A day in the life of Connor

Hi Little Man,

(Now that's an outfit...OH.....IO!)

A lot of people have been asking mommy what a typical day is like for you at home so I thought I would start out by briefly running through one.  I also thought it might be nice to document what life is like right now and then compare it where we are in a few months.

-5:40am  Mommy gets up (Daddy is already long gone for work and the gym, that's beyond early).
-6:00am Your nurse Stacy leaves if it's Monday-Friday morning (if it's the weekend either mommy or daddy have probably camped out on the air mattress in your room).
-7:00am You get some medicine in your G tube and mommy mixes up some milkshakes for you (we fill these up every 4 hours around the clock).
-8:00am You get 4 medicines through your G tube and your eye ointment.  You typically wake up about now and need lots of suctioning for the next hour or two as you get things moving.  You like to play quietly by yourself when you first wake up which gives mommy a chance to drink her coffee and stock up on all the supplies we will need for the day.
-9:00am You get one G tube medicine, your injection (blood thinner), and then mommy cath's you.
-9:00-11:00am We play, do our stretches, work on your therapy exercises, clean your G tube site/dressing, take a sponge bath and get dressed for the day.  We also do one of your hour windows off you vent during this time and try to wear your hearing aide on days that mommy is able to keep it in your ear. 
-11:00am Grandma and Mommy do your trach care
-11:30am You take a nap (sometimes this is a real nap other times its a 20 minute power nap).  Grandma usually hangs out with you during this time and plays with you if you're awake so mommy can shower and eat something.
-12:00pm You get 3 more medicines in your G tube and eye ointment
-2:00pm We typically move from your room into the family room and before long daddy comes home.  You and daddy play together and do some work on sitting up, reaching and other important things.  Together we all play on the floor, sit on the couch, spend a little time in your swing or bouncy seat and do whatever we can to entertain you which more often than not results in us being entertained.  You usually do your second hour window off the vent sometime during the afternoon and on good days we try and give your hearing aide another go.
-4:00pm You get some medicine to help you go to the bathroom which results in you promptly blowing out your diaper plus you get some more eye ointment.  Most days you take a little power nap around this time.  By now Grandpa is home from work and dying to get some play time with you. 
- 6:00pm The Connor train moves it's way out to the kitchen where we set up camp for dinner.  You usually play quietly and watch us all eat dinner besides needing suctioning here and there.  After the grown ups finish eating mommy and daddy try and do your tastings as part of speech therapy.
-7:00pm  You get one G tube medicine and we head back to the family room after changing out your feeding bag for the day.
-8:00pm  You get 4 G tube medicines and your eye ointment.  During the next hour we take turns hanging out with you (trying to keep you awake and happy) while getting the night chores done such as changing out the suction equipment and cleaning it, changing out part of your ventilator, thawing out milk and making bottles for the night and cleaning up our mess from the day.
-9:00pm  Time for your injection again and cath'ing (usually daddy does this).  Then off to bed you go.  Sometimes you fall asleep instantly and other nights it takes you a while to drift off.  On those night we try and read a book and cuddle.  Although it may take a bit to get you to sleep you almost always sleep well through the night once you are asleep.
-10:00pm  Your nurse Stacy gets here so mommy and daddy fill her in on the day and then try to get some sleep ourselves.
-4:00am  You get 2 G tube medicines and more eye ointment.

Right now that's a typical day in the life of Connor assuming you don't have any doctor's appointments (you average 3 a week) or any therapy sessions (right now the therapists come to our house 2-3 times a week).  We are starting to learn how to juggle your schedule around appointments, naps, and the million other variables that change on a day to day basis.  Luckily Grandma and Grandpa have been an enormous help to mommy and daddy so with some team work we haven't missed a beat yet.  You also have a day nurse two days a week that is also a big help.  Her name is Zion and you seem to enjoy hanging out with her.  This week your full time day nurse starts so that will be a big help and adjustment for mommy and Grandma during the day.  It's kind of hard to keep up with all your daily care, the phone calls, appointment scheduling, insurance crap not to mention regular things like laundry when all mommy really wants to do is play with you.  We are already getting more efficient with everything so I know over time this will all be very routine for us.  Plus in time there will hopefully be less and less medicines, appointments, and procedures making the days easier and easier.

Speaking of appointments you got an A+ from both your pediatrician and cardiologist this week and you were a champ during both appointments (which is impressive considering one was at 6:45 am and you had to get stuck twice for blood work).  Your pediatrician, Dr. Fletcher was thrilled with how well you have adjusted to home life.  You have gained a little weight since you've been home, done great with your windows off the vent and all of your blood work is stable.  We sure feel lucky to have Dr. Fletcher and his whole team on your side.  They are amazing at keeping all your issues sorted out and coordinating the billion specialists involved in your care.   Your little heart got the stamp of approval from Dr. Hirsch at your cardiology appointment.  He repeated what an amazing little boy you are and he couldn't be happier with how your heart is working.  He said your repair is excellent (thanks to Dr. Morales) and although we have to keep an eye on one of your valves your heart is much lower on the list of priorities that need attention in the near future.  Awesome news !

(You played contently for over an hour on the doctor's table)

We did have one pretty rough day this week.  On Wednesday you weren't yourself at all.  You were spitting up, had a little fever, were very restless and your heart rate was much higher than usual.  Your nurse Zion was here during the day and she was pretty worried about you.  Mommy was hoping with all her might that you would settle out but as the day went on things seemed to get worse and worse.  Twice mommy actually packed the car thinking we would be heading down to the hospital but you pulled through and we were able to stay home.  Mommy is so thankful for one of the nurse practitioners that works with Dr. Fletcher.  Her name is Wendy and she called every two hours to check on you and give mommy orders for what to do to keep you home.  We still aren't sure if you had one of the many stomach bugs going around or if your yuckiness was a result of withdrawling from your clonidine patch.  So for now you have the patch back on but we'll get rid of it before long.  Although Wednesday was pretty rough by the crack of dawn Thursday you were back to your old self and flashing smiles at everyone in the cardiology office.

All in all mommy and daddy couldn't be happier to have another successful week under our belt.  Yet again you have impressed your family, friends, doctors, nurses and therapists.  Connor you are one remarkable little fellow.  I know there are so many more details of the week that I wasn't able to pack into this note but as you can see our days are a little busy and despite my best intentions I haven't had time to write you more often.  Time to get some rest and gear up for another busy week of appointments, therapy, visitors, and most importantly play time.

Mommy and daddy love you Connor.

-Mommy

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