will be funny. My point though, is to say that we need to work on your patience a little. When we are trying to change your bed, you got a new one today by the way, you should give us a good thirty seconds before you go into all out rage. When we are trying to suction out your little mouth and do a little mouth care you should let us finish before you decide you want to turn the suction on our eyeballs. And when we try to put you on your right side because the doctors and nurses and therapists and mommy and daddy all KNOW that you need to spend some time on that side you should give it at least a good five minute trial before you go into your newly found "I am going to freak out and turn my head purple and run my heart rate up and flail like I am being subjected to excessive rectal temp checks" mode. I mean seriously son, we had you on your right side for all of three seconds and your body turned into something from Willy Wonka's factory.
So how about we make a deal. Daddy will keep working on controlling his temper when it comes to things that bother him and you will work on having just a little patience with those of us around you who want to try and help you get better. Sound like a plan?
Now, quick recap of today. You slept for a while. Then mommy came over for a bit but had to go home with a bit of a tummy ache. You slept some more. Then daddy got locked out of your POD while rounds were going on so I didn't get to meet the doctor taking over for Ben (told you I'd get back to it). Meanwhile you slept. Then daddy finished his book while you slept. Then daddy took some dinner over to mommy and you slept while Grandma was here. Then we got you a new bed and some new sheets and decided to get you cozy. Then you lost your (bleep bleep bleep) and we spent two and a half hours trying to calm you down. Thanks for that one.
All in all it was a good day though. You have been healing up and your numbers have been great and your tubes and lines and medicines continue to disappear. The doctors are thrilled with how well you are doing and you are even getting regular visits from your physical and occupational therapists like mommy said. In every way possible you are excelling, well except maybe the patience thing but we are working on that one together. So I have to tell you again just how proud I am of you for all your hard work and all your strength. Its inspirational to everyone around you.
Now that you seem to have calmed down and are no longer flipping out I think I am going to wrap up here and go try to get some sleep. Its been another one of those long but short time warp hospital days for your daddy and I quite ready for it to be over. Before I go though, I want to put up a picture of you from today. I snapped this one for Pappaw and Gigi when you woke up briefly for a diaper change. Apparently you weren't thrilled because you looked ready to fight.
How about you and I have a little talk about a few things, father to son. Don't worry, its not time to have any of the "important" talks about buzzing insects and flying feathered creatures or why it is important to know how to drive a manual transmission even though they don't really make them anymore. We aren't going to talk about anything like that. Rather, we are going to talk about a little thing that your daddy is learning more and more about each and every day, and that is patience.
You may hear this word thrown around a lot while you are here but before you settle into some arbitrary meaning that you derive on your own let me explain a few things. First and foremost the difference between "patients" and "patience". You are Ben's patient (well I guess today was the first day you were no longer Ben's patient, which brings to light a good point that I will discuss later) and you are Dr. Morales' patient and as I sit here typing on this keyboard in the dim light of your hospital room you are Krista's patient. She is your nurse. Doctors and nurses have lots of patients and if they are good doctors and nurses they also have lots of patience.
But not everyone has a lot of patience. This word actually refers to your ability to deal with stressful or tedious situations gracefully. I'm sure Webster has a better way of saying it but I really don't feel like looking that up and for the purposes of our little chat I think my definition will be just fine. You see Connor, when something you aren't necessarily thrilled with is happening you sometimes have to be patient (tricky language we speak and write isn't it? Spanish is way easier). Or, when you are waiting for something to happen, or someone to show up, you have to be patient while you wait for them.
This isn't something your daddy has ever been very good at but since you have come into the picture it is something I am learning more and more about all the time. I have not always been (and am still not great at being) patient with people when they do things that annoy me, or when they run late, or when they don't show up all together. I'm not naming any names here because that isn't the point and because I don't know the name of the ENT's who appear to be avoiding our room despite telling your doctors they are coming to visit you. But that is neither here nor there because we are talking about being patient right?
So the last two days I have been patiently waiting on the ENT's to show up and schedule your surgery for next week. Today I was within 50 feet of your room for approximately 15 hours, minus the time it took me to get mommy some dinner, and they didn't show up. So you know what I did? Not a thing. I sat here and played with you and read my book and asked politely every chance I had to see if anyone had an update. The nurses and the other doctors were great and they too were patient when they were responding to me.
So lets take a look at how this relates back to your life in the little crib across the room. You see, you have about as much patience as daddy has swimming medals. You aren't laughing now because you have never seen me in a pool but trust me, one day that will be funny. My point though, is to say that we need to work on your patience a little. When we are trying to change your bed, you got a new one today by the way, you should give us a good thirty seconds before you go into all out rage. When we are trying to suction out your little mouth and do a little mouth care you should let us finish before you decide you want to turn the suction on our eyeballs. And when we try to put you on your right side because the doctors and nurses and therapists and mommy and daddy all KNOW that you need to spend some time on that side you should give it at least a good five minute trial before you go into your newly found "I am going to freak out and turn my head purple and run my heart rate up and flail like I am being subjected to excessive rectal temp checks" mode. I mean seriously son, we had you on your right side for all of three seconds and your body turned into something from Willy Wonka's factory.
So how about we make a deal. Daddy will keep working on controlling his temper when it comes to things that bother him and you will work on having just a little patience with those of us around you who want to try and help you get better. Sound like a plan?
Now, quick recap of today. You slept for a while. Then mommy came over for a bit but had to go home with a bit of a tummy ache. You slept some more. Then daddy got locked out of your POD while rounds were going on so I didn't get to meet the doctor taking over for Ben (told you I'd get back to it). Meanwhile you slept. Then daddy finished his book while you slept. Then daddy took some dinner over to mommy and you slept while Grandma was here. Then we got you a new bed and some new sheets and decided to get you cozy. Then you lost your (bleep bleep bleep) and we spent two and a half hours trying to calm you down. Thanks for that one.
All in all it was a good day though. You have been healing up and your numbers have been great and your tubes and lines and medicines continue to disappear. The doctors are thrilled with how well you are doing and you are even getting regular visits from your physical and occupational therapists like mommy said. In every way possible you are excelling, well except maybe the patience thing but we are working on that one together. So I have to tell you again just how proud I am of you for all your hard work and all your strength. Its inspirational to everyone around you.
Now that you seem to have calmed down and are no longer flipping out I think I am going to wrap up here and go try to get some sleep. Its been another one of those long but short time warp hospital days for your daddy and I quite ready for it to be over. Before I go though, I want to put up a picture of you from today. I snapped this one for Pappaw and Gigi when you woke up briefly for a diaper change. Apparently you weren't thrilled because you looked ready to fight.
The caption I sent with this one was "fisticuffs?" because you looked like an old Irish man with his dukes up. Feisty I tell ya, feisty.
Get some rest son, sweet dreams.
I love you Connor.
- Daddy
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