Simon's Surgery Report...

Here is the update you've all been waiting for!  I did not know how to say it all correctly, Molly spelled it out for us.  Thanks for your prayers!  ~Beth

                                                             Check out my new glasses!

 Simon kept crossing his fingers the day before his surgery!

 

From Molly:
What a day we had yesterday!!( I apologize if this comes out scattered and all over the place... I am still so overwhelmed from yesterday, it is difficult to explain all that happened).  Simon was scheduled to have the scar tissue cut out of his esophagus and have the initial repair repeated.  In other words, they were going to cut the esophagus in half and start over. This is a major thoracic surgery with many risks involved.  He would have been on a ventilator and in intensive care for some time.  This was not a decision we made lightly.  The surgeon and I have had countless conversations about what the next step for Simon should be and how he is progressing.  To look at Simon, you would never know that anything was wrong with him, he looks like a healthy 16 month old.  The problem arises when feeding Simon.  He cannot eat like a normal toddler.  He has a very difficult time swallowing anything very big, and also struggles with acid re flux.  I spend a
 great deal of my day pureeing, chopping, mashing, overcooking, etc, the small variety of foods that he can handle.  Despite my best efforts, several times a week he has terrible coughing episodes because food is stuck in his throat.  In spite of this, he is doing remarkable.  Though he is very skinny, he is growing at an acceptable pace, and is quite tall.  He is developing well and has started walking.  He is behind in a few areas and has recently started wearing glasses, but there are no huge red flags considering his prematurity and his condition.  There are so many children with esophageal atresia who are not as fortunate as Simon. Some are tube fed for so long, they have oral aversions.  Some do not have enough esophagus to work with and have to have their stomach pulled up to make the connection.  Some are tube fed around the clock even after they are released from the hospital.  We are so blessed that these are not our realities.


 So after a very long conversation with Clint, Dr. Soldes (Simon's angel) Dr. Parry and myself yesterday we all came to the same conclusion... The risks of going forward were just too high.  No one in that room yesterday knew what was going to happen if we proceeded as planned. Dr. Soldes put it best... "The greatest threat to GOOD is BETTER" Simon is good, maybe as good as he is going to be.  To risk all he has overcome just seemed too scary.  So the docs went in with a scope to take a look and decided that we wold leave well enough alone.  We will work with him as he grows to teach him how to chew really well and drink lots of liquids while he eats.  So for now that is the plan.  I cannot put into words how relieved I was to hear this yesterday.  I had the worst feeling about the entire thing, I JUST DID NOT WANT TO DO IT! Not at all.  So when the docs brought up they were considering not moving forward, I was shocked at first, but so incredibly
 grateful.  Dr. Soldes and Dr. Parry have been with us through every step of this, and I have never doubted them for a second.  They told us yesterday they had been talking about what to do next with Simon for 6 months.  I don't doubt for one second that is true, I truly believe they care deeply for his well-being. I can honestly never say enough good things about everyone at Akron Children's.  I have talked to families who have traveled literally across the county and the world to get the level of care that Simon is receiving 7 miles from our house.  Those doctors, NICU docs and nurses, Maternal fetal medicine, outpatient surgery, the surgeons office staff, and countless others have all taken such great care of our little guy and us too! There just aren't words to express how grateful we are.
Thank you to everyone who called, sent texts, facebooked, sent cards, came and waited with us, sent lunch, and most of all prayed for all involved yesterday.  There is not one doubt in my mind that all those prayers were answered!!  Our journey is far from over, but Simon shows us everyday that he is the strongest little guy around, and I know he will be just fine!



Look who turned ONE!

From Molly...

Sorry it has been so long since we have updated.  Simon is doing well, not much has changed recently from a medical standpoint, still having surgery every 4 weeks or so.  The surgeon ordered some tests and once those are done, we will decide what the next step will be.  We sought a second opinion from Boston Children's Hospital, where they have a program 100% dedicated to Simon's condition.  They have one suggestion for a treatment which has not been mentioned by our doctors, but they gave the impression that our surgeon was doing pretty much exactly what they would be doing.  So while going there isan option, Akron Children's has provided the most amazing care, and there really is no reason to at this time to make such a drastic change in his care.

Simon turned ONE on April 14!!!  I cannot believe he is one already.  I never knew that time could go so quickly, yet painfully slow at the very same time.  He had an amazing birthday, and enjoyed his cake very much :) .He has four teeth, with more on the way any day now.  He is crawling all over the place, and pulling himself up to stand, though he seems in no hurry to start walking... and that is just fine with me.

I will be sure to update as soon as we have some news about our next step with the surgeon.  Our appointment is on May 13th, so hopefully we leave that day with a concrete game plan. Thanks so much for caring about and praying for our little superman!!

