A long way...

Hi Connor,

You are snoozing right now and its nice and quiet here in your room and your POD so I thought I would take this opportunity and write you a little note. Before we get too far along though, we need to say something very special to someone who means a lot to you. Happy Birthday Gigi! I know if you could you would be cuddling with her for a birthday present but maybe you can just give her a rain check on that. You know what though.... you share something with Gigi today even though you are over one thousand miles away.

Today is your birthday too. Well sort of. I mean its technically not your birthday (don't tell your Grandma that, she really looks forward to these days) but today you are four months old. Its hard to believe that you have been here with us for four months. Its even harder to believe that the three of us have been living here in this hospital for four months. We thought we would have scooped you up and taken you home by now but that just wasn't in the cards. The doctors told us that you were going to have a really hard time getting through that marathon heart surgery of yours but that once you were on the other side of that hurdle you would be able to just keep on trucking and hopefully get out of here quickly. I think everyone (your mommy and I included) saw just how well you were doing after that heart surgery and we thought that there would be nothing that could possibly stand in your way. It isn't that we were wrong, we just didn't know your timetable.

You decided to take a different path when you came to us. First you were in a hurry and wanted to be here way too early and we did everything we could to slow you down. You weren't having it. You had your own plans and we learned for the first time that your schedule would be the one dictating our lives. You showed up early and gave the world quite a grand entrance. Then we thought you would need a heart surgery within three days of your birth but again you had other thoughts. Turns out you made your heart work its own way for a full three weeks and held off that surgery until you gained weight and had yourself settled. Then of course we were told that you would struggle so much after the heart surgery. Well as I mentioned before you flew through that. Within a week you were closed up and people were already talking about getting you out of here.

Then your strong will (that is the meaning of your name after all) stepped in again and taught us once more that your timetable is the one that will run the show. You have certainly taken your time traveling down the road that followed your surgery. It has snaked back and forth a few times and has even gone backwards more than once. But something that your daddy had to climb a mountain in Africa to learn is something that you apparently knew instinctively when you were born. Sometimes you can't just run straight to where you are going. Sometimes you have to go back and forth until you are accustomed to your surroundings and then you move forward. If you move forward too soon you won't be able to handle the journey but if you take your time and follow the path of patience you can go a long way.

And that is what you have done in your first four months of life son. You have taken your time and ignored the urge to rush right up the side of the mountain so that you can make the entire journey and not be stopped short because you aren't ready. So take your time, weave back and forth as much as you want, just keep moving forward every time you are ready and we will be right there beside you to help if you ever need it. And if you ever start to look up at the top of the mountain that seems so far away just remember that you have already come a long way. Sometimes we forget that when we don't look back and only focus on what is in front of us but its important to remember that we are all on a journey with things in front of us and behind us and every once and a while its okay to look back and say "wow, look how much I've done already".

Keep up the good work little man. Four months old and look what you have done, look how much you have overcome, remember you have come a long way.

We love you Connor.

- Daddy

Eat it up!

Hi little buddy,

I have been sitting by your crib for several hours now watching you sleep peacefully.  As much as I love our play time and watching your little hands move about I have to say it's wonderful to see you rest.  The last two days have been filled with some rough times for us.  You have been pretty upset several times a day and it's obvious that something is bothering you.  I wish it was as obvious what that thing was but as of now it's a mystery.  I also wish I could do something to calm you down and comfort you but right now the only thing that seems to do the trick is medicine.  The doctors have run through a series of ideas but no answers yet.  More specialists, more tests and more possibilities of scary problems but as your smart daddy told your upset mommy last night, "we don't know that of those things are true, they are all just theories."  So for now we aren't going to waste time and energy talking about those things and mommy will try not to let her mind get ahead of things.

Despite the fact that the past two days have been pretty rough there has been a good development.  On Thursday the occupational and speech therapist came to see you together.  They had gotten the green light from the doctors (thanks to ENT for pushing for this) to try tastings with you.  This means they put the littlest bit of milk in your mouth and see what you do with it.

