Thursday, September 1, 2011



I am sorry for the lack of updates…we have been home for a week now.
The surgery was a success. He did so much better than the doctors expected…as always Seton proves his doctors wrong. I think he enjoys it. Seton was released from the hospital on Thursday (8/25/11) morning…3 days earlier than expected. He did not need any of his pain medicine after Tuesday evening. We are now 10 days after surgery. He was doing great last week. His main incision looks great and is healing well. He gained 5.5 oz. in the hospital after they expected him to lose weight. He currently weighs 11 lbs. 6.5oz.

The past few days he has been in a lot of pain. The spot where his tube enters his stomach is causing the pain. Every time we move him or change his diaper he screams, you hear a very loud heart breaking scream! The only pain medicine we can give him is Tylenol every 4 -6 hours, which does not seem to help him when he is really hurting. We will go back to see Dr. Nirgiotis and Dr. Habersang next week, and at that point I think we will know when they will place his permanent g button. When he gets his permanent button the pain he has now should not be a problem.  I was going to post pictures of his incisions but decided not everyone would want to see them.

So here is a picture of him before the surgery, in the waiting room.

In his cute yellow hospital gown before surgery

After surgery resting in mommy’s arms

Hanging out in his bed Monday after surgery

Tuesday after surgery feeling much better

Getting ready to go home from the hospital on Thursday

Today, asleep and comfortable at the moment

And the last picture taken Sunday night before his surgery. 

As I sit here today watching my sweet boy sleep, I am reminded of the beginning of Seton’s journey into this world. The very scary days of our past, back in February when we found out something was wrong. The joyful days of last summer, letting our family know we were expecting baby. The happy and sad, comforted and frightened days of March after Seton, was born. Now the surgery he had last Monday, it was a large step in Seton’s journey. Only God knows the future steps he will take.

Today I am still unpacking and washing gifts from my baby shower, partly because he could not use them yet…others because I was afraid of the memories…if God was to take Seton home. Seton continues to progress and for that I am thankful.

I will try to post more often. I can not promise that I will post daily but I can try to post more pictures of his activities especially when he starts therapy again, and starts doing more.


"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 1:11

"So we don't look at the troubles we can see right now, rather we look forward to what we have not yet seen. For the troubles we can see will soon be over, but the joys to come will last forever." 2 Corinthians 4:18