Hey Buddy,
Well here we are again, you and me, chillin' in the room together while you take a little napsky. It was recently brought to my attention that we haven't written you a note in a couple days so perhaps its time we catch up on some of the really exciting things that have been going on. It has been almost four days since your last note so there has got to be tons of great stuff to talk about.
About that.... Its actually been a pretty quiet week this week. Dr. Ilias has done a fantastic job of getting you back on track and moving forward again. You are starting back with your milkshakes, your sedation is coming down again, you are back to doing your physical therapy and occupational therapy, you are even in line to have someone come see you for some hearing aids. But as far as anything much actually happening this week, well, there hasn't been much to tell.
You have had some pretty quiet days and nights and the doctors have been cautiously optimistic that maybe they have gotten you over whatever hill you were fighting to climb the week before. We still don't have any clear picture of what was going on with you and your skyrocketing heart rate but whatever it was seems to either be gone or under control now. Mommy and I have a theory that you just wanted to send Dr. Ilias home with one less thing to worry about so you cleaned up your act for him. He has saved the day a few times so I think that is a pretty fair thing to do. How about a little less drama in the build up next time?
As part of your less angry state this week we have been introducing some new toys to your bed. You now have a glow worm courtesy of Grandma and a slew of other toys that you have been able to grab on to and even stick in your mouth. Who knew we would be so excited about you grabbing things and slobbering on them? Certainly not I, but according to your OT friend Julie that is a pretty big deal and you are doing a great job of it. So that means we are going to keep bringing in more toys and let you get a taste of all of them. (See what I did there?)
Mommy and I have been trying to get some of the the things floating around in the rest of our lives put into some kind of order so that when the day comes for you to get out of here we won't be scrambling. So that means we spent a little while away yesterday and this morning as we unpacked and repacked some of the stuff piled into boxes in Grandma and Grandpa's basement. We may seem like a completely disorganized mess right now but I promise we will get it together one of these days buddy. We finally have a bed for you to sleep in, we may have a line on a changing table too so that could be exciting I guess. Here again I ask "who knew....". Now we have to go through the stuff that we bought for the first 6 months of your life and rethink what we need and don't need because so much of that stuff just isn't going to fit or work anymore. Guess that means we are going to have to go back to those baby stores. All I can say is yikes.
But for now lets not worry about any of that stuff. Now you just sleep and keep on growing. The docs say that growing is the single best thing you can do for your health right now and I am proud to say you are back to doing that again. Hopefully no more hiccups and this time you can keep the weight you gain.
Mommy and daddy are so proud of you Connor. We probably say it a lot but we are amazed at how you seem to be able to just keep on going and fighting through just about anything. You are pretty tough if I do say so myself.
We love you Connor.
- Daddy
Sunday, February 17, 2013
Wednesday, February 13, 2013
Where to start...
Bubba,
The last five days since our last note have been some of the most intense days of your short life, and some of the most intense of your mommy and daddy's slightly longer lives. But where do we start with this little tale? Do we start on Saturday when things got really bad for the first time? Or do we start on Thursday when your uncontrollable heart rate kept us from moving to the TCC? Do we start a week or two ago when we start talking about the TCC and you clearly decided that you weren't ready for all that? Since I have only so much patience for recounting the bad times I will start where your mommy left off on Saturday.
Saturday was a LONG day. Your heart rate was up and you were mostly inconsolable the entire day. We spent periods of time thinking maybe it had passed and we were on the upswing but just as soon as your mommy or I would walk away from you and try to sit down and rest we would look up to see your monitors flashing and your hands flailing. After mommy wrote her note to you we finally decided we better try to get some sleep because it seemed like there was going to be no slowing you down when you woke back up. That was the latest we had been at the hospital in a long time.
Sunday morning I got up and came over here early to spend some time with you and let mommy rest a little bit. She does so much by being here every morning with you that I like to make sure she gets a morning or two when she can relax and stay in bed a little longer or even just take time drying her hair without having to rush over here to check on you. During our morning Dr. Marino came in and wanted to talk about some of the plans for you based on what had happened during the day Saturday and over night Saturday night. Turns out you weren't much better for your nurse Saturday night than you were for us Saturday during the day. Not only were we there late but we probably talked to your night nurse three or four times in the middle of the night too. At the end of the night she finally had to give you a dose of your serious sleepy medicine.
