Birthday weekend

Hi Connor,

Sorry we haven't written you the past two nights buddy.  It's certainly not because we haven't been thinking about you or spending lots of time with you.  Saturday night the internet wasn't working and last night we were just too tired by the time we sat down.  I figured this morning I would recap the weekend for you since it was a big birthday weekend in our family.

Saturday started off a little rough.  You were still pretty angry about that mask being on so with the help of some medicine you took a long morning nap.  In the late afternoon you decided to wake up and deal with the fact that the mask wasn't going anywhere.  I think you wanted to be a part of the birthday party because you woke up almost immediately after Grandma arrived.  See Saturday you turned three months old.  Can you believe it?  Three months already.  Of course Grandma brought you a birthday sign to hang on your crib and a birthday present.  This month she got you a new pacifier which is awesome since you have been loving yours these days.  It has an elephant attached to it and mommy thinks it's pretty cute.

You weren't the only one with a special day on Saturday.  Saturday was also Grandma's birthday but she's a little older than three months.  Mommy didn't have time to get her a present this year but thanks to you I think you covered for both of us by being awake and happy with her.  You played with Grandma, Grandpa and Gigi for a LONG time Saturday afternoon and evening.  It was so fun for daddy and I to see you awake and having so much fun with your grandparents.  Connor you are the perfect gift for everyone.

Sunday was another special day.  Your biggest hero celebrated his birthday....your daddy.  The night before daddy said that all he wanted for his birthday was for you to have a good day. Connor you sure did deliver.  You and I started our day out with a good report from the doctors.  By the time daddy got here you were bathed, dressed, off the CPAP, onto your high flow oxygen and having the time of your life playing with Gigi.
You and Gigi listened to lots of music, talked, and danced.  Gigi said you were really liking rock and roll music yesterday.  Then daddy held you and you couldn't stop smiling.  Next Gigi finally got her turn to snuggle and you both seemed pretty happy.

After lunch you were getting a little tired and Grandma came to babysit while Gigi took mommy and daddy out.  We had lots of fun doing some Christmas shopping we never got to do and birthday shopping for daddy.  We even went out to dinner and ate some tasty nachos, one of daddy's favorites.  While we were out Grandma said you were a super good boy.  You napped and played a little bit.  You even helped with a special project that mommy asked the nurses to do while we were out.  You made daddy a birthday card signed with your cute little footprints.  Thanks for being such a good little helper and for behaving so well for Grandma.  What would we do without Grandma's and Gigi's?

Thank you for making daddy's birthday extra special.  As you know he is a pretty amazing guy and deserves nothing but the best.  You sure have a way of making him smile no matter what else in the world is going on and he sure seems to make you smile too.

We love you Connor!

-Mommy

A rough one....

Hi Connor,

There's no way to sugar coat yesterday,  it was a bad day.  Mommy had a weird feeling in the middle of the night that something was wrong but decided she was probably just worrying for nothing.  Turns out mommy may have been onto something.  When I walked into your room yesterday morning you just didn't look like yourself.  I took off my coat and washed my hands like I always do.  By the time I turned back around your color was pretty bad and your numbers were dropping.  I quickly got your nurse and she started checking you out.  You weren't upset but it looked like you maybe had gotten sick a little bit by the stuff you had in your mouth.

Before long you had a whole team of people in your room rushing around and checking you out.  Your heart rate dropped for a minute and your oxygen got pretty low for a little bit.  You gave mommy a good scare.  Luckily you had all the right people around you and they were able to get things stabilized pretty quickly.  Unfortunately that meant putting the CPAP mask back on you.  As you all too well know, that thing is the pits.  You fought hard for several hours against it, kicking your legs, turning your head and pulling on the mask with your hands even through your little mittens.  Finally the doctors found the right amount of medicine to keep you calm and you were able to rest most of the evening.

The doctors think that you spit up some of your milkshake and it went into your lungs until you coughed it back up.  The fancy word for this is aspiration.  This means they have to do another study on your belly to see if they may need to modify your new feeding tube in order to keep this from happening again.  Boo for more tests, boo for stopping your milkshakes, and boo for having to wear that crazy mask.  I'm so sorry buddy.  I hate to see you go through all of this.  I know mommy and daddy feel like we took about 10 steps back yesterday so I can't imagine what you feel like.  When you open your little eyes and glance at me that stare says it all.  You are pretty ticked too.  Please try and hang in there and get some rest the next day or two.

Hopefully today will be yet another fresh start in regaining some ground.  You are resting peacefully now and we are waiting to hear what today's plan entails.  Your Gigi came all the way from Texas to see you so that means you have a lot of playtime and love coming your way.  Plus today is your Grandma's birthday so I'm sure she'll be by to see her favorite little man.  Hopefully we can get that mask off so we can all check out that cute face of yours and get back to business.  We are so proud of how well you are dealing with all these obstacles and how strong your will to fight is.  You are amazing.  Happy 3 month Birthday.

We love you Connor.

-Mommy

Bouncey...

Hello Connor,

This week has been an up and down week. We have had some really really high moments and we have had some really low moments (only one "really" on the low moments) and we seem to just keep on bouncing back and forth between the two. A while back we talked about roller coasters and how sometimes our time with you is just like a roller coaster ride. Its like we get going up and up and up only to have the bottom fall out when we least expect it and have our stomachs turn cartwheels as we race downward. But then, before you know it the fall is over and things have leveled out again. Then there are some twists and some turns and maybe a loop or two here and there but eventually we are climbing again. The one reassuring thing that we have to remember about roller coasters though, is that we always end up on level ground.

So as I'm sure you guessed, that means today was one of those falls. It started this morning when mommy walked into a war zone and you throwing an epic fit. Your heart rate went super high and would not come down, your temperature went too high and would not come down either. The doctors had their theories, they gave you medicines, mommy tried every trick in the book, but you were not anywhere near being happy. Then it happened, you blew up your diaper. As it turns out your stomach has been kind of upset since they starting putting things in it again. Its been over a month since you had anything in your stomach and then all of a sudden you are getting medicines and milkshakes and your little belly wasn't sure how to deal with it. Eventually it worked it out though, and you were able to be calmed.

That didn't fix all your problems though, you still sounded really "gunky" again today and you just didn't look quite right. The fall was on full speed. Mommy and daddy both felt worried about you because we were caught up in the fall. After several hours of you getting some much needed rest you did start to look more like yourself and sound better. Mommy and I had to let our stomachs catch up with us but the truth was we were leveling back out. Maybe we were not climbing like the day before but we were level and possibly bouncing back, so it was time to breathe again, all three of us.

But you did have a little bit of fun today. After one of your favorite respiratory therapists got done thumping you for your chest percussion therapy she suggested we sit you up some. So guess what we got out...

Yep, you are in that bouncey seat again and this time you fit! You were able to sit up and take a good nap and even did your OT for the day while in the seat. It was pretty cool to see. But I have to admit I am a bit worried that you may not like your bouncey seat because as you can see in the picture above, the snail that hangs above your head was not your favorite. If looks could kill that little stuffed animal would have been in a bad place before the day was over. Maybe he'll grow on you.

So for now just get some more rest, maybe your down day today means tomorrow will be a great up day. You are getting a special present tomorrow, she arrives after one o'clock in the afternoon and I'm sure she is going to be spending a lot of time playing with you in the next few days. So rest up and get ready for some fun. Sweet dreams buddy.

We love you Connor.

- Daddy

Hello again...

Connor,

Well hello there little man, its been a while since we have seen "your character" as Dr. Ilias puts it but we are certainly glad to see that the last week of ups and downs and surgeries and sedation haven't taken anything away from you. Actually, if anything, I would have to say that in that week or so you have managed to find a little bit more spunk and even learned a few new tricks. I'm sure you were practicing while mommy and daddy were sleeping so we wouldn't know about it. Stinker. If that's how you want to do it though, fine with us, we will be more than happy to go along with your little plan.

