Big Things... (with pictures now)

(I hope you all complained to Apple about the new iPhone cord.... Here are plenty of pictures)

Hey Bubba,

So we have made it through another week and are settling in for the night to face the coming week. In the last seven days since our last note we have had a lot of stuff going on and have seen some pretty big things. It is kind of funny what is considered a big thing these days though. Big things don't necessarily have to be all that big relative to the rest of the world in order to have a BIG impact on you and your world.

Where shall we start? I guess we should probably start with easing the fears of your friends and fans who were left hanging off the cliff mommy signed off with last week. You pulled through your first cold (or at least we think it was your first cold) and are no worse off than when you got home. In fact, you may be better off because you know have a mommy and daddy who know that you can make it through a cold and a fever and barely blink an eye. We were worried for a few days and we discussed taking you to the hospital at least a dozen times in forty-eight hours, but the Tylenol worked and you showed us your strength yet again and we all made it through.

That was a week ago exactly. Since then you have been busy making progress in quite a few ways. Mommy mentioned last week that you have been doing a little moving and shaking and traveling around the house but this week you have been a traveling fool. You have been all over the house now, including the basement with daddy. You took another car ride and found yourself looking out the window at some of the neighborhoods of West Chester as your mommy and daddy tried to figure out where we will go when we are finally ready to move out of your Grandma and Grandpa's house. You really seemed to enjoy it for the first hour or so but after that I think you were ready for some home time and you let us know that.

You have also been working on your therapy a lot more, mostly thanks to your mommy and her skills. You have been sitting up more, you have been rolling over, you have been on your belly, you have been all over the place. Mommy is stretching you and pulling on you and even though you don't always like it the two of you seem to be making some big gains. I wish we could show all your fans a video of you rolling around on the floor because its pretty neat to see just how far you have come in the last week, and even more so in the last month or two. Before long you will be rolling around on your own, I just know it. And I can't forget you sitting up on your own, mommy propped you up in what her and your grandparents call a "pumpkin seat" (I have no idea what it is supposed to be called but I don't think its a pumpkin seat) and you were able to sit there all by yourself and play with your toys on your tray. It was pretty awesome.

What else? Well I have to mention something that I personally have been super excited about since the first time your mommy told me you were coming to see us. The only thing I was adamant about registering for when we went to our first baby store was a baby carrier that would allow me to strap you to my chest and walk around with you looking out at the world. Now after we started seeing some of the problems you were going to face and the tubes that were going to be required to fix those problems I was pretty worried we would never be able to use one of those carriers. But on Wednesday you will never guess what we did.... Oh yeah, we got you strapped to my chest, feeding bag and pump hooked on to my belt and we walked around the house. You loved it, I loved it, mommy loved it. I know that may not seem like a big deal to too many people but I can tell you it was a BIG DEAL to your daddy.

Another big deal that mommy touched on last week is your Ativan. It has been a week since your last dose and (please everyone reading this knock on wood with me here) you haven't seemed to notice at all that it is gone. Mommy and I were super nervous about that one but like you always do you surprised us and breezed through. Next we are hoping to get you off your clonodine patch and that will be the end of the sedative medication. Cross your fingers that your doctor will tell you this week that you can take off your last patch on Thursday.

Which brings me to the last thing of the day. Mommy and I are working to get things together so we can take you to your first doctor's appointment tomorrow. This will be your first of many follow ups as an out patient so both mommy and I want to make sure we are there and have everything ready. It may be nothing more than a doctor's appointment but for you, me, and mommy its a BIG THING. One more step, one more little thing that leads to big things. So here we go buddy, keep up the good work.

We are so proud of you every day Connor. Mommy and Daddy love you.

 - Daddy

Some extras....

Home sweet home. What's that?

Hi Little Man,

It's been a week, seven days since you left the hospital last Tuesday to come to a place that so many people have told you about....Home.  Home is a place that most people feel comfortable and know very well.  For you it's a bit of a different story.  The only home you have known for the first six and a half months of your life has been the hospital.  To top that off mommy and daddy don't exactly have an established home to bring you to because the the insanity of moving from Texas, your early arrival and then our unexpected hospital adventure.  Thankfully Grandma and grandpa have not only opened their home to us but rearranged the vast majority of their house and lives to make a wonderful place for us.  Mommy isn't going to lie she was a little nervous to spring you from the hospital but excited to start the next chapter of our lives.

