First Bottle because of GREAT news

Simon had testing done today and the connection of the esophagus was a SUCCESS!  NO LEAKS!
So already Simon has had his first bottle...

He did not take much but not a big surprise!  He still has the feeding tube in his belly so he is getting all he needs. The difference soon will be that he can take his nutrition via mouth or the tube, depends how quickly he gets the hang of things.

Save the Date

We are planning a fundraiser to offset the costs of the medical care for Baby Simon.

Please save the date of Friday, August 10th from 4-9pm at St. Paul Catholic Church.  I will link a Facebook Event to the blog in the next couple of days.

We are looking for raffle prizes and donations of food and drink from local businesses.  We are in the process of seeking those items.  If you have a connection to anything that would possibly get a donation please let us know.  Mary Ellen McAvoy is leading the event with the help of many of Molly's friends, etc.

Mary Ellen can be reached at memcavoy@sssnet.com

Thanks!!

Baby Shower Time

The scheduling of a shower for Baby Simon has been a long journey.  In fact had we not determined to cancel the original date of April 14th (which just happens to be Simon's Birthday) it would have been a crazy day!  Waiting proved to be best!  After a happy week with successful surgery and a much healthier Simon...who had his ventilator removed while we were at the shower, the timing seemed perfect!  Simon, when ready to come home, will have everything he needs!  Thanks everyone for coming!

  

Room 2

Simon's condition has improved enough that he has moved to room 2.  Remember there are rooms 1-4.  Simon had to go from 4 to 1 after surgery.  Slowly making progress!  He looks amazing this week, very healthy and much happier!  Hopefully more news soon about the repair.

Baby Simon

Have had the pleasure of visiting baby Simon the past few days.  He is really looking good and strong.  He is still on the morphine so the tube is still in his throat and all of that, but the nurse said he is being taken slowly off of it and has not needed extra doses or anything.  He wakes up when I visit and looks right into my eyes and just smiles, he is precious!  Poor kid, Molly and I sound alike so he likely thinks it is Molly for an early AM visit.  I just assume he wakes up because he loves when I visit :)   The nurse and I were giving him all kinds of compliments this morning about how handsome he is and he just smiles!  Oh, he melts my heart!

So it is a waiting game now until they can test the repair and make sure it has no leaks, etc.  As soon as Molly updates me on all of that I will be sure to post.

Molly looks so rested and calm!  Finally, the break they all deserve with a successful surgery!

I was thinking this morning while having a chat with Simon, we were all arriving in Florida a year ago today to kick off the wedding festivities for Molly and Clint.  What a difference a year makes!  Molly and Clint will celebrate their 1st wedding anniversary on Wednesday, June 27th.  While I am sure they envisioned their toes in the sand this weekend, or maybe a fun trip to Vegas.....here we are!  Simon could not have better parents who are so strong and love them and each other more than anything!  So hopefully a year from now that exciting anniversary celebration can happen...and of course I will babysit Baby Simon...or take him from anyone who thinks they are going to watch him (yep, talking to you Debbie!)  Just kidding!

Post Surgery Update

Yesterday Simon had his surgery to connect the esophagus and stomach.  For the last 11 days Simon has been in a forced "paralyzed" state.  He has been laying on his side and sleeping.  The point of this was after the 1st surgery, which was not successful, to allow the area to stretch out.  Simon handled this fairly well.  He had a couple of very scary moments as being forced in this position was not easy on his lungs.  He is very swollen and looks very sad.  It is hard to recognize the beautiful baby you all see in the pictures we've posted.  Hopefully we will see that same baby return in the coming days.

So the surgery was successful yesterday!  Everything is connected as it should be.  Simon will remain asleep for the next few days to allow things to attach and all of that good stuff. Once he is awake there will be some tests done to make sure that there are no leaks or anything.  So we are over the major hurdle of attachment. Next we wait and see how well it was attached and go from there.

That is all I know at this point.  Once I have more we will be sure to post.  Molly & Clint took a moment away from the hospital for a well-deserved celebration dinner last night!  I am not sure they've been away for more than a few hours in weeks!  Simon is one lucky little guy!  He has also proven once again what a fighter he is through all of this, he has been through more in 60 some days than most of us will in our lives.

Thank you for your thoughts and prayers!  I know they've kept everyone going through this and the power of prayer once again shines through with Simon's great day yesterday!  This week both of grandma's of Simon have a birthday....I think they have the best gift ever after yesterday!!