That stuff has always knocked you out cold. But on Sunday you had other plans. You did nap for a little while and you did calm down a bit but your heart rate, even in a dead sleep, wouldn't drop below 140 or 150. You normally pitter patter around 90 when you are sleeping by the way. So the day started with Dr. Marino and I talking about some of the things that could be going on to get you so worked up. We went through system after system, trying to figure out something that would not only agitate you but keep your heart rate up so high even when you slept. He ordered a lot of tests, he looked into everything he could. We found nothing. The day continued and as it did your heart rate continued to rise.
Your grandma came to visit for a while and you weren't completely upset while she was here so that little stint of time was nice. Shortly after Grandma left you decided it was time to get some attention. For the first time I can remember your mommy and I almost lost our tempers and started screaming for doctors. You were so upset and your heart rate wouldn't stop climbing. We tried and tried to do everything we could to get it down but nothing worked. No amount of medicine and no amount of soothing had even the slightest impact on you. Finally, after over an hour of your heart rate fluctuating between 180 and 200+, we saw Dr. Morales in the hall and waved him in. He looked you up and down and ordered some tests himself but unfortunately couldn't do anything to make things better.
It wasn't until a few minutes later that the fellow on duty for the night finally made it in your room to see you. At that point you were bright red and moving every part of your body in a different direction like a dog shaking after a bath. Your heart rate touched 210 a couple times and she finally ordered the serious medicine again. This time with an extra shot of some sedation to tide you over until the heavy stuff kicked in. After an hour you were finally calm. The plan for the remainder of the evening was to give you the heavy stuff every four hours in an attempt to get your heart rate down and keep it down over night. The good news is that it did keep you calm over night.
The bad news is that the heavy medicine you were receiving is not very good for you and should not be given for long periods of time. The next problem was going to be to determine how to keep you from going through the same cycle over and over again. Dr. Ilias is up to bat this week so it was his turn Monday morning to take a swing at the curve ball that struck out Dr. Marino over the weekend. Dr. Ilias started the day by talking to mommy and I and explaining his plan for the week in detail to make sure we were in agreement with it before he told his team how they were going to proceed. We agreed with everything he said and put our trust in him to do what he thought was best.
He has started you on new medicine, then took it away, then started you on another one, then upped that one, and now he is backing another one down that you have been on for a while. We got a few extra pictures of your heart and your stomach and your chest and all kinds of stuff to check on those. We had doctors from all over the hospital come to see you and one by one they told us they couldn't find anything that would cause your agitation. It wasn't that mommy and I wanted the doctors to find something wrong but we wanted so badly to be able to start helping you with whatever it was that was driving you nuts. But the search has been fruitless so far.
You have had a better day today, one that I would call a good day (relative to the past week for sure). We aren't quite sure yet what it is that has helped you so much the last twenty-four hours but we are hoping that whatever it is keeps on helping. Last week we wanted to know the answer to this riddle, this week we just want the game to end whether we know the answer or not. As long as you can get back to being healthy and happy and moving forward we will be fine with not knowing what happened last week.
So here at the end of our note we have to ask ourselves again, "where do we start?". Not what part of the story do we tell first but how far back have we come in the last week and where do we start when it comes to trying to make progress again. We have lost a lot of ground in the last four or five days, many many steps backward, but hopefully sometime this week we can figure out either what has been going on or, if we can't figure that out, how to get past this and make progress in spite of it. I don't like to make things sound gloomy but these last several days have been some very very dark ones and a little light, no matter its source, would go a long way right now. So keep fighting buddy, keep up the good work, and we will keep doing everything we can to help you.
Mommy and I love you Connor.
- Daddy
P.S. it has been brought to my attention that I have not been very good about posting pictures lately and your fans are requesting that this trend change. so here you go.
The last five days since our last note have been some of the most intense days of your short life, and some of the most intense of your mommy and daddy's slightly longer lives. But where do we start with this little tale? Do we start on Saturday when things got really bad for the first time? Or do we start on Thursday when your uncontrollable heart rate kept us from moving to the TCC? Do we start a week or two ago when we start talking about the TCC and you clearly decided that you weren't ready for all that? Since I have only so much patience for recounting the bad times I will start where your mommy left off on Saturday.