When the therapists arrived you were sound asleep and I mean SOUND asleep.  They both looked at you and said, " I doubt this is going to work out today."   Mommy asked that they at least try and wake you up before they wrote the day off.  The OT sat you up and we rubbed your face, feet, belly and you still kept sleeping.  It took a good 10 minutes to get you fully awake but you were pretty happy when you finally cleared the sleep from your eyes.  The speech therapist started with your favorite paci which you sucked on right away.  She then explained that because it has a flat nipple it's easier to keep in your mouth but doesn't use your muscles in the same way you would need to suck out of a bottle and swallow so she switched to your other paci.   We call this one your therapy paci.  You surprised her when you took to paci number 2 without much trouble.  She was then a little hesitant to try the actual bottle nipple because she said that's a lot of change in one session but your OT told her you were a rock star and so she tried.  Much to their surprise you started sucking on the bottle nipple like you had been doing it your whole life.  The therapists were giddy with excitement.  The next step was to put some milk in the nipple and see if you could get it out.  They started with one milliliter of milk and in a split second the nipple was empty and you were looking for more.   They gave you a second milliliter and you took care of that too but slowed down a good bit.  Mommy and the therapists couldn't be happier.  It might not have been much but swallowing anything was a huge victory.

Yesterday the speech therapist came by early in the morning before mommy was here and tried to work with you  but you weren't very interested in trying (you had recently had a dose of sleepy medicine so I can certainly understand not being interested in therapy).  Mommy was disappointed that she missed the trial but one of the occupational therapists said she would be back later to try.  While mommy was at lunch with one of her good friends, Julie, the OT returned as she had promised.  Luckily your daddy was here and got to be a big part of your second day of tasting.  The OT had daddy hold you and put the nipple in your mouth while she dropped the milk in.  You ate a whole 8 milliliters of milk in a row.  BIG PROGRESS!!!!  Daddy and I are so proud of you little man.  The therapist said they would do a few more trials next week and if you kept eating about the same they would move onto a swallow study.  The swallow study allows them to make sure everything is going where it's suppose to and not sneaking into your lungs.  Since we haven't had to suction any of the milk out of your trach after you've eaten these two time it seems that you're off to a great start.

Although sometimes it seems that the mountain you have to climb is insurmountable you always amaze us by tackling each obstacle as if it's nothing.  There's no doubt that we have a very long road ahead of us but your strength and fearless attitude pick me up when I am worn down.  Connor you are my hero.   To a lot of people drinking a little milk may not seem like a big deal but for you it's HUGE.  This will be the case for most milestones you will achieve.  It may take us a little longer to get there and I'm certain it will take a lot more work but that will only make them mean so much more.  Let's try our best to celebrate your victories and worry less about the obstacles left to conquer.

Mommy and Daddy love you Connor.

-Mommy

Bumps...

Hey Bubba,

Before we get to anything else I am going to start off and just say I'm sorry. You know why, and in case you forgot I'll tell you again in a minute but I had to say sorry before going any further.

So we learned a lot the last couple of days, and we still have some questions about a few things. We have now learned how to clean and care for your trach, we have learned how to clean and care for your g-tube, we have learned how to cath you, and we have learned how to suction your trach. Maybe that doesn't sound like all that much learning, and maybe to a person who has any background in the medical world at all it wouldn't be. But for your daddy that is a lot of learning. However, I do love to learn so that part isn't too bad. When it comes to the "doing" part I am not nearly as ready to go as I may appear.

I have been trying really hard to remember that these things we are learning to do right now aren't forever and they are things that you will need when you finally do get out of this hospital. Keeping that in mind has gotten me through cath'ing you (which to be honest I never thought I would be able to do after watching the first one) and it has gotten me through cleaning your g-tube (here again I thought I would toss my cookies if I ever had to do anything with that tube) and it got me through suctioning your trach (this was probably the easiest but that was because I had the help of your respiratory therapist). Today though, we ran into a problem.

Mommy and I were getting all ready to do your trach care again (this is day three) but this time she was going to be the one holding your trach in place and I was going to be the one cleaning your little neck and putting all the ties and padding back on you. This sounded quite simple and after watching mommy and a couple of your respiratory therapists do it I thought I should be able to do it just as easily. So the first two parts went pretty well, we got all the stuff from today off and I cleaned up everywhere to make sure you weren't hiding any of your slimy stuff. Next it came time to put your new collar on and fasten it. Here I realized that the dexterity in my fingers is somewhat lacking. It took me forever to thread that little velcro strip through your collar and get it ready to fasten back down. I was all kinds of stressed out and I am pretty sure my heart rate was higher than yours the entire time I was working on it. Unfortunately that was the easier part. Next I had to try and put a little padding strip down on your neck and chin and get it under your trach collar. This is when I realized that having hands big enough to palm a basketball is actually a bad thing. I fumbled around with it and tried several times and despite my best efforts, and a bucketful of sweat dripping from my forehead, I could not get it on correctly. Thankfully mommy kept her cool and got it done for me.