Today has been a good day for you, you got to see several of your favorite doctors (one of which stuck a light up your nose) and a few of your favorite nurses, and you got physical and occupational therapy. And all of that was after a bath early this morning. So you have been awake for a good portion of the day, starting around seven when your day nurse got here and did her checks and pokes and prods. She said you woke up happy and alert and when mommy got here a little while after that you were still wide-eyed and ready for some interaction. So I'm sure you can guess what you and mommy did.

"That's right Pinky, the same thing you do every morning.... try to take over the world!" Well maybe you weren't actually trying to take over the world (that is just one of my favorite quotes and since it is from a cartoon I thought you could handle it) but you did do the same thing you do every morning. PICTURES. As you can see you were bright-eyed and ready to strike a pose GQ style. Mommy was so impressed with how you were doing and how you looked that she made sure to tell me that even though the doctors weaned your oxygen support down you are looking better than yesterday. So woo hoo for that.

Where to start with the rest of your day.... Your kidney doctor came in, he has been one of your favorites for a while now, and gave mommy some good news about you and your little kidneys and bladder. They are doing so well that you are going down to only getting cath'd twice a day instead of three times. So if he wasn't one of your favorite doctors before then you can bet the farm he is now. Even though our excitement at this news must pale in comparison to yours I have to admit mommy and I are pretty thrilled that we won't be having to wake you up in the middle of the night with a catheter. That was a pretty good start to the day.

Then Dr. B (still can't remember how to spell his name but he was the one who did your tummy surgery) came by and took a look and poked around on your belly. Now he is the only one who really "pokes" on your belly right now because he knows exactly where everything is in there, and his pokes quickly told him you were doing great. He said that your surgery (this will be a surprise) was one he hadn't performed before (at least not with the same kind of situation and complications) and that he was looking forward to seeing just how well you were going to do. Your scars looked good and from what we can tell it looks like you are getting better at swallowing. So that was another mark in the win column for the day.

Then your cardiology doctors rounded on you and told mommy that you were looking great and doing even better with your numbers. They just finished weaning your high-flow down to where they wanted it so they could start on the next step in your climb out of the CICU. That next step is one you always look forward to. Milkshakes, and lots of 'em. Mommy has been working hard (there is talk of her starting a dairy farm in the near future) to make you plenty of milkshakes and today you are back on them and building up to where you were before your tummy surgery. Before you know it you will be growing like a weed again, and that is indeed a good thing.

Then came your therapy sessions. Physical therapy came in first and worked with you for quite a while and was thrilled with how well you were doing. Apparently we need to work on your hamstring flexibility a little bit but I told them that you get that from your dad and pretty much every other man on your dad's side of the family. If you work on it I promise I will too, and I'll make sure and tell your Pappaw and uncle Sebastian to get their buts in gear too. Then occupational therapy spent some time with you working on your "bobble head problem" as mommy calls it. You were doing a great job and sat up with her and showed off your new hand skills (grabbing everything in sight, including your other hand and your mouth). Then, and we have to mention this just in case your daddy's friend Justin is reading, you were working on rolling over and practically got all the way over on your right side. You are almost ready for your wresting match.

Now about three seconds after your therapy session ended and we got you positioned again you were passed out. You were ready for your busy day to come to a resting point so you could get some beauty sleep. You crashed for about three or four hours and have only gotten back up now because your night nurse had to do her checks and pokes and prods. I give you about ten more minutes then it will be right back to nite nite time for you. That works out well though because your mommy and I are still trying to catch up from not sleeping much the other night and we are about ready to get some sleep ourselves.

So for now you just close your eyes, think about some of the fun times you and mommy had today, and dream some sweet dreams. Oh, and one more thing, quit trying to pull your G-tube out Buster. We are glad to have you and "your character" back and look forward to what tomorrow brings. Mommy and I are so proud of you and how well you are doing.

Mommy and Daddy love you Connor.

- Daddy

The reason for the season

Hi little man,

It's hard to believe that Christmas is almost over already but then again it's kind of hard to believe Christmas ever began.  At first mommy was a little sad about what a different type of Christmas this year would be.  I missed the decorations, the baking, the shopping, the wrapping, the music and all the planning.  Now as the season has come and gone without doing most of those things I realize I needed a little lesson from Connor.  Although I do love all of those parts of Christmas they aren't what Christmas is truly about.  So I wanted to make sure and tell the real reason for the season.

Christmas is the holiday in which we celebrate the birth of baby Jesus.  As you grow up mommy and daddy will tell you all the awesome details of his story.  When Jesus was born he wasn't born into the best conditions and certainly didn't have an easy path ahead of him but he went on to change the world forever.  Jesus brought peace to earth and his life brought thousands of people together.  He fought against the hardest of circumstances and prevailed.  This reminds me of another little boy I know and love.  So don't get me wrong you aren't Jesus but I believe if you keep following in his path you can't go wrong.  In fact he is with you every step of this journey and is the reason you have that amazing spirit inside of you.

So today as mommy sat in the hospital and thought about her Christmas she realized she didn't have anything to complain about.  Last night mommy and daddy were surrounded by family that love us and you very much.  We were able to laugh and smile while we told stories about you.  We showed off adorable pictures of you like all proud parents do.  Today we talked to all the family we couldn't be with in person while we watched you sleep like an angel.  Both mommy and daddy snuggled with you and we even got to put you in your Christmas outfit.  

Christmas isn't about the gifts or the fancy foods so although we were spoiled with some of that last night we were just as happy eating peanut butter and jelly tonight and sitting in a hospital room with the best present in the world.....you. Connor you are the biggest blessing I have ever received and I thank God everyday for letting me be your mommy.  Daddy and I love you more than words can say.  We are so thankful for how hard you have fought and how far you have come.  You have reminded us the real reason for the Christmas season.  We are especially thankful for the doctors, nurses and therapists who take care of you everyday.  We are thankful for all of our awesome family and friends that continue to support us in this journey.  We are very thankful for the thousands of people who don't know you but pray for you everyday  We are thankful for all the staff and volunteers at the Ronald McDonald house who have given us a place to live.  We are thankful to God for giving us strength, hope, and faith to face each day and most importantly for giving us you, our true Christmas miracle.

Cutest little Santa's helper ever.

Merry Christmas to all and to all a good night!

We love you Connor.  Hope you had a great first Christmas.  

-Mommy

Merry Christmas...

Connor,

Good morning little guy. This won't be a long note since we're sure you are loving life in dream land but we wanted to start the day by saying Merry Christmas to the miracle that has made our lives so much better by just showing up. You are truly a gift from God just like your name says and I hope you know just how much your mommy and your daddy love you. Merry Christmas Connor, you are our hero.

We love you Connor.

- Mommy and Daddy

The Spirit of Christmas...

Hey there little man,

Today is a big day for your family, well at least half of your family anyway. Your mommy's side of the family gets almost all of their Christmasing out on Christmas Eve, which is today. They get together with one side of the family for dinner and presents and chit chat about how everyone is doing to get caught up on the events of the year. Then they head back to Grandma and Grandpa's house where the other side of the family matriculates over the course of an hour or two so they can share dinner and presents and even more chit chat. That's right, we eat dinner and get presents twice in one day. I am guessing you will be a big fan of this tradition once we get you out of here. But all in good time my man, all in good time.

This year Christmas is different for your mommy and daddy though, its is a year where things feel out of place and we both feel very lost. It has been hard to find the spirit of Christmas because we have spent so much time here at the hospital that we haven't had the time to do the things we normally do around Christmas. That isn't to say that we haven't tried, it has just been very difficult since we can't seem to get our lives situated enough to have much free time to do those things. One of these days, maybe.