Saturday was a LONG day. Your heart rate was up and you were mostly inconsolable the entire day. We spent periods of time thinking maybe it had passed and we were on the upswing but just as soon as your mommy or I would walk away from you and try to sit down and rest we would look up to see your monitors flashing and your hands flailing. After mommy wrote her note to you we finally decided we better try to get some sleep because it seemed like there was going to be no slowing you down when you woke back up. That was the latest we had been at the hospital in a long time.
Sunday morning I got up and came over here early to spend some time with you and let mommy rest a little bit. She does so much by being here every morning with you that I like to make sure she gets a morning or two when she can relax and stay in bed a little longer or even just take time drying her hair without having to rush over here to check on you. During our morning Dr. Marino came in and wanted to talk about some of the plans for you based on what had happened during the day Saturday and over night Saturday night. Turns out you weren't much better for your nurse Saturday night than you were for us Saturday during the day. Not only were we there late but we probably talked to your night nurse three or four times in the middle of the night too. At the end of the night she finally had to give you a dose of your serious sleepy medicine.
That stuff has always knocked you out cold. But on Sunday you had other plans. You did nap for a little while and you did calm down a bit but your heart rate, even in a dead sleep, wouldn't drop below 140 or 150. You normally pitter patter around 90 when you are sleeping by the way. So the day started with Dr. Marino and I talking about some of the things that could be going on to get you so worked up. We went through system after system, trying to figure out something that would not only agitate you but keep your heart rate up so high even when you slept. He ordered a lot of tests, he looked into everything he could. We found nothing. The day continued and as it did your heart rate continued to rise.
Your grandma came to visit for a while and you weren't completely upset while she was here so that little stint of time was nice. Shortly after Grandma left you decided it was time to get some attention. For the first time I can remember your mommy and I almost lost our tempers and started screaming for doctors. You were so upset and your heart rate wouldn't stop climbing. We tried and tried to do everything we could to get it down but nothing worked. No amount of medicine and no amount of soothing had even the slightest impact on you. Finally, after over an hour of your heart rate fluctuating between 180 and 200+, we saw Dr. Morales in the hall and waved him in. He looked you up and down and ordered some tests himself but unfortunately couldn't do anything to make things better.
It wasn't until a few minutes later that the fellow on duty for the night finally made it in your room to see you. At that point you were bright red and moving every part of your body in a different direction like a dog shaking after a bath. Your heart rate touched 210 a couple times and she finally ordered the serious medicine again. This time with an extra shot of some sedation to tide you over until the heavy stuff kicked in. After an hour you were finally calm. The plan for the remainder of the evening was to give you the heavy stuff every four hours in an attempt to get your heart rate down and keep it down over night. The good news is that it did keep you calm over night.
The bad news is that the heavy medicine you were receiving is not very good for you and should not be given for long periods of time. The next problem was going to be to determine how to keep you from going through the same cycle over and over again. Dr. Ilias is up to bat this week so it was his turn Monday morning to take a swing at the curve ball that struck out Dr. Marino over the weekend. Dr. Ilias started the day by talking to mommy and I and explaining his plan for the week in detail to make sure we were in agreement with it before he told his team how they were going to proceed. We agreed with everything he said and put our trust in him to do what he thought was best.
He has started you on new medicine, then took it away, then started you on another one, then upped that one, and now he is backing another one down that you have been on for a while. We got a few extra pictures of your heart and your stomach and your chest and all kinds of stuff to check on those. We had doctors from all over the hospital come to see you and one by one they told us they couldn't find anything that would cause your agitation. It wasn't that mommy and I wanted the doctors to find something wrong but we wanted so badly to be able to start helping you with whatever it was that was driving you nuts. But the search has been fruitless so far.
You have had a better day today, one that I would call a good day (relative to the past week for sure). We aren't quite sure yet what it is that has helped you so much the last twenty-four hours but we are hoping that whatever it is keeps on helping. Last week we wanted to know the answer to this riddle, this week we just want the game to end whether we know the answer or not. As long as you can get back to being healthy and happy and moving forward we will be fine with not knowing what happened last week.