We have heard stories of babies that have been in the hospital for a long time and not done so well with the transition home.  I imagine it has to be a lot of big changes for a little guy.  As with most big things you have been faced with you took it on like it was nothing.  You were calm and happy on your first car ride home.  When we walked into Grandma and Grandpa's house (which was beautifully decorated by mommy's friend Julie) you were nothing but smiles.  You behaved like a good little boy all afternoon playing with grandma and grandpa while mommy and daddy signed paperwork and got things organized.  Then as things started to settle down mommy sat down next to you and realized something didn't look right.  Your feeding tube was hanging down further than usual and so mommy lifted up your shirt to inspect things.  Unfortunately your feeding tube was almost all the way out.  

So within a matter of a few hours you were back in the car and heading toward Children's Hospital.  There's one thing that's for certain, you don't travel light.  Luckily your doctor called ahead and we didn't have to wait in the ER so we could head straight to radiology.  The next hour or so wasn't the most fun for any of us.  The doctors had a pretty hard time getting the tube back where they needed it and despite the fact that you hadn't had a nap all day you were amazingly good.  Mommy and daddy are so thankful that we have such a tough little boy.  Thankfully the tube was back in and we didn't have to spend the night in the hospital.  Back home we headed.  Let's not make these late night runs a habit.   We need that tube so you can get your milkshakes and medicine.

The rest of the week has been filled with settling into your new room, your new house, and your new routine.  You have adapted very well to your new surroundings.  We have played not only in your super cool room but in the family room and even ventured into the kitchen while we all eat dinner.  When you move from room to room it kind of looks like a parade traveling through the house.  It's not the easiest thing but mommy and daddy won't let that stop us.  I have a feeling that is how a lot of things in your life are going to be, not so easy but worth the work.  As far as a schedule we haven't exactly gotten that down to a science yet but who really cares.  The important thing is that you sleep pretty well at night and we have all day to get the rest of our work done.

You have had a few visitors already and made it home just in time to celebrate your girlfriend Auntie Beth's birthday.  Although she seemed to like her present I think she was much more excited about cuddling with you on the couch.  There is a new person that has started coming to visit you each night.  Her name is Stacey and she is your nurse.  You haven't seen all that much of her because you are usually asleep when she gets here and still sleeping when she leaves in the morning but mommy and daddy are extremely thankful that she is here.  Because we know that she is taking good care of you at night we have been able to get a little rest the past few nights which is much needed.  Please be nice to her buddy because we need her to stick around.

We do need to ask all of your fans to say an extra prayer or two for you in the coming days.  It appears that you are either teething or working on your first cold.  You have been a little fussy and super snotty with a few low grade temperatures over the past two days.  We've been in touch with your doctor and keeping a close eye on everything but our main goal is to get you through this without returning to the hospital.  I know a cold sounds like no big deal but as one of the ICU doctor's said a long time ago "Connor's first cold will be a big deal, a life event."  We are hoping to prove him wrong and breeze through this.  Right now it seems we're on the upswing so rest up little buddy so we can stay home and play some more.

Connor we love you so much and can't express how happy we are to have you home with us.

Love,
Mommy

P.S.  Yesterday was your last dose of Ativan.  Yes! Another medicine off the list.

Almost there...

Hey little man,

Well its been a week since our last note, and quite a week it has been. Your mommy and I have been running around like crazy people trying our best to get everything ready for you to come home and stay there. We have had doctors coming to see us, nurses coming to see us, equipment delivered, and people finishing all kinds of education and training. Its been a crazy week for sure.

I know we probably owe you a dozen notes but we are doing the best we can to keep up with everything once a week, and that is when we find the time to squeeze a note in. So lets see what all we have to tell you about this week.... You have had a lot going on, we have had a lot going on, and the rest of the world has managed to keep turning in spite of all that.

So you have managed to get off your methadone, you have gotten off your syldenaphyl(spelling?), and you are getting really really close to getting off your ativan. You only get one dose of that a day now, and the dose you get is so small that the doctors and nurses don't even think it is enough to make a difference in your day. That means, if we are lucky, that you will be off all your sedation medications before you head home. That would be quite a big deal considering you were on enough medicine to put an elephant to sleep at one point. Now we just have to get rid of that ativan and the clonodine patch and you will be sedation free.

Of course who knows if that will be a good thing because you are quite active now and that is with medicine! When you wake up you are either crazy happy or crazy fussy and we can't decide which one until you either smile or put your bottom lip out and make the saddest face I have ever seen. Maybe it will be a nice thing to have you off all the medication, but maybe, just maybe, it will be more difficult if you don't have a little night cap to get you to sleep at night. I'm just saying....

