Connor,
Well hello there little guy, don't worry I won't be too loud since you are finally sleeping some today. It has been one of those rather "active" days for you from what I understand and this may be the first time since last night that you are quiet and calm for any extended period of time. I don't want to jinx it but lets knock on wood just in case eh? No sense in getting you worked up, and the phrase "don't wake a sleeping baby" has never appeared to be more true than the last few days.
So for those reasons this may be a short one tonight. You are tired from a long day and mommy and daddy are tired from a long week and all three of us could use a short day and a long long night (of sleep). Today you started the day off with a little bit of a fit that mommy happened to walk right into. This was one of your trademark "wake the bleep up guys" moves and it worked like a charm. Mommy was wide awake and stressed before her first cup of coffee for the day. I wasn't here this morning but I could tell it had been a long one by the text I got from mommy about mid morning.
You calmed down for a bit after that thankfully. But then the doctors decided it was time for a field trip. The field trip was down to the radiology lab where a handful of technicians, one doctor, and a GIANT machine put a tube down your throat, through your stomach, and into your upper intestine. That sounds really terrible but all things considered this was a walk in the park compared to a lot of what you have had to go through. Come to find out this type of tube is called a OJ whereas the one you have always had before is an NG. Daddy isn't savvy enough in the medical world to know what the two mean other than this new one skips your stomach so we can get you some milkshakes again.
So we got back from your field trip and got you all settled and then you decided to make daddy's heart stop when you turned blue for a second and all but quit breathing. Thankfully Megan (surgery Megan) just happened to be walking in to say hi to us and helped me get you up and suctioned and back to the normal shade of pink we like. It didn't last long but it shook me up again. I know you like to have your fun, and I'm sure there is a good part of you that really enjoys getting to pull the strings every once and a while, but can we limit the assault on mommy and daddy's mental state to one a day? Please? I'll give you candy I swear....
But since then you have been tired and sleeping beautifully. You have one of your favorite nurses tonight and she is super excited to see you again so that makes mommy and daddy happy and it makes it way easier for us to go get some sleep too. Which is exactly what we are going to try and do now. I know its early, we are getting old you know. At this rate we are actually aging at double speed I think (thanks to you of course). But anyway, I'm starting to ramble, so good night little man, sweet dreams and sleep tight.
Mommy and daddy love you Connor.
- Daddy
Friday, November 30, 2012
Thursday, November 29, 2012
Regrouping
Hello there little guy,
Today has been a sleepy day for you due to an extra dose of sleepy juice to help you calm down from a fit first thing this morning. Since you slept most of the day it gave mommy a lot of quiet time to think (sometimes that's a dangerous thing). But mommy wasn't the only one thinking today. The doctors have been putting their heads together to decide what the next move for you will be. Unfortunately you had to go back on the high flow oxygen last night which means no milkshakes for a while. I'm very sorry about that buddy. The doctors have warned mommy and daddy many times to expect two steps forward one step back but sometimes it seems like the other way around but I'm sure I don't have to tell you that.
Last night Dr. Morales came by and talked to mommy and daddy for a while. It's almost as if he could sense mommy's frustration and knew just when to appear to ease my mind. He said your little heart is doing great but we have some other issues to sort out that are causing some problems. He described it as a game of chess. There are several things that need to be done but it's a matter of timing the moves right. He's a pretty smart guy and appears to be ultimately calling the shots for your path. First on that path is to do nothing. You heard me right. Despite what some of the other doctors think about necessary procedures and tests he wants to try and give your little body some time to rebound from this most recent setback and not add anything else to your plate.
Mommy and Daddy like the idea of holding off on some of the tests and procedures but to be honest we don't feel like this has exactly been a break for you. You have been fighting everyday to find a balance with all the new changes you've experience this past week. Between changing the way you've had to breath and dealing with all the medicines they've thrown at you the past two days you are an amazing little trooper. We are so proud of you and wish everyday that we could make this easier on you. I may have told you this before but you are much stronger than mommy has ever been.
While the doctors are regrouping and putting their heads together to make the best plan for you, mommy and daddy did a little of regrouping of our own. Mommy and daddy have felt a little lost this past week or so. We watch how hard you are fighting and see the wonderful gains you have made but our hearts are crushed when we see the setbacks you face. We had a little talk with God and asked him to give us patience and strength (so we can keep up with you). Both mommy and daddy know that God is leading the doctors as well as protecting you but sometimes parents can't help but worry about their baby. So we will follow your example and hold on tight like we have been doing the past two months. HAPPY TWO MONTH BIRTHDAY CONNOR!!!! Mommy and daddy love you more everyday and we thank you so much for the little awake time you mustered up tonight to spend with us. You are more than precious.
Sweet dreams baby boy. Mommy and daddy love you.
-Mommy
Today has been a sleepy day for you due to an extra dose of sleepy juice to help you calm down from a fit first thing this morning. Since you slept most of the day it gave mommy a lot of quiet time to think (sometimes that's a dangerous thing). But mommy wasn't the only one thinking today. The doctors have been putting their heads together to decide what the next move for you will be. Unfortunately you had to go back on the high flow oxygen last night which means no milkshakes for a while. I'm very sorry about that buddy. The doctors have warned mommy and daddy many times to expect two steps forward one step back but sometimes it seems like the other way around but I'm sure I don't have to tell you that.
Last night Dr. Morales came by and talked to mommy and daddy for a while. It's almost as if he could sense mommy's frustration and knew just when to appear to ease my mind. He said your little heart is doing great but we have some other issues to sort out that are causing some problems. He described it as a game of chess. There are several things that need to be done but it's a matter of timing the moves right. He's a pretty smart guy and appears to be ultimately calling the shots for your path. First on that path is to do nothing. You heard me right. Despite what some of the other doctors think about necessary procedures and tests he wants to try and give your little body some time to rebound from this most recent setback and not add anything else to your plate.
Mommy and Daddy like the idea of holding off on some of the tests and procedures but to be honest we don't feel like this has exactly been a break for you. You have been fighting everyday to find a balance with all the new changes you've experience this past week. Between changing the way you've had to breath and dealing with all the medicines they've thrown at you the past two days you are an amazing little trooper. We are so proud of you and wish everyday that we could make this easier on you. I may have told you this before but you are much stronger than mommy has ever been.
While the doctors are regrouping and putting their heads together to make the best plan for you, mommy and daddy did a little of regrouping of our own. Mommy and daddy have felt a little lost this past week or so. We watch how hard you are fighting and see the wonderful gains you have made but our hearts are crushed when we see the setbacks you face. We had a little talk with God and asked him to give us patience and strength (so we can keep up with you). Both mommy and daddy know that God is leading the doctors as well as protecting you but sometimes parents can't help but worry about their baby. So we will follow your example and hold on tight like we have been doing the past two months. HAPPY TWO MONTH BIRTHDAY CONNOR!!!! Mommy and daddy love you more everyday and we thank you so much for the little awake time you mustered up tonight to spend with us. You are more than precious.
Sweet dreams baby boy. Mommy and daddy love you.
-Mommy
Wednesday, November 28, 2012
Never boring...
Hey there Buster,
Yes, it has happened again. I am forced to start one of these notes with the name "Buster" because you have been a little bit of a stinker again. I actually don't think its you being a stinker, I think its just you adjusting to the whole world changing around you but sometimes it sure does seem like you are being a stinker. Either way though, you threw daddy's heart into an irregular rhythm twice this afternoon, and once you might have managed to upset your nurse just a tad too so I think you qualify for "Buster" today.
Lets start with some of the more positive notes from the day thus far. First of all you are looking dashing as usual, but even more so with a smaller nasal cannula in your nose today. Not only is it smaller but it seems to be much less of an irritation for you than the other one you had as well. Now the reason you have the smaller one today is because you are no longer on your high flow respiratory support, which is AWESOME. I know, I know, I can't get too excited yet because we have to get through a few days before we can really call anything progress lately, but this is a pretty big step for you and mommy and daddy sure are proud.
The other good news tied to that smaller cannula is that you are back on milkshakes, FINALLY. I know its been a while but you seem to be pretty happy that they are putting a little bit of mommy's love in your belly today. They actually just upped the amount about five minutes ago and are hoping to have you back up to full go by the end of the day tomorrow if I heard correctly. That means you are going to start growing again and I know you are excited about that. And even if you aren't, I sure am and I'll make up for your lack of excitement. I can't wait for you to get a little bit bigger so we can use your bouncy seat and your clothes and your boppy (12 months ago I wouldn't have known that word) and all the other stuff you have waiting for you. Not to mention the bigger you get and the older you get the closer we get to holding you more and playing with you more and eventually taking you home.
And since you are going to start growing so much the staff here decided to make another change today as well, you got a new bed. Not just any old bed but a big bed, one with plenty of room for your wiggly shenanigans. This is kind of a big step because it means we can get closer to you and hold you more and we can hopefully get you rolling around in there before long. I know PT and OT are looking forward to getting you up and moving more which means mommy will be chomping at the bit to get you up and around. She did tell me earlier that your bed is so big that she just wanted to hop in there with you and cuddle so watch out, you may have a nap partner soon.
Do you recognize that blanket you are lying on? You may not but I know mommy will because it was one that she used when we first got here (she had to cover up when she was making your milkshakes and the nurses gave her that blanket to help). But that wasn't the blanket you had on your bed earlier today, it wasn't even the one that was on your bed when mommy went out with auntie Beth a little bit ago. No no, you had to get a new one after you decided to make a mess of your entire bed when the nurse tried to cath you earlier. I can't say I blame you, I would try to fight back too, but that was quite a mess little man, and I think your nurse might have been a little bit upset with you. Good news for you is that she thinks you are adorable (like pretty much every nurse in this place) so she didn't stay mad for long.
The other little bit of shenanigans you pulled earlier was associated with what I will call your mammoth booger. I was sitting down on the other side of the room reading an email when I looked up and saw you in full wiggle mode, arms and legs all over the place. I got up to check on you and you had somehow managed to get your oxygen monitor to stop reading and you were so upset you were turning purple. I did the usual and suctioned your mouth and tried to calm you down with patting and talking and every other trick in the repertoire but you weren't having it. You were P.O.'d as your Gigi used to say.
So after a miniature heart attack daddy got the nurse and told her you were freaking out and wouldn't calm down. Now of course she was in another room in the middle of something (thankfully it wasn't something important) and I had to drag her in to check on you. We had been back in the room for about two seconds when you sneezed and blew a booger the size of a marble out of your nose. Right past the cannula and out onto your lip. It was pretty gross but before we could even get it cleaned up you were back asleep and calm as can be. Here I want to note that since beginning this paragraph you have now done the same thing again. Thanks buddy, its better than coffee for waking me up.
But now that you are quiet again I am going to go try and slow down MY heart rate and breathe a little more. I hope you keep on sleeping and get back to that business of growing. Rest well little man, mommy and I are awfully proud of all the big steps you are taking and how well you are doing with your world changing all the time. Sweet dreams.
We love you Connor.
- Daddy
Yes, it has happened again. I am forced to start one of these notes with the name "Buster" because you have been a little bit of a stinker again. I actually don't think its you being a stinker, I think its just you adjusting to the whole world changing around you but sometimes it sure does seem like you are being a stinker. Either way though, you threw daddy's heart into an irregular rhythm twice this afternoon, and once you might have managed to upset your nurse just a tad too so I think you qualify for "Buster" today.
Lets start with some of the more positive notes from the day thus far. First of all you are looking dashing as usual, but even more so with a smaller nasal cannula in your nose today. Not only is it smaller but it seems to be much less of an irritation for you than the other one you had as well. Now the reason you have the smaller one today is because you are no longer on your high flow respiratory support, which is AWESOME. I know, I know, I can't get too excited yet because we have to get through a few days before we can really call anything progress lately, but this is a pretty big step for you and mommy and daddy sure are proud.
The other good news tied to that smaller cannula is that you are back on milkshakes, FINALLY. I know its been a while but you seem to be pretty happy that they are putting a little bit of mommy's love in your belly today. They actually just upped the amount about five minutes ago and are hoping to have you back up to full go by the end of the day tomorrow if I heard correctly. That means you are going to start growing again and I know you are excited about that. And even if you aren't, I sure am and I'll make up for your lack of excitement. I can't wait for you to get a little bit bigger so we can use your bouncy seat and your clothes and your boppy (12 months ago I wouldn't have known that word) and all the other stuff you have waiting for you. Not to mention the bigger you get and the older you get the closer we get to holding you more and playing with you more and eventually taking you home.
And since you are going to start growing so much the staff here decided to make another change today as well, you got a new bed. Not just any old bed but a big bed, one with plenty of room for your wiggly shenanigans. This is kind of a big step because it means we can get closer to you and hold you more and we can hopefully get you rolling around in there before long. I know PT and OT are looking forward to getting you up and moving more which means mommy will be chomping at the bit to get you up and around. She did tell me earlier that your bed is so big that she just wanted to hop in there with you and cuddle so watch out, you may have a nap partner soon.
The other little bit of shenanigans you pulled earlier was associated with what I will call your mammoth booger. I was sitting down on the other side of the room reading an email when I looked up and saw you in full wiggle mode, arms and legs all over the place. I got up to check on you and you had somehow managed to get your oxygen monitor to stop reading and you were so upset you were turning purple. I did the usual and suctioned your mouth and tried to calm you down with patting and talking and every other trick in the repertoire but you weren't having it. You were P.O.'d as your Gigi used to say.
So after a miniature heart attack daddy got the nurse and told her you were freaking out and wouldn't calm down. Now of course she was in another room in the middle of something (thankfully it wasn't something important) and I had to drag her in to check on you. We had been back in the room for about two seconds when you sneezed and blew a booger the size of a marble out of your nose. Right past the cannula and out onto your lip. It was pretty gross but before we could even get it cleaned up you were back asleep and calm as can be. Here I want to note that since beginning this paragraph you have now done the same thing again. Thanks buddy, its better than coffee for waking me up.
But now that you are quiet again I am going to go try and slow down MY heart rate and breathe a little more. I hope you keep on sleeping and get back to that business of growing. Rest well little man, mommy and I are awfully proud of all the big steps you are taking and how well you are doing with your world changing all the time. Sweet dreams.
