Feeding Clinic & Adenoidectomy Update

We've had a busy couple of last weeks with appointments.  First, I am happy to report that Noah made a full recovery from his adenoidectomy and the results have been amazing.  He no longer snores at night or sounds like he's struggling to breath in and out peacefully.  It also looks like he's tasting things a little better.  So we're very happy with our decision to proceed with that. We were even able to cancel his follow-up appointment with Dr. Magit because of how well he's doing, and well, because if we can avoid a germy office visit anywhere during RSV season we will.
And finally, something we had been looking forward to for a long time was our evaluation with Children's Hospital's Feeding Clinic this past Thursday.  Sufficed to say, we were very disappointed with the outcome.  Basically after they watched us feed Noah behind a double-sided mirror for approximately 45 minutes the Speech Pathologist, Gastroenterologist NP, OT, Nutritionist, and Feeding Behaviorist/Psychologist met with us afterward to tell us that we were basically doing everything right and that because of his good weight gain we just had to keep doing what we were doing.  Great, validation that we're doing the best with the circumstances we were dealt and Noah is following his own growth curve and will eventually 'catch-up'.  Not so great that we have to distract him every time he eats or feed him every two hours or deal with his constant gagging/vomiting.  Oh well, he's growing, be strong.  Believe me, I didn't have any false notion that going to this visit was going to be a totally life-changing thing.  That we would walk away with all the answers about why our son doesn't ever want to eat.  No.  What I had hoped was that a plan would be put in place, that they would collectively rally around us and say that they could help.  Instead, 'keep up the good work' and 'this is a very long process that will only get better with a lot of time'.  Well yeah, duh.  I still don't feel better but thanks for trying.  I still feel like we wasted 2 hours of our life having these strangers watch my poor son, and us for that matter, struggle with a life-sustaining activity that should be as simple as breathing.  It's just not a reality for us. I left feeling really defeated and a little sad.  Mostly sad because of this recurrent theme that repeats itself everyday of my life.  The thing that pops into my head after I repeat to myself just how blessed we are that Noah is even here and doing as well as he is.  It's a feeling of being cheated.  Of knowing what it's like to raise a child who is medically fragile.  Of being familiar with terms like RSV, vestibular stimulation, oral defensiveness, etc... When your child's life is measured in things like mL's of medication and ounces of weight gain.  It's a sense of loss because I feel like I can never really enjoy my baby's childhood when it's bogged down with so many fears of the unknown and devastating realities of what-if's.  I learned a long time ago to stop comparing my preemie to the only other world of I've ever known of full-termers.  I've learned to ignore people's ignorant comments or well-meaning advice about things that they have no clue about.  But I'm still here, waiting for the day to come where all these lonely feelings and worry will be a thing of the past but also knowing that that day may never come and I'll have to pick myself up off the ground and move forward because my son deserves nothing but my very best.