Normally your mommy and daddy set up a big Christmas tree and then your mommy spends a few hours decorating the house with all the little holiday themed trinkets she has acquired while daddy attempts to help but usually just gets in the way. While we do that we normally listen to all different kinds of Christmas music (believe it or not Christmas music is some of your daddy's favorite music). Then, in the days leading up to Christmas we usually bake cookies and cupcakes and brownies and fudge and all the tiny little goodies that make people's tummy's smile during the holiday season. Both your mommy and your daddy love to make all these treats and give them out to people but your mommy is especially attached to her kitchen and her baking. She not only loves to do it but she is extremely good at it. Some have even suggested that she start her own baking company one of these days.

We also go shopping and buy presents for the ones that we love and care about. Sometimes the presents are boring ones, like socks or underwear, and sometimes they are fun gifts, like games or movies or clothes we didn't even know we wanted until we got them. But no matter what those presents are they represent the Spirit of Christmas, something beautiful and heart warming that brings out the best in people. And in daddy's opinion its the presents that you expect the least that tend to bring out the most joy and demonstrate just how moving Christmas time can be.

You got one such present the other day actually. One that was completely out of the blue and even though it was for you it touched your daddy's heart way more than I expected it to.

Do you see that thing hanging on your crib just under the tiger floating on your mobile? That is a Chicago Bears scarf from a Chicago Bears game, and it was brought all the way from Chicago to Cincinnati just for you little man. One of your doctors, his name is Ryan, came in unexpectedly the other day and told me he had a special Christmas present for you and he would be right back with it. He left the room for a while and then we he came back he was carrying that scarf and he laid it on your bed next to you. Now you and Ryan have had a few run ins when you haven't been so happy (and then of course daddy wasn't very happy) but Ryan has been here and taking care of you since the first night you showed up and apparently you have made an impression on him. He told daddy that he went to the Bears game and while he was there he got the scarf and he immediately thought "of a little guy who would love something like that" and he meant you. It touched your daddy's heart to know that even while he was away with his family and friends your doctor Ryan was thinking about you and wanted to get you something special. That, to me, is the true Spirit of Christmas.

Now mommy and daddy have been able to do a few things that have been "Christmassy" this week but not too many so we had to make them count. Last night we went next door and baked a hundred or so cupcakes to give to the wonderful nurses and respiratory therapists who take care of you every day. We know it is nothing compared to the gift that they give us every day when they come in to work and make sure you are taken care of but it was a little something we could do to put a smile on their face. Then, this morning, mommy decided to get you a little bit festive and look what happened.

Yep, that's you, dressed up like a little elf for Christmas. Now you don't look overly thrilled about the hat but  it did make mommy extremely happy so I'm glad you decided to roll with it. And now, because you have been such a good little boy the last two days, mommy and daddy are going to try to get away for a little bit and see some of mommy's family at their crazy Christmas Eve. We sure do appreciate you being so good for us so we can go, it was a pretty nice gift on your part.

One of these days I will play a song for you, a great man (and one of your daddy's personal heroes) named Ray Charles sings it, called "The Spirit of Christmas". It isn't the most played Christmas song out there and it isn't even one of the ones that I grew up with, but it carries in it the feeling that goes along with Christmas in my mind and my heart. It isn't the glowing lights or the fancy wrapping paper that makes Christmas special, its the time with our loved ones and the love in our hearts that we share with one another that really makes the Spirit of Christmas special. You will see one of these days, I promise.

For now you keep on resting and get some sleep. Know that we love you and are so proud of you and everything you have done so far. Know that we wish we could spend every second of tonight and tomorrow with you and share all of our traditions and maybe even create some of our own. Know that your mommy and daddy both believe that no matter what we find in wrapping paper or under trees in the next day or two that you are the single greatest present that we could have ever asked for.

We love you Connor, Merry Christmas Eve.

- Daddy

Shake, shake, shake.....

Hi little buddy,

What a weekend it has been.  Yesterday started off with good news....your lung stayed inflated overnight and your x-ray looked good.  That meant we could proceed with operation "Ditch the breathing tube."  By mid-afternoon the tube was out and you were instantly a much happier little boy.

Unfortunately that happiness didn't last too long.  The doctors have needed to keep you sedated the past few days otherwise you were going to take out that tube on your own.  Well in order to get that tube out you had to be awake and doing your best breathing.  That means those fancy sleep medicines were all turned off and apparently your little body had become pretty used to them.

Since then you have been dealing with something they call withdrawal. As a mommy I think this may be one of the worst things I've seen you face.  It's kind of like you've had a gallon of coffee and can't hold still to save your life.  Your little arms, legs and tongue are going a million miles a minute.  At first it was great to see you so bright eyed and active but since you can't turn it off it's not so great.  The good news is you aren't too mad about it just exhausted and very shaky.  Hopefully it doesn't seem as bad to you and you won't remember it when you get bigger.

The doctors have given you some other medicines to help work through this process but it's still a process.  Hang in there little guy things will get better each day.  I know you are strong enough to handle this just like you have so many other obstacles in the past.  The important thing we have to focus on is that you are free of the breathing tube and one step closer to our goal.  This has been a hard week but an important week.  Just think your nose is opened back up, you have your feeding tube in and we're headed in the right direction of getting rid of all those other tubes.

Although you have been either wired or sleeping this weekend you have had a lot of people stop by to see you.  Almost all of your favorite nurses have made an appearance to goo and ga at you and wish you a Merry Christmas.  Grandma and grandpa came by to see your adorable face without that tube, Pappaw drove up to spend some time playing with your little hands and feet, and mommy and daddy have been close by.  You also had a very special visitor yesterday before that tube came out.  His name is Bill but you will learn to call him Santa.  He volunteers here but his daughter went to school with mommy so he stops by every Saturday to see you.  Someday mommy will tell you all about Santa and his army of elves.  I am pretty sure Santa is going to spoil you when this is all over with.

For now you are quiet and peaceful for which mommy is very thankful.  Mommy and daddy are going to head over to Ronald McDonald House and finish some treats we are making for the nurses.  I hope you have a very restful night and maybe tomorrow you'll be shaking a little less.  Happy Christmas Eve's Eve Connor.

Mommy and Daddy love you very much

-Mommy

Your new hero...

Hey there Connor,

Today has been quite a busy day already, both for you and for mommy and daddy. Now you actually haven't been awake for most of it but you have been rather active. Mommy told you yesterday about your lung not looking so good and even though that was frustrating for us (and for you too I'm sure) it sounded like things were getting better last night and you might be ready to get that breathing tube out today. You worked hard yesterday trying to make some progress and it looked like you were gaining some good ground.

So as usual the doctors wanted an x-ray this morning and it didn't have any good news to share with us. Your right lung was completely collapsed again. The doctors were shocked because you were doing so well and mommy and daddy were pretty depressed about it because we thought we were past all of that nonsense. But we are not there yet, we still have some work to do. So the doctors ordered another bronch for you today, this time to open that lung up and get you back on track. No time to look around, just get in, get clean, get open, get out. And that is just what they did. They pulled some "giant gunky stuff" out of your little right lung but it is open again and you are getting some good full breaths finally. Sorry we had to go through that buddy, but hopefully that will be the last one.

Early this morning your daddy had to go talk to some people about maybe getting back to doing something productive with his time. Now that isn't to say that our time together here isn't productive but unfortunately there is no one that is willing to compensate me for that time and the fact of the matter is eventually we will have to get back to normal things like paying bills and trying to find a place to live that isn't Children's Hospital. Your mommy was here with you though, and she talked to all the doctors to make sure they had things straight and you were getting back on track. Apparently she does a pretty good job of keeping up with things because one of the doctors said they should just hire your mommy. I don't think she will stay here once you are gone though, no matter how much she loves helping little kiddos like you.