We love you Connor.
- Daddy
Tuesday, November 27, 2012
Wakey Wakey...
Hey Connor,
Well well well... you sir have been quite a little rambunctious bundle of joy tonight. Daddy had to go out and run some more errands today so I wasn't there for a big chunk of the day but your mommy was and she was making sure to send me pictures of you with those big eyes of yours wide open. She said you were doing great and sleeping most of the day but occasionally, wakey wakey.
So the doctors have been really happy with you and your progress yet again. They wanted to keep on keeping on and take down your medicines and your breathing support. They are dropping your medicine again in an hour or two and then it will be gone completely. Now we may have to give you a little happy medicine every so often to keep you from flipping out but the good news is that once that medicine is gone you will be one more big step closer to getting out of here.
They doctors have also been really happy with the way your breathing numbers have been so guess what? Yep, they are dropping that down as well and by the time I get to see you tomorrow it will be low enough that we might be able to get you back on milkshakes. I know mommy has been working super hard to make you plenty of milkshakes so you are going to have quite a bit of eating to do. We really hope that they can get you off of that crazy air blowing up your nose completely but for now we will be happy with just having it turned down low enough that you can get some feeds again.
Now part of this weaning process is you feeling a little less sleepy and a little more awake and even though mommy got to see some of that this morning you really showed us what it could be like this evening. You woke up right after we had dinner and you went right into break dancing in your bed. Your eyes went wide open and you went to flailing all four limbs in every direction possible and along with that crazy flailing came some alarms and some tubes and wires flying around as well. You kept pulling on your nasal cannulas and your little hands kept on grabbing your leads and snapping them right off your chest.
This was around seven this evening. So when eight rolled around we thought you might start to get tired (because we were getting a little tired) but we were VERY wrong. However, we were happy to spend another hour keeping you happy and playing around with you. We got to pick you up a little bit and you were still wiggling everywhere. You were, as your mammaw would say, "like a greased pig" and we couldn't hold on to you for a second. It was actually pretty fun though. So then at nine mommy and I were getting pretty wiped out but not little Connor. Oh no, you were super crazy still. We tried to bundle you up and all that did was make you raging mad. That lasted until we unbundled you and then you were free and happy and all about the wiggles again.
Luckily just before ten o'clock daddy got your pacifier to calm you down and before you know it, ZONKED. You were out like a light. After about three hours of being wide awake you were wiped out and ready to sleep like a zombie (saying "sleep like a baby" seems a bit too trite in this situation). You sucked on your pacifier for all of two minutes and then you were nighty night. Mommy and I kissed you goodnight and snuck out while we could.
So now sleep buddy, sleep tight and dream of great dreams.
I love you Connor.
- Daddy
Well well well... you sir have been quite a little rambunctious bundle of joy tonight. Daddy had to go out and run some more errands today so I wasn't there for a big chunk of the day but your mommy was and she was making sure to send me pictures of you with those big eyes of yours wide open. She said you were doing great and sleeping most of the day but occasionally, wakey wakey.
So the doctors have been really happy with you and your progress yet again. They wanted to keep on keeping on and take down your medicines and your breathing support. They are dropping your medicine again in an hour or two and then it will be gone completely. Now we may have to give you a little happy medicine every so often to keep you from flipping out but the good news is that once that medicine is gone you will be one more big step closer to getting out of here.
They doctors have also been really happy with the way your breathing numbers have been so guess what? Yep, they are dropping that down as well and by the time I get to see you tomorrow it will be low enough that we might be able to get you back on milkshakes. I know mommy has been working super hard to make you plenty of milkshakes so you are going to have quite a bit of eating to do. We really hope that they can get you off of that crazy air blowing up your nose completely but for now we will be happy with just having it turned down low enough that you can get some feeds again.
Now part of this weaning process is you feeling a little less sleepy and a little more awake and even though mommy got to see some of that this morning you really showed us what it could be like this evening. You woke up right after we had dinner and you went right into break dancing in your bed. Your eyes went wide open and you went to flailing all four limbs in every direction possible and along with that crazy flailing came some alarms and some tubes and wires flying around as well. You kept pulling on your nasal cannulas and your little hands kept on grabbing your leads and snapping them right off your chest.
This was around seven this evening. So when eight rolled around we thought you might start to get tired (because we were getting a little tired) but we were VERY wrong. However, we were happy to spend another hour keeping you happy and playing around with you. We got to pick you up a little bit and you were still wiggling everywhere. You were, as your mammaw would say, "like a greased pig" and we couldn't hold on to you for a second. It was actually pretty fun though. So then at nine mommy and I were getting pretty wiped out but not little Connor. Oh no, you were super crazy still. We tried to bundle you up and all that did was make you raging mad. That lasted until we unbundled you and then you were free and happy and all about the wiggles again.
Luckily just before ten o'clock daddy got your pacifier to calm you down and before you know it, ZONKED. You were out like a light. After about three hours of being wide awake you were wiped out and ready to sleep like a zombie (saying "sleep like a baby" seems a bit too trite in this situation). You sucked on your pacifier for all of two minutes and then you were nighty night. Mommy and I kissed you goodnight and snuck out while we could.
So now sleep buddy, sleep tight and dream of great dreams.
I love you Connor.
- Daddy
Monday, November 26, 2012
Changing of the guard.....
Hi Connor,
The last few days we have been in a bit of a holding pattern. You haven't really had any "episodes" or setbacks but we've all been on the edge of our seats just in case. It has been somewhat frustrating for mommy and daddy because with the holiday the doctors have been in a bit of a different rotation. Normally mommy and daddy adjust to a new outlook and plan for you every Monday when the attending doctors switch. Mommy calls this the changing of the guard but the past few days we have switched back and forth between different plans and opinions several times in one weekend. Now please don't get the wrong idea, mommy and daddy really like all of your doctors and trust them completely. They are all working hard to do what's best for you but they each have a little different way of getting there. I guess that's what happen when you combine so many smart people.
That being said, today Dr. Cooper is back in the driver's seat for the week. He hasn't seen you in a little while and it was very encouraging for mommy to hear how much better he thinks you look. At rounds he told mommy that he talked with all the doctors from the weekend as well as Dr. Morales and they were all on board with progressing you forward. So instead of spending your day taking field trips for tests and procedures you got to relax in your room. The doctors agreed there is no reason to test more about the cause of your "episodes" while you are on the upswing and not having them. Mommy was thrilled to hear that because doing those tests would have meant putting that yucky tube back in your throat to do them.
So we switched gears from testing to progressing and away we went. They started turning your oxygen down slowly and took away one of your sleepy medicines. You were a little fussy today but you were also awake for a while and happy about it. Mommy and daddy both got to hold you and share some snuggle time. During mommy's snuggle time we played a little peek-a-boo. The expression on your face was priceless but I'm not sure you exactly understood the point. You seemed confused every time mommy's face disappeared and surprised every time it reappeared. Don't worry we will get a lot more practice with this one. I think all of our cuddling and playing made you pretty tired but you sure sleep well in mommy and daddy's arms.
Now you are sleeping and mommy and daddy are settling down for the night. Rest up so we can cuddle and play more tomorrow as we continue our week of progress. We love you very much little man.
-Mommy
The last few days we have been in a bit of a holding pattern. You haven't really had any "episodes" or setbacks but we've all been on the edge of our seats just in case. It has been somewhat frustrating for mommy and daddy because with the holiday the doctors have been in a bit of a different rotation. Normally mommy and daddy adjust to a new outlook and plan for you every Monday when the attending doctors switch. Mommy calls this the changing of the guard but the past few days we have switched back and forth between different plans and opinions several times in one weekend. Now please don't get the wrong idea, mommy and daddy really like all of your doctors and trust them completely. They are all working hard to do what's best for you but they each have a little different way of getting there. I guess that's what happen when you combine so many smart people.
That being said, today Dr. Cooper is back in the driver's seat for the week. He hasn't seen you in a little while and it was very encouraging for mommy to hear how much better he thinks you look. At rounds he told mommy that he talked with all the doctors from the weekend as well as Dr. Morales and they were all on board with progressing you forward. So instead of spending your day taking field trips for tests and procedures you got to relax in your room. The doctors agreed there is no reason to test more about the cause of your "episodes" while you are on the upswing and not having them. Mommy was thrilled to hear that because doing those tests would have meant putting that yucky tube back in your throat to do them.
So we switched gears from testing to progressing and away we went. They started turning your oxygen down slowly and took away one of your sleepy medicines. You were a little fussy today but you were also awake for a while and happy about it. Mommy and daddy both got to hold you and share some snuggle time. During mommy's snuggle time we played a little peek-a-boo. The expression on your face was priceless but I'm not sure you exactly understood the point. You seemed confused every time mommy's face disappeared and surprised every time it reappeared. Don't worry we will get a lot more practice with this one. I think all of our cuddling and playing made you pretty tired but you sure sleep well in mommy and daddy's arms.
Now you are sleeping and mommy and daddy are settling down for the night. Rest up so we can cuddle and play more tomorrow as we continue our week of progress. We love you very much little man.
-Mommy
Sunday, November 25, 2012
Fussy Wussy...
Connor,
Let us start with a poem I remember from when I was but a wee child...
Let us start with a poem I remember from when I was but a wee child...
Fuzzy Wuzzy was a bear,
Fuzzy Wuzzy had no hair,
Fuzzy Wuzzy wasn't very Fuzzy was he?
This particular poem doesn't relate to you or your day in any way at all other than I just kept thinking you were "fussy wussy" (no not like a wuss) all day long. But in your defense it has been a long couple days for you and you are probably still tired from your episodes and mini-episodes lately. Acting is a tough job, or so they say.
Now how about some good news? Well today you had your favorite person again and again she told you she wanted to eat your chin. To be quite honest I think she may have somehow developed an unnatural obsession with your chin because no matter what face you made or what you were doing she commented on "how cute your chin is". I mean I guess there is the other possibility, that you really are that cute, but lets not balloon up that ego any more than we need to after another day of girls drooling all over you.
Megan did go to bat for you again today though, making sure the doctors got their stuff straight and kept you moving down the road to nomoretubesville. You only gave her a little trouble today, but that is because your only real fit came when she was outside the POD eating lunch. Thanks for that one by the way. She and Dr. Ilias talked all day about you and they were both in your room checking on you non stop. I think they may be a little invested in you and your future but then again it could be the cute thing.
You also had quite a few other visitors today. Mommy and daddy's friend Amy came by the hospital today and brought a present for us from all of our friends. It is small, and cute, and purple, just like you lately. This one makes coffee instead of drool though, so its a bit more practical over in our room at Ronald McDonald. It will help make sure mommy and daddy can stay awake, especially in the mornings when it is so hard to get up and get moving. So we are SUPER appreciative to all of our friends for that present.
Amy did stay and visit with mommy and daddy for a long time today too. It was a great break for us since you had been kind of a stinker all morning with your fussy business. We talked about all kinds of things, but mostly you and your antics lately. You will get a chance to hang out with Amy and her little ones before too long we hope, I know they are anxious to play with you too.
Then, just a short while later, your aunt Alisa came by with some grub for mommy and daddy to chew on this week. She stayed and visited a long time too, and apparently she is going to have some free time coming up and she wanted to know if you are going to be available for some dates with her to help her fill some of that time. Hopefully your schedule will allow it because she is pretty excited to spend some time with you. She also told us that she can't wait to have some birthday cake with you next year on your shared birthday, hopefully you will like the same kind of cake.
You did get a bit of a field trip today, but it wasn't very far, just to mommy and daddy's arms in an attempt to keep you happy. We did succeed for the first time in taking a somewhat upset Connor and, with nothing more than the touch of our arms, calm you down and get you to rest a while. It wasn't a perfect setup just yet but it was pretty darn close and it was great to know that you still kind of like us. We would hate to think that the only thing calming you down these days is the medicine the nurses have to give when you throw a fit.
Sometime after that, between your fussy spells, your Grandma and uncle Scooter and auntie Beth showed up with a Thanksgiving feast. You see Grandma knew that we hadn't had the chance to have a Thanksgiving dinner so she made up a bunch of food and brought some of the Thanksgiving leftovers and the five of us shared our own little Thanksgiving dinner in the family room. It was super tasty and had some of everyone's favorites, even pecan pie.
When we were all stuffed with Thanksgiving goodness we came back to see you and you will never guess what we caught you doing... yep, that is right, you were fussing again. Now I can't think of a better word for what you did all day even though I have tried and tried and even pulled out the thesaurus. There is really no other way to describe it, you were just fussy. You didn't go into breakdown mode, you didn't get your heart rate up, you didn't start doing your crazy scary breaths, you didn't really do any of the things that normally point to you being upset except occasionally you would hold your breath and turn the same color as mommy and daddy's new coffee maker.
You did, however, cry, cry, cry, wiggle, cry, and cry some more. You would scrunch up your face, turn down your big bottom lip (you look JUST like your mommy when you do that) and make this kind of pathetic "waaaahhhhh" noise. Even though it was frustrating to us that we couldn't do a single thing to make you stop crying it was kind of relieving to see you doing something so normal for a baby your age. You were fighting sleep and being a stinker about it.
I know mommy and daddy looked kind of lost today when all that was going on but have no fear we learn quickly and will be better prepared next time. And we found a little bit of a secret weapon (which we will have EVERY intention of using for our own benefit later) in your uncle Scooter and auntie Beth. They seemed to be able to get you to calm down and what was even more remarkable they didn't even flinch when you were crying. That may not sound like a lot but for two people who don't have kids that is a pretty big deal. They must kind of like you or something. Or maybe its the cute thing again.
But finally you calmed down and everyone made their way home to bed, including mommy and daddy. We are going to get some rest and hopefully you will too because it sounds like it could be another busy week for you with appointments for tests and doctors' visits speckling your calendar. So sweet dreams fussy wussy, close your eyes and find something wonderful to look at, we will see you again in the morning.
We love you Connor.
- Mommy and Daddy
Saturday, November 24, 2012
No Mas(k)...
