They want me to feed my baby

We’ve gotten our report from the hospital when we traveled. Both the labwork and the written report reflected what the doctors stressed while we were there; Annabelle is extremely malnourished and her body’s internal organs are suffering the consequences. Immediately, we need to figure out how to nourish her, but as anyone that has followed Belle’s story, this isn’t nearly as easy as just a trip to the grocery store… Let’s discuss the painful position of being between a rock and a hard place.

At the end of the day, the words that continue to ring in my mind from the doctors were these, “If your primary focus is finding a diagnosis, and we continue this treatment plan and keeping her malnourished; by the time we finally reach a diagnosis, we will have a ‘vegetable’ on our hands with a destroyed body we can no longer repair.” I never understood the severity of severe malnourishment until Annabelle. I never knew the multiple systems and invisible damage it does to the body. I never respected how dire it is for a toddler to be nourished as their brain and body is rapidly growing. All these things are easy when you have a ‘healthy’ child. You feed them! Sure, sometimes they eat chips for dinner, but they’re fed and their bodies have something to break down and use. We wish to believe that the healthcare system is steering our children in the safest directions when they tell us to stop food and put this Medical Food liquid thru a feeding tube – we would like to assume they know what they’re doing and this is safe for our children. Follow doctors orders, right? Hell no. Ive fought for years that something didn’t feel right with Annabelle and her pathetic ‘diet’, I’ve fought for the last year that this isn’t nearly adequate and my voice falls absent on those that have the knowledge and ability to make changes.

Yesterday I spoke with our doctor again, the doctor I trust the most and has been the biggest advocate for Annabelle. She reviewed the physician notes and labwork and told me, “Ashley, go feed that baby.” I was speechless. When I saw speechless, I honestly mean I was lost for words all the while I had 39236354 questions and back-peddling from what she just said. I looked down at Annabelle who was mesmerized by the choo-choo train, sitting in daddy’s arms as we all stood in Home Depot. I couldn’t breathe. I told our doctor that I was so nervous to feed her. Im not scared of food, or her choking, and I am only slightly intimidated by the guaranteed EoE relapse, but more than anything – I’ve never fed Annabelle! It’s been since she was an infant was the last time she actually ate an array of foods! She won’t know what to do with herself. 

And then the fear really sank in.. Oh God, what will happen if she relapses too hard to control and we have to remove ALL foods from her diet. We will have to put her AND us in a mental hospital. I don’t know how I will be able to do that again. It’s taken us so long to work to our lifestyle where Annabelle doesn’t ask or expect the same foods as anyone else. I am about to ruin all that hard work and tears shed. She’s too young to understand what were doing. Good gracious I am terrified.

This was late that evening at dinner. Mady loves to open and eat peanuts. Annabelle just watches with no questions asked. 

So. We are going to feed her. I don’t know which foods we will begin, but I will decide sometime over the weekend. If you were to ask Annabelle, she would request a chicken nugget ;)