So conflicted

I meant to post yesterday and well...life happened. The last few days have been filled with lots of conflicting emotions and opinions. We were able to get in to see the pediatrician on Tuesday morning. I went in fully prepared to go over our next steps for getting the NG tube placed. Well, her ped had a completely different idea. She was completely opposed to having the NG tube, not only opposed but doing everything that she could to put a fear into us of how horrible doing this to Payton would be and that if we want a tube we should just go for the G tube. I was pretty unhappy with her approach. Believe me there is no part of me that wants to see my beautiful baby girl being fed through a tube, I don't want this. In the same breath I don't want to keep trying the same things over and over that have not worked in the past until we don't have a choice but to go to the G tube.


We will be seeing a GI Dr the 6th of March and until then we will be giving her plan of action a try...that is until we run out of money for her plan. Sadly most of what she would like us to purchase and change is not covered by Payton's insurance which means a lot of unexpected out of pocket expense for our family. It is so hard for me, it feels like I have to make the choice between my children. Do I do what they are asking for Payton at the cost of what the other kids need? I hate this feeling! So just to break down what we will be trying over the next several weeks: 2 adult doses of Miralax everyday for 2 weeks to "clean" Payton out, Colace everyday as well as part of the "cleanse", a daily high quality probiotic (at $50 every two weeks NOT covered by insurance), adding at least 2 Pediasure's to her diet every day on top of her 3 meals a day (partially covered by insurance), putting all of Payton's meals through a baby food grinder so that she doesn't have to work so hard at her feeding (a step backwards in my opinion for someone who says she just wants to see Payton move forward), a two week intensive feeding therapy program at Children's hospital Memorial Hospital branch, appointments with a dietitian to go over changes to make Payton's diet "higher quality".  Did I mention a lot of this has been done before??? The only new thing is adding the probiotic. Her Ped just wants to see the results of all of this herself. Not sure if she just doesn't trust me or what the issue is. I feel like I was not listened to. I feel like every time I spoke up or said I wasn't sure we were doing what was best for Payton right now she looked right past me to get the approval from my husband instead. I know that he has seen her more than I have, that quite frankly when it comes to Payton's medical care I am now an outsider looking in, but I am still her mother.

I just continue to pray for wisdom for the Dr's and for our family as well as guidance and peace in all of this.