Once the doctors decided what to do it was just a matter of logistics before you were going to be zonked again. They had to get a new tube for you, get the doctors who were going to do the bronch ready, and then they had to get you all doped up and sleepy so that you wouldn't throw any fits while they were trying to clean out that lung. Lucky for us mommy was able to snap a pretty cute picture of you before you went back to sleep town though...

You may have that tube in and all that tape on your face but you still look pretty darn good for a kiddo who is only a day or two out from some major surgery. You are quite the trooper.

Once the doctors had you all situated mommy and daddy went to meet another one of our heroes, and one of yours too (even if you don't know it yet). A little boy on the other side of the United States came to Cincinnati to visit some of the wonderful doctors here (some of them are the same ones you see) and talk about his journey with CHARGE. His mommy and daddy were nice enough to agree to meet with us and let us meet him too. His name is Ronan and he is a big part of the reason daddy was able to get through some of those tough nights here at the hospital when you were first born.

Ronan is another little guy who is going through a lot of stuff and fighting his way through his diagnosis and surprising everyone along the way. He has CHARGE too and he is a little bit older than you but in some of his baby pictures you two look like you could be brothers. His parents have a blog kind of like yours, except theirs is a bit more informative where as mommy and I tend to ramble on about things, and on that blog is a little video that is pictures of him as he has gone through these first sixteen months of his life. That video is one of the most beautiful things we have ever seen and one of these days you will get to see it too. The first night after we found out about your possible CHARGE diagnosis daddy was sitting all alone in your room in the dark, scared of the unknown and searching the internet for answers when I found Ronan's picture. My heart jumped out of my chest because the first one I saw looked just like you. And as I watched that video I knew that we could make it, we could fight too. Ronan and his parents helped to show us what is possible and for that they will always be our heroes.

And now here we are back in the room, waiting on the doctors and listening to one of your favorite nurses tell us stories about lizards and fish. You are resting and getting ready for your big chance to get the tube out, and this time I know we will get it done. So sleep tight little man, get ready for another big push and when things feel a bit overwhelming just think about your hero Ronan because I know he will be pulling for you too.

Mommy and Daddy love you Connor.

- Daddy

Bummer

Hi sleepy Connor,

Right now you are snoozing the evening away.  In fact that is basically what you have been doing all day long.  Mommy and daddy hope that means you are healing and growing.  After a long day of watching you fight with your new tubes and then having to lay still for your MRI yesterday we had hoped today would begin with the removal of that yucky breathing tube, after all that was the plan.  You think by now we would quite thinking a plan was actually going to be carried out as it was intended but somehow we keep forgetting that you often have a different plan then the doctors.  Early this morning they did an x-ray of your lungs per protocol and the results weren't exactly what we would expect.  Your little right lung looked pretty rough and wasn't in any shape to be breathing on it's own.

Since your right lung was having a rough time there was no way that breathing tube could come out today.  Mommy and daddy were pretty disappointed but we knew the doctors were looking out for you.  We were worried you would spend the whole day trying to pull the tube out on your own like yesterday.  It breaks our hearts when you look up at us like you are saying "fix it mom and dad."  However this wasn't the case.  You spent most of the day sound asleep and quiet.  The nurses didn't have to give you near as much sleepy juice today yet you rested much more comfortably then yesterday.  Maybe this was just your day of telling us that you needed another day of rest.

The respiratory therapists and nurses worked hard to help that right lung get back in shape and halfway through the day things were looking better.  You didn't seem to mind them messing with you at all.  Every once in a while you would open your eyes and look for mommy or daddy.  As soon as you saw us and felt us touch your head you went right back to sleep.  So although today was a bit of a bummer it was a great day of rest for you.  Mommy loved watching you sleep so peacefully.  Let's hope that little lung of yours is all better by the morning and we can move forward with the plan to get rid of that breathing tube.  I'm sure if you have another plan you'll let us know and that's ok too.  Mommy and daddy will be ready and waiting when you are.

Sweet dreams my sweet little boy.  Mommy and daddy love you.

-Mommy

Oh the tubes...

Connor,

Hey there little guy. I know its not the end of the night yet but I wanted to write you a little note and fill you in on all the big events of the day so far. I have a feeling that the next forty-eight hours are going to be really tough on your mommy and daddy, and probably even more difficult for you, so I wanted to make sure and write you something while there are no alarms going off and my brain is still functioning at a decent capacity. We shall see if the latter is actually true as we get through this note but I wouldn't put too much money on it if I were a betting man. Either way I'll do my best to remember everything.

We started this morning bright and early, very early, with you wide awake and kicking all over the place. It wasn't mad kicking either, it was just kicking, kind of like you were excited or anxious. I don't know if there is any possibility that you could have known what was going on but you sure acted like it. You were wide awake and wiggling the entire time mommy and daddy were in here with you, right up until the anesthesia people showed up to get you ready for your field trip to the OR. They came in and talked with mommy and daddy for quite a while about what was going to happen and how everything would work with your medicines and your tubes. Lucky for us you are what the doctors call "a veteran" these days and we knew what to expect coming into this morning.

After they had you all changed up and ready to go mobile they wheeled you down to the elevator and your entire entourage, mommy and daddy included, took a trip down to the third floor. We walked down the hall with you and kissed you goodbye so you could go get your surgeries out of the way and take two more steps toward getting better. Mommy and I sat down in the waiting room with Grandma and set up camp for what we expected to be a long day. We had some coffee and some hot chocolate and Grandma got all of her Christmas cards written while mommy and I tried to pass the time and keep our minds as busy as possible without worrying about you. That is no easy task mind you.

Your nose repair was first on the list this morning and we expected that to take a long time because of how much they had to do last time and how long we have had to put this one off with your fevers and what not. Dr. A (I cannot even begin to attempt the spelling of his name although I think I can finally say it correctly) was scheduled to do this one, just like the last one, and that made mommy and daddy feel a lot better. He is a really nice doctor and seemed to take extra special care of you last time.

The receptionist called out to let us know that Dr. A had started on your nose and before we knew it she was calling us again to tell us he was finished. At first we were worried that something was wrong since it had been such a short amount of time but we were relieved to find out that it was just because there wasn't that much to do and your nose was way better than they thought it would be. They only had to work with soft tissue, no bone this time, and they didn't even have to sew in the the stint (that tube in your nose) like they did last time. The put a temporary stint in there but said it will come out in a few days and shouldn't have to go back in. How great is that?!

Then it was on to your belly and the work they had to get done down there. This time it was Dr. B doing your surgery (I swear I really just have no idea how to spell these names and I'm not trying to be cute here) and he is very friendly and spent a long time talking to daddy last week when we thought you would have your surgery last Friday. His job was to go in and tie a little piece of your stomach around your esophagus so that you wouldn't have any more reflux when we feed you. Then, after that was finished, he was planning to go put a little tube into your stomach so that feeding would be easier and getting all those medicines in your tummy wouldn't require so much to go down your throat.

But of course you had your own plans. As it turns out your stomach hasn't grown much in the last eleven and a half weeks and Dr. B couldn't quite tie that piece of your stomach like he wanted. He was able to do something close to his original plan and hopefully that will help with the reflux too. Also, because your stomach is so tiny right now, it was hard for him to get that tube in there and you made him work extra hard to get it where he wanted it. Then, as if that wasn't enough worry for the surgery team, you decided you were going to "ooze", as Dr. B put it, a lot for such a little guy. You weren't gushing blood or anything but you were losing blood at a pretty quick rate and they had a hard time making it stop.They finally got it under control but they did have to spend more than double the amount of time on your surgery that they were planning.