Hey Connor,
That raucous laughter you hear in the background isn't the crew from a naval vessel telling dirty jokes, its your nurses discussing how tired they get when they work too late. Apparently lack of sleep and added stress of little guys with "episodes" makes people giggle about all sorts of things. Its good though, I like it that you are getting to hear some happy noises right now instead of just beeps and alarms and that crazy fan that is always going in your room. Happy noises are part of life too you know, a big part, and they keep us going even when we are having a rough day (or two). So lets hope they keep laughing.
You may recognize one of those voices too, you have been hearing it all day long and it has been telling you it wants to just "eat your chin up". She said the same thing the day you arrived here at Children's. That's right, you got to have Megan all to yourself today you lucky guy. She took extra special care of you and she was talking to you all day long. She just kept saying how good you look and how happy she is you are still flying solo, no tubes attached. I think maybe you made an impression on her with that big entrance of yours 8 weeks ago.
Which, by the way, means today is your eight week birthday so HAPPY BIRTHDAY buddy boy. I promise we will make up for the lack of cake when you get older. It may be in the form of cupcakes since mommy makes the best cupcakes in the world (not just my opinion, she actually had a following when we lived in Texas) but trust me, there will be cake. There will probably be presents too, lots and lots of presents if I know your grandparents and your mommy's friends. But lets not get ahead of ourselves, we gotta get out of here first.
There isn't a ton of news from today so this won't be one of those notes that rambles on and on about this doctor saying this and that doctor saying that. And, as we are learning again, no news is good news right now. You had a quiet morning with daddy, no songs or play time today since you were sleeping but we still pseudo-cuddled with me putting my hands around you and rubbing your little head. I know its not the same as picking you up but with that crazy CPAP mask it was the best I could do.
Your doctors didn't round until after twelve today but when they did there wasn't much to say. You are holding steady and breathing on your own just like you should with no major hiccups. They talked about your numbers for a minute and they decided to give you a little blood but all in all the sentiment was "lets wait until Monday and see what we can find out". Dr. Nelson put it best when he said we spend most of our time here gathering information and the rest of the time acting on it. For right now they need to keep gathering until they can figure out what is behind your little lung issues lately. Don't worry though, he says they're on it.
Your Grandma came up today to spend some time with you so that mommy could have lunch with her friend Lisa (she's a nurse too) and daddy could go run some errands. She came up and played with you and helped calm you down a few times when you decided to get fussy, turns out she is pretty good at that with her patting and whispering. Go Grandma. So while she was here mommy went and had lunch with her friend and when those two are together there are always smiles. Sometimes a few tears but ALWAYS smiles so that was a wonderful treat for mommy today.
While daddy was out I had to get some shots in my arms. Now I will tell you that I'm not much of a tough guy when it comes to shots, even if they are little ones. It has only been in the last few years that I have gotten to the point that I can watch them poke me, before that it was close my eyes and try to count my breaths until its over. Pretty ridiculous I know, but after being in here with you I found that today was much easier. All I had to do was think about all the stuff you have been through and those needles seemed much less terrifying. Thank you for that little man, thirty years of trying and all it took was you to get me over that fear of needles.
But once mommy and daddy were back you decided it was time for a little bit of a shake up, we wouldn't want to get too comfortable after all. Luckily today's mini-episode wasn't very long (hence the mini tag) but it was still a little bit scary, scary enough to keep mommy and daddy here to watch the Notre Dame game tonight (Go Irish!). We went to check on you and all the sudden you were really swollen and really upset and really not breathing well with that CPAP machine. Luckily Megan was here and she got that thing off of you so your little face could have a break and then told the doctors what they needed to do to make you better. They kind of chuckled at her barking orders but you better believe they listened and her plan worked, you were calm shortly afterward and the swelling is going away already. Thanks again Megan.
Part of her plan, along with giving you some more of your "peepee medicine" (I think that was Megan's term for it....), was to get you off the CPAP machine completely. So you know what that means right? NO MORE MASK! WOO HOO!. I don't know who was more excited about that thing being taken to the other side of the room, you or mommy and daddy, but everyone agrees you are doing much better without it. The high flow cannulas are still there (not quite free yet) but they are way less annoying and you don't really seem to mind them much. AND, the best part is your blood gas numbers are actually BETTER with the high flow. Makes for a good case to leave you on that for now and let you rest tonight.
With that thought in mind I am going to wrap up here and hopefully you will get some sleep and plenty of rest and have a completely uneventful night. You look really happy and peaceful right now and that is what we are going for, keep it up.
But if you do wake up we can watch the Irish beat up on USC tonight, I'll get your hat ready in case. :-)
I love you Connor.
- Daddy
That raucous laughter you hear in the background isn't the crew from a naval vessel telling dirty jokes, its your nurses discussing how tired they get when they work too late. Apparently lack of sleep and added stress of little guys with "episodes" makes people giggle about all sorts of things. Its good though, I like it that you are getting to hear some happy noises right now instead of just beeps and alarms and that crazy fan that is always going in your room. Happy noises are part of life too you know, a big part, and they keep us going even when we are having a rough day (or two). So lets hope they keep laughing.
You may recognize one of those voices too, you have been hearing it all day long and it has been telling you it wants to just "eat your chin up". She said the same thing the day you arrived here at Children's. That's right, you got to have Megan all to yourself today you lucky guy. She took extra special care of you and she was talking to you all day long. She just kept saying how good you look and how happy she is you are still flying solo, no tubes attached. I think maybe you made an impression on her with that big entrance of yours 8 weeks ago.
Which, by the way, means today is your eight week birthday so HAPPY BIRTHDAY buddy boy. I promise we will make up for the lack of cake when you get older. It may be in the form of cupcakes since mommy makes the best cupcakes in the world (not just my opinion, she actually had a following when we lived in Texas) but trust me, there will be cake. There will probably be presents too, lots and lots of presents if I know your grandparents and your mommy's friends. But lets not get ahead of ourselves, we gotta get out of here first.
There isn't a ton of news from today so this won't be one of those notes that rambles on and on about this doctor saying this and that doctor saying that. And, as we are learning again, no news is good news right now. You had a quiet morning with daddy, no songs or play time today since you were sleeping but we still pseudo-cuddled with me putting my hands around you and rubbing your little head. I know its not the same as picking you up but with that crazy CPAP mask it was the best I could do.
Your doctors didn't round until after twelve today but when they did there wasn't much to say. You are holding steady and breathing on your own just like you should with no major hiccups. They talked about your numbers for a minute and they decided to give you a little blood but all in all the sentiment was "lets wait until Monday and see what we can find out". Dr. Nelson put it best when he said we spend most of our time here gathering information and the rest of the time acting on it. For right now they need to keep gathering until they can figure out what is behind your little lung issues lately. Don't worry though, he says they're on it.
Your Grandma came up today to spend some time with you so that mommy could have lunch with her friend Lisa (she's a nurse too) and daddy could go run some errands. She came up and played with you and helped calm you down a few times when you decided to get fussy, turns out she is pretty good at that with her patting and whispering. Go Grandma. So while she was here mommy went and had lunch with her friend and when those two are together there are always smiles. Sometimes a few tears but ALWAYS smiles so that was a wonderful treat for mommy today.
While daddy was out I had to get some shots in my arms. Now I will tell you that I'm not much of a tough guy when it comes to shots, even if they are little ones. It has only been in the last few years that I have gotten to the point that I can watch them poke me, before that it was close my eyes and try to count my breaths until its over. Pretty ridiculous I know, but after being in here with you I found that today was much easier. All I had to do was think about all the stuff you have been through and those needles seemed much less terrifying. Thank you for that little man, thirty years of trying and all it took was you to get me over that fear of needles.
But once mommy and daddy were back you decided it was time for a little bit of a shake up, we wouldn't want to get too comfortable after all. Luckily today's mini-episode wasn't very long (hence the mini tag) but it was still a little bit scary, scary enough to keep mommy and daddy here to watch the Notre Dame game tonight (Go Irish!). We went to check on you and all the sudden you were really swollen and really upset and really not breathing well with that CPAP machine. Luckily Megan was here and she got that thing off of you so your little face could have a break and then told the doctors what they needed to do to make you better. They kind of chuckled at her barking orders but you better believe they listened and her plan worked, you were calm shortly afterward and the swelling is going away already. Thanks again Megan.
Part of her plan, along with giving you some more of your "peepee medicine" (I think that was Megan's term for it....), was to get you off the CPAP machine completely. So you know what that means right? NO MORE MASK! WOO HOO!. I don't know who was more excited about that thing being taken to the other side of the room, you or mommy and daddy, but everyone agrees you are doing much better without it. The high flow cannulas are still there (not quite free yet) but they are way less annoying and you don't really seem to mind them much. AND, the best part is your blood gas numbers are actually BETTER with the high flow. Makes for a good case to leave you on that for now and let you rest tonight.
With that thought in mind I am going to wrap up here and hopefully you will get some sleep and plenty of rest and have a completely uneventful night. You look really happy and peaceful right now and that is what we are going for, keep it up.
But if you do wake up we can watch the Irish beat up on USC tonight, I'll get your hat ready in case. :-)
I love you Connor.
- Daddy
Friday, November 23, 2012
The Connor Sitcom...
Hey there Little Buddy,
So you gave us another little head fake last night, you are better at that than Allen Iverson in his prime lately. Mommy and I spent all day long sitting with you and making sure you were good and happy and when we finally left you last night we felt pretty confident that you were going to have a quiet and uneventful night. HEAD FAKE. It wasn't a terrible night, you have certainly had worse, but it wasn't the quiet, peaceful, restful night we had hoped for either.
Mommy and daddy decided that if we could catch up on some sleep this morning then we would take advantage of that after the last two nights. It sort of worked, we slept a little bit more than the two nights prior, but when I got over to the hospital around eight or eight-thirty I walked into your room and into what looked like the leftovers from a war zone. Your high flow cannulas were long gone and you were back on your CPAP mask with full head gear. What was even worse was the intubation setup that had been set out on the table next to your bed.
What happened next was kind of a blur because daddy lost a little bit of his temper with the nurse. It turns out that you had an x-ray around five this morning and decided that it was the end of the world. You flipped out and raised your heart rate and your respiration rate high enough that the nurses had to start pumping you full of happy medicines. That didn't work and you didn't calm down and then you blew a tire. In this case the metaphor likens a tire to your lung so perhaps I should say you blew out the tires on the left side. Episode number three in about as many days.
After that we talked to the doctors and found out that they were going to do some tests to find out if there was something you weren't telling us. The first of those tests was your CT scan. They actually brought one to your room this time, you are that important. Well you flew through it but the results were less than ideal so Dr. Ilias came to talk to mommy and daddy personally. He explained that the test found something that wasn't related to the episodes at all but it may end up being important. Then again it may not, but I know you would have it no other way.
The CT showed that you have two blood clots in your head. The good news is the clots are small and they are not the kind we need to worry about. The other good news is they don't think they will be "clinically significant". The kind of bad news is that this type of clot, of course, is something that is "really quite rare". The doctors don't see it very often and they therefore need to do even more tests to see what is going on and put you on some medicines to make sure nothing bad happens with them in the mean time. That means a field trip next week buddy.
Next, because of your episodes lately, we had one of your respiratory therapists decide that your anxiety from the CPAP needed to stop. She asked mommy and daddy if we would be interested in trying some new RT equipment and participating in a research study. Now I don't want you to get a big ego or anything, but this is your third (or was it fourth?) research study already. But anyway, they took this really cool strobe light imaging system and mapped your face so that they could mold a mask to better fit your face and help you deal with the CPAP better. Pretty cool isn't it?
I don't know if you have noticed a theme here yet. No? Well we keep talking about your "episodes" and how those "episodes" are happening quite a bit and are now in the driver's seat around here. This little sitcom you are putting together for us is not much for entertainment and if mommy and daddy and your doctors have anything to say about it we are going to try and get that one replaced with the Connor version of "the voice" before too long. I hope you don't mind but I swear it will be better for all of us so chew on that one for a while.
Now we are hoping for an episode free weekend starting with a calm night tonight, lets work together on this one. All three of us need some time to relax and some time to get caught up on some much needed rest. So good night, sweet dreams, and sleep tight.
We love you Connor,
- Mommy and Daddy
So you gave us another little head fake last night, you are better at that than Allen Iverson in his prime lately. Mommy and I spent all day long sitting with you and making sure you were good and happy and when we finally left you last night we felt pretty confident that you were going to have a quiet and uneventful night. HEAD FAKE. It wasn't a terrible night, you have certainly had worse, but it wasn't the quiet, peaceful, restful night we had hoped for either.
Mommy and daddy decided that if we could catch up on some sleep this morning then we would take advantage of that after the last two nights. It sort of worked, we slept a little bit more than the two nights prior, but when I got over to the hospital around eight or eight-thirty I walked into your room and into what looked like the leftovers from a war zone. Your high flow cannulas were long gone and you were back on your CPAP mask with full head gear. What was even worse was the intubation setup that had been set out on the table next to your bed.
What happened next was kind of a blur because daddy lost a little bit of his temper with the nurse. It turns out that you had an x-ray around five this morning and decided that it was the end of the world. You flipped out and raised your heart rate and your respiration rate high enough that the nurses had to start pumping you full of happy medicines. That didn't work and you didn't calm down and then you blew a tire. In this case the metaphor likens a tire to your lung so perhaps I should say you blew out the tires on the left side. Episode number three in about as many days.
After that we talked to the doctors and found out that they were going to do some tests to find out if there was something you weren't telling us. The first of those tests was your CT scan. They actually brought one to your room this time, you are that important. Well you flew through it but the results were less than ideal so Dr. Ilias came to talk to mommy and daddy personally. He explained that the test found something that wasn't related to the episodes at all but it may end up being important. Then again it may not, but I know you would have it no other way.
The CT showed that you have two blood clots in your head. The good news is the clots are small and they are not the kind we need to worry about. The other good news is they don't think they will be "clinically significant". The kind of bad news is that this type of clot, of course, is something that is "really quite rare". The doctors don't see it very often and they therefore need to do even more tests to see what is going on and put you on some medicines to make sure nothing bad happens with them in the mean time. That means a field trip next week buddy.
Next, because of your episodes lately, we had one of your respiratory therapists decide that your anxiety from the CPAP needed to stop. She asked mommy and daddy if we would be interested in trying some new RT equipment and participating in a research study. Now I don't want you to get a big ego or anything, but this is your third (or was it fourth?) research study already. But anyway, they took this really cool strobe light imaging system and mapped your face so that they could mold a mask to better fit your face and help you deal with the CPAP better. Pretty cool isn't it?