So here at the end of our note we have to ask ourselves again, "where do we start?". Not what part of the story do we tell first but how far back have we come in the last week and where do we start when it comes to trying to make progress again. We have lost a lot of ground in the last four or five days, many many steps backward, but hopefully sometime this week we can figure out either what has been going on or, if we can't figure that out, how to get past this and make progress in spite of it. I don't like to make things sound gloomy but these last several days have been some very very dark ones and a little light, no matter its source, would go a long way right now. So keep fighting buddy, keep up the good work, and we will keep doing everything we can to help you.
Mommy and I love you Connor.
- Daddy
P.S. it has been brought to my attention that I have not been very good about posting pictures lately and your fans are requesting that this trend change. so here you go.
In case the nurses forget who you are...
Mommy needed you in red this week...
"This is what I think of your pictures..."
Saturday, February 9, 2013
So close yet so far...
Hi little buddy,
Thursday morning started off pretty rough for mommy. She had a pretty bad feeling but assumed it was just because she was a little nervous about your big move out of the ICU. With some words of encouragement over the phone from your daddy I headed to the hospital and geared up for the day. You were resting peacefully when I walked in and the nurse said you had a pretty quiet night. The doctors rounded on you early and were joined by your new doctors as part of the "hand off." Rounds ended with Dr. Marino hugging mommy and saying he was really excited for you but kind of sad for himself because he was going to miss his little buddy. Mommy and several of the team members got a little teary eyed. As usual Grandma was here to help mommy and we packed up all your goodies and waited for the green light.
Within five minutes you were red faced and not happy. Your heart rate started climbing and we all assumed this was a Connor fit. Some the nurses even joked it was your way of rebelling against the move. However it felt like a little more than a fit. Lately mommy has gotten pretty good at finding out why you are upset (and to your credit there is usually a reason) and fixing it. It may take a little while but between mommy, daddy, grandma, the nurses and the respiratory therapists and we are typically able to settle things down and move on with your day. Thursday that wasn't the case. Mommy tried EVERYTHING including some of your favorite medicine. It was about time to move when mommy really felt like something was wrong and got pretty worried. The nurses could tell I was upset and went to get Dr. Marino.
Dr. Marino is a great guy and ordered some tests to check everything out before you made your grand exit. He said he wasn't too worried but wanted to make sure you were in tip top shape (and to be honest I think he wanted to help mommy feel better). Turns out your belly x-ray showed what looked like a possible blockage. Your little heart rate stayed up decently high the rest of the afternoon even when you were sleeping. Mommy went downstairs to take a little break with her good friend Steph and daddy decided to give you a bath. Shortly into your routine of a bath, g-tube care, and trach care things started moving and you filled your diaper. Daddy said you were instantly a happy man and your heart rate dropped back down within minutes. You were smiling and playing and the follow-up x-ray showed all was well in your belly.
Mommy and daddy went to bed Thursday night thinking we were in the clear and would probably be moving on Friday. Friday morning mommy arrived at the hospital as usual and Dr. Marino met me in your room almost instantly. He said the morning x-ray showed what could be some air in your intestines (the fancy word for that is pneumotosis). He wasn't convinced that it was truly the case (in fact he felt very strongly that it wasn't) but the radiologist said she couldn't rule it out so on the report it went. By reporting that they have to follow a protocol that includes holding your feeds for a week and give you antibiotics. That means no move to the TCC (transitional care center) and no milkshakes for you. Big time bummer.
Friday went off without much activity and I think everyone was ok with that. You were happy, calm and full of smiles. Several of your favorite nurses and therapists stopped by to say they were glad to see you but sorry we weren't able to move forward. Grandma helped give you a good scrub down before she headed out for the day and you were quiet enough at night that mommy and daddy were able to go have some dinner with Uncle Scooter and Auntie Beth. We will certainly chalk Friday up as a good day.