Poor Simon

Simon had a rough and scary day yesterday.  Laying on his side is tough on his lungs.  I visited today and he definitely looks like he has been through so much.  Molly wishes she was sedated and on her side for the next few days as well.

The good news is that the gap has decreased by 1.5cm already, goal is 3cm.  So things are moving along nicely there.

Not much to say at this point, it is a painful waiting game at this point.  Please pray for Simon, Clint & Molly.  This is all so much at once.

Hopefully we will have surgery details by this time next week.

Molly reports that Simon is still doing ok... We've had a few scary moments today, but he recovers. They surgeon was in twice today and says we are making progress already. I mistakenly said they were stretching his esophagus; they are actually stimulating its growth. This is the first time this has been done at Akron Children's, so we will see how it goes.


So an X Ray this morning shows that compared with yesterday there has been 1cm of growth.  They were aiming for 3cm in 10 days.  This is GREAT news as it is already working!  Molly is hoping that the rapid growth continues and that Simon is able to have the surgery sooner than later.  


I called to check on things and Molly was finally home resting.  She and Clint have been alternating 4 hour shifts.  I told her to turn her phone off and sleep!  I am sure she did not listen, but at least she was attempting to rest.


I hope to visit tonight or tomorrow morning and will learn more about his condition at that time.

From Molly....
"Thank you to everyone who prayed for us and checked in on us today. I am having a really hard time getting back to everyone, but please know it's appreciated. Simon is doing ok, but he is in very serious condition. We ask that visits be limited to family for the time being. He has an open wound and is being kept paralyzed... His immune system isn't fully developed yet and he cannot get exposed to anything. Thanks for understanding."




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
In case you have not heard, the surgery was unable to be completed.  This means Simon, as stated above is in need of some prayers.  Plan B is to try again in 10 days while the surgeons did something to allow the esophagus to stretch itself in order to be repaired.  I remember Molly telling me about this particular procedure.  She was dreading it knowing that Simon would be in the condition he is in right now for 7-10 days.  However, I recall her saying this procedure, if successful, has an amazing long term success rate!!  So, me being the positive on, although easier said that done in the last 24 hours, would like to believe all of this pain and struggle will make way for better results in the very near future.


Thanks for your prayers and thoughts for Simon and his family.  I will try and update as much as I can from Molly over the next few days as I know she is overwhelmed with keeping everyone updated.  However, your care, prayers, and love mean everything to everyone right now.  Thank you!
--Beth

So Much news

Sorry, end of the school year is forcing me to neglect the adventures in Simon's life.

Well, tomorrow is the big day!  Surgery Day!  We all can't agree more that Simon looks stronger than ever and has grown to over 7 pounds.  Molly and Clint are so busy with things so I may stand corrected on some of the info which I will share.  Tomorrow the surgeons will perform the surgery about 10:45am.  The 1st step is to remove the surgically placed feeding tube in his abdomen.  This will allow the stomach to "float" more freely and hopefully move even closer to the connection with the esophagus.  What is not connected will be surgically repaired.  This, as you can imagine, is a very delicate surgery will take several hours.

Simon will return to his newly private room where he will not be able to eat for 7-10 days as the connection will need to be checked for leakage, etc.  From there, stay tuned as I am not sure what happens.  It appears a month stay in the hospital is next after the surgery.  This could be shortly after 4th of July that Simon will be home.
Last night Molly and Clint held a baptism for baby Simon.  A priest from St. Francis DeSales met everyone at the hospital.  Simon was wheeled out of the NICU into a beautiful room at the family center.  He only needed his g-tube and a portable monitor.  He did great!  He had lots of friends there!  His God Parents Aunt Shannon,  Aunt Beth & Uncle Mark.  His grandparents were there and his Aunty Nancy and Aunt Mary Ellen too!  It was a beautiful night.  I will upload pics later.  Here is just one...

I love that the family has now moved to "arguing" over who will hold Simon and play with him etc.  I think this means we can finally see the light at the end of this.  Not to down play the importance of tomorrow or the struggles and challenges ahead, but I think peace was the theme last night and we all know Simon is going to be okay and his strength, all of our prayers will win out in the end.

We will post surgery updates tomorrow.

Please, please pray for Simon!  Please pray for the surgical team.  May they have their best day on the job EVER!  May they be guided to fix our little guy and make him all better!  Pray for Molly and Clint and the grandparents as they wait tomorrow, as we will all wait tomorrow, for the long surgery to come to an end.

THANK YOU!!