I don't know if you have noticed a theme here yet. No? Well we keep talking about your "episodes" and how those "episodes" are happening quite a bit and are now in the driver's seat around here. This little sitcom you are putting together for us is not much for entertainment and if mommy and daddy and your doctors have anything to say about it we are going to try and get that one replaced with the Connor version of "the voice" before too long. I hope you don't mind but I swear it will be better for all of us so chew on that one for a while.
Now we are hoping for an episode free weekend starting with a calm night tonight, lets work together on this one. All three of us need some time to relax and some time to get caught up on some much needed rest. So good night, sweet dreams, and sleep tight.
We love you Connor,
- Mommy and Daddy
Thursday, November 22, 2012
Pecan Pie...
Hey there Buddy,
Happy Turkey Day! Or to be a tad more traditional, Happy Thanksgiving. I told you earlier today that we would talk more about Thanksgiving so here we go, lets have a chat. Thanksgiving is an American holiday that celebrates the survival of the Pilgrims during their transition into the New World (that is the United States, but don't worry about these details too much, you'll learn them all again in history class one day) and the help and support of the local Native Americans. I don't think I will go into too much detail beyond that other than to make sure you know that today, more than anything else, is a day to be thankful for the blessings in our life.
So having said that, today was a very very difficult day for your mommy and daddy, but a little game helped to get us through. You see Thanksgiving is one of your mommy and daddy's favorite holidays for lots of reasons. We love the food and the football and the family but we also love the act of cooking the food and watching the football with our family. We love to make things that make people smile and taste the love in the food we all make. As much as we love the dinner table on Thanksgiving, I think we love the kitchen even more.
But today we had neither of those, today we faced a Thanksgiving unlike any that either of us has experienced before and it was tough. Today we didn't get to cook or spend hours in the kitchen tasting and talking. We didn't get to sit down to chow on our favorite foods and we didn't get to (perhaps daddy is the only one who would think of this one) clean up afterwards. Today we spent a lot of time thinking about these things we didn't get to do and those thoughts made us sad at times so we created a game. That game was simple, every time a sad thought about the things we didn't get to do we thought about something we were thankful for.
Here are some of the things we wanted to share with you from that game today:
We missed turkey - We are thankful for Ronald McDonald House
We missed our kitchen - We are so thankful for the people working the cafeteria at Children's
We missed our family - We are SO SO SO thankful for YOU
We missed stuffing - We are thankful for the wonderful nurses who took the day away from their families to take care of you
We missed our dogs - We are thankful for the family we have to take care of them and give them good homes
We missed our friends - We are SO thankful for Dr Morales, Dr Nelson, Dr Ileus, Dr Merino, Dr K (Catherine), Dr Cooper, Dr Connor, Ben, Chet, Sam, Tad, Will, Megan, Megan, Megan (yep there are at least three I know of), Mary, Francesca, Rhonda, Tiffany, Kate, Guy, Gina, Shawna, Rachel, Sheree, and all of the other people who I can't remember right now who have taken care of you while you have been here
We missed our family gathering - We are thankful for the ways we can all communicate and even though we don't get to see each other much we all can remain close
We missed our time relaxing together watching football - We are thankful for the time we got to spend playing with you today
We missed our couch - We are thankful for getting the chance to hold you tight close to us WITHOUT that breathing tube
These are just a few of the things we thought about but since I don't plan to write a book here I will just leave the rest to your imagination. You should know that both your mommy and I talked about how thankful we are for you at least a hundred times today. Your mommy and I don't need anything to have a happy Thanksgiving except each other and you. The turkey and stuffing, the football and beer, the sweet potato casserole and watergate salad, they all mean very little when they are compared to having you here with us and getting the chance to spend the day with you.
Now I know mommy has about a dozen outfits she has been waiting to put on you but she got a new one today that she just couldn't pass up...
But there is one thing that daddy really just couldn't do without today, something that is so Thanksgiving that I couldn't end the day without it.... and that is Pecan Pie. I was lucky enough to find some left over at the Ronald McDonald House and I got to taste my Thanksgiving. It wasn't as good as Gigi's Derby pie (that one is like Pecan Pie on steroids) but it was good enough for this guy.
But now its bed time again, another day closing down. So as mommy and I lay here we are taking this time to say thank you for all the blessings in our life. On days like today it is so very easy to feel down in the dumps but when we think about our friends and our family and the crazy chain of events that brought us here now so you could get all of your doctors and nurses who take such good care of you we realize that we are truly blessed. We are lucky in a way that few people are and we are thankful for that, and most of all we are thankful for you Connor.
Mommy and daddy love you Connor.
- Daddy
Happy Turkey Day! Or to be a tad more traditional, Happy Thanksgiving. I told you earlier today that we would talk more about Thanksgiving so here we go, lets have a chat. Thanksgiving is an American holiday that celebrates the survival of the Pilgrims during their transition into the New World (that is the United States, but don't worry about these details too much, you'll learn them all again in history class one day) and the help and support of the local Native Americans. I don't think I will go into too much detail beyond that other than to make sure you know that today, more than anything else, is a day to be thankful for the blessings in our life.
So having said that, today was a very very difficult day for your mommy and daddy, but a little game helped to get us through. You see Thanksgiving is one of your mommy and daddy's favorite holidays for lots of reasons. We love the food and the football and the family but we also love the act of cooking the food and watching the football with our family. We love to make things that make people smile and taste the love in the food we all make. As much as we love the dinner table on Thanksgiving, I think we love the kitchen even more.
But today we had neither of those, today we faced a Thanksgiving unlike any that either of us has experienced before and it was tough. Today we didn't get to cook or spend hours in the kitchen tasting and talking. We didn't get to sit down to chow on our favorite foods and we didn't get to (perhaps daddy is the only one who would think of this one) clean up afterwards. Today we spent a lot of time thinking about these things we didn't get to do and those thoughts made us sad at times so we created a game. That game was simple, every time a sad thought about the things we didn't get to do we thought about something we were thankful for.
Here are some of the things we wanted to share with you from that game today:
We missed turkey - We are thankful for Ronald McDonald House
We missed our kitchen - We are so thankful for the people working the cafeteria at Children's
We missed our family - We are SO SO SO thankful for YOU
We missed stuffing - We are thankful for the wonderful nurses who took the day away from their families to take care of you
We missed our dogs - We are thankful for the family we have to take care of them and give them good homes
We missed our friends - We are SO thankful for Dr Morales, Dr Nelson, Dr Ileus, Dr Merino, Dr K (Catherine), Dr Cooper, Dr Connor, Ben, Chet, Sam, Tad, Will, Megan, Megan, Megan (yep there are at least three I know of), Mary, Francesca, Rhonda, Tiffany, Kate, Guy, Gina, Shawna, Rachel, Sheree, and all of the other people who I can't remember right now who have taken care of you while you have been here
We missed our family gathering - We are thankful for the ways we can all communicate and even though we don't get to see each other much we all can remain close
We missed our time relaxing together watching football - We are thankful for the time we got to spend playing with you today
We missed our couch - We are thankful for getting the chance to hold you tight close to us WITHOUT that breathing tube
These are just a few of the things we thought about but since I don't plan to write a book here I will just leave the rest to your imagination. You should know that both your mommy and I talked about how thankful we are for you at least a hundred times today. Your mommy and I don't need anything to have a happy Thanksgiving except each other and you. The turkey and stuffing, the football and beer, the sweet potato casserole and watergate salad, they all mean very little when they are compared to having you here with us and getting the chance to spend the day with you.
Now I know mommy has about a dozen outfits she has been waiting to put on you but she got a new one today that she just couldn't pass up...
So thank you to Valerie, Barry, Kyle, Ivy, Clayton, and Evelyn for this wonderful expression of our favorite holiday.
But there is one thing that daddy really just couldn't do without today, something that is so Thanksgiving that I couldn't end the day without it.... and that is Pecan Pie. I was lucky enough to find some left over at the Ronald McDonald House and I got to taste my Thanksgiving. It wasn't as good as Gigi's Derby pie (that one is like Pecan Pie on steroids) but it was good enough for this guy.
But now its bed time again, another day closing down. So as mommy and I lay here we are taking this time to say thank you for all the blessings in our life. On days like today it is so very easy to feel down in the dumps but when we think about our friends and our family and the crazy chain of events that brought us here now so you could get all of your doctors and nurses who take such good care of you we realize that we are truly blessed. We are lucky in a way that few people are and we are thankful for that, and most of all we are thankful for you Connor.
Mommy and daddy love you Connor.
- Daddy
Parade...
Hey there little man,
Sorry mommy and daddy didn't write you a note last night but we were kind of busy watching the parade run by. I know you don't know about Thanksgiving yet but you will learn because it is one of your family's favorite holidays. And one of the great traditions on Thanksgiving is the big parade. It starts early in the morning and runs all day long, or at least it seems like it does because it generally interferes with daddy watching football. But the parade that mommy and watched was last night, on Thanksgiving Eve (as mommy calls it) and it wasn't so much to do with Thanksgiving after all.
But lets start with something else. Yesterday morning you and daddy spent some time together again, playing and listening to music like we used to. Now you weren't quite as happy about it this time as you have been in the past but we have had worse times too. And quite frankly I enjoyed it because you were making your faces again and without that yucky tube I was able to see them even more. Then once you quieted down some I did some boring stuff on my computer while you slept. All in all it was a pretty good morning.
Then mommy came over and you got a little agitated again. I mean we don't want to hog all the "Connor throws a fit for absolutely no reason anyone can imagine" time between the two of us, we have to share the wealth right? Well we did, mommy got her dose too. It wasn't too bad though, and around one o'clock (of course right when mommy and I went to go eat some lunch) you threw the biggest fit of the day and earned yourself a dose of chill out medicine from your nurse.
You must have been pretty tired because it zonked you and it lasted for a long time. That did make for a quiet afternoon though, and one where you were just as content as you could possibly be. You only woke up once or twice all afternoon and even then it was for short spurts and you were clearly ready to go back to sleep. I believe the look on your face was something along the lines of "seriously why in the world do you have that stupid camera in my face when I'm sleeping?!?!?!"
Well the short answer is I have to have something to show the world, your head shots are in high demand pal.
But you did spend most of the time snoozing. Even when Grandpa came up to check you out and see how you were doing you were out of it. He tried talking to you a few times but it just didn't work because you were too tired. You had been up for most of the morning and then a big chunk of the day before too so I can't say that I blame you. According to some of the docs you should be sleeping eighteen to twenty hours a day and you were up for at least ten on Tuesday. I think you were just afraid you would miss something.
So Grandpa took mommy and daddy to dinner down in the cafeteria and we all ate some tasty food while we talked about you and how you have been doing lately. The doctors have been happy with your progress and mommy and daddy have been thrilled and oh so proud like mommy said in her last note. Its been hard to go through all that stuff but you seem to be doing it with ease for the most part. Quite impressive.
So then after dinner mommy and I went next door to Ronald McDonald in hopes of an early night and some good rest but you had other plans. You wanted your parade a day early. And one thing that I have learned in the last month and a half is that you tend to win out with what you want and when you want it. Mommy and daddy hadn't even gotten inside yet, we were outside talking briefly to your former neighbors from the three hundred POD, when daddy's phone started ringing.
Daddy doesn't get a lot of phone calls in general, but when I pulled that phone out of my pocket my stomach jumped up into my throat and my hands went numb. It was the hospital calling me. At that time of night the hospital only calls with bad news. After forcing myself to take a deep breath I answered the call, it was your nurse. She said you had an "episode" and they were "working on your now" and the doctors were trying to decide whether or not to put your breathing tube back in.
I said seven words to mommy, "something happened, we need to go back". We all but ran from Ronald McDonald back over to your room and you had indeed started your own parade, mommy and daddy were two of the last ones to float by you. The nurse explained to us that you had started to drop all your numbers, every one of them, including your heart rate. I wasn't too concerned until she said she had to do compressions on your little chest again. She got you back to a normal level though, and got the doctors quick.
A doctor you hadn't really met yet was the one here first, I think his name is Chet. He was helping to get you back on track with several nurses and an RT all working on you at the same time. Then walked in Dr. Ileus, Dr. Morales, and Megan. This was only the second time I have seen Dr. Morales and been terrified. He was still in his surgical gear and had apparently left the operating room with a patient on the table to come up and check on you. That is some pretty serious stuff my friend, pretty serious indeed. After them you had the usual suspects in your parade; nurses, RT's, fellows, doctors, x-ray technicians, Chet again for an echo, more nurses from the IV unit to give you another IV, and of course mommy and daddy.
There were lots of people parading through your room and it seemed that you wanted a few passes from each before you were going to be happy so that is what we all did. People kept making trips back in here until finally you were calm and quiet. I think that took about five hours total, maybe six. But the important part is that you were calm, and you were sleeping, and there was no breathing tube. Dr. Ileus and Dr. Morales told us that they believed we needed "to make every effort possible" to keep the breathing tube out.
That meant dose after dose of medicine and two or more hours of you fighting with your CPAP mask while mommy and daddy stood over you trying to calm you down. I think the doctors knew you could make it through, they just had to get you calm enough to make sure your little heart didn't overwork itself and get tired like your lungs had. They don't really know what caused it or why but that will be today's mission, today we will figure it out so that we can fix it and keep moving forward.
But now you are awake again, and you aren't happy so its time for daddy to come talk to you about what today is and all the things you have to look forward to in years to come. We will write you another note later, one that carries the true tone of Thanksgiving so we can talk about some of the things we are so thankful for. In the mean time lets have a chat little man.
Mommy and Daddy love you Connor.
- Daddy
Sorry mommy and daddy didn't write you a note last night but we were kind of busy watching the parade run by. I know you don't know about Thanksgiving yet but you will learn because it is one of your family's favorite holidays. And one of the great traditions on Thanksgiving is the big parade. It starts early in the morning and runs all day long, or at least it seems like it does because it generally interferes with daddy watching football. But the parade that mommy and watched was last night, on Thanksgiving Eve (as mommy calls it) and it wasn't so much to do with Thanksgiving after all.