The worst part about that experience was the look on your face though. You were so upset and it was clear that you were really uncomfortable during that entire debacle but no matter how hard I tried I couldn't seem to make it any better or go any faster. For that I am so sorry. I am told that it will get easier with practice and time and even easier than that when you get to growing a little and your neck gets a little longer so we have some room to work with. In the meantime though I feel terrible about it and dread the thought of doing it tomorrow. Just know that I am doing my best and will do everything I can to get better at it so it isn't so hard on you.

Now even though we have had some answers come out of the last few weeks we have had a few questions pop up in the last few days. It seems that something is bothering you again and no one knows what it is. We thought you were having your "episodes" before because of your upper airway problems but they have started happening again. The trach didn't quite fix everything like we thought it would, or so it seems. Mommy and I spent a long time with you last night trying to calm you down after your heart rate and agitation made a slow climb into the unhealthy zone over the course of a few hours. It took some medicine and a trach change to finally calm you down enough that you could sleep. That didn't work for too long though, you needed another big dose of meds early this morning before mommy got here to keep you calm. Now it has happened two more times today and the doctors have no idea what is going on or what to do to help. We are trying buddy, and we are hoping that this is just another one of those bumps in your road out of here.

Now there is some good news from today but that is mommy's story to tell and I am not going to spoil the secret. She will write you a note later or tomorrow and fill you in but it is some pretty exciting stuff. In the meantime lets try and get some rest since you have been so agitated and worked up today. I think we could all use a good night's sleep. So sweet dreams little man, keep on growing and keep on fighting, you are the toughest little guy your mommy and I have ever met and we are SO proud of you every day.

We love you Connor.

- Daddy

Learning, again...

Hey there Bubba,

Your mommy and I are going to try and get back into a better routine for writing you notes because we know that you like them and they help us to express what all has been going on with you and in our heads. Oh, and we have to update your "fans" as mommy calls them. There are so many people who tell us all the time that they start every day with you or go to bed with you every night. You are continuing to touch more and more people each and every day. I'm pretty sure you are going to have a VERY long waiting list of people looking forward to their first face to face visit with the amazing Connor. Maybe we should hand out tickets with numbers on them like they do at the deli?

But back to being serious. Your mommy and I have been so proud of you the last few days, even more than before. Like mommy told you last night you are being so strong and facing everything the doctors are throwing at you without so much as a flinch or a quiver. They have backed down on more of your meds, they have put you on a twenty-four hour breathing trial, they have changed your trach for the first time, they have switched your feeding schedule to two hours on and one hour off, and to top it all off they even switched you rooms. There is plenty of space in this new room and what is even better is you are almost neighbors with your fellow fighter Ava. She and her parents are now just a few doors down from us so we can visit with them more often. You're right, it is about time we got that worked out.

I know I merely brushed over it just now, but that trach change is a pretty big deal. Changing that first trach was the big step that the doctors and nurses had been waiting on so that we could start moving you around again. I know you probably don't like being stuck to that bed and trust me we don't like seeing you stuck there either. So with that in mind you got to do some moving and shaking today. Not just the kind that you do when you are mad at us or telling us that you need a new diaper either. Nope, not you, you were sitting up and looking all over and playing with some of your friends.

First your respiratory therapist came in, one of the ones that mommy is a huge fan of, and told us that it was time for us to learn how to take care of your trach. So we got some long q-tips, some water, some peroxide, some new trach ties, and some of that sticky foam stuff that you have stuck to your neck. We laid it all out and got ready and the respiratory therapist walked us through what we had to do step by step. He was very good about telling us the things we needed to be careful about but still letting us learn all the stuff we would need to do. We tried to be as quick as we could and as efficient as we could but we still weren't quite quick enough. After a short while (it was probably a lot longer in your world) you were pretty upset with us and we had to hurry it up. We did get everything done though, after a minute or fifteen. I promise, we will get better.

Then your favorite occupational therapist came in and brought a friend with her, a speech therapist. Now that may sound confusing since you aren't really talking or anything like that but they are the ones who are going to teach you to swallow and possibly eat. No promises though, its not likely that you will be able to eat any time soon but they are sure going to try their best to get you ready to do that when the rest of your body tells you it is time. She watched you suck on your pacifier for a while and when you said you were done with that (apparently you speak a language the therapists here can understand) it was time for your occupational therapy for the day. That included sitting up, rolling over on each side, playing with your hands, moving your head around a little bit, and making all kinds of faces. You were pretty happy about it for a little while, even smiling at the therapists. Unfortunately that didn't last too long and you were ready for some rest. But you did get to move around quite a bit and it was great to see you sitting up and smiling.

