Surgeon Appt./Feeding Tube Surgery Scheduled!!!

So we saw the surgeon yesterday, which went quite well, outside of us being there for 3 hours and me being late to work. Our appt. was for 12:30 and we did not see the doctor until 1:30pm, he met with us for a while and then we had to see the RN for feeding tube education, which was confusing because for some reason she had to show us all of the different feeding buttons even though those were not the kind we were getting. Then off to the surgery scheduling desk to schedule. I was hoping for sooner than later, but they had nothing until 10/29/2007, so there goes our Halloween which is one of my favorites. However I am going to take James to Boo at the Zoo the weekend before Halloween and still get him a costume.

So back to the feeding tube, my husband and I left of course feeling over whelmed to say the least. The doctor had asked us if we felt we had exhausted all efforts of feeding with James prior to this decision and we felt that we have with the exception of going to another state which just is not feasible right now. He agreed that we lack feeding therapist and tend not to have the most intensive therapies available, when comparing to other states. Which is so puzzling because people come from all over for care at Good Samaritan and Phoenix Children's hospitals. He did say he is working on a program. We will be getting the Bard Peg feeding tube. The scary thing to me is what we learned about the care at home, (ie), if the PEG comes out within 2 hours the opening could close, if the Button moves around could make opening larger and the most concerning was how sore she said he would be for the first week or two and having to insert the tube will be discomforting, I wanted to cry. In the back of my head I question are we doing the right thing, but I think we are James has only gained 1lb in 9 months.

Our surgeon shared with us that he had a preemie as well 13 years ago, 26 weeker, who though was slow to gain he gained more than a 1lb in 9 months. He shared some of his son's photos with us and said no one understands the life of preemie parenting unless they are the parents to a preemie. Very comforting to no he has not only hands like god for surgeries but knows the life that goes along with caring for our special miracles. He was so personable and comforting that I have great confidence in him performing surgery on James, again. He is the Surgeon that performed James' PDA and bilateral hernia repair as well as circ. way back in the early days of NICU living. He also went on to explain all the things that could happen to James later if we did not speed up his weight and growth. So I am ready to get started.

Thank you for all your responses to my last post it is helpful to know that I am not alone.

Tracy