But lets start with something else. Yesterday morning you and daddy spent some time together again, playing and listening to music like we used to. Now you weren't quite as happy about it this time as you have been in the past but we have had worse times too. And quite frankly I enjoyed it because you were making your faces again and without that yucky tube I was able to see them even more. Then once you quieted down some I did some boring stuff on my computer while you slept. All in all it was a pretty good morning.
Then mommy came over and you got a little agitated again. I mean we don't want to hog all the "Connor throws a fit for absolutely no reason anyone can imagine" time between the two of us, we have to share the wealth right? Well we did, mommy got her dose too. It wasn't too bad though, and around one o'clock (of course right when mommy and I went to go eat some lunch) you threw the biggest fit of the day and earned yourself a dose of chill out medicine from your nurse.
You must have been pretty tired because it zonked you and it lasted for a long time. That did make for a quiet afternoon though, and one where you were just as content as you could possibly be. You only woke up once or twice all afternoon and even then it was for short spurts and you were clearly ready to go back to sleep. I believe the look on your face was something along the lines of "seriously why in the world do you have that stupid camera in my face when I'm sleeping?!?!?!"
But you did spend most of the time snoozing. Even when Grandpa came up to check you out and see how you were doing you were out of it. He tried talking to you a few times but it just didn't work because you were too tired. You had been up for most of the morning and then a big chunk of the day before too so I can't say that I blame you. According to some of the docs you should be sleeping eighteen to twenty hours a day and you were up for at least ten on Tuesday. I think you were just afraid you would miss something.
So Grandpa took mommy and daddy to dinner down in the cafeteria and we all ate some tasty food while we talked about you and how you have been doing lately. The doctors have been happy with your progress and mommy and daddy have been thrilled and oh so proud like mommy said in her last note. Its been hard to go through all that stuff but you seem to be doing it with ease for the most part. Quite impressive.
So then after dinner mommy and I went next door to Ronald McDonald in hopes of an early night and some good rest but you had other plans. You wanted your parade a day early. And one thing that I have learned in the last month and a half is that you tend to win out with what you want and when you want it. Mommy and daddy hadn't even gotten inside yet, we were outside talking briefly to your former neighbors from the three hundred POD, when daddy's phone started ringing.
Daddy doesn't get a lot of phone calls in general, but when I pulled that phone out of my pocket my stomach jumped up into my throat and my hands went numb. It was the hospital calling me. At that time of night the hospital only calls with bad news. After forcing myself to take a deep breath I answered the call, it was your nurse. She said you had an "episode" and they were "working on your now" and the doctors were trying to decide whether or not to put your breathing tube back in.
I said seven words to mommy, "something happened, we need to go back". We all but ran from Ronald McDonald back over to your room and you had indeed started your own parade, mommy and daddy were two of the last ones to float by you. The nurse explained to us that you had started to drop all your numbers, every one of them, including your heart rate. I wasn't too concerned until she said she had to do compressions on your little chest again. She got you back to a normal level though, and got the doctors quick.
A doctor you hadn't really met yet was the one here first, I think his name is Chet. He was helping to get you back on track with several nurses and an RT all working on you at the same time. Then walked in Dr. Ileus, Dr. Morales, and Megan. This was only the second time I have seen Dr. Morales and been terrified. He was still in his surgical gear and had apparently left the operating room with a patient on the table to come up and check on you. That is some pretty serious stuff my friend, pretty serious indeed. After them you had the usual suspects in your parade; nurses, RT's, fellows, doctors, x-ray technicians, Chet again for an echo, more nurses from the IV unit to give you another IV, and of course mommy and daddy.
There were lots of people parading through your room and it seemed that you wanted a few passes from each before you were going to be happy so that is what we all did. People kept making trips back in here until finally you were calm and quiet. I think that took about five hours total, maybe six. But the important part is that you were calm, and you were sleeping, and there was no breathing tube. Dr. Ileus and Dr. Morales told us that they believed we needed "to make every effort possible" to keep the breathing tube out.
That meant dose after dose of medicine and two or more hours of you fighting with your CPAP mask while mommy and daddy stood over you trying to calm you down. I think the doctors knew you could make it through, they just had to get you calm enough to make sure your little heart didn't overwork itself and get tired like your lungs had. They don't really know what caused it or why but that will be today's mission, today we will figure it out so that we can fix it and keep moving forward.
But now you are awake again, and you aren't happy so its time for daddy to come talk to you about what today is and all the things you have to look forward to in years to come. We will write you another note later, one that carries the true tone of Thanksgiving so we can talk about some of the things we are so thankful for. In the mean time lets have a chat little man.
Mommy and Daddy love you Connor.
- Daddy
Tuesday, November 20, 2012
Lots of firsts.... (lots of pictures)
Hi little man,
The last 48 hours have been action packed for you and somehow they have really worn out mommy and daddy. I can't promise that this will be the longest note but I wanted to make sure and document some important firsts over the past few days. Most importantly this is the first time you have gone over 24 hours without that yucky breathing tube. Now there's nothing to say we're out of the water yet but as of now you are trucking along on your own and keeping your numbers great. The doctors are very pleased with your progress and they have started weaning down your oxygen. Mommy and daddy couldn't be more happy or proud. We know you don't like that oxygen in your nose but just know that it won't be there forever. Keep doing the great job you're doing and before you know it you won't need it at all.
Yesterday you had another first which made mommy (the physical therapist) very happy. You spent some time on your tummy and looked at the world from a different angle. I can't say that you were thrilled about the new view but it was amazing how strong you are. Immediately after the nurse flipped you over you reared up and almost rolled back over. Mommy thought that was awesome but to be honest it made the nurse a little nervous. I couldn't believe that you had any neck strength at all since you've never gotten to practice that. Yet another example of you amazing everyone with your abilities.
Some other firsts that daddy mentioned yesterday were sucking on a pacifier and being able to be held up on mommy's shoulder. Today some nice people at Children's made you a mobile above your bed and you seemed to really like looking at it.
They also taped black and white pictures on the side of your crib which you seemed to be mesmerized by.
Last but not least you were able to sit in the bouncy seat that Elaine, Valerie and Leslie bought you for a gift. Mommy and daddy have been excited to let you test it out since Grandpa put it together last week. Although you're still kind of tiny for it I think you enjoyed your baby space ship ride.
So mommy doesn't have a lot of wise words for you tonight just lots of pictures and pride for her amazing son. I love you more than ever and I can't wait for you to be able to more and more fun things in the weeks to come. I hope all of this fun has worn you out so that you can get a great night sleep. Sweet dreams of all the big plans we have together.
Mommy and daddy love you.
-Mommy
The last 48 hours have been action packed for you and somehow they have really worn out mommy and daddy. I can't promise that this will be the longest note but I wanted to make sure and document some important firsts over the past few days. Most importantly this is the first time you have gone over 24 hours without that yucky breathing tube. Now there's nothing to say we're out of the water yet but as of now you are trucking along on your own and keeping your numbers great. The doctors are very pleased with your progress and they have started weaning down your oxygen. Mommy and daddy couldn't be more happy or proud. We know you don't like that oxygen in your nose but just know that it won't be there forever. Keep doing the great job you're doing and before you know it you won't need it at all.
Yesterday you had another first which made mommy (the physical therapist) very happy. You spent some time on your tummy and looked at the world from a different angle. I can't say that you were thrilled about the new view but it was amazing how strong you are. Immediately after the nurse flipped you over you reared up and almost rolled back over. Mommy thought that was awesome but to be honest it made the nurse a little nervous. I couldn't believe that you had any neck strength at all since you've never gotten to practice that. Yet another example of you amazing everyone with your abilities.
Some other firsts that daddy mentioned yesterday were sucking on a pacifier and being able to be held up on mommy's shoulder. Today some nice people at Children's made you a mobile above your bed and you seemed to really like looking at it.
Last but not least you were able to sit in the bouncy seat that Elaine, Valerie and Leslie bought you for a gift. Mommy and daddy have been excited to let you test it out since Grandpa put it together last week. Although you're still kind of tiny for it I think you enjoyed your baby space ship ride.
So mommy doesn't have a lot of wise words for you tonight just lots of pictures and pride for her amazing son. I love you more than ever and I can't wait for you to be able to more and more fun things in the weeks to come. I hope all of this fun has worn you out so that you can get a great night sleep. Sweet dreams of all the big plans we have together.
Mommy and daddy love you.
-Mommy
Monday, November 19, 2012
Whooped...
Spunky Monkey,
That is your name today because you earned it. This is going to be a short one because your mommy and I are both worn out. Its been a long day for us both and you have added some of your spunk to it so that made it just a tad bit longer on top of the norm. But don't let me steer you too far in the direction of bad news because that is not what I'm here to talk about today. Lets get to the important things.
NO MORE TUBE!!!! Mommy and I were skeptical but the doctors were pretty sure they knew better than us. Turns out they were right. Dr. Nelson didn't hold back one bit either. He said get that tube out, skip the silly looking headgear from last time and go straight to the high flow nasal prong thing. So as soon as you got that tube out mommy got you out and it was cuddle time.
The bad news is that you have been fussy as fussy can be and that include flailing, crying (yep, you were crying), kicking, rolling around, setting off alarms, and all kinds of other fussy stuff. You got worked up before the tube came out, right after the tube came out, and then again later when we thought you were good and calm. But daddy found a little something something that helped out.
Do you know what that is? It is a pacifier with a stuffed animal attached to it and it is your new best friend. You apparently know what to do with such a thing because as you can see you latched on with fingers and lips. You attacked that thing with such ferocity that I think you made mommy cringe just a tad. But it helped, it calmed you down and kept you happy while daddy got to hold you a little bit so it is my new best friend too, well besides you and mommy of course.
So before my eye lids fail me and close out the loud world around us I have to show you one more picture, its our latest family photo and its the best one yet. Thank you for a great day today little man. It was fully of fussy, feisty, fiascoes but it was you and me and mommy and no more breathing tube.
Sweet dreams little man, get some rest because I'm sure there will be more playing and more holding tomorrow.
Mommy and Daddy love you Connor.
- Daddy
That is your name today because you earned it. This is going to be a short one because your mommy and I are both worn out. Its been a long day for us both and you have added some of your spunk to it so that made it just a tad bit longer on top of the norm. But don't let me steer you too far in the direction of bad news because that is not what I'm here to talk about today. Lets get to the important things.
The bad news is that you have been fussy as fussy can be and that include flailing, crying (yep, you were crying), kicking, rolling around, setting off alarms, and all kinds of other fussy stuff. You got worked up before the tube came out, right after the tube came out, and then again later when we thought you were good and calm. But daddy found a little something something that helped out.
So before my eye lids fail me and close out the loud world around us I have to show you one more picture, its our latest family photo and its the best one yet. Thank you for a great day today little man. It was fully of fussy, feisty, fiascoes but it was you and me and mommy and no more breathing tube.
Mommy and Daddy love you Connor.
- Daddy
Sunday, November 18, 2012
Not so football Sunday
Hi Connor,
Today was a different kind of Sunday for our family. As you know Sunday usually consists of hanging around your room and watching that blurry box above your sink while mommy and daddy cheer for our favorite teams. Well today we started out pretty normal. Mommy and daddy were hanging out with you and you were looking especially cute.
Mommy and daddy had planned to go up to Grandma and Grandpa's to pick up a few things when daddy had an idea. Daddy suggested we go see a movie while we were out. Now you don't yet know what a movie is but it's basically watching people on a much less blurry, much much bigger screen than the one in your room. Daddy loves movies and mommy has been getting a little stir crazy so it sounded like just what we needed.
Being the cooperative little angel you are, you fell asleep just as mommy and daddy were leaving and according to your nurse slept most of the afternoon while we were gone. Aside from going out for a quick dinner or sleeping, today was the first time both mommy and daddy had left you at the same time in 7 weeks. At first we both felt pretty bad about it but then you reminded us what a big boy you were and that you could handle it. I don't know when we will stop treating you like a baby, ha ha.
While mommy and daddy were out you did some big boy work and practiced your breathing most of the day. You did awesome and it sounds like attempt number two for removing the breathing tube may be sooner rather than later. The doctors are chomping at the bit to pull that yucky thing again but the nurses were a little less anxious to discuss it today because you were extra snotty. For a little guy you sure can blow a crazy amount of snot out of that cute nose and slobber a bunch out of that sweet mouth. To appease the nurses the doctors agreed to check and make sure you don't have an infection again before they pull that tube so we'll wait for those results tomorrow.
So although we didn't watch a lot of football today we had some fun play time early this morning and a bunch more when mommy and daddy got back tonight. Mommy had a long talk with you about all the little friends you have waiting to play with you. You seemed pretty excited about meeting them. Now you are sound asleep and we are winding down too. Mommy is going to have another quick talk with God about helping to get your little lungs ready and trusting that the doctors know when that is. Thanks for being such a good boy today and letting mommy and daddy go out for a while. Sweet dreams of all the fun you are going to have playing with your friends before long.
I love you Connor
-Mommy
Today was a different kind of Sunday for our family. As you know Sunday usually consists of hanging around your room and watching that blurry box above your sink while mommy and daddy cheer for our favorite teams. Well today we started out pretty normal. Mommy and daddy were hanging out with you and you were looking especially cute.
Mommy and daddy had planned to go up to Grandma and Grandpa's to pick up a few things when daddy had an idea. Daddy suggested we go see a movie while we were out. Now you don't yet know what a movie is but it's basically watching people on a much less blurry, much much bigger screen than the one in your room. Daddy loves movies and mommy has been getting a little stir crazy so it sounded like just what we needed.
Being the cooperative little angel you are, you fell asleep just as mommy and daddy were leaving and according to your nurse slept most of the afternoon while we were gone. Aside from going out for a quick dinner or sleeping, today was the first time both mommy and daddy had left you at the same time in 7 weeks. At first we both felt pretty bad about it but then you reminded us what a big boy you were and that you could handle it. I don't know when we will stop treating you like a baby, ha ha.
