Grief Kids

It May Only Take A Cheese Puff

It May Only Take A Cheese Puff www.herviewfromhome.com
Written by Christy Margritz

It may only take a cheese puff…

My husband and I were laughing about cheese puffs the other night as I was telling him about getting our daughter to take her antibiotic by offering her a puff when she finished her dose. Those way too orange to be good for you puffs were a great motivation for her and a tremendous reminder of the crazy food struggles we went through with her.  

My spunky monkey has DiGeorge Syndrome that caused her congenital heart defect. Open-heart surgery at six days old and the first month of her life in the hospital was my normal for a while. We came home on an NG tube because she was not strong enough to finish her 3 ounce bottles on her own. She blew us all away and within a week of being home we were no longer having to use the NG tube for her milk. She pulled it out a few days later and there was no going back. If I even came close to her nose with anything, I had a screaming nightmare on my hands! She was not going to let us put anything back down her nose!

A couple of months went by and she was doing fairly well. She wasn’t a big eater and never really increased the amount of milk she was getting. We fortified her formula to add some more calories to keep her gaining weight. Then the reflux hit full force.  I mean you could hear when we were trying to give her a bottle. Blood curdling screams at times.  Some days it felt like we were force-feeding her. She would cry, I would cry. I would question if my milk was causing the issues. It was a daily battle that raged in our house! Her pediatrician and I worked hard to keep a feeding tube away. I knew in my gut if we went that route, she would fall further and further behind in her oral eating.

Then we started on the specialists. We were sent to a pediatric gastroenterologist. I will just say I wasn’t thrilled. We paid a lot of money to sit and talk about her eating habits and then had nothing but a few tips to try when we got home. She saw us a second