After they were all finished Dr. B came and talked to us and told us about what happened with your stomach and all the oozing and that he was a bit worried about you. He said he thought you would be fine but that we would need to watch you super close tonight and tomorrow to make sure that things kept moving in the right direction with your belly. He has even stopped by your room since then to talk to the nurses about what to watch for and who to call in case something funny comes up and your belly doesn't cooperate. We are all on watch though, so don't you worry.

Since you got back to your room things have been up and down quite a bit. You go from quiet and sleeping to awake and freaking out. That probably has to do with the tubes. Oh the tubes, not more tubes, I know how you hate the tubes. But they did have to put some in, more than we thought. You got your belly tube for feeding, a foley catheter to help you pee during surgery, a brand new IV in your hand for your extra medicines, and that breathing tube you have been fighting for the last four hours. So you went in with just the one tube, your PICC line, and you came back with five total, the big one breathing for you.

I know you hate that one and to be completely honest it broke mommy and daddy's hearts to see that in your mouth again. We can tell you can't stand it and we can't either because it feels so much like a step backwards to three or four weeks ago. We know it comes out in a few days but it is still so hard to see it, especially seeing how much you hate it and how much you are fighting against it to breathe on your own. You have been doing such a good job of that lately that you don't want any help. I know how that feels, your daddy is just the same way with most things in his life. "If I can do it on my own then let me!" Here is another lesson from Connor, sometimes we need to let people (or in this case a tube) help us if the situation calls for it. You are a pretty smart character.

For now we have you quiet and calm again and we are hoping to keep you that way but my guess is that won't last since you seem so anxious to be moving around and fighting. We will do our best to keep you comfortable and happy though, you just do your best to keep getting better. Mommy and daddy are SOOOOOOO proud of you Connor, you are doing so well and dealing with so much and we couldn't ask for a better little boy than we have right here in front of us. Keep that in mind as you take your little naps, and think about all the time we are going to spend cuddling when those dreaded tubes are gone again.

Mommy and daddy love you Connor.

- Daddy

Here we go again...

Hi Buster,

Today started out pretty fun for you and I.  Although you weren't the happiest when I arrived you quickly calmed down and to work we went.  Our first task was getting you cleaned up.  You typically love getting wiped down but today was a whole new bath experience for you.  Your nurse suggested we sit you in a tub of water.  She was worried you wouldn't like it but you sure seemed pretty happy about it.  Now you have a little better idea what a real bath is like.

The rest of the morning included some play time, a nap, therapy and talks with the doctors.  The doctors assured mommy that they have everything set for you to have your surgeries tomorrow.  Your numbers look good and they are ready to move forward.  This afternoon mommy was lucky enough to cuddle with you for a few hours and then you and daddy got some snuggle time.  Things were lining up for a quiet night as mommy and daddy started to head downstairs for dinner.

Then while the nurses were working on you things went south.  You threw a major fit but it was time for some chill medicine so we weren't too worried.  As the nurse went to give you your medicine your new PICC line decided to get stuck.  This means they couldn't give you your medicine or draw blood.  Mommy and daddy find this pretty ironic since your other PICC line lasted months without a problem and now this one is 3 days old and being stubborn.  So with a lot of work mommy and daddy were able to calm you down and the doctors finally gave you some medicine in your feeding tube so you could stay calm.

Mommy and daddy ate a late dinner and now we are waiting for the PICC team to come up and work on your line.  They have a special medicine that helps to unclog it so we're saying an extra prayer that it does the job.  We won't know for a few hours if its successful but we don't want to have any reason to stall tomorrow.  So let's make an agreement right now that you manage to have a quiet night so we can go into tomorrow rested and ready.  I know tomorrow doesn't sound fun but it's a necessary step to get closer to home.  Don't be scared little buddy.  Mommy and daddy will be right here every step of the way.  We love you Connor and we are so proud of how brave you are.  Sweet dreams.

Love,
Mommy

Reset, reboot, restart...

Connor,

Hey there little man. Its been a few days since we sent you a note but it has been another few days of nothing but questions without answers. Days like that we tend to wait to write your note, hoping beyond hope that we will get some of those answers in the time spent waiting to write the next note. As usual though, we have not gotten any of those answers and we are no closer to understanding exactly what it is you are trying to tell us.

Before I get into the news of today I have to tell you about some really special play time from yesterday and a really special gift you got all the way from southern Kentucky. Yesterday morning your Pappaw drove up to see you and guess what you two got to do?

Yep! You played together in his arms for quite a while. He held you and kissed you and made all kinds of goofy faces at you and he even let you pull on his beard. I know you don't know it yet but that is a pretty big deal for Pappaw because he doesn't like it when people touch his beard. But you two had a blast and you were as happy as I have seen you in days. It was like you found a new kind of happy place that only Pappaw's can provide. I know about that place, I have been there before with my Pappaw and I cannot tell you how happy I am that you finally got to find that place with your Pappaw.

He also brought you a present from your Mammaw, one that she has been waiting to give you for a little while and one that will remind you of your daddy's Pappaw too.

Its a piggy bank. A BIG piggy bank. This piggy bank can hold you inside if we need a place for you to hide. But it is a special gift from your mammaw and your mommy and daddy are going to start trying to get it filled up for you. We will make sure and send her a picture of you with it over to her and tell her just how much you are gonna love it. You sure do have some family out there that loves you.

And now to today. Prior to this morning your mommy and I have been jolted into our day in the pre-dawn hours with a phone call from your nurse with some sort of news to report on your night. Today was the exception to what we feared was becoming the rule but when we did get over here to your room this morning we were greeted with your screams and a look of exasperation from your nurse. She looked at us and said "he knew his mommy and daddy were running late today". I know that probably isn't what was going on at all buddy but just in case you were wondering you should know that your mommy and I were just making sure we had a little bit of time to recharge for another day here in the hospital after such long days recently.

But you were upset, whatever the reason was behind it doesn't really matter because you were throwing up two hundred's on your heart rate monitor and turning a crazy set of colors between red and purple and pale. There was a very small dose of good news though, you were definitely happy to see us and did calm down some once we got to talk to you and pat your little belly and chest. At that point you weren't mad anymore, you were just agitated. I know that maybe those two words sound similar to you but there is a clear difference lately and that is one of the biggest questions your mommy and I have actually.

You stopped clenching your hands and squinting your eyes and holding your breath. You stopped screaming at us and you were no longer getting purple (just a very bright red). But no matter what we tried we couldn't slow your breathing down and we couldn't get you to sit still for more than a second. You were wiggling and fidgeting and squirming like there was a colony of ants crawling on your body. Mommy and I tried everything we could think of to calm you down but we just couldn't quite do it. Eventually we gave in to the nurse and had to give you a little bit of chill out medicine so you would relax. Even though you are doing so much better and your heart seems to be chugging along just like we would want it to no one wants to work it too hard right now if we can avoid it.

The doctors have a theory that they are testing out right now and will hopefully be able to fix some of the issues you have been having this week. Unfortunately mommy and daddy don't like the theory much and aren't sure if they are right but we trust them because they are great doctors and have done a great job getting you better every other time there has been a problem. The bad news about this new theory is that they are going to have to basically take you back a week or two worth of steps when it comes to your medicines. You are going back to I.V. medicines and the doses are all going back up. If they are right then this will stop the fevers and get you ready for the surgeries we missed on Friday with your fevers.

And I know you are wanting to find out when those surgeries will be but unfortunately we just can't tell you yet. A lot of your doctors have been talking about them and they all seem to want them to happen sooner rather than later and your mommy and daddy can't agree more. We think that maybe it is time to get those surgeries checked off the list and see where we stand after the dust settles from them. And if that is going to be our approach then lets hope we can get the surgeries Tuesday and not have to wait until the second half of the week. We will cross our fingers, you try it too.

