Ian updates

Baby boy has been home for a month now, and every week there has been at least one or two doctor visits. This week we finally got the ball rolling with the Early Intervention program, so he will be seen regularly by various therapists soon. His development is delayed and they don't know what to expect from him, but we all want him to be the best Ian he can be.



We are hoping to have private duty nursing care arranged for him by early next week, so that I may return to a full time work schedule. I have much to do and I can't afford to be off of my game. I am also bleeding leave time, Nd will not accrue additional leave for the rest of this year. What I have is what I have. Ian makes me feel like I shouldn't be working outside of the home. I feel so inadequate as both a mother and employee. I feel guilty for not being at home enough or able to attend most appointments and guilty for not being at work enough or "all there" when I am there. If I could stay home with Ian we wouldn't have to find a nurse that we may not be able to afford.

I feel home bound with Ian's tube and feeding pump. Were it just those item, life would be simpler. Unfortunately, he also requires a Farrell bag ( gastric pressure valve) due to the procedure he had to handle reflux. The Farrell bag complicates the physics required to ensure he is receiving the amount of nutrition needed. We've tried to go out with Ian, pump and Farrell bag on a number of occasions, all of which have resulted in us turning off his feeding pump. He is fed almost continuously via his feeding tube, so when his pump is off he's not eating. The Farrell bag must be used during feeding so his reflux procedure won't become undone.

Needless to say, we don't get out. We lug Ian and his IV pole to my Grandma's, but true family outings are nonexistent. I don't want to starve my son while we enjoy a time out together. The physicians have offered ono real help regarding the Farrell bag."Turn off his feeds for a few mins," they say. Well what if we needed a few hours, like visiting the Dr and having to wait two hours to be seen. That bag, though its keeping him from being in the NICU may be the sole reason we can't take a road trip to see our parents and sibs in NJ or GA this year. We haven't given up yet, but after one more earnest try, we will be prepared to accept this small, annoying factor of our situation.