While mommy and daddy were out you did some big boy work and practiced your breathing most of the day. You did awesome and it sounds like attempt number two for removing the breathing tube may be sooner rather than later. The doctors are chomping at the bit to pull that yucky thing again but the nurses were a little less anxious to discuss it today because you were extra snotty. For a little guy you sure can blow a crazy amount of snot out of that cute nose and slobber a bunch out of that sweet mouth. To appease the nurses the doctors agreed to check and make sure you don't have an infection again before they pull that tube so we'll wait for those results tomorrow.
So although we didn't watch a lot of football today we had some fun play time early this morning and a bunch more when mommy and daddy got back tonight. Mommy had a long talk with you about all the little friends you have waiting to play with you. You seemed pretty excited about meeting them. Now you are sound asleep and we are winding down too. Mommy is going to have another quick talk with God about helping to get your little lungs ready and trusting that the doctors know when that is. Thanks for being such a good boy today and letting mommy and daddy go out for a while. Sweet dreams of all the fun you are going to have playing with your friends before long.
-Mommy
Saturday, November 17, 2012
Happy 7 weeks...
Hello Connor,
Happy seven week birthday buddy boy! I know we are probably not supposed to keep celebrating weeks like this but since today was kind of like a party here I thought it was appropriate that we at least mention it. Today you had lots of visitors, as many as you have had in a single day in a LONG time. This time though, you had a lot of people from far away, and some important people from here in Cincinnati too.
First, lets say thank you to Grandma and Grandpa for coming down here to visit you today. It was extra nice of them to come down because today is also a really big day for them too, its their wedding anniversary. So join in with me here, "happy anniversary Grandma and Grandpa". They came down and were here for a while today to see you before they went out to have a special celebration of their own at a nice restaurant. But they were here for a while today, and they got to spend some time with just you and them and I am sure they loved that.
Next we can say thank you to Pappaw who drove up here yet again to see you and spend some time with you. He sure does love it when he gets to see you awake and play with your hands. You and he had quite a fun time tonight playing around and making faces at each other. I'm not sure which one of you made goofier faces but it was quiet a competition there for a while. And according to him you may have to be a boxer, he says you have big hands that are very very strong and all afternoon you kept "putting up your dukes". You looked like you were ready for a fight tough guy. He did give you a little present today, you can't quite have it yet but you looked pretty cute holding on to it.
Maybe once we get the tube out buddy.....
And lastly, but certainly not least because they traveled a LONG way for their short visit with you, your uncle Sebastian and aunt Alexa deserve a great big thank you for being here today. They got on a plane in Houston early Thursday morning, and that was after driving all the way from their home in Austin. Then they got to Louisville where Pappaw picked them up and took them out and about for some time with him in the Louisville area before catching up on some sleep. Then yesterday they got up early again and drove down to see Mammaw in Sunfish. They played dominoes and ate Mexican food, and listened to Mammaw tell some crazy stories about your daddy and your uncle Sebastian. The said it was fun and Mammaw sends you hugs and kisses.
Then, today, finally, they got to make the trip up here to Cincinnati to see the guest of honor, YOU. They got here around lunch time and stayed all day long. They played with you and kissed you and brought you some really awesome presents. One of which is next to you in the picture above (a stuffed Cookie Monster, since daddy loves cookies) and the rest of which will make it into pictures in the future for sure because they are some of the cutest outfits mommy and daddy have seen yet. And in your typical style you were the life of the party, always ready to entertain with that cute face of yours and those beautiful blue eyes that seem to get bigger every day.
You got yourself a bath right after they got here and you really seemed to enjoy that and thankfully you decided to stay awake for a long time after that so that we could all enjoy some Connor play time. When you finally tuckered out Pappaw took the rest of us out for some lunch/dinner (it was kind of in between) so that we could all get caught up and mommy and daddy could get a little time out of the hospital. Once we were all stuffed with some tasty pub food we came back so that they could say some good-byes to you before heading back to Louisville.
In the middle of the good-byes, during one of aunt Alexa's many photo shoots with you today, you made a mess in your diaper and threw a bit of a fit. Like a dutiful daddy I decided it was my job to fix this problem and went to work with diaper and wipes. I made a terrible error in judgement though. While I was in the middle of getting your diaper off I saw you inhale and didn't react quickly enough to stop the spray of brownish yellow goop with your diaper. Luckily for me you were pointed downward toward the side wall of your little bed and I didn't get covered in your little present. It did make me jump though, about a foot in the air, and your little gift gave all of us something to laugh about and a story to tell about your aunt and uncle's visit.
So after we got the bed cleaned up, and believe me that took a while after what you did, Pappaw and aunt Alexa and uncle Sebastian had to say their good-byes and make their way home. They were all headed to Louisville for the night tonight but then tomorrow Pappaw was going to take them to the airport to make the flight back home to Texas. Hopefully we can get them back up here soon or, if we are REALLY lucky and things go REALLY well, we can get you to go down there for a visit. Either way we hope to see them again soon and I know they hope they get to see you soon.
You were posing with Cookie Monster there, always the center of attention I tell you...
But now the day is winding down and mommy and daddy are getting you ready for a good night's sleep after a long day of playing and pictures. So you calm yourself down now and drift off to dream land, think of the people who love you and the presents they brought and all the love they represent. You are one lucky little man.
I love you Connor.
- Daddy
Happy seven week birthday buddy boy! I know we are probably not supposed to keep celebrating weeks like this but since today was kind of like a party here I thought it was appropriate that we at least mention it. Today you had lots of visitors, as many as you have had in a single day in a LONG time. This time though, you had a lot of people from far away, and some important people from here in Cincinnati too.
First, lets say thank you to Grandma and Grandpa for coming down here to visit you today. It was extra nice of them to come down because today is also a really big day for them too, its their wedding anniversary. So join in with me here, "happy anniversary Grandma and Grandpa". They came down and were here for a while today to see you before they went out to have a special celebration of their own at a nice restaurant. But they were here for a while today, and they got to spend some time with just you and them and I am sure they loved that.
Next we can say thank you to Pappaw who drove up here yet again to see you and spend some time with you. He sure does love it when he gets to see you awake and play with your hands. You and he had quite a fun time tonight playing around and making faces at each other. I'm not sure which one of you made goofier faces but it was quiet a competition there for a while. And according to him you may have to be a boxer, he says you have big hands that are very very strong and all afternoon you kept "putting up your dukes". You looked like you were ready for a fight tough guy. He did give you a little present today, you can't quite have it yet but you looked pretty cute holding on to it.
And lastly, but certainly not least because they traveled a LONG way for their short visit with you, your uncle Sebastian and aunt Alexa deserve a great big thank you for being here today. They got on a plane in Houston early Thursday morning, and that was after driving all the way from their home in Austin. Then they got to Louisville where Pappaw picked them up and took them out and about for some time with him in the Louisville area before catching up on some sleep. Then yesterday they got up early again and drove down to see Mammaw in Sunfish. They played dominoes and ate Mexican food, and listened to Mammaw tell some crazy stories about your daddy and your uncle Sebastian. The said it was fun and Mammaw sends you hugs and kisses.
Then, today, finally, they got to make the trip up here to Cincinnati to see the guest of honor, YOU. They got here around lunch time and stayed all day long. They played with you and kissed you and brought you some really awesome presents. One of which is next to you in the picture above (a stuffed Cookie Monster, since daddy loves cookies) and the rest of which will make it into pictures in the future for sure because they are some of the cutest outfits mommy and daddy have seen yet. And in your typical style you were the life of the party, always ready to entertain with that cute face of yours and those beautiful blue eyes that seem to get bigger every day.
You got yourself a bath right after they got here and you really seemed to enjoy that and thankfully you decided to stay awake for a long time after that so that we could all enjoy some Connor play time. When you finally tuckered out Pappaw took the rest of us out for some lunch/dinner (it was kind of in between) so that we could all get caught up and mommy and daddy could get a little time out of the hospital. Once we were all stuffed with some tasty pub food we came back so that they could say some good-byes to you before heading back to Louisville.
In the middle of the good-byes, during one of aunt Alexa's many photo shoots with you today, you made a mess in your diaper and threw a bit of a fit. Like a dutiful daddy I decided it was my job to fix this problem and went to work with diaper and wipes. I made a terrible error in judgement though. While I was in the middle of getting your diaper off I saw you inhale and didn't react quickly enough to stop the spray of brownish yellow goop with your diaper. Luckily for me you were pointed downward toward the side wall of your little bed and I didn't get covered in your little present. It did make me jump though, about a foot in the air, and your little gift gave all of us something to laugh about and a story to tell about your aunt and uncle's visit.
So after we got the bed cleaned up, and believe me that took a while after what you did, Pappaw and aunt Alexa and uncle Sebastian had to say their good-byes and make their way home. They were all headed to Louisville for the night tonight but then tomorrow Pappaw was going to take them to the airport to make the flight back home to Texas. Hopefully we can get them back up here soon or, if we are REALLY lucky and things go REALLY well, we can get you to go down there for a visit. Either way we hope to see them again soon and I know they hope they get to see you soon.
But now the day is winding down and mommy and daddy are getting you ready for a good night's sleep after a long day of playing and pictures. So you calm yourself down now and drift off to dream land, think of the people who love you and the presents they brought and all the love they represent. You are one lucky little man.
I love you Connor.
- Daddy
Friday, November 16, 2012
Rest up...
Good Morning Connor,
Hey there Bubba (that is a name I'll let your uncle Sebastian tell you about tomorrow when he and aunt Alexa come visit you) I just wanted to write you a note this morning while we enjoy some daddy and Connor time. We haven't had nearly as much of that lately because I have had to go run some errands in the mornings as I attempt to get us ready for life after we get you out of here. I promise I won't let that interfere with our time, we just might have to move it around a little bit here and there. It may not always be in the mornings but I promise it will always be there.
Today I think maybe we are going to talk a little philosophically. "Good Morning" is something that we all say to people in the hours before noon, its widely accepted as a greeting to anyone you may encounter. If I remember correctly it began as a wish from one person to another. "A good morning to you" is most likely how it started before our fast paced society and assumed need for timeliness and efficiency shortened it to the two words you will hear every day.
Here is where I think a lot of people have forgotten exactly what it is supposed to mean when someone says "Good Morning" to another person. Unfortunately it has become only a greeting, a way to start a conversation or acknowledge someone's presence. The spirit of the phrase has been lost in translation as they say. I am certain I am as guilty of this as any other human being walking around, it has become a habit, a social norm. Well I want you to know that when I tell you "Good Morning" it means "I hope you are having and will have a good morning".
And you know what? I am going to try and work on that with everyone else too. Maybe that will be another one of those things that you can teach me and we can work on together when you get a little bigger? Maybe if that's the way we do it from the beginning it will just be the "normal way" for you? Well we can certainly try anyway, but I am betting you can do it.
So I mentioned earlier that tomorrow you are going to have a few visitors. Your Pappaw is bringing your uncle Sebastian and aunt Alexa up so that they can come meet you. They have traveled a long way and put in lots of hours to be able to come here because you are pretty special to them and they want you to know that. Today they are down in Kentucky visiting your Mammaw and I'm sure she is going to be telling some stories on your daddy and your uncle, probably the kind that we don't really want anyone else to hear. But then again that is one part of what Mammaw's do.
I am not sure what time they will get here tomorrow but I'm guessing it will be on Pappaw's schedule so somewhere around nine or ten in the morning. We can practice our "Good Morning"s to them that way. ;-) And I think they are planning to spend most of the day up here, just hanging out with us and most likely ogling at you. Can't say I blame them though, you are pretty darn cute, especially when you are awake and making those faces of yours. Which means, if you are up for it, you will probably get the chance to do a lot of playing tomorrow.
And that brings us back to the point here, "rest up". I know that yesterday was a long day for you, and believe it or not the day before was probably even longer, so lets just take today and chill out. Normally we do that on our "lazy Sunday" but perhaps this week calls for a lazy Friday too. Fortunately for us there are no rules regarding such things and we can kind of wiggle around the days when we need to. So rest up baby boy, get yourself all geared up for a fun day tomorrow and some fresh new faces.
I love you Connor.
- Daddy
Hey there Bubba (that is a name I'll let your uncle Sebastian tell you about tomorrow when he and aunt Alexa come visit you) I just wanted to write you a note this morning while we enjoy some daddy and Connor time. We haven't had nearly as much of that lately because I have had to go run some errands in the mornings as I attempt to get us ready for life after we get you out of here. I promise I won't let that interfere with our time, we just might have to move it around a little bit here and there. It may not always be in the mornings but I promise it will always be there.
Today I think maybe we are going to talk a little philosophically. "Good Morning" is something that we all say to people in the hours before noon, its widely accepted as a greeting to anyone you may encounter. If I remember correctly it began as a wish from one person to another. "A good morning to you" is most likely how it started before our fast paced society and assumed need for timeliness and efficiency shortened it to the two words you will hear every day.
Here is where I think a lot of people have forgotten exactly what it is supposed to mean when someone says "Good Morning" to another person. Unfortunately it has become only a greeting, a way to start a conversation or acknowledge someone's presence. The spirit of the phrase has been lost in translation as they say. I am certain I am as guilty of this as any other human being walking around, it has become a habit, a social norm. Well I want you to know that when I tell you "Good Morning" it means "I hope you are having and will have a good morning".
And you know what? I am going to try and work on that with everyone else too. Maybe that will be another one of those things that you can teach me and we can work on together when you get a little bigger? Maybe if that's the way we do it from the beginning it will just be the "normal way" for you? Well we can certainly try anyway, but I am betting you can do it.
So I mentioned earlier that tomorrow you are going to have a few visitors. Your Pappaw is bringing your uncle Sebastian and aunt Alexa up so that they can come meet you. They have traveled a long way and put in lots of hours to be able to come here because you are pretty special to them and they want you to know that. Today they are down in Kentucky visiting your Mammaw and I'm sure she is going to be telling some stories on your daddy and your uncle, probably the kind that we don't really want anyone else to hear. But then again that is one part of what Mammaw's do.
I am not sure what time they will get here tomorrow but I'm guessing it will be on Pappaw's schedule so somewhere around nine or ten in the morning. We can practice our "Good Morning"s to them that way. ;-) And I think they are planning to spend most of the day up here, just hanging out with us and most likely ogling at you. Can't say I blame them though, you are pretty darn cute, especially when you are awake and making those faces of yours. Which means, if you are up for it, you will probably get the chance to do a lot of playing tomorrow.