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!!!

Update from Molly about Simon

Molly sent me this today!  Helps when she sends exact info as I am bad at keeping up with the medical terms.  I am sure Molly wishes she knew none of this, but she is definitely the expert!

Simon's doctor is really trying to find a solution to get the esophagus to stay open so he doesn't have to operate so often.  So in 2 weeks when we do this again, he is going to try injecting a steroid called kenalog directly into the scar tissue in his esophagus.  The hope is that this will slow the stricture so we can spread the procedures out  bit.  If that doesn't work he is considering going back in and cutting the whole piece of scar tissue out and repeating the repair.  This is obviously not what we were hoping for.  The surgeon said he has never had a stricture that he could not get to stay open with dilation, so he is pretty frustrated too.  I know he has Simon's best interest at heart and will figure out a solution.  All the things he has mentioned are things Boston Children's hospital does everyday... they have a program which is entirely dedicated to esophageal atresia.  It is also where Dr.  Foker (the Dr who came up with the procedure that grew his esophagus so it could be repaired) practices.  Anyway, the point is, Dr. Soldes WILL figure it out, I have no doubt in my mind.  

Look who started on cereal!!!!!!  I am thinking he likes it! : )  Since he is gifted (LOL) he feeds himself already!

Here is just a happy, lazy day!

It's that time again

Simon is in need of his routine surgery again.  This will be the norm for the indefinite future.  Poor Simon's little opening in his esophagus just does not stay stretched enough to stay open without surgery.  He still has the little string from his nose to his throat that he has makes sure it is open at least the width of the tube.  I would day that tube is no thicker than the center of a Q-Tip. After the surgery, when the esophagus is dilated it is 3cm in diameter for the opening.

So back to Akron Children's they go tomorrow for the surgery.  Simon did much better recovering the last time.  It takes a couple days to get the anesthesia out of his system and then he feels good until a day or two before his surgery. When he needs the surgery he is not feeling so well.  So today is a long day for Simon and Molly as they await the surgery tomorrow.

I visited with Simon 2x last week.  Both times he was super happy and full of smiles!  He is rolling around a bit and it seems like he has so much he wants to tell you!  I just love him so much!!

Blogger is acting up today, but I have pics to upload.  I will add them soon.


Please pray for Baby Simon that they do a great job on his surgery tomorrow!  It's getting into cold and flu season and both of these things would be really bad for Simon to catch.  Please keep him healthy!

Surgery Again

Poor Baby Simon has had a rough week or so.  As you know he needs the surgeries every couple weeks to open the tube (aka his esophagus) and make it easier to swallow, etc.  Simon was ready for that surgery last week and actually sounded like he had croup he was so closed up.  Today they finally did the surgery.  He did well and is in recovery as I type this today.

Simon has been very busy with various therapy appointments, I don't have the details yet but will update when I get them from Molly.  I am sure we will also get some 5 month stats, he will be 5 months already next week!!

Here are some recent pictures:

Poor Baby Simon

Simon came down with his first illness, sounds funny to say about a little guy who knows the hospital better than any where.  He came down with croup.  Molly reports that he pretty much barks all night....they feel like Simon is a puppy.  In better news he is up to 11 pounds!!  That is a full 7 pounds since birth!

Next week they go to a gastro doc at the Cleveland Clinic to get some needed relief for the reflux.  I feel badly for Molly when people say, "oh I get it, my child has reflux too."  Where truly, we don't get it!  Reflux for baby Simon and his condition is HORRIBLE!!  Molly and Clint knew this going into everything and it is not a surprise, but poor baby!!  Imagine your worst case of reflux ever...then start multiplying.  

His next surgery is this coming Wednesday, September 5th.  Please pray that Simon does well.  This is another routine surgery to open the width of the esophagus.  These will continue for quite sometime.

Simon is smiling all of the time, starting to giggle.  He holds his head up so well.  I have never seen a kid make the eye contact Simon makes.  He also happens to have the most beautiful eyes I've ever seen.  Of all people I know, Molly has the bluest eyes....her brown eyed baby however, has eyes of beautiful shiny glass, I can't even describe!  I hope everyone gets the chance to look into his little eyes.  Molly and I sound alike when we talk so I can fool Simon for about 30 seconds that I am her so he gives me some great stares.  


Here is some info on the Baby Simon team for the walk on September 23:
http://ach.kintera.org/faf/search/searchTeamPart.asp?ievent=1026535&lis=1&kntae1026535=DB870402D67B4659BEC28991AE62666B&team=5179240

Baby SImon

Not much to report as Baby Simon is just growing and changing more and more each day!