They are implementing some news rules at the hospital starting tomorrow too. Because of the beginning of flu season the hospital is going to limit the people who can come back to your room and visit you. We thought that meant only a few people could visit but that we could decide who those people would be. That is not the case. It will only be a few people but we don't get to decide those people after all, it will only be parents and grandparents allowed back to see you. That means no more visits from your uncle Scooter and auntie Beth (or your new GF as we discussed...) for about two months. That is a LONG time for a little guy, more than half your lifetime!

So of course when your auntie Beth and uncle Scooter found this out they jumped in their car and raced down here to see their favorite little boy in the whole world. They got here a little while after the fit we mentioned earlier and you were still a bit zonked from the medicine the nurse had to give you. But that wasn't exactly a bad thing, it did lead to your favorite part of the whole day and a pretty big spot opening even wider in auntie Beth's heart...

Sorry daddy forgot to close the door in the background buddy, lucky for us auntie Beth is a wiz with pictures and will be able to fix that little oversight for us so this picture can get framed and hung up a few places. Its one of many great pictures we got of you today, here is one more I think you should see because it is all three of you together.

After they had to leave you spent some time watching football with your mommy and daddy until Grandma showed up and took us to dinner and played with you while you were awake. You had some fun with her and then played with mommy until you finally tuckered yourself out. Now we are winding the day down and getting ready to try and sleep and get all reset and recharged for the week coming at us tomorrow. We know you can handle it but some of us lesser beings need a little bit more time to reboot.

Keep up the good work Connor, we know you are doing everything you can to get better. I hope you know we are so SO proud of you. You are our hero little man. But for now sleep tight and sweet dreams.

We love you Connor.

- Daddy

So close...

Good Morning Connor,

And I hope you are having a good morning indeed (we made a deal remember?). After mommy's wonderful note to you the other day (the one with that awesome picture of you sun bathing) you started a bit of a slide that wasn't in the right direction. You had that little fit the other night before dinner with uncle Scooter and your girlfriend auntie Beth but even though we calmed you down from that it sounds like you had a rough remainder of the night. That was Wednesday.

And to make sure you keep us on our toes you decided to start out Thursday morning with a bit of an adrenaline shot to the heart for your mommy and daddy. At six thirty in the morning when mommy got up to make you a milkshake she saw that while she was getting her stuff together the hospital had called her. She called back immediately and they told her that you had been upset for hours and had another fever and were just an unhappy little man in general. Your magic calm down syrum wasn't working and the nurses were out of ideas.

Daddy was already up and out the door so mommy called and stopped my heart for a minute too when she told me. But supermommy was already getting her stuff ready to come be with you. She sat here from very early in the morning until dinner time when she finally got to go rest a little and take a shower. She didn't want to leave your side until you were good and happy and someone else was here to keep you company. So daddy got back over here yesterday afternoon and Grandma was right on my heels and before you knew what was happening you had a full blown Connor party going on in your room.

This cheered you up because you were good and happy and put on a good show for all of your surgeons as they stopped by to check on you and make sure you were going to be ready for today. You remained quiet and content and even smiled at one of the doctors when he was explaining to daddy and grandma what he was going to do to you while you were sleeping. Your performance was impeccable. We were all wrapped around your finger, almost.

Since Grandma was here and you were being so good for everyone mommy and daddy went out to visit some people who were nice enough to invite us over to their house for a Christmas party. Now we haven't done much of this sort of thing but luckily for us they live one turn away from the hospital here so we felt pretty confident we could be back asap if we needed it. Just to keep us calm and happy Grandma sent mommy messages every so often to let us know how you were doing and what was going on. You were still in full character and keeping the show on.

Then something changed and you went from happy Connor to something just short of crazy Connor. Grandma did a great job of taking care of you and by the time we got back and mommy got her milkshake making finished you were all calmed down. We were told this was just a blip and the surgeries would go on. So off to dream land we went thinking today was going to be a long day of waiting while the doctors did their best to get you in and out quickly.

This morning we woke up early and started to get moving when mommy called and found out you had another fever last night. It was a low grade fever but it was still a fever and one of the things the doctors told us was that if you had ANY fever they would not operate on you today just to be safe. However, much to our surprise, we were told the surgery was still going to take place as planned. No one was worried enough about that fever to slow things down so the show was to go on.

We weren't sure we liked that idea so we rushed to get over here to the hospital and talk to the doctors. We were barely out the door at Ronald McDonald when we had another scary moment. We had the right of way in the crosswalk and when we started to cross the street a truck turned the corner and had to stop suddenly to keep from hitting us. Luckily he stopped with plenty of space but just as soon as we started to move again another car came speeding behind the truck and hit it in the rear. The noise was really loud and the man driving the truck looked really mad. Mommy and daddy both felt really bad but we couldn't do anything about it and were just following the rules when it happened. Either way lets hope that he and the other man involved are both feeling okay today and there wasn't anything more than a little cosmetic damage to the cars.

Finally arriving in your room after that scare we found you wide awake and happy as could be. You looked ready to face the day's challenges and that was reassuring for both mommy and daddy. We felt much better knowing that you were looking so good. We did ask your doctors to come talk to us one more time to make sure that they felt as good about the surgeries as you looked and the cardiology team said you were ready to go and anesthesia would be up in a little while to get things going. Per our usual routine for your surgery days we started with a little cuddling and some kisses.

We were getting ourselves prepared for another surgery day when the general surgeon who stopped in yesterday called your nurse for a report on how the night went for you. Less than a minute later she walked in to tell us the surgery had been canceled and we would have to wait until next week to get your nose fixed and your feeding tube. As much of a relief as it was to know that you were going to have another few days to get ready it was pretty frustrating too because mommy and daddy have been pulled in every direction about this surgery the last few days and we were finally at peace with it taking place when the call came to put a halt to it.

But the important thing is you are happy and healthy right now so we will take that and run with it for a few more days. Hopefully the doctors can get this fever thing figured out and you can get back on track with being happy Connor. So with that in mind lets all rest a little bit now, you and mommy especially because it has been a really long day already and its only ten o'clock in the morning. Whew.

We love you Connor.

- Mommy and Daddy

A good day!

Hi Connor,

Mommy and daddy are very tired so this is going to be a short note but I didn't want you to think you we weren't thinking about you.  The past two days have been pretty good days for you so I wanted to make sure and celebrate them.  You spent most of the day yesterday with grandma (while mommy made super sure she was feeling 100%) and sounds like you had lots of fun.  Grandma helped you with your bath, calmed you through an ultrasound of your kidneys, watched your therapy and even got to snuggle with you a bit.  How awesome is that?  Mommy wishes she had been there to take your picture but if I know grandma there will be lots more snuggle time with you two.  I'm sure she spoiled you and didn't fill mommy and daddy in on all those details but that's what grandmas are for.  Thanks again grandma for babysitting. Yesterday evening was a quiet family night with the three of us and you were good for your nurse overnight.  Thanks buddy.

Today started off kind of busy for you and I but as we got all our work done early so we were able to relax most of the afternoon.  You even took a nap in the sunshine.  I'm pretty sure today was the first time you have felt sunshine on your skin because until we moved rooms the other day we haven't had a window where the sun wasn't blocked by the building.  You looked especially like a little angel resting in the sun.

Daddy came back early and hung out and then grandpa came to visit.  We asked grandpa if he would like to hold you and you'd have thought we offered him a million dollars.  It was pretty cool to watch you two together.  You were wide awake and hanging onto his every word (no matter how goofy they were).  You watched him the whole time and seemed pretty happy about the whole experience.  I have a feeling the two of you are going to be thick as thieves.

