Monday, February 11, 2008

Tubes and smiles.

We finally made the difficult decision last week to begin using a feeding tube for Owen. The NG (naso-gastric) tube slips through one nostril and ends up in the stomach where it deposits the much needed calories. It is not a permanently placed tube and we have been trained on both removing and replacing it. It is pretty benign and seems to be working exceptionally well for Owen.

We have tried so hard to get Owen the level of nutrition he needs, but always fall just a few ounces short most days. Our pediatrician, Dr. W., connected us with a wonderful woman on Bainbridge Island whose son developed a serious heart condition at birth. At seven and a half months, he just graduated from the tube. From what I understand, his survival is also a miracle. His mother had extra supplies and wanted to provide training and support to another set of parents in need. It was such a generous act of goodwill for Dr. Walters to arrange this and introduce two sets of parents going through similar struggles. I cannot say enough great things about the level of care Owen has received from Dr. Walters and the staff at Bainbridge Pediatrics.

Owen now gets slow "drip" feeds through the tube during the night and during the day, is fed mostly from his bottle. We were told that it was probably the case that Owen had developed a major aversion to bottle feeding as he knew that only led to vomiting and that when not forced to take more than a couple of ounces at a time, something he can comfortably handle, he would again readily take the bottle. This has happened and we are keeping our fingers crossed that this continues.

Owen now sleeps more soundly, is getting the food he needs and the quiet naps he needs, is not constantly plagued by the fear of losing his food and we have substantially more flexibility in our lives, not having to hold Owen upright for hours a day after feedings.

The even better news, in my humble mommy opinion, is that we are getting more and more smiles and some that seem to be purposeful - an expression based on positive feedback. Owen began experimenting with smiling a number of weeks ago. We've been told by our various support folks that this is a built-in expression in infants and that for most babies, it is reinforced by the visual queue of parents smiling back. In Owen's case, we cheer and laugh and squeal with enthusiasm. Sunday morning, he was smiling and smiling and smiling for Kelsey and I as we cheered him on. The same thing happened this afternoon for Grandma Janet and I...

Owen will be seven months old on Wednesday. It so good to finally see a smile on his face.


karengberger said...

I am so glad that you are connected to a family who knows the road that you are travelling first-hand, who can walk beside you. We also resisted the NG tube, mostly because Katie didn't want it, but it proved to be helpful in many ways over the months she had it. It was useful in administering medications, as well as the nighttime feedings that you mentioned. It took pressure away from eating, which is important. I admire your flexibility and readiness to learn to do whatever Owen needs now.

Laura said...

That just made my day! Thanks Owen! Love Auntie Laura

Tiff said...

We think of you guys all the time and seeing video of Owen was so wonderful. We have only seen pictures, so that was a total treat!! Owen sure has an amazing smile!
Love you guys,