Here is Baby Simon after a long day of medical appointments, clearly he is stressed out! haha!!

He continues to have surgeries every couple weeks to be sure the esophagus is open.  It is stretched long enough from the main surgeries.  Now it just needs help being wide enough and that must happen quite frequently.

Molly is getting involved with the NICU at Akron Children's as Team "Simon Says" will be taking part in the "Walk for the Babies" on Sunday, 9/23 at 9am at Akron Children's.  Let Molly know if you'd like to walk with Simon's team!  Should be a great event.

Can you believe how much he is growing each day?  Sorry the pictures are screen shots, the facebook app is terrible now and this is the new way, for now! ;)

More fun at the Simon Fundraiser

Thanks to Ron McAvoy our event was on the blog at St. Paul Church.

http://saintpaultoday.blogspot.com/


Here are a few more pics...I still have more to upload...

Here is Molly and baby Simon!  I have one of the 3 of them...and check out the St. Paul blog too!  (sorry Clint.. :)

Our raffle ticket tables were filled with amazing items!  Thank you to all who donated and congratulations to all of our winners!!!

 This is Mary Ellen and myself, we helped plan with the event with a few of Molly's friends too.  It was a lot of fun....but what a day!!

This is Simon's FAVORITE nurse from the NICU, Lindsay!  She attended the event with her parents!  I have to admit the NICU is an amazing place, but even better when she was there when I visited.  She just loves Simon so much...and everyone loves her!!

Thank you!!

The event for Baby Simon and family was held last night at St. Paul Church.  The amount of prizes donated for the raffle was amazing!  Everything from gift cards, to a photo session, golf, Corn Hole for kids, princess basket, gift wrap, movie night, wine, pasta, and so much more!!  We also held a 50/50 raffle with the winner taking home over $400!!

We had around 300 people attend!  THANK you to everyone who came and thanks for all the messages, we know everyone is busy and its hard to get away!  A DJ came and donated his time which was great background music.  The food was so kindly donated by Guy's Party Centre, Italo's Pizza, and Parasson's.  We had so much help from so many people to pull this event off which resulted in an extremely successful event for Baby Simon, Molly & Clint!

I keep getting calls today and e-mails for those who missed the event and would like to donate.  The pay pal address is simonconger2012@gmail.com   THANK YOU!!!  The donations have far exceeded what we even thought could be possible.  The kindness of friends, old and new was overwhelming.  The members of St. Paul Church who attended and supported the event was so nice to see. It's so true, there are no better neighbors than those who live in Firestone Park, the best place we've ever lived!!  The kindness of friends who have never met Molly, Clint, or Simon but attended to show support because of a connection through a family member or friend really meant a lot to all of us.  THANK YOU does not seem like its enough.  After the event last night I was thinking about times when people say, what is one of the favorite days of your life or a really awesome experience?  I can honestly say I've been blessed with amazing experiences, opportunities, and adventures.  However, last night ranks up with one of the very best.  The kindness of a community, both locally and extended counties away....and kind donations from states away, means the world to our families.

I have a few pictures but will have more soon.....if you have any from the event, please e-mail me at bethbugner@gmail.com and I will upload them here.  Thanks!!

Simon's Event featured in Beacon Journal

http://www.ohio.com/news/jewell-cardwell-benefit-to-help-fragile-baby-thrive-1.325588

Please see the article in the Akron Beacon Journal today!

Hope to see you Friday!

Please say some prayers for Simon as he is having surgery this morning.  We will update on how it goes later.

Surgery #2

Simon will continue with his surgeries to dilate his esophagus this week. On Wednesday he will have this done again and likely every month.  The purpose of this is to continue to open up the esophagus.  Molly mentioned the other day she knows it needs done again as he can't really spit up right now, so she knows the space is getting tighter in there at this time.

Simon has had a little bit of issues with this feeding tube.  He had to have it worked on in the ER the other night as it was bleeding and is infected.  He has to have this in for a while.  The good news is that he almost always eats by bottle and does great.  I fed him a bottle on Friday!!!  He did great and is just a PERFECT baby!  So beautiful and just such an awesome little guy!  He is 9# 13oz now as well!!

The big day is Friday!  Simon's Fundraiser at St. Paul Church on Brown Street in Akron.  We will be in Boeke Hall...this is on the far side of the school and church.  Look for the balloons! :)  Thanks to everyone who has sent messages that they are coming, who have already donated, and whom are helping with donations, etc.  We really appreciate it!  See you Friday, Aug 10 from 4-8pm at St. Paul.  I hear there will be a very special guest of honor in attendance!!!!  Keep your fingers crossed he bounces back from Wednesday's surgery!