Then mommy and daddy went to leave for dinner at uncle Scooter and auntie Beth's house.........  This was not your proudest moment as you threw an epic fit.  It lasted every bit of an hour and a half.  We won't dwell on this little fit because it's the first of it's magnitude in a long time but I will say we could certainly do without those.  Thank goodness you have the best daddy in the whole world and he was able to get you settled down  and finally sound asleep.  You sure do love him.  Thanks to uncle Scooter and auntie Beth for being understanding and serving us dinner despite our tardiness.

The main facts of the past two days are that you have been happy, very active, fever free, and growing.  This means you are on track for your big day of Friday when you will get your nose fixed again and get your belly feeding tube.  I know these things don't sound fun but they get you one step closer to coming home with mommy and daddy.  We sure can't wait for that day.  For now sweet dreams little boy.  We know you have to be tired after today so rest well.

Mommy and daddy love you Connor.

-Mommy

Always your schedule...

Connor,

Well good morning little man. I hope you had a good night's sleep last night and I hope that you had wonderful dreams of things that make you happy. You certainly looked pretty happy when you finally decided that you were ready for bed last night. But, just as you would have it, you took your sweet time and had the nurse and I running on your schedule with all of your medicine and your nightly checks. We would start to check your vitals and you would throw a fit, we would start to check your temperature and you would surprise us with a dirty diaper, we would start to give you medicine and you would cough up a bunch of gunk and need some good suctioning. So every time we thought we could get back on the hospital schedule you would let us know that was not in the cards for the night. But hey, it did mean that I got to spend a lot of time with you last night so I won't complain.

Yesterday was a bit of an interesting day for you buddy, you were all over the place and you had a lot going on between your doctors and your mommy and I. Your mommy spent the morning with you, but she was wearing a mask because she wanted to be super cautious. She has been losing her voice a little bit here and there and wanted to make sure that she wasn't sick or anything so she was extremely careful with you and made sure to watch her hands about a thousand times and wore the mask the entire time as well. As soon as the doctors were finished with their rounds for the morning mommy headed out to get some preventative antibiotics just in case she had a little something brewing. She sure does want to spend every minute with you so better safe than sorry.

So the doctors gave mommy a big dose of antibiotics and told her to wait twenty-four hours just to be safe. Because she loves you so much that is exactly what she did even though it was like torture for her to not be there with you yesterday. But she is a great mommy so she listened to the doctors. And that meant that daddy was going to be spending the day with you, some boy time again. I got there around one-thirty, just in time for you to get a little bit upset and your nurse and I to go through the first of four rounds of suctioning your little nose. It wasn't pleasant but it did the job and you finally got to breathe easy. As soon as you fell back asleep we took your temperature and found out that you spiked a whopper of a temp, just over one hundred and three degrees. That is a new record for you I think, and it was enough to cause the doctors to call for cultures and antibiotics. As it turns out you may have been the one that gave mommy a little bit of a raspy voice. Weird how that stuff works out.

But your antibiotics and some Tylenol got you all calmed down and quiet and back to a normal level of warm. You were looking like your happy healthy self again in no time. Of course we don't know exactly what was going on except that your inflamatory markers (some count thing they do with your blood samples, daddy doesn't understand this one yet) were pretty high and you definitely had a little something going on in your body. The hope is that whatever that was is getting it's butt kicked by the antibiotics today and we can just breeze right by the infection with no blips on the radar. If that is the case then you may have a big week coming up this week. If that isn't the case then we will again be asking you when you are ready and when your schedule will allow for a few more procedures.

There are four things that the doctors want to get done this week, or next week if your infection doesn't go away quickly. 1) They want to put in the G tube and do a nisson (spelling? no clue here) procedure to make feeding you a little bit easier and help with the moderate level of reflux you have coming from your belly. This will also hopefully make the secretion situation in your throat a little bit better as well. 2) The doctors have finally made up their minds and they want to go ahead and do the second surgery on your nose to open it back up and get things flowing on both sides again. The hope is that this will make it easier for you to breathe and it will also help with the secretion issues as well since you will have two airways to breathe through and another hole to get some of those boogers out. 3) We still need to get an MRI of your head to make sure that the clots that they found a little while back are not causing any problems or getting any worse. This isn't going to be easy to coordinate with the surgeries but they want to get it done while you are sleeping so we don't have to knock you out more than once. And 4) there is still talk about doing a bronchoscopy to check on your lungs and your airway but since you have been doing so well with your lungs I don't think the doctors are too worried about getting that one done.

So like I said before, you are going to have a bit of a big week this week if you can kick that infection. But if not then the plan will be to push all that stuff back a week and get you rolling in the right direction then. Either way we have a plan again, and one that will get us a few steps closer to getting out of the CICU and then eventually out of the hospital and home with mommy and daddy. But in the mean time we will just keep on trucking, working at your pace and trying to enjoy all the little moments when we get to do things like hold you and play with you and talk with you. Which, by the way, you are beginning to get involved in. You were actually making a few noises back at me last night while I was talking to you, and they weren't cries. At first I didn't notice it but then it was pretty clear you were just testing out that voice of yours. Good work buddy.

Well lets see where today takes us and then we can go from there. But I want to share with you a few pictures and the captions that I sent to mommy last night as I was playing with you, and keep in mind that they were all taken within about 5 minutes total.

"Sleepy Connor"

 "Time for a napsky"

 "Yup, passed the f out"

When you get tired its not like we ease into it, its like we jump off the cliff of awake and fall straight into the pool of zonked. Its kind of funny every time I see it.

Keep up the good work buddy, your mommy and daddy are proud of you.

I love you Connor.

- Daddy

CHARGE on...

Hi little buddy,

Overall it has been a pretty quiet weekend.  That's not to say you haven't  been working hard on growing and breathing on your own.  If it wasn't for that gunky stuff that keeps blocking your nose and making your numbers drop we would be in the clear.  I know it has to be frustrating to be sound asleep and then all of the sudden not be able to catch your breath.  Sorry for all the suctioning but it's the only way mommy and daddy can get that yucky stuff out and let you get back to breathing easy.  So for now we will wait as we have been to see what the next step will be and if any of the ideas being thrown around will help get rid of that pesky stuff.

                  I swear you are smiling in this picture

Mommy and daddy did have a visit from Dr. G on Friday night.  Dr. G is the genetic doctor that taught us about CHARGE syndrome when you first arrived.  Dr. G stopped by to let us know that your blood work came back and confirmed the clinical diagnosis the doctors have given you.  Now this doesn't change the course of action that the doctors will take one bit but she did have some interesting information.

 Dr. G sent away some of your blood to have special computers analyze your DNA.   I know that you have no idea what DNA is but basically it's a recipe that explains how to build a little boy.  In most kids with CHARGE syndrome there is a letter missing or a word misspelled in that recipe.  They call this a mutation.  Your mutation falls at a very important spot.  In fact you are the only documented case of this type of mutation.  The way that mommy understands it is that the spot your DNA is different is a spot that is in charge of regulating a lot of different things.  It's kind of like a whole chapter got ripped out of your recipe book.  This explains why you have faced so many obstacles in so many parts of your little body.  More importantly it confirms you are one of a kind and truly a miracle.

Dr. G asked mommy and daddy if she could write a paper about you.  She thought you were very interesting to start with because of your heart but now you may be the most unique little boy she's ever written about.  We of course agreed because we want to make sure we can help any other super special kids and their doctors learn about CHARGE syndrome.  It's amazing that at 10 weeks old you are teaching some of the best doctors in the world lessons.  Mommy and daddy love when you prove the doctors wrong (to be honest I think a lot of the doctors here are very happy that they have been wrong about you).

Mommy can't promise what the future holds but she can promise that we will do our best to face it together. Mommy and daddy are so proud of you everyday and amazed by your abilities.  I don't have an explanation of how you are able to do what you can do but I'm pretty sure it has to do with your strong will.  So for now we will CHARGE on and gear up for the start of another hospital week.  We will take things one day at a time and follow your example of determination.  Keep up the good work buddy.  I know you will keep defying the odds and being the exception to the statistics   You are an inspiration to so many people.