Today on the other hand hasn't been your best day. You have been pretty upset and your little heart rate pumping away. You haven't been exactly mad since early this morning but you can't seem to be still for more than a minute. We thought for sure that after Pappaw played with you and Auntie Beth gave you a quick bath that you would crash but as usual you proved us wrong. After being awake and moving for almost all of the past seven hours Dr. Marino said enough already and gave you an extra dose of medicine. Being the stubborn boy you are it barely slowed you down so that's right he gave you another. Believe it or not that didn't do the trick so he threw a third one your way. I hate to see you get all that medicine but I know that your heart rate needs to slow down and you desperately need some rest. Things are finally starting to settle out now and I imagine that you are on your way to a long visit in sleepy town.
As much as we want you to move forward and out of the ICU we are very thankful that if you were going to have troubles it happened here where the doctors know you like the back of their hands. We feel very blessed to be surrounded by such amazing people who are so invested in our little boy. There is a saying that mommy and daddy have been using for a while but it's become pretty mainstream here in the ICU after this week. It's called "Connor Time." We will move forward, out of ICU, down to TCC, and eventually home all in "Connor Time." Rest now little man, you deserve it. I pray you have lots of peaceful dreams and recoup from whatever has been troubling you all day.
Here's a picture of you from earlier today
A cute one from the other day
Mommy and daddy love you more than ever.
XOXO
-Mommy
Tuesday, February 5, 2013
New normal...
Hey there Bubba,
Well it appears that our plan to keep up with writing notes every day has been less than successful. The good news about that however, is that you are doing better and there is so much less news on a daily basis that we really just don't have too much to report to your friends and fans. Instead we have decided it might be best to just wait a day or two and then once we have a few days worth of stories to tell on you we can share them with everyone else.
So the last few days have been full of information and learning. They have also been full of getting used to a lot of new things, and not all of those things are happy or comforting. Sometimes these new things sneak their way in disguised as good things but then after they are here they show their true colors and we realize that while they may be good they are also going to be challenging and a bit terrifying.
We have told you about all the things we have been learning the past few weeks as we get ready for you to venture out into other parts of the world but if you can believe it we have actually been learning even more each day. In the last couple of days we have become proficient at cleaning your g-tube and trach, cath'ing you, even suctioning out your secretions. Now we are learning to give your medications through your g-tube and get your feeding pump ready when its time to feed and cleaned up when its time to stop. Those things really aren't that big of a deal but just like with everything else we are learning they are going to take some practice before they become routine.
Today we had a first though. Your mommy changed your trach out for the first time today. Now the trach itself has been changed since you got it but this was the first time mommy and daddy have had anything to do with changing your trach and we were not overly excited to jump right into it. We are OF COURSE more than happy to learn and always ready to do so in a hands on manner when it comes to you but this was one that had been built up so much that it was more than a little intimidating. Since it was time for you to get a trach we have heard how important it is to learn how to take one out and quickly get the new one in without a hiccup. We have been told that we will have to practice and practice and practice so that we will be able to get it right. We were warned that it may not be the easiest thing to do since you have such a tiny little neck right now and your chin and cheeks are so puffy. Ppppssssshhhhh. Mommy's got this.
Daddy helped by holding onto your tubes while mommy just took charge and grabbed your old trach, pulled it out and quickly popped your new one in. She did it in the blink of even the smallest eye and before you knew what was going on we were in good shape. Apparently this is going to become such a routine thing for us going forward that we won't even think of it as an event, just as Tuesday. Who knew something so foreign could seem so normal?
Now we are getting ourselves geared up for a permanent field trip. The doctors have been talking for the last two weeks about getting you moved out of the CICU and down into the transitional care center (TCC) where we will learn even more about your trach and whether or not you will need a vent. They are also going to teach us how to hold you and play with you and even get you some belly time. I know that sounds exciting and from what I hear it will be a pretty big deal for your development so mommy and I cannot wait to see how well you do with it.
But here was the sneaky part. All of those things sound really good but what we didn't think about was the fact that we are going to have to learn all new nurses and RT's and PT's and OT's and even the nice ladies that sign us in and out of your POD are going to be replaced by a counterpart in the TCC. I know those aren't necessarily bad things but they are kind of scary things. You aren't the only one who has had his hand held these last several months, your mommy and I have also been blessed with some of the most amazing people we could possibly imagine helping us through what has been such a trying time and the thought of not having those hands holding ours anymore is scary. But we know that is the next step to get you ready to go home, or at least to grandma and grandpa's house for a while, so we are ready to face whatever it is. I mean after all, it will only be a matter of time before that places feels pretty normal to us I'm sure.