Update

Molly sent over an update...Simon is up to 9 lbs 11 ozs, which is the 5th percentile. He's eating well, he and the dog are getting along. He loves to ride in the car, he goes right to sleep. Clint is staying with him all by himself next Sunday, that will be a first. Surgery seems like it will be every 3 weeks or so.  I notice Molly also mentioned that Simon gets up to eat in the middle of the night and just goes right back to sleep, what a perfect little man!


The surgeries will be to dilate the esophagus. It is an out patient surgery, Simon had #1 of these on July 16th and did very well!

 Plans for Simon's fundraiser are really coming along!!  We hope to see you there. If you know you are going to attend please reply on the Facebook Event at https://www.facebook.com/events/146130098857413/ or feel free to e-mail me at bethbugner@gmail.com  We just want to do our best on the planning side of things!
We will post the amazing list of raffle prizes, etc. soon.  The list is great!!

Next Surgery

Simon will have his next surgery on Monday, July 16th at Akron Children's.  The purpose is to dilate his esophagus.  This was scheduled before he left the NICU to come home and is one of the necessary things for Simon and his condition.

Simon will be 12 weeks old on Saturday!  He is in the 3rd % for weight at 9#5oz and for height 10th % at 23 inches.  He looks great though and the Dr. is not worried!  Molly's friend Athena had a baby at about the same time that Simon was born, they look comparable in size!  I think Simon will be just fine with his little peers in no time.  He looks amazingly healthy!

So keep Baby Simon in your thoughts and prayers over the weekend!  Molly and Clint are getting their time in now for being full time mommy and daddy minus all those nurses and machines!  So far so good!

If you visit, please be extra healthy and no kiddos around Simon yet.  He has to be germ free for all his surgeries and he still has wounds, etc. from all he went through.  Molly will hand you purell, so be prepared! :)

Thanks for all the support of the August 10th fundraiser for Baby Simon!  We are so excited to have this event to help out for the care he has received and will continue to need.  Hope you can join us!

I am leaving for vacation so I hope I can find wireless to update on the surgery Monday!  It will be good news, I just know it!

Here are some pictures from my visit with Simon..

 I waited almost 3 months to hold him!  It was hard to leave him!

 Can you say EYE CONTACT?  That boy is a looker!  Wow, what a little guy!

 Look how little he is! :)  Such a good baby.

81 Days later...

Baby Simon in HOME!!

Here he is on his first car ride!

So tonight Molly, Clint & Simon will sleep under the same roof for the very first time!!

Simon Says "GO HOME!"

We have been hiding a little secret just to make sure it was official, but Simon is coming home!!  Thursday is the big day.  Molly & Clint had a goal of the 4th of July, which was all but laughed at by the surgeon at one point.  However, this little miracle man is ready!

Thank goodness for the shower we had a couple weeks back.  Clint and Molly are all prepared and ready!  Simon is coming home!

On a completely selfish note, we get to hold him now too!  Today my mom held him and she even posted on FB about it!  If you know my mom, she hates FB, must have been quite the moment!  So excited, we've all waited so long.

I am getting lots of e-mails if Molly & Clint need meals, etc.  I think this is great!  Feel free to e-mail me and I can keep you in the loop.  Let's see how things are for a while.  I think they just want to pretend to be normal...but then once that wears off we can go from there!  :)    My e-mail is bethbugner@gmail.com

I will be sure to post some homecoming pictures later this week!  Happy 4th!  Simon will be thrilled to celebrate his NICU independence!

Fundraiser for Baby Simon...Save the date

Please feel welcome to join us for a Baby Simon Fundraiser.  The event invite is via Facebook at https://www.facebook.com/events/146130098857413/?notif_t=plan_user_joined   However, if you don't have a Facebook Account feel free to e-mail me at bethbugner@gmail.com

The event will be on Aug. 10th from 4-9pm at St. Paul Church in Akron (Brown St & Misson Drive)

Donations are appreciated and accepted at the door.  We will have dinner, drinks, raffle prizes, 50-50 and more!  Come out for a fun summer night, while supporting the care and medical expenses of Baby Simon.

Please just let us know if you have questions. A pay pal account is being created as well for those who wish to make a donation but are unable to attend.  I can also send you an address.

If you know any business who would be interested in making a donation, just let me know.  We are also looking for a DJ.  Thanks!

Look who weighs 9 Pounds

Simon takes bottles now!  He is doing well and potentially has a little reflux, but we knew that.  Just have to hope it does not get any worse.

FINALLY, after almost a month, Simon is able to be held!  Molly went to the NICU at midnight last night to hold him!  They said Tuesday and she took them up on it.  He looks great and seems happy.