So this week you have spent some time with your mommy, your daddy, your pappaw, your grandma, your Auntie Beth, and lots of nurses and RT's. The one thing I can tell you is that they all agree that you are the most adorable thing they have ever seen. Every one walks in and tells your mommy and I just how cute you are and how amazingly beautiful it is to see your little face smile. Apparently you have the entire world wrapped around your finger. I can't say I'm surprised though, you have been working hard to get that done since you showed up a few months ago.

This week your mommy and daddy have had a lot to do as well. We went to make sure that all of your stuff got delivered to grandma and grandpa's house and then we had to go through hours and hours of training on that equipment. Your grandma and grandpa and uncle Scooter went though all four hours of training with your mommy and daddy so that we would all know how to take care of you and your equipment if something would happen to any of it. The good news is we are all ready to go and everything you need is ready to go at home.

We also had to find ourselves a new home... Last night your mommy and daddy took a big step and moved out of the Ronald McDonald house. That place has been a blessing and we cannot say enough about how great those people have been to let mommy and daddy stay so close to you during all of this. We will never be able to say thank you enough but we tried out best to let them know we really appreciate all the time that they let us stay there. If it weren't for them we would have had to do a lot of driving and we would have gotten a lot less sleep and a lot less training.

But now we are at your grandma and grandpa's house and we are settling into life so that we can get ready for you to come home and settle into life with us. Your mommy and I have been waiting for years on this day and we cannot seem to sit still because we are so excited. Granted things aren't quite like we expected them to be but you know what, we are excited no matter what. We cannot wait to sit on the couch and hold you, to have your friends and our friends come say hello, to have you with us when we do something as silly as eat dinner or watch a movie. This is going to be great.

So for now keep doing what you are doing, keep working hard to get rid of as many medicines as you can and we will keep working to make sure all of your stuff is ready at home. Before you know it we will have you home and we can all kiss the hospital goodbye. No more hospital beds or sterile rooms, no more rounds and no more hospital schedules (except when we have to go back for appointments). For now we can focus on some time at home as a family because it is about time we got some of that.

Know that we love you Connor, know that your mommy and I are so very proud of you.

- Daddy

Learning, learning, learning

Hi little man,

Mommy's going to do her best to remember the highlights of the week but to be honest the last several days have all blurred together into a hectic but exciting burst of time.  Daddy and mommy just finished our late night dinner and discussed how nice it would be to fall into bed when we realized we needed to do laundry, paperwork and get some things ready for the week so I decided to write you a little note while we wait for the washer to finish.   The theme of this week has been learning.  Everyone has been learning all kinds of new things including you.

Let's start with mommy and daddy.   We have officially checked off all of education requirements necessary to bring you home.  The last steps we had remaining included a twelve hour day and night stay for both mommy and daddy separately with no visitors or help from the nurses to take care of you.  You were a very well behaved little boy and slept almost completely through the night for both of us.  Unfortunately between medicine times, setting up/changing your feeds, your injection, trach care and cathing there wasn't much time for mommy and daddy to sleep but that certainly wasn't your fault.  Hopefully with time there will be less and less of those things to interrupt the night plus we will have a little more flexibility with your schedule at home.  You are absolutely doing your part to help mommy and daddy get some rest and for that we are very thankful.

Yesterday we completely the grand finale of tests by practicing getting you in/out of the car.  The "you" part of that task is a breeze but the plethora of accessories that have to come with you is a bit more of a challenge.  No worries though mommy and daddy worked through it as a team and in no time you were in the car and ready to ride (I promise buddy next time we'll actually put the car in motion).   You don't seem to mind the car seat or the stroller as long as its moving and you aren't in the bright sunlight.  I'm sure the sun and the wind have to be a little scary after being inside in a somewhat dark hospital your whole life.  Hopefully when we're at home you will get more used to it and before long you'll love it.  I promise buddy being outside is so much better than being cooped up indoors.