Mommy and daddy love you Connor.

-Mommy

GF already?...

Connor,

Hey there little buddy, daddy here. I have a few minutes of free time while mommy goes and makes your milkshake so I thought "what better way to spend it than write little man a note". I know, its not a novel idea, or anything I could even call a little bit imaginative seeing as the computer was already on my lap and you are about 4 feet away from me right now. But sometimes its the simple things that mean the most, the ones that we expect to happen, the ones that we become accustomed to. So maybe this note will be one of those things, or maybe all of them are.

Today has been pretty quiet. In fact, it has been one of those days where you were so quiet that by the time daddy got here to see you mommy was a little bit concerned about how quiet you had been. You had slept all day long and with the brief exception of a few checks here and there by your nurses you were quite content with staying asleep, at least for a while. We did notice that you were breathing a little bit harder than normal and everyone who saw you thought you looked a bit swollen, but not in the normal places, all over.

So of course mommy and daddy and grandma decided to put on our doctor hats and diagnose you with whatever condition we had in our brains at the time, probably from an episode of House or Bones or some random comment from one of the doctors around here. But despite the fact that outside of mommy's experience as a PT (which I am in NO WAY downplaying because that experience has been so very helpful through these last several months) we had no medical training in cardiology, pulmonology, endocrinology, or any of the other important -ology's we were certain we could decipher your symptoms and tell the nurse how to make you better.

As you can imagine that didn't really solve any problems. Since we couldn't help at the time we decided it was lunch time and daddy went to see his good friend Theo (who says hi by the way) and mommy got to have lunch with Grandma and auntie Beth. They wanted to stop and see you too. But after lunch you had some plans for excitement. You woke up, got a little rambunctious and then played with your auntie Beth for quite a while. Its actually kind of cool to see the two of you hang out because you two seem to have some kind of connection. And if I didn't know any better I would say that little Connor has his first crush.....

 Watch out uncle Scooter! That is you staring all "gaga eyed" at auntie Beth, hanging on her every word and movement. You were making some good headway with her too, until you made a dire mistake so early in a relationship.... You might have decided to cough and cough and then spew some yellow stuff out of both ends. It wasn't your proudest moment but that is just part of growing up so don't worry too much about it. I think the only thing that really scared her was when you got mad and turned a little purple and daddy had to ask for the nurse. But she got over that too and was back to playing with you shortly after your episode was over and you were all cleaned up. Maybe just wait a little longer before sharing so much with one of your crushes next time.

After a little while you calmed back down and slept like a... well like a baby. You were zonked after all the excitement and all the playing. And as it turned out the main reason you were looking so different to mommy and daddy today was because you needed a little episode to get things all cleaned out and back on track. So for once maybe your little episode did more good than bad, maybe. And I mean a BIG maybe so don't get any ideas.

So since you are so social right now mommy and daddy are going to go get some dinner downstairs at the most amazing five star restaurant in Cincinnati Children's. It may not be gourmet but we are thankful for it because it allows us to stay close to you on the days when we need it (I think there are more days where we need to be close than there are where you need us close but perhaps that is just parenting). So enjoy your nap, I'm sure as soon as we get ready to go get some rest ourselves you are going to wake up and want to party. Its almost like clockwork lately, but we will take it because partying with you is way better than sleep anyway.

I'll talk to you again soon little man.

I love you Connor.

- Daddy

Looking forward...

Mister C,

That is the name that Grandpa kept calling you today while he was here visiting. I'm not sure it really fits you but he was pretty adamant about using it and you didn't seem to mind. So maybe that will be another one of your nicknames or an alias you can use when you get to be the bad guy when you play with your friends. It sounds kind of cool, but it also sounds like you really want to be a muscular black man with a mo-hawk and too much gold jewelry. We will kick it around and see where it lands.

So as it turns out today has been a day for all three of us to be looking forward in one way or another. And we have a lot, and very little, to look forward to right now so that is both easy and very difficult. Mommy and daddy have always been people who look forward and use the things we see as a guide and a motivation. We use things like you being born and daddy having so many health issues to guide us back here to Cincinnati. We use things like our vacation to Aruba last year to motivate us to get our butts off the couch. We use things like your breathing tube coming out to use as a stepping stone to something better.

Well right now we don't really have any of those kind of things in front of us, or at least not the kind that we can see right now. We have been trying and trying to get an idea about what the next step will be in your journey here at Children's but much to our dismay we have not been able to get a good answer to that question. The doctors are trying their best to figure out what to do next but it seems like every time they think they have it sorted out there is a little kink that gets thrown into the mix and we start all over again. So the doctors decided it was time to do another test and see if a direction could be determined from the results.

Which is what led us to your little field trip today. That's right, you packed up (its actually a LOT less packing now) and headed downstairs for another short trip to get some pictures taken of your belly again. This time they did what they call an "upper GI". That is when they put a tube down your throat and put some colorful stuff in your belly and intestines to see how things are moving down that way and if you can possibly tolerate any type of normal feeding routine. So they put some stuff called "contrast" in your tummy and let it work its way around a little bit while they used their x-ray machine to take some pictures.

There was good news and bad news and then some other good news. I'll start with some good news. They found that your intestines are not twisted or anything like that and that they appeared to move things along just fine. The bad news is that they found out you have some moderate reflux from your belly that pushes things back up your esophagus and into the back of your throat and your nose. That reflux means that there is no way they are going to let mommy and daddy try to feed you with a bottle, so you will have to be fed through a tube for a while. We don't know how long yet but it will be at least a year or so most likely, depending on how you progress from here on out.

That leads to the other "good" news. And this is daddy doing his best to see the glass as half full today, but the other good news is that we now have a plan as far as your feeding goes. You are going to be headed down to the operating room again next week, this time to meet with some other surgeons who are going to put a "G tube" in your side so that we can feed you without using that little tube going down your mouth anymore. I know that sounds like something cool a rapper would use but unfortunately that isn't the case. This little guy will allow mommy and daddy to put food directly into your belly from a syringe so that you can keep on eating and growing. The surgery will be sometime in the middle of next week, we just don't know when yet.

And sorry that mommy and daddy have been a little bit out of it today. We have been trying to wrap our brains around not just what is going on today but what will be going on in three months or six months or even six years. We both know its impossible to predict the future but we never knew it would be so hard to just try and come up with a plan. We want to ask the doctors all kinds of questions like "when will we go home?", "how long will Connor need a feeding tube?", "how many times a week will he have to come back to the hospital?", "can he still run for president like he was planning to?". I'm pretty sure the only one we can answer now is the last one, and that is a definite "YES" but that is just based on the determination you have already shown us all.

But all the other stuff we don't know about you and where you are headed make it impossible for us to make a plan just yet. That is hard for us but we are doing the best we can to make do with a "day to day" kind of mentality. This is just another one of those lessons you are teaching us from your little bed. I promise we are trying to learn, and quickly, but some things are more difficult than others. So for now mommy and daddy are trying not to think about next year, or next month, or even next week really, we are just looking at right now and at tomorrow. Some say this is a really good way to live life, if so then you are giving us another gift by teaching us that now. So then I guess "thanks" is in order. :)

Now we are winding down for the night. You just had some of your medicine and mommy is rubbing your head and whispering to you while your mobile dances above your head. You seem pretty content but SHHHH don't say anything. We have learned you sleeping at night is like a perfect game in baseball, you DON'T SAY A WORD about it until its over or you will jinx it and ruin everything. So.... lets just say sweet dreams little man, sleep tight and rest peacefully.

Your mommy and daddy love you Connor.

- Daddy