Something else we are facing right now that I would have never EVER thought of as scary is the possibility of moving out of Ronald Mcdonald next door. We aren't sure that we will have to but there is a chance that once you leave the CICU mommy and daddy won't be eligible to stay there any longer and will have to go stay with grandma and grandpa at night. Sure, that sounds like a good thing right? We will have our own bed, a kitchen we can use whenever we want, television that has more than a handful of channels, and couches to sit on when we just want to relax. But we won't be very close to you at night and that is a pretty terrifying thing.
If we look at the other side of that coin we will find that perhaps this is just a step to get us ready for what will eventually become our new "normal". To quote a football commentator that mommy enjoyed listening to during the Super Bowl the other day, "we are coming very close to realizing our dream". Very soon we could get the chance to get you out of this hospital and into a home for the first time. That means we need to figure out where you will sleep, what kind of medical equipment we will need to help you, what kind of schedule we will need to be on to make sure you have all the help you need, and a million other things that we haven't even begun to think of yet. So sometime this coming weekend we are going to have to make a trip up to grandma and grandpa's house so that we can start getting some of these things together and set up our new normal.
So don't be scared of all the changes that are coming buddy, whatever they are just remember that no matter how different they may seem at first they are just steps to get us to the place we eventually want to be... in our own home, on our own couch, watching our own tv, cuddling with our very own little man. We may not get back to "normal" life but we will have our own version of normal and it is going to be pretty awesome if it involves the three of us together at home.
Get some rest little man, sleep tight and keep on working. I promise mommy and I will be working as well, trying to get everything ready for you so when you tell us its time we will be ready to take you home. We are so very very proud of you Connor.
We love you Connor.
- Daddy
Well it appears that our plan to keep up with writing notes every day has been less than successful. The good news about that however, is that you are doing better and there is so much less news on a daily basis that we really just don't have too much to report to your friends and fans. Instead we have decided it might be best to just wait a day or two and then once we have a few days worth of stories to tell on you we can share them with everyone else.
So the last few days have been full of information and learning. They have also been full of getting used to a lot of new things, and not all of those things are happy or comforting. Sometimes these new things sneak their way in disguised as good things but then after they are here they show their true colors and we realize that while they may be good they are also going to be challenging and a bit terrifying.
We have told you about all the things we have been learning the past few weeks as we get ready for you to venture out into other parts of the world but if you can believe it we have actually been learning even more each day. In the last couple of days we have become proficient at cleaning your g-tube and trach, cath'ing you, even suctioning out your secretions. Now we are learning to give your medications through your g-tube and get your feeding pump ready when its time to feed and cleaned up when its time to stop. Those things really aren't that big of a deal but just like with everything else we are learning they are going to take some practice before they become routine.
Today we had a first though. Your mommy changed your trach out for the first time today. Now the trach itself has been changed since you got it but this was the first time mommy and daddy have had anything to do with changing your trach and we were not overly excited to jump right into it. We are OF COURSE more than happy to learn and always ready to do so in a hands on manner when it comes to you but this was one that had been built up so much that it was more than a little intimidating. Since it was time for you to get a trach we have heard how important it is to learn how to take one out and quickly get the new one in without a hiccup. We have been told that we will have to practice and practice and practice so that we will be able to get it right. We were warned that it may not be the easiest thing to do since you have such a tiny little neck right now and your chin and cheeks are so puffy. Ppppssssshhhhh. Mommy's got this.
Daddy helped by holding onto your tubes while mommy just took charge and grabbed your old trach, pulled it out and quickly popped your new one in. She did it in the blink of even the smallest eye and before you knew what was going on we were in good shape. Apparently this is going to become such a routine thing for us going forward that we won't even think of it as an event, just as Tuesday. Who knew something so foreign could seem so normal?
Now we are getting ourselves geared up for a permanent field trip. The doctors have been talking for the last two weeks about getting you moved out of the CICU and down into the transitional care center (TCC) where we will learn even more about your trach and whether or not you will need a vent. They are also going to teach us how to hold you and play with you and even get you some belly time. I know that sounds exciting and from what I hear it will be a pretty big deal for your development so mommy and I cannot wait to see how well you do with it.
