Not too sure...

So, I'm really just not too sure where we are headed in regards to Jack's feeding situation.  Here's the background and an update - 4 months ago we left the NICU, Jack was on oxygen but taking everything by bottle.  About a month and half later we ended up in the hospital after he failed a swallow study, they found his laryngeal cleft and told us that once his swelling/redness went down in his arytenoids then they would repair the cleft and we would work towards eating again(good!).  We went home with a NJ feeding tube and would wait until this got better - 7 weeks later, the cleft was repaired - far as we were aware, we'd attempt feedings, if he did well then a swallow study would be done and he might leave the hospital without a tube.  Unfortunately that did not happen.  Jack did not feed immediately, so we were discharged and told to continue with the NJ feedings.  We initiated speech therapy (yay!) and were told that he'd have a swallow study at a later time once he started eating.  Since we started speech, Jack has now been taking about an ounce or less consistently by mouth (yay!) but we have been to the ER three times in the past week to have his feeding tube replace because he's pulled it (boo!).  I've now learned that the plan was to have the feeding tube in for about 4 weeks as the repair heals to decrease scarring at the site and avoid reflux but the catch is that we are allowed to attempt feeding by mouth - so that makes no sense to me.  Also, there is still a concern for aspiration by pulmonology but we haven't seen them since late March and don't have an appointment to see them until late August.  I feel as though we were misled in regards to the healing process of all this and how it will all work.  It is so difficult to handle all of this because we left the NICU back in February with no feeding tube and what we thought was no feeding problems and now we have a whole new situation going on.  This is such a struggle for me and I'm just not too sure about anything at this point.  I wish this all would have been better explained from the beginning rather than finding out new information as the weeks go along.  I know that Jack can take the feedings and I know we'll get through this - here's to thinking positively and hoping for a wonderful swallow study later this week!