And that brings us back to the point here, "rest up". I know that yesterday was a long day for you, and believe it or not the day before was probably even longer, so lets just take today and chill out. Normally we do that on our "lazy Sunday" but perhaps this week calls for a lazy Friday too. Fortunately for us there are no rules regarding such things and we can kind of wiggle around the days when we need to. So rest up baby boy, get yourself all geared up for a fun day tomorrow and some fresh new faces.
I love you Connor.
- Daddy
Thursday, November 15, 2012
Back to flat...
Hey there little man,
So it has been quite a day so far and its not even seven o'clock in the evening yet. As per usual you have decided that things will work your way and on your schedule, you have kept us on our toes, and you have made sure that every doctor in the cardiology unit stops in to say hello to you. Is this whole ordeal about you or what? If not then I think we need to discuss some parameters for the upcoming days/weeks/months. I'm just sayin....
I am sure you have heard me talk about it but your daddy is an energy trader. What is an energy trader? Well that is a fantastic question with a really long answer that starts with looking at weather maps and ends with looking at red and green numbers on a screen. There is plenty in between but for now we don't need to go into all those details and bore you to death. One of these days I'll show you the colorful maps and the crazy line graphs and the numbers, oh Billy the numbers, and we can talk about it as much as you can stand.
The important thing here is to know that daddy has a job that uses a vocabulary that doesn't make a lot of sense to the rest of the world. I use names like "Wylie Ridge" or "952 Rock" or "North Proctorville" and they mean something to a very select few people who also stare at computers like I do. I also say things like "I'm up for the month" or "that was quite a beating" and the meaning behind those phrases is NOTHING like you would expect it to be. People often times give me strange looks when I talk about work, but that could just be my hair so who knows.
Anyway, tying back into today. Today you pulled something that I will call "getting back to flat". When we got here all of the doctors told us that we would spend a lot of time taking steps forward and almost as much time taking steps backward. I know we have talked about this before so I'm sure you don't want me to go into that again, but today we kind of did that again.
You got that nasty breathing tube out yesterday and they put you in that crazy looking mask and then by midnight last night you were out of that thing and onto some regular nasal airflow. Well kind of regular, that is really just daddy's way of keeping it simple because I can neither remember nor spell some of the things they use around this joint. But you get the point, you were kicking butt again as usual. Then mommy and Grandma got to spend the whole morning with you, looking at that beautiful little face of yours. For the first time we all were enjoying those puffy cheeks and kind of puckered up lips.
Then you started having a little bit of trouble breathing and were breathing really fast. We didn't think too much of it because you were still very awake and VERY happy most of the time. But while your nurse was cleaning your I.V. line your alarms started to go bonkers and there were lights flashing and noises blaring. By the time I got up to see what was going on you had started to turn blue all over. My heart froze, my stomach climbed up into my throat, and I couldn't think for a second. As soon as I got my breath back I told the nurse to get the doctors and the rush started. It all happened in the blink of an eye.
The doctors came in, as you would have it, in crowds. They poured through the door and started taking blood samples and running numbers and giving you extra oxygen to make sure you got some of that color back. Thank God for them because they got you stable quickly and you were back to looking like yourself. Even though your color was better your doctor, Catherine, told mommy and daddy that we needed to be safe and put that tube back in to help you breathe. It would be better to be safe than sorry. Even though it shattered our hearts into a million pieces we knew she was right, and we would rather have you safe on that tube than risk something worse happening later.
You know what is next, you were there. The tube is back in now and you are resting again, breathing easily with a little help and building that strength back up so we can face another day tomorrow. And that is exactly what we are going to do, we are going to tackle tomorrow when it gets here and then the next day and then the day after that and before you know it you will be stronger and have some more practice under your belt and we will take that tube out again. The doctors said it may be a few days but we will try again and we will do even more to build you up and make you strong before we do.
Now today could be taken a lot of different ways, and there are even more ways to look at the events of today and draw meaning that really isn't there. So what I am going to tell you, and what I truly believe, is that we are back to flat. In my world of funny phrases and crazy graphs back to flat means we are just starting fresh and we didn't lose anything. It means we haven't gone backwards but just haven't made any progress despite some efforts to do so. So today, despite some valiant efforts on your part, we are back to flat. But you know what that means? That means tomorrow we start moving forward again, tomorrow we get above flat and we press on, that is what we do.
But for the time being you just lie back and rest, let the machine help your little lungs, let the nurses baby you, let daddy sing you a few songs, and rest some more. Sleep tight and dream some sweet dreams little man, dream of the days coming up when we are going to get to hold you and use that cool new cockpit your Grandpa put together for you, dream of our next battle with that tube and the way we are going to conquer it, because I know you can do it. If there is a little boy out there with the strength of will and heart to conquer this its you.
Your mommy and I sure do love you Connor, more than we can possibly put into words.
- Daddy
So it has been quite a day so far and its not even seven o'clock in the evening yet. As per usual you have decided that things will work your way and on your schedule, you have kept us on our toes, and you have made sure that every doctor in the cardiology unit stops in to say hello to you. Is this whole ordeal about you or what? If not then I think we need to discuss some parameters for the upcoming days/weeks/months. I'm just sayin....
I am sure you have heard me talk about it but your daddy is an energy trader. What is an energy trader? Well that is a fantastic question with a really long answer that starts with looking at weather maps and ends with looking at red and green numbers on a screen. There is plenty in between but for now we don't need to go into all those details and bore you to death. One of these days I'll show you the colorful maps and the crazy line graphs and the numbers, oh Billy the numbers, and we can talk about it as much as you can stand.
The important thing here is to know that daddy has a job that uses a vocabulary that doesn't make a lot of sense to the rest of the world. I use names like "Wylie Ridge" or "952 Rock" or "North Proctorville" and they mean something to a very select few people who also stare at computers like I do. I also say things like "I'm up for the month" or "that was quite a beating" and the meaning behind those phrases is NOTHING like you would expect it to be. People often times give me strange looks when I talk about work, but that could just be my hair so who knows.
Anyway, tying back into today. Today you pulled something that I will call "getting back to flat". When we got here all of the doctors told us that we would spend a lot of time taking steps forward and almost as much time taking steps backward. I know we have talked about this before so I'm sure you don't want me to go into that again, but today we kind of did that again.
You got that nasty breathing tube out yesterday and they put you in that crazy looking mask and then by midnight last night you were out of that thing and onto some regular nasal airflow. Well kind of regular, that is really just daddy's way of keeping it simple because I can neither remember nor spell some of the things they use around this joint. But you get the point, you were kicking butt again as usual. Then mommy and Grandma got to spend the whole morning with you, looking at that beautiful little face of yours. For the first time we all were enjoying those puffy cheeks and kind of puckered up lips.
Then you started having a little bit of trouble breathing and were breathing really fast. We didn't think too much of it because you were still very awake and VERY happy most of the time. But while your nurse was cleaning your I.V. line your alarms started to go bonkers and there were lights flashing and noises blaring. By the time I got up to see what was going on you had started to turn blue all over. My heart froze, my stomach climbed up into my throat, and I couldn't think for a second. As soon as I got my breath back I told the nurse to get the doctors and the rush started. It all happened in the blink of an eye.
The doctors came in, as you would have it, in crowds. They poured through the door and started taking blood samples and running numbers and giving you extra oxygen to make sure you got some of that color back. Thank God for them because they got you stable quickly and you were back to looking like yourself. Even though your color was better your doctor, Catherine, told mommy and daddy that we needed to be safe and put that tube back in to help you breathe. It would be better to be safe than sorry. Even though it shattered our hearts into a million pieces we knew she was right, and we would rather have you safe on that tube than risk something worse happening later.
You know what is next, you were there. The tube is back in now and you are resting again, breathing easily with a little help and building that strength back up so we can face another day tomorrow. And that is exactly what we are going to do, we are going to tackle tomorrow when it gets here and then the next day and then the day after that and before you know it you will be stronger and have some more practice under your belt and we will take that tube out again. The doctors said it may be a few days but we will try again and we will do even more to build you up and make you strong before we do.
Now today could be taken a lot of different ways, and there are even more ways to look at the events of today and draw meaning that really isn't there. So what I am going to tell you, and what I truly believe, is that we are back to flat. In my world of funny phrases and crazy graphs back to flat means we are just starting fresh and we didn't lose anything. It means we haven't gone backwards but just haven't made any progress despite some efforts to do so. So today, despite some valiant efforts on your part, we are back to flat. But you know what that means? That means tomorrow we start moving forward again, tomorrow we get above flat and we press on, that is what we do.
But for the time being you just lie back and rest, let the machine help your little lungs, let the nurses baby you, let daddy sing you a few songs, and rest some more. Sleep tight and dream some sweet dreams little man, dream of the days coming up when we are going to get to hold you and use that cool new cockpit your Grandpa put together for you, dream of our next battle with that tube and the way we are going to conquer it, because I know you can do it. If there is a little boy out there with the strength of will and heart to conquer this its you.
Your mommy and I sure do love you Connor, more than we can possibly put into words.
- Daddy
Wednesday, November 14, 2012
Tubetastic...
Connor,
So just when mommy and daddy thought they had this place figured out and were past most of the "scary" days you decided to knock us right back into the reality of hospital life, especially in an ICU. Over the course of the last two weeks we have all been gearing up for the big day when your breathing tube was to make its final appearance and we have been inching closer and closer each day.
Last week, after that gunky stuff in your lungs was identified and cleared up, the notion that you would get your tube out this week was thrown out during rounds. Mommy and I heard this and did everything we could to make sure that our hearts didn't jump too quickly or too far because we have heard such things before. By no fault of the doctors, or you, the other times we have planned on losing the breathing tube haven't worked out for one way or another. One time it was your lungs being just a little too young. The next time it was fevers. The next time it was your impending nose surgery. The last time it was the bacterial infection they found in your lungs. So needless to say we weren't going to believe it until we were facing it.
Well the weekend came and went and you did great. Monday flew by with a few breathing trials and you made them look easy. Yesterday arrived and you surprised everyone by tackling a twelve hour trial and despite how big it looked in its pads you took it down. So here we sat this morning, waiting with bated breath for the doctors to come around and give us the "OK" to get rid of that tube. Then lunch time came and we still had no visit from the doctors (your mommy owes me lunch because of that one by the way). Then they finally stopped by and said the day was indeed here. The tube is going bye bye.
But of course that meant that we needed to get the approval of the ENT doctors. Next we had to get the right equipment in your room (yes unfortunately you have another machine in your room now). Then we had to decide which type of funky, completely uncomfortable space contraption to put you in to help you breathe. After that we had to wait for the doctors to be available to make sure things went the right way. And then, finally, after all the waiting and hoping and praying, we waited a little bit longer because someone coming right out of the OR needed the doctors' help. But we have been there so no worries on that part.
Right after that though, the large group of scrub-clad medical professionals hovered over you and began the somewhat long and tedious process of taking that tube out of your mouth. and chest. I think mommy knew what was coming but daddy had no idea and finally had to leave because you looked so upset about the whole ordeal. I have learned to tolerate a lot since we got here to Children's but when you get that upset and I can't even get close enough to touch you I still have some problems trying to deal with the situation. So after a short "ten deep breaths", and by adding in "short" there I actually mean it was more like two hundred deep breaths, I came back into the room to see the most exciting thing.
Actually this isn't a very accurate portrayal of what I walked into because when I walked into the room your mommy was a complete mess emotionally (she held it together well on the outside but her eyes said otherwise) and you were back to that scary shade of purple. So it was exciting on two fronts, 1) I was terrified and frustrated and a million other things as I watched in what felt like complete helplessness as you writhed in agitation and 2) your breathing tube was nowhere to be seen!
As much as I wish I could say I focused on the good part I have to admit that I found myself in a very dark place as I leaned over your bed with my hands holding you tightly while you shook with frustration. Your heart rate wasn't coming down and your respiration rate was actually higher than I had ever seen it. Believe it or not your daddy was pretty scared that the tube was going to go back in. Don't worry though, after a very quick and painless (the sarcasm is actually puddling around those nine words right now) TWO HOURS you had gotten enough medicine and enough coddling to calm you down.
Then Grandma showed up just in time to save mommy and daddy from going bananas. She was nice enough to sit with you while we went to get our first meal of the day (we were afraid to leave just in case we would miss the tube coming out. in retrospect that was a HORRIBLE decision but as they say hindsight is twenty-twenty). We went downstairs and raided the salad bar and the grill and sat down, intent upon enjoying the short reprieve from your room for the day and hoping beyond hope that the calm down time would restore some of the life to our nerves. So as timing would have it we were getting ready to take our first bites and our phones buzzed. "He's awake and he's unhappy" popped up on our screens and we let out a collective sigh of utter defeat.
We inhaled our food and hurried back up to your room and took turns patting your back until mommy had to pump and daddy had to step out to listen to the night rounds. And when I did you will not guess what I saw... your buddy Dr. Nelson. It was like a breath of fresh air hit my lungs and I was ready to fight another day. He talked with me and the nurse and decided you could have just a little more medicine to help you calm down and as always, he was right on. The medicine worked and you chilled out.
Mommy went to take a little nap and Grandma and I are here watching you in total amazement as always. You seem to be plodding your way down the path of improvement, albeit at your own pace and in your own way but down that path you go. Stubborn and strong willed just like your father, making the path adjust to you at times when you don't quite agree with where its going, you keep putting one foot in front of the other. Your mommy is always worried about you being scared, I happen to believe that at this point you are probably pretty fearless and are more upset because we won't leave you the bleep alone. :)
Now get some rest little man. Sweet dreams.
I love you Connor.
- Daddy
So just when mommy and daddy thought they had this place figured out and were past most of the "scary" days you decided to knock us right back into the reality of hospital life, especially in an ICU. Over the course of the last two weeks we have all been gearing up for the big day when your breathing tube was to make its final appearance and we have been inching closer and closer each day.