Then yet another learning experience for daddy. Your nurse came in and told us it was time to cath you and lately we have had a lot of nurses ask us if we are ready to that on our own. Well we have never been formally shown how to do or even had a nurse ask us if we wanted to learn so today I figured it was about that time. So for the second time in a few short hours I gloved up and helped out with one of your daily procedures. It was more mentally painful for me than it was for you. I know this because I was grimacing the entire time and you slept right through the entire thing. I guess that means I did a pretty good job but I would like to say that it is because you have had some really great nurses who have shown me just how to do it so you won't get upset. Another thing checked off the list to get you home.

And now you are resting after all the excitement this afternoon. You look like you need it because you are zonked right now. You aren't the only one though, your daddy is really worn out too. I have been trying to keep up with everything in the world right now so that we can hopefully somehow get a semi-normal life when we get out of here but it seems like just when I start to think I am making some progress and maybe we can stop worrying about these things that are both frivolous and outright malicious I get an email or a phone call that drags me backward again. I hope that it won't last too long buddy but just know that even though I may be exhausted and stressed it has nothing to do with you and I will always find a way to make time for you.

Keep up the good work little man, keep teaching us new things like you have all along. We are so proud of you and still just amazed at you every day.

We love you Connor.

- Daddy

So expressive!

Hi little buddy,

I don't have much time to write you a note but I wanted to at least say hi and update your fans.  The past several days have been the best you've had in a while.  At first mommy and daddy were worried that you were so sleepy and that your heart rate kept dipping down lower then it has ever been.  You have certainly never set alarms off for your heart rate being too low before.   Turns out that the doctors think you have just been working and fighting so hard to breath this whole time that your heart rate was always elevated.  The sleepy medicines were bringing your heart rate down to an acceptable level but since your trach operation things are different.

You aren't working hard to breath at all and those sleepy medicines have slowed things down a little too much.  Therefore we've started the process of getting rid of those medicines.  You were able to kick the two continuous ones (or drips as they call them) within the first day and a half without much trouble.  Now we're onto working on the other two scheduled medicines.  These will take a little longer but we're going to go slow in hopes of preventing you from having withdrawal like you did last time (that was terrible).  It's amazing to watch you breath without struggling.  Your little chest barely moves when you take a breath and the breaths you take seem much deeper.  You don't look scared and when you get upset you're able to calm down much easier.

The next step is to work on getting off the vent.  You are already flying through the tests they have set up for you and surprising everyone.  The machine is set at the lowest settings and you are breathing over it so you really aren't needing it much at all.  Yesterday you were on a pressure trial for 12 hours, meaning you did all the breathing on your own, and today you have will stay on it all day and night if you can tolerate it (as if there's a question).  Connor, you are amazing.  Every nurse, doctor and respiratory therapist that walks in your room says that you are a new little boy.  I would disagree.  You are still the strong-willed and brave little man you have always been you just don't have to use all of your energy on breathing.

So what are you doing with that extra energy?  Making all kinds of fun faces.   Mommy and daddy don't know what's more exciting; watching you breath without a struggle or looking at your cute little face without any tape or tubes.  A lot of kids with CHARGE syndrome have some palsy on one side of their face.  It seems like you may have this on your left side which is why you can't always close your eye all the way.  We weren't sure how much it affected your mouth since we could never see it all the way.  I can't promise how much it will affect you in the long run but right now you are moving that mouth all over the place and super excited to have your tongue free.  You have very distinct looks and your little eyes can say a million words.  So although I may not be able to hear you cry or make your little noises I think I have a pretty good idea what you are thinking.  Connor your face is so expressive.

Here are a few cute pictures although they aren't the best because mommy has been enjoying watching them more than wasting time taking pictures of them.

"Here's a little smile for you mom"

"Check out my tongue"

"This mobile is amazing"

"Enough with the camera already"

Keep up the awesome job buddy.  You are a special special little miracle and I am so proud to be your mommy.  I can't wait to see all the amazing things you have in store to show us.  Sweet dreams.

Mommy and daddy love you Connor!

-Mommy