Next let's talk about some of the learning a few of your family members did this week.  The educator on the TCC set-up a special class to teach your Grandma, Grandpa, Uncle Scooter and Auntie Beth some important aspects of your care.  They all spent a few hours learning about your trach, CPR, feeding tube, etc.  Mommy thought it was awesome how eager they were to learn about how to help take care of you everyday and what to do if you had an emergency.  Grandma and Grandpa both learned a lot about your vent this week and they are able to take apart and change out all of the tubes if necessary.  Grandma finished almost everything on her check off sheet and even changed out your trach.  I think this is something that is pretty scary to most people but once you've done it you realize it isn't that bad.  Grandma did great and we're super proud of her.  There's going to be a lot more learning for them and several other of your family members during not only the next week before you leave the hospital but the next several months at home.  You are such a good sport and when someone is learning something new it's almost if you realize it and are extra patient.  Thanks buddy.

Now let's talk about you and all that you have been learning.  Almost everyday you seem to figure out something new.  It's as if you are learning at a super pace to try and make up for all that time that you were held back because you were recovering from a surgery, unable to move, sedated or just too sick.  As your mommy it's absolutely amazing to watch your little brain and body explore new things.  You have really taken a liking to certain toys and you react differently to them.  My favorite reaction to see is when you catch sight of your glow worm.  You have always liked him but now when you see his face you instantly smile.  It's pretty darn cute.  Then there's the toy we call your baby ipod (we got that name from your California friend Ronan and he actually gave you one of the two copies of this toy you have.  The other one is from your cousin Carter.  You better believe we are keeping both of them).  You are completely mesmerized by this thing and it is by far the best tool mommy and daddy have to distract you or cheer you up if you are grumpy.  You like this toy so much that the other day while mommy was in CPR class with your family daddy saw you roll over to your side to reach for it.  Now you did have a little help with how you were positioned in the bed but regardless that's the first attempt you have made to initiate rolling on your own.  I am so thankful that your daddy was there to see it and took a picture for mommy.  You have started passing toys from one hand to the other and put things like your pacifier in and out of your mouth much more accurately.  Another interesting thing you have been doing is inspecting the details of your toys and blankets to find the tags and small parts that your little hands can grasp and of course immediately shove into your mouth.

Another very important step that you made this week was getting a speaking valve and tolerating a some time off the vent.  This valve doesn't exactly allow us to hear you at this point and it had to be modified a little to decrease the pressure but the doctors tell us it's a pretty awesome sign that you are able to tolerate it at all this young.  You have been able to handle two periods during the day for up to an hour each with this valve on and no ventilator.  Most of the time you don't mind the change at all but it does seem to wear you out a little.  The doctors say this is great exercise for your lungs and as time progresses we will try to make these windows of time off the vent longer and longer.   It sure is easier to cuddle with you without those big old tubes and I look forward to the day when we can enjoy more and more of that time but for now we will celebrate the two hours we have.

As you can see this week has been action packed with so much learning that mommy's brain hurts.  Mommy and daddy are very impressed with the progress you are making and the skills you are gaining all while weaning off two more medications and even putting on a little weight.  Connor you are truly a miracle.  We are so very thankful for all the therapists that are working hard with you to develop and progress.  Mommy and daddy are also especially thankful for the nurses, respiratory therapists, and Lisa the educator who have spent so much time teaching some your family how to care for you (for those of you who haven't gotten to learn yet no worries there will be plenty of time). It's a pretty special experience to watch so many people work so hard for one little boy.


Mommy and daddy love you Connor.

-Mommy

Weeks...

Hey Bubba,

Well here we are again, a week later and we are still trying to catch up and find enough down time to write you a note and fill you in  on all the big happenings around this place. There has been a lot going on in this last week as I'm sure you have noticed but there has actually been just as much or more going on that you haven't even been able to be a part of yet. Lets start with the important stuff though, the stuff that directly affects you of course.

So this week we have been working on wrapping up all of the education we have to have completed before you are cleared to leave the hospital. We have a one page check list for both mommy and daddy (and Grandma and Grandpa have ones they are working on too but thankfully theirs don't have to be completely finished for you to go). It may not sound like that much but when you have to do almost all of it three or four times each it can be quite time consuming. Not to mention the fact that some of the things on that list are trach changes and twelve hour stays. You can only do those so often and that means more time.

But we are making our way down the list and finally, as of yesterday, only have two things left we need to get checked off on. Mommy and I have to do our twelve hours stays (there are two each, one daytime and one nighttime) and we have to practice getting you in and out of the car. That means we are getting close. Before you know it we will have those checked off as well and we will only be waiting on the home health people to finish up their part of things and you will be headed to Grandma and Grandpa's house.

