The Bailey Brag

It’s no secret that our little Ev is small. You can just look at him and see it. He was actually the heavier twin at birth (by 2 ounces) and faithfully kept up with Blu for several months as they grew but around 9 months of age her weight kept climbing but his began to bottom out. At his 12 month checkup his growth curve, which had always been considerably below where it needed to be as a result of their prematurity, had dipped a bit. Soon after his 12 month checkup he began to exhibit signs of pickiness (or so I thought) and I didn’t pay too much attention to it. Too many times I have rushed my kiddos to the doctor over something that was a temporary behavioral issue believing it was something much bigger. As the weeks flew by he continued to all but refuse food without a full on struggle at meals (me holding his little hands down so he wouldn’t pull his food back out of his mouth) so just to be on the safe side I took him to the pediatrician to rule out a sore throat or an ear infection. He checked out perfectly healthy with the exception of his weight. It had been 2 months since his 12 month checkup and he had dropped more weight (or rather his curved had dipped even lower because he had not gained an ounce but had aged more). Our pediatrician was not happy and ordered us to begin giving him high calorie protein shakes twice a day as well as take him to a GI specialist in Chattanooga to have him seen just to make sure there isn’t a problem we are not seeing. I had already been force-feeding Ev his 3 bottles & 3 meals per day so hearing that I was going to have to add an additional 2 bottles a day I knew it was going to be challenging and it is. I immediately bought vanilla and chocolate shake mixes and, athough this sounds super yummy to most, Ev hated it. He’s never had anything that sweet before and he struggles with things that are cold and these shakes are ‘served best cold’ although I do set them out and allow them to at least warm up to room temperature. But not only does he not like them, he already refuses his regular meals and bottles so there’s no way he is interested in more. If this continues, it will be hard to rely on these shakes to provide the additional calories he needs.

So yesterday we took Ev to see Dr. Laman with TC Thompsons Children’s Hospital. After a thorough checkup he was able to come to two conclusions: 1. Our Everest has Eosinophillic Esophagitis which is where an allergy to a specific food or a group of foods has a reaction and causes his esophagus to close up making it hard for him to swallow his food (which explains why he attempts to “fish hook” every bite from his mouth and throat or (although after that first suggestion I really didn’t hear much of anything else that doctor said) 2. Our Everest is a picky eater (which I don’t think he is having made every bit of his food by hand knowing how much he loves the different tastes) and will need high calorie protein shakes and/or ultimately an NG tube if he refuses them and continues to drop weight. WHAT???

So it looks like we are headed back to Chattanooga either Monday evening or very early Tuesday morning to report to TC Thompsons CH for outpatient testing where they are going to put my tiny little & fragile baby boy under anesthetic in order to place a tube into his esophagus as well as run several more tests and biopsies while he is under. To say that I am worried is an understatement. I am sick with worry. My pediatrician called me last night to ease my worry and he, as did the GI specialist, explained it will be extremely easy to treat this “EE” if Everest does in fact have it and much easier than if he does not and it turns out that he is simply a very picky eater. Once they begin treatment in babies with this allergy they begin to eat like mad and get fat and happy very quickly, so they say. I want fat and happy for my Ev. He is so small and we knew he would need a little extra stamina to be all that God has planned for him to be which is why we gave our mighty little man such a big name. I can’t imagine what it will look like on Tuesday when I see his lifeless little body under anesthesia and every time I imagine it and/or think of the risks associated with the anesthesia and procedures taking place I want to vomit. Everest has already overcome prematurity, perinatal drug addiction and a heart defect…he is determined to live up to his name.  “Lord, wrap our baby boy in your arms & breathe strength into him! Amen.”

Please join us in praying for Everest maybe toss in a few for this sappy little mama who can’t seem to stop weeping. Thank you!