Owen is scheduled for a 9 am surgery on the 17th at Children's for a G-tube placement. It will be a two day in-patient stay. Good thing he's not Irish or this would put a serious damper on his St. Patty's Day festivities.
The G-tube is a good thing - even though I was opposed to it even as recent as a few days ago. I just hate to see another intervention, this time a surgical one, and one that requires a stay at the hospital. But Owen is rapidly gaining weight with the use of a tube, is making all sorts of fun noises and is experimenting with smiling all of the time now. He seems so changed. I think it's a combination of coming off the ACTH, having more food and less (no) vomiting. The NG tube irritates his face, is a short-term solution and has created an oral aversion. The G-tube is inconspicuous, does not muck up our efforts to get Owen to eat solid foods and is low maintenance. I know it goes without saying that each decision we make is with Owen's quality of life in mind and given this, and the arguments we recently heard in favor of the G-tube from Dr. McLaughlin (the neurodevelopmental pediatrician at Children's) and the dietician who has been following Owen, it is the right decision. Owen's pediatrician has been encouraging the use of a G-tube since October.
Owen made the rounds last night at an Indianola gathering at Kelly and Dave's (for Corina and Lucy's birthdays) and was so content to be held by a few admirers - all whom were so good with him. It was so liberating to be out and to be with a large group of people who didn't stare at the oddity of the tube or the fact that Owen is different, but rather who smiled, touched him, held him, talked to him. And most of the Indianola kids know him - it warms our heart when they come up and say "Hi Owen!" At one point, I had to search the crowd for Owen - he was with Sarah - she was showing him the light and shadows through the leaves of a very large, loyely tree in the yard. Later in the evening he was smiling and smiling and smiling for Elizabeth. It was such a positive experience for all of us. It is so good to have community in Indianola.
We caught Owen on tape experimenting with smiling again and have promised many of you the video. Please excuse our unabashed giddiness... We are parents who long - and have waited long - for our baby's smiles.
Thanks for thinking of Owen on the 17th. May his belly grow ever larger.
6 comments:
I'm glad to hear things are going so well! I'll be thinking of you and your family on the 17th.
Totally heartwarming, guys! xoxoxox we think of you all the time.
While we still dont know you guys but through a family member of yours and the blog we continue to pray for Owen nightly. His smiles are absolutely precious and we will pray even harder for a fat, fat belly! What a precious gift that boy is. I find myself looking so forward to reading and seeing his progress.
Thinking of you as you prepare to go for the G-tube tomorrow. God bless you all, and each one who assists you. May you feel peace -- and held in love.
I am sending positive energy Owen's way this morning! Love Kristin
PS - that video of Owen brought tears to my eyes! xo Kristin
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