In the mean time the doctors have been working hard to get you off of as many medicines as they can before you leave. You are almost completely off your methadone (that will be gone by Thursday) and your ativan will be down to just twice a day tomorrow. Your clonadine (spelling?) patch was cut in half this week too so you are getting really close to not having any more of those yucky sleepy medicines that were making you so groggy these last few months. You are also going to get an MRI next week to take a look at your little head and see if the clots that were there are gone yet. If they are then that will be one less medicine (and two less needle sticks a day) when you get out of here. So the list is getting smaller and less daunting every day.

Your mommy and I can really tell that the medicines are going away in your system too. In the last two or three weeks you have really come into your own as they say. You are playing with your toys, you are getting more and more done with therapy, and you are interacting with people around you all the time. We can really see the little man named Connor in your eyes now that the haziness of the medication is almost completely gone. Mommy and I can get you up and play with you and hold you and you are constantly looking at us and grabbing things and doing all those things little guys your size should be doing. Its pretty amazing to see.

You may have also noticed that you have had a lot more visitors lately. You still aren't getting the receiving line that you probably would if the hospital allowed it but now that you are out of the ICU we are starting to let some of your family get in and meet you for the first time. Right now we are still taking it very slowly though, we have to make sure you don't get sick or we won't be able to take you home so we can't let too many people in at once. However, as long as people are healthy and check with mommy and daddy first then maybe we can get them some time in your busy schedule.

One of the visitors you had this past week was someone who hasn't seen you in quite a while. Now that isn't because he hasn't wanted to, but with his work schedule and the crazy weather we have had the last several weeks its has been difficult for your Pappaw to get up here. He did come yesterday though, and he hung out with you and your daddy and mommy for hours. He even go to take you for your first field trip outside of your unit. That one was kind of a big deal and Pappaw was super excited to be a part of it. He pushed you downstairs to the floor beneath us where you got to see your mommy's friend Lisa. She works here and we have been waiting for the day when we could stop by and say hello to her with you in tow.

You also got to see your Grandma and Grandpa again this week. Grandma was here a few days and Grandpa came down for your mommy's birthday (that was Thursday). I asked mommy if she wanted any birthday presents from you or I but she said she just wanted to dress you up and make you look adorable. So that is what she did and you would not believe how many people came in to see you. Nurses were stopping in just to take a look at your handsome attire. Good work mommy, and a happy birthday to YOU!

A couple people we thought you might see this week weren't able to make it to see you because of some bad news for them. Your Gigi and Grandad Rooster were hoping to get out this way and see you again while you were here in your new unit but it doesn't look like that will happen any time soon. You see your Grandad Rooster had some pretty serious heart trouble a few days ago and it put him in the hospital for a while. Things were kind of scary for several days while the doctors worked to find out what was wrong and make it better. He didn't have quite the same stuff as you but he did spend some time with some cardiologists and did end up having a few little procedures done to help out his heart. But, like you, Grandad Rooster is a tough guy and he fought through it and is now back home and playing with Ollie again. He may not be able to come see you for a little bit but I'm sure that he will as soon as he can. I can't tell you just how thankful all of us are that he is doing better now, Its pretty amazing how strong some people's hearts are, but you know that already I'm sure.

So some of the stuff that has been going on lately that hasn't been directly tied to you... Well we have some nursing interviews this week to see if we can find some nice people to help us take care of you when you get out of here. We also have a company coming to check out Grandma and Grandpa's house to make sure it will be ready to go with everything you need when you get out of here. Mommy is actually there right now getting your room all set up and ready. I'm sure it will be both functional and fun if she has anything to do with it. Good thing its her and not me or we might have missed on some of the fun because of the functional.

We have also been getting a lot of things done that were due (boring stuff like taxes and car registrations) to be finished before you leave here. Mommy and I still have a lot to figure out before we can get back to having our own life but we are working on it slowly and will hopefully have most of the big stuff figured out before too long.

So I looked up at the top of the screen and I realized that I have now written you a book instead of a note. There is more to tell you but I think I will try to write you another one of these tomorrow instead of cramming any more into this one today. Plus I always forget things and mommy will remind me later what I need to add. Before I wrap this up I do need to tell you one more big piece of information though, you finally have a discharge date. You are set to go home on April 16th. That is just weeks away buddy!! So that is why we have been so busy around here lately, we are getting you ready for your grand exit from this place. So don't get too comfortable around here, we aren't going to be here much longer.

Keep up the good work little man, mommy and daddy are so very proud of you.

We love you Connor.

- Daddy