Amazing News

Simon went in on Wednesday to have surgery, as planned.  The surgeon and I had spoken previously about getting rid of the string in Simon's nose, but he wasn't 100% sure he was really going to take it out.  Much to my surprise, when the doctor came to the waiting room to get me, in addition to saying everything went great, he also said the string was GONE!!! 

     

The string was the doctor's insurance policy of sorts to make sure the esophagus was not able to close completely.  Early on, there was more than one surgery where his esophagus was only open the diameter of the string.  The string served no other purpose... it is not a feeding tube, that is in his belly.  The doctor is confident that we all know what to look for now, and that we will be able to get him into surgery before it gets too tight.... thus the string is no more!! Other than for a couple minutes here and there in the NICU (when Simon pulled his tube out) this is the very first time we have seen his beautiful face without something taped to his cheek and going down his nose.  Needless to say, we are over the moon!!

Overall, the surgeon is very happy with the progress Simon has made.  The plan from here is to dilate every 6-8 weeks (instead of 2-3) and see where that gets us.  I asked about repeating the major surgery and he said though it is not off the table, that for now, we can put that decision off for a while.  All in all it was an amazing day!! Simon woke up from surgery in a wonderful mood, he was smiling and flirting with all his beloved nurses (his favorite thing to do).  So he is home, and doing great!! It is so nice to be able to kiss his little cheek and see those beautiful dimples!! The next surgery should be right before his FIRST BIRTHDAY!!!  I can’t believe how quickly the time has gone.

Picture Time!

Baby Simon, Enjoying the Super Bowl!  Feb, 2013.

 Baby Simon LOVES to eat, but really enjoys feeding himself!

Simon's partner in crime!  

Can he be more happy or perfect?

Simon waiting for Swim Class, he loves it!

Can you believe this little guy started off this tiny!  What a difference 10 months makes.

  Thanks for all your thoughts and prayers.

SIMON UPDATE

Molly Sent over a Baby Simon Update:

Baby Simon is growing and changing everyday.  He has two bottom teeth and is working on more.  At his 9 month appointment he was 16 lbs 9 ounces and 27 inches long. He still not quite on the chart for weight but his height is in the 10th percentile.

We started him in swim lessons at the YMCA and he loves it!!

Up until Christmas time he was having surgery to dilate his esophagus about every 2 weeks and receiving injections of steroids at the same time to try to keep his surgical site open.  At his last procedure on December 20th the surgeon decided he needed to see exactly what was going on in there.  The decision was made to go without dilating for 4 weeks and then have an upper GI done to see how big the effected area actually is and what to do next.

I was a nervous wreck waiting 4 weeks!! He has never gone that long without a procedure... I was sure he would be chocking and coughing and miserable.  Well in true Simon fashion, he did GREAT!!!  Clint and I were shocked, we did not have to use his feeding tube at all, which is such amazing progress!  So on January 21st we went to the hospital for his scheduled procedure.  They let us stay in the room while the did the swallow study, which was great.  The best way I can describe what his esophagus looks like... You know those balloon artists who twist balloons to make animals and stuff?  In the x rays his esophagus looks like one of those balloons that has been twisted in the middle.  It is nice and open and then there is a really narrow part and then it opens back up again.

The doctor is thrilled with how well he has stayed open, though it is obviously closed, just not completely.  The point of waiting and doing the upper GI was so the surgeon could see if he could go in and redo the initial repair surgery.  If the length of the problem area is short enough (which it apparently is) he could go in, cut out the existing scar tissue and connect the two fresh ends.  There are risks involved with doing this, as it is major surgery involving moving his lung, a ventilator, chest tube etc.... all things Simon has already experienced.  I spoke to the surgeon on the phone and he seems to want US to decide if we should redo the procedure now, or wait a whole longer and see what happens.  There are so many pros and cons to every possible scenario, we aren't really sure what to do.  I personally feel like I don't have quite enough information to make an educated decision at this point.

In the mean time, Simon will be having a dilation surgery (number 14) on Wednesday February 6th.  I am hoping to pick the doctors brain a little more at that time and have him guide us in this decision.

I am so sorry that I have done such a poor job of sharing updates, I will do my best to keep everyone posted as things progress in the next few weeks.

As always, thanks everyone for your prayers and concern for our little man, it means the world to us!!!