But here was the sneaky part. All of those things sound really good but what we didn't think about was the fact that we are going to have to learn all new nurses and RT's and PT's and OT's and even the nice ladies that sign us in and out of your POD are going to be replaced by a counterpart in the TCC. I know those aren't necessarily bad things but they are kind of scary things. You aren't the only one who has had his hand held these last several months, your mommy and I have also been blessed with some of the most amazing people we could possibly imagine helping us through what has been such a trying time and the thought of not having those hands holding ours anymore is scary. But we know that is the next step to get you ready to go home, or at least to grandma and grandpa's house for a while, so we are ready to face whatever it is. I mean after all, it will only be a matter of time before that places feels pretty normal to us I'm sure.
Something else we are facing right now that I would have never EVER thought of as scary is the possibility of moving out of Ronald Mcdonald next door. We aren't sure that we will have to but there is a chance that once you leave the CICU mommy and daddy won't be eligible to stay there any longer and will have to go stay with grandma and grandpa at night. Sure, that sounds like a good thing right? We will have our own bed, a kitchen we can use whenever we want, television that has more than a handful of channels, and couches to sit on when we just want to relax. But we won't be very close to you at night and that is a pretty terrifying thing.
If we look at the other side of that coin we will find that perhaps this is just a step to get us ready for what will eventually become our new "normal". To quote a football commentator that mommy enjoyed listening to during the Super Bowl the other day, "we are coming very close to realizing our dream". Very soon we could get the chance to get you out of this hospital and into a home for the first time. That means we need to figure out where you will sleep, what kind of medical equipment we will need to help you, what kind of schedule we will need to be on to make sure you have all the help you need, and a million other things that we haven't even begun to think of yet. So sometime this coming weekend we are going to have to make a trip up to grandma and grandpa's house so that we can start getting some of these things together and set up our new normal.
So don't be scared of all the changes that are coming buddy, whatever they are just remember that no matter how different they may seem at first they are just steps to get us to the place we eventually want to be... in our own home, on our own couch, watching our own tv, cuddling with our very own little man. We may not get back to "normal" life but we will have our own version of normal and it is going to be pretty awesome if it involves the three of us together at home.
Get some rest little man, sleep tight and keep on working. I promise mommy and I will be working as well, trying to get everything ready for you so when you tell us its time we will be ready to take you home. We are so very very proud of you Connor.
We love you Connor.
- Daddy
Friday, February 1, 2013
More adorable by the day
Hi Connor,
Mommy and daddy wanted to say hi and catch you up on the past few days. We were going to write last night but didn't want to jinx the good day you were having. The last two and half days have been the best you've had in a long time. The doctors have been able to wean down your sleepy medicine some so you have been much more awake which is awesome. You still seem to get upset several times throughout the day but we have been able to calm you down without major issues or needing extra medicine. That is a huge accomplishment. Hopefully we will continue down this path of more happy time for Connor and less medicine. As the pharmacist said today, "It's going to be a long slow process to get rid of all the medicine," but don't worry we'll get there one of these days.
Another issue the doctors are still trying to sort out is why your heart rate has been dipping down low lately. I can't even believe I'm typing that since low has never been the end of the spectrum we have had to worry about. We thought we had it licked since you went the whole day without issues yesterday but last night it happened some more. The doctors feel very confident that it isn't a big concern because it only lasts a second and your body fixes it on it's own. Mommy would feel a little better if it didn't happen at all but I think I'll have to trust the doctors on this one. As one of our favorite doctors put it the other night, "your heart is rock solid."
Milkshake wise you are eating like a champ. They have increased the amount of milk you are receiving and are trying to give it to you over certain windows of time rather than continuously. If your little stomach can handle more food in a shorter time then we won't have to be hooked up to that pump all the time at home. Fingers crossed that your stomach is busy growing right now and this won't cause you a bit of a trouble. You have also been eating a little by mouth. The occupational and speech therapist have been giving you little bits of milk every day this week. You are really good at sucking through the nipple when they drop the milk in bit by bit but yesterday they tried a straight bottle and that was a little more difficult. It seems you get pretty excited and take a big drink but can't keep up with the swallowing. No worries little man these things take practice. After all no one expects you to be perfect right off the bat after not getting a shot at it for four months.
