Sunday, September 9, 2012

GI Doc Update

We went to the GI Doc last week and Raygen is 2'5.09 Tall, 23lbs 8.9oz.  She lost a little weight from a few months ago, but that was the doctors plan.  To get her height and weight more close to where babies are normally at her age.  I love how doctors always want to run a marathon when it comes to making changes in our routine.  I, like any mom whose baby is tube fed, wants nothing more then our babies to be off the tube.  I think Randy and I have been moving toward this goal ever since we brought Raygen home and we are doing well.  Raygen is off the tube for over 7 hours a day and gets two bolus feeds, plus working with the bottle and taste time with baby food.  When we met with the GI doc and the dietitian they decided they wanted to speed things up a bit.  They completely changed her food recipe and wanted us to have her off the pump all day long, giving her 132ml bolus feed every two hours.  I know that if your not familiar with pump feeds that might not make sense but right now we give Raygen 60ml bolus and they want us to give her 132ml???? That is a big difference, especially to a little tummy.  I hate that when we go to the GI doc we have a new dietitian every time, and of course each one has their own ideas of what to do.  When we left the doctor office we were so confused and our heads were spinning.  I came home and read the paperwork they sent with us and decided I didn't like the plan and wasn't going to do it.  As far as Raygen's diet her new plan was to completely take her off of Alimentum and her Beneprotein and have her solely on Pepatem.  They are adding her water into her pepatem so I would no longer need to give water bolus, just pepatem, but I just can't see how all her nurtion needs are being met.  I have learned through Raygen's journey that when I'm not comfortable with a change that it's better to figure out what I think is best for my daughter and go with it.  I called the GI doc's office the next day and stated my plan.  My plan is to keep Raygen on her Alimentum and Beneprotein mix and continue mixing this with the Pepatem.  We will do half Pepatem and half formula mixture and increase her calories since she did loose some weight and she is more active.  I will continue to keep giving her water bolus.  We will continue moving her rate up on the pump which will slowing allow Raygen more and more time off the pump and I will continue to work on giving her bigger bolus while she is off.  Feeding takes time and patience.  I am more of a fast walker then a sprinter and I think doctors should be that way too.  I know my mind is at peace with keeping with my plan and I know I'm doing what is best for my daughter.  My only advice is follow your gut.  In my opion the parent is always right.  If you don't agree don't be afraid to speak up or say no.  I know I sleep better knowing I'm doing whats best for my children, not what best for the doctors.