Dear Reflux...I am breaking up with you.

Reflux..I hate you...seriously.  Dealing with reflux has been so hard on all of us.  From the puking to the pain to the being positioned the right way, all of it is just so tiring.  Warren's reflux has caused so many issues with his development.  He has always had poor weight gain and oral aversions.  Today we had a PT evaluation and it looks like he has hypotonia and torticollis.  Hypotonia is low muscle tone/weakness and torticollis is basically a twisted neck.  He favors his left side.  So we are now adding PT into his treatment plan.  Let's just recap what we are doing now to treat his reflux.  He is on prescription formula called Neocate, which we are mixing to make it 24 calories per ounce and adding in oatmeal cereal to thicken it up.  He is also on prevacid to help with the pain associated with the reflux.  He is receiving OT to help with his aversion to food.  

My heart just keeps breaking because I feel so bad for my little man.  His first 9 months of life have been so difficult.  He is happy but it's still hard not to feel so defeated.  When looking at the big picture I know things could be a lot worse but living in the moment makes me realize what a rough life he has.  He doesn't deserve any of this.  It makes me hate my body for failing me and delivering him so early.  I know that it was out of my control but it is really hard not to feel guilty.

He never had any reflux in the NICU so I thought we would be fine.  As he is getting older the residual effects of his prematurity are showing more and more.  I always try to turn every situation into a positive but I feel like I just keep getting knocked down.

But let's look at some positive things.  He is happy.  He smiles and laughs and is a great sleeper.  He has gained 10.5 lbs and has grown 10 inches since he was born.  He started eating his bottle awake.  He has the most beautiful blue eyes and most affectionate personality.  He is the love of my life and I am truly so thankful for him.  He loves to cuddle but also loves to play. He is just an awesome baby.

I know that with time and the help from PT/OT that things will get better.  His GI also hopes that as he gets older he will outgrow the reflux.  We just need to keep plugging away.  We will get there.  Thanks for reading this post and sorry about being so down, but today has just been a really rough day.  Oh and just to reiterate...reflux..I am for real breaking up with you.    

Staring down reflux