Last week, after that gunky stuff in your lungs was identified and cleared up, the notion that you would get your tube out this week was thrown out during rounds. Mommy and I heard this and did everything we could to make sure that our hearts didn't jump too quickly or too far because we have heard such things before. By no fault of the doctors, or you, the other times we have planned on losing the breathing tube haven't worked out for one way or another. One time it was your lungs being just a little too young. The next time it was fevers. The next time it was your impending nose surgery. The last time it was the bacterial infection they found in your lungs. So needless to say we weren't going to believe it until we were facing it.
Well the weekend came and went and you did great. Monday flew by with a few breathing trials and you made them look easy. Yesterday arrived and you surprised everyone by tackling a twelve hour trial and despite how big it looked in its pads you took it down. So here we sat this morning, waiting with bated breath for the doctors to come around and give us the "OK" to get rid of that tube. Then lunch time came and we still had no visit from the doctors (your mommy owes me lunch because of that one by the way). Then they finally stopped by and said the day was indeed here. The tube is going bye bye.
But of course that meant that we needed to get the approval of the ENT doctors. Next we had to get the right equipment in your room (yes unfortunately you have another machine in your room now). Then we had to decide which type of funky, completely uncomfortable space contraption to put you in to help you breathe. After that we had to wait for the doctors to be available to make sure things went the right way. And then, finally, after all the waiting and hoping and praying, we waited a little bit longer because someone coming right out of the OR needed the doctors' help. But we have been there so no worries on that part.
Right after that though, the large group of scrub-clad medical professionals hovered over you and began the somewhat long and tedious process of taking that tube out of your mouth. and chest. I think mommy knew what was coming but daddy had no idea and finally had to leave because you looked so upset about the whole ordeal. I have learned to tolerate a lot since we got here to Children's but when you get that upset and I can't even get close enough to touch you I still have some problems trying to deal with the situation. So after a short "ten deep breaths", and by adding in "short" there I actually mean it was more like two hundred deep breaths, I came back into the room to see the most exciting thing.
As much as I wish I could say I focused on the good part I have to admit that I found myself in a very dark place as I leaned over your bed with my hands holding you tightly while you shook with frustration. Your heart rate wasn't coming down and your respiration rate was actually higher than I had ever seen it. Believe it or not your daddy was pretty scared that the tube was going to go back in. Don't worry though, after a very quick and painless (the sarcasm is actually puddling around those nine words right now) TWO HOURS you had gotten enough medicine and enough coddling to calm you down.
Then Grandma showed up just in time to save mommy and daddy from going bananas. She was nice enough to sit with you while we went to get our first meal of the day (we were afraid to leave just in case we would miss the tube coming out. in retrospect that was a HORRIBLE decision but as they say hindsight is twenty-twenty). We went downstairs and raided the salad bar and the grill and sat down, intent upon enjoying the short reprieve from your room for the day and hoping beyond hope that the calm down time would restore some of the life to our nerves. So as timing would have it we were getting ready to take our first bites and our phones buzzed. "He's awake and he's unhappy" popped up on our screens and we let out a collective sigh of utter defeat.
We inhaled our food and hurried back up to your room and took turns patting your back until mommy had to pump and daddy had to step out to listen to the night rounds. And when I did you will not guess what I saw... your buddy Dr. Nelson. It was like a breath of fresh air hit my lungs and I was ready to fight another day. He talked with me and the nurse and decided you could have just a little more medicine to help you calm down and as always, he was right on. The medicine worked and you chilled out.
Mommy went to take a little nap and Grandma and I are here watching you in total amazement as always. You seem to be plodding your way down the path of improvement, albeit at your own pace and in your own way but down that path you go. Stubborn and strong willed just like your father, making the path adjust to you at times when you don't quite agree with where its going, you keep putting one foot in front of the other. Your mommy is always worried about you being scared, I happen to believe that at this point you are probably pretty fearless and are more upset because we won't leave you the bleep alone. :)
Now get some rest little man. Sweet dreams.
I love you Connor.
- Daddy
Tuesday, November 13, 2012
That wasn't such a small tube after all
Hi there little buddy,
Remember how we told you they were just going to put a little tube in your nose last week to make sure it didn't heal shut after surgery? Well turns out that although the tube looked small from the outside it wasn't so tiny. Early this morning your daddy headed to the hospital while mommy got ready and found you in a bit of a fit. No one knows exactly why you were so upset but maybe you knew that ENT was on the way to remove that nose tube. Daddy said after seeing the size of the tube they took out that you had every reason to be angry. As always you were a trooper and handled it like a champ. I sure am proud of you.
Most people would think that was enough work for one little guy in a day but the doctors had bigger plans for you. Today they decided you needed to do some more breathing practice to gear of for taking out that big tube. Last night you did well on your breathing trial for 6 hours and mommy couldn't imagine what more they would want but today you put in a full day of 12 great hours. That's a lot of work buddy.
Next on your busy schedule was a visit from both the physical and occupational therapy. While practicing your breathing you managed to exercise and even sit up some with the therapists. This is another first and you seemed to really enjoy it. You were wide awake and moving your little head all over the place. It was like you just realized how your head moved on your neck and were able to look at the world from an upright position. Exciting stuff !
Tube removal, breathing practice, therapy, and multiple visits from the doctors would make anyone tired. Luckily you are superman and handled it all like a pro. Now we're all ready for some sleep to rest up for another big day tomorrow. Tomorrow is the day they plan to take the biggest and most bothersome of your tubes out, the breathing tube. Don't get too nervous buddy. The doctors tell us that it sometimes takes a few trials to get rid of it for good but mommy and daddy are hoping this is a one shot deal. We love you very much and today is just another example of how amazing you are. Sleep tight little superhero. Mommy loves you and is more proud then I can say.
I love you Connor,
Mommy
Remember how we told you they were just going to put a little tube in your nose last week to make sure it didn't heal shut after surgery? Well turns out that although the tube looked small from the outside it wasn't so tiny. Early this morning your daddy headed to the hospital while mommy got ready and found you in a bit of a fit. No one knows exactly why you were so upset but maybe you knew that ENT was on the way to remove that nose tube. Daddy said after seeing the size of the tube they took out that you had every reason to be angry. As always you were a trooper and handled it like a champ. I sure am proud of you.
Most people would think that was enough work for one little guy in a day but the doctors had bigger plans for you. Today they decided you needed to do some more breathing practice to gear of for taking out that big tube. Last night you did well on your breathing trial for 6 hours and mommy couldn't imagine what more they would want but today you put in a full day of 12 great hours. That's a lot of work buddy.
Next on your busy schedule was a visit from both the physical and occupational therapy. While practicing your breathing you managed to exercise and even sit up some with the therapists. This is another first and you seemed to really enjoy it. You were wide awake and moving your little head all over the place. It was like you just realized how your head moved on your neck and were able to look at the world from an upright position. Exciting stuff !
I love you Connor,
Mommy
Monday, November 12, 2012
Warp speed Mr. Sulu...
Connor,
Well hello there little man. Your mommy and daddy have been off schedule a little bit the last couple days and because of that we have been getting mixed on who is writing your notes and when. I promise we will get it together soon buddy. In the mean time I hope you can forgive us when we skip a day here and there, I swear its not us forgetting to tell you things, its actually just that we are getting to tell you some of those things while you are awake and looking at us.
You have spent more time awake and looking around with me lately but you have been getting a little time with mommy too. I think my schedule has just been a little bit more in sync with your schedule the last few days. But if there is one thing you have taught me about schedules lately its that they change constantly and your schedule is, how you may say, fluid? That is kind of a nice way of saying that your schedule changes any time you want it to change no matter what anyone else thinks. Considering what you have been through I think you deserve that though, so no complaints here.
So before I get to our little anecdote for the night I will give you a little update on what you have been doing the last day and a half. You spent most of yesterday sleeping and then apparently spent a good chunk of last night awake, or at least that is what we gather from the fact that they had to give you some sleepy medicine last night. But this morning you were awake when daddy got there and we got to play around a little bit before you took your nap. We even did a little bit of your calisthenics to make sure you were good and ready to sleep.
You are also making some progress on the red man front. It would appear that whatever it is that has been making you blush lately is starting to dissipate and you are coming back to a more normal skin tone. The doctors are all trying to figure it out now so that they can claim the fame of being "the one who solved the puzzle" but they are still stumped. Our deal is still intact though, so you just take your time and do it on your schedule like we talked about a minute ago.
Your breathing is getting better too. Your lungs look awesome on your x-rays and your breathing rates are right where they should be. The doctors decided you were ready for some trials again today and you have been kicking their butt. You did a "short" two hour trial and all your numbers were great so after a little rest they decided to put you on a four hour trial and you have been blasting right through that one too. You were both awake and asleep for a long time during that one and you seemed to be doing just fine on your own. You know what that means? Shhhh.... lets not spoil it.
Tomorrow morning you are going to be less one tube. Well, kind of. You see you have this itty bitty little piece of a tube in your nose right now to make sure it stays open and you have an even smaller piece of that tube in the other side of your nose. Those two little pieces are tied together (yep through your nose, OUCH) to keep them in place and make sure that your nose heals up just like its supposed to. And tomorrow, if things go like we think they will, you will get both of those little pieces out of your nose early tomorrow. So hopefully tomorrow night when mommy or I sits down to write your not we will have some good news about those tubes going bye bye.
And now for the little side story that ties into the last several days. Drum roll please..... Well maybe its not worth a drum roll but its something that your daddy and your uncle Sebastian and your Pappaw share, and that is a love of the show (and movies) Star Trek. In that old, and often times cheesy, show they had the ability to travel at warp speed through space. Warp speed is basically just a way of saying they are going super crazy fast and lately that is kind of how big chunks of the days have been going for mommy and daddy.
The big difference though, is that the days not only go in warp speed, they also go in reverse warp speed. I just made that one up but it ties in nicely here because it is a way of saying that some times the days drag on and on and take FOREVER. Like last Wednesday for instance. That was the day you had your first little blow up last week. That day lasted at least a week and the next twenty-four hours after that took even longer because we were waiting and waiting and waiting to see if the doctors could figure out what was going on and why you were so red and why your lungs weren't working. Since they figured out the lung problems and got them all fixed we have just been waiting to get to your next big step and on days like that (kind of like today) we find ourselves blinking and losing entire hours of our days.
So we keep going back and forth and back and forth in warp speed and reverse warp speed as we get closer and closer to that elusive day where your breathing tube comes out. But if it means we get to that day then "Warp speed Mr. Sulu!!". We will take it. You keep your schedule going the way you see fit just so long as we can agree to keep moving forward.
Now you keep sleeping and get yourself ready for the big days coming up. Sweet dreams little man.
I love you Connor.
- Daddy
Well hello there little man. Your mommy and daddy have been off schedule a little bit the last couple days and because of that we have been getting mixed on who is writing your notes and when. I promise we will get it together soon buddy. In the mean time I hope you can forgive us when we skip a day here and there, I swear its not us forgetting to tell you things, its actually just that we are getting to tell you some of those things while you are awake and looking at us.
You have spent more time awake and looking around with me lately but you have been getting a little time with mommy too. I think my schedule has just been a little bit more in sync with your schedule the last few days. But if there is one thing you have taught me about schedules lately its that they change constantly and your schedule is, how you may say, fluid? That is kind of a nice way of saying that your schedule changes any time you want it to change no matter what anyone else thinks. Considering what you have been through I think you deserve that though, so no complaints here.
So before I get to our little anecdote for the night I will give you a little update on what you have been doing the last day and a half. You spent most of yesterday sleeping and then apparently spent a good chunk of last night awake, or at least that is what we gather from the fact that they had to give you some sleepy medicine last night. But this morning you were awake when daddy got there and we got to play around a little bit before you took your nap. We even did a little bit of your calisthenics to make sure you were good and ready to sleep.
You are also making some progress on the red man front. It would appear that whatever it is that has been making you blush lately is starting to dissipate and you are coming back to a more normal skin tone. The doctors are all trying to figure it out now so that they can claim the fame of being "the one who solved the puzzle" but they are still stumped. Our deal is still intact though, so you just take your time and do it on your schedule like we talked about a minute ago.
Your breathing is getting better too. Your lungs look awesome on your x-rays and your breathing rates are right where they should be. The doctors decided you were ready for some trials again today and you have been kicking their butt. You did a "short" two hour trial and all your numbers were great so after a little rest they decided to put you on a four hour trial and you have been blasting right through that one too. You were both awake and asleep for a long time during that one and you seemed to be doing just fine on your own. You know what that means? Shhhh.... lets not spoil it.
Tomorrow morning you are going to be less one tube. Well, kind of. You see you have this itty bitty little piece of a tube in your nose right now to make sure it stays open and you have an even smaller piece of that tube in the other side of your nose. Those two little pieces are tied together (yep through your nose, OUCH) to keep them in place and make sure that your nose heals up just like its supposed to. And tomorrow, if things go like we think they will, you will get both of those little pieces out of your nose early tomorrow. So hopefully tomorrow night when mommy or I sits down to write your not we will have some good news about those tubes going bye bye.
And now for the little side story that ties into the last several days. Drum roll please..... Well maybe its not worth a drum roll but its something that your daddy and your uncle Sebastian and your Pappaw share, and that is a love of the show (and movies) Star Trek. In that old, and often times cheesy, show they had the ability to travel at warp speed through space. Warp speed is basically just a way of saying they are going super crazy fast and lately that is kind of how big chunks of the days have been going for mommy and daddy.
The big difference though, is that the days not only go in warp speed, they also go in reverse warp speed. I just made that one up but it ties in nicely here because it is a way of saying that some times the days drag on and on and take FOREVER. Like last Wednesday for instance. That was the day you had your first little blow up last week. That day lasted at least a week and the next twenty-four hours after that took even longer because we were waiting and waiting and waiting to see if the doctors could figure out what was going on and why you were so red and why your lungs weren't working. Since they figured out the lung problems and got them all fixed we have just been waiting to get to your next big step and on days like that (kind of like today) we find ourselves blinking and losing entire hours of our days.
So we keep going back and forth and back and forth in warp speed and reverse warp speed as we get closer and closer to that elusive day where your breathing tube comes out. But if it means we get to that day then "Warp speed Mr. Sulu!!". We will take it. You keep your schedule going the way you see fit just so long as we can agree to keep moving forward.
Now you keep sleeping and get yourself ready for the big days coming up. Sweet dreams little man.
I love you Connor.
- Daddy
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