The last big issue for you to tackle is the breathing situation. Because you had such significant agitation for several days last week and then went to the other extreme and were zonked at the beginning of this week we haven't gotten to work on this much. As of now you are still hooked up to the ventilator but are doing the breathing on your own. The vent is giving you some extra pressure when you do breath to make sure your lungs open all the way up and don't close down too much between breaths. All of the doctors feel there is a good chance you should be able to come off the vent but no one has pulled the trigger to try yet. To be honest I think everyone has been so pleased to see you awake and happy that they don't want to rock the boat. I have a feeling this will be our focus for next week.
As another week passes we still have a lot of unknowns to sort out but there is one thing that is very clear....you get more adorable by the day. Since the day you were born you have been the cutest little boy I've ever seen but somehow you just keep getting more cute. You have been flashing your little smirk at all the nurses, doctors and therapists (and saving some big smiles for mommy and daddy). Sticking your tongue out, eating your fingers, dancing in your crib and even making your pouty face absolutely make mommy's day. I love you to pieces Connor and I hope and pray we are headed toward a lot more days like today.
P.S. This last one is mommy's new favorite picture :)
We love you Connor
-Mommy
Mommy and daddy wanted to say hi and catch you up on the past few days. We were going to write last night but didn't want to jinx the good day you were having. The last two and half days have been the best you've had in a long time. The doctors have been able to wean down your sleepy medicine some so you have been much more awake which is awesome. You still seem to get upset several times throughout the day but we have been able to calm you down without major issues or needing extra medicine. That is a huge accomplishment. Hopefully we will continue down this path of more happy time for Connor and less medicine. As the pharmacist said today, "It's going to be a long slow process to get rid of all the medicine," but don't worry we'll get there one of these days.
Another issue the doctors are still trying to sort out is why your heart rate has been dipping down low lately. I can't even believe I'm typing that since low has never been the end of the spectrum we have had to worry about. We thought we had it licked since you went the whole day without issues yesterday but last night it happened some more. The doctors feel very confident that it isn't a big concern because it only lasts a second and your body fixes it on it's own. Mommy would feel a little better if it didn't happen at all but I think I'll have to trust the doctors on this one. As one of our favorite doctors put it the other night, "your heart is rock solid."
Milkshake wise you are eating like a champ. They have increased the amount of milk you are receiving and are trying to give it to you over certain windows of time rather than continuously. If your little stomach can handle more food in a shorter time then we won't have to be hooked up to that pump all the time at home. Fingers crossed that your stomach is busy growing right now and this won't cause you a bit of a trouble. You have also been eating a little by mouth. The occupational and speech therapist have been giving you little bits of milk every day this week. You are really good at sucking through the nipple when they drop the milk in bit by bit but yesterday they tried a straight bottle and that was a little more difficult. It seems you get pretty excited and take a big drink but can't keep up with the swallowing. No worries little man these things take practice. After all no one expects you to be perfect right off the bat after not getting a shot at it for four months.
The last big issue for you to tackle is the breathing situation. Because you had such significant agitation for several days last week and then went to the other extreme and were zonked at the beginning of this week we haven't gotten to work on this much. As of now you are still hooked up to the ventilator but are doing the breathing on your own. The vent is giving you some extra pressure when you do breath to make sure your lungs open all the way up and don't close down too much between breaths. All of the doctors feel there is a good chance you should be able to come off the vent but no one has pulled the trigger to try yet. To be honest I think everyone has been so pleased to see you awake and happy that they don't want to rock the boat. I have a feeling this will be our focus for next week.
As another week passes we still have a lot of unknowns to sort out but there is one thing that is very clear....you get more adorable by the day. Since the day you were born you have been the cutest little boy I've ever seen but somehow you just keep getting more cute. You have been flashing your little smirk at all the nurses, doctors and therapists (and saving some big smiles for mommy and daddy). Sticking your tongue out, eating your fingers, dancing in your crib and even making your pouty face absolutely make mommy's day. I love you to pieces Connor and I hope and pray we are headed toward a lot more days like today.
P.S. This last one is mommy's new favorite picture :)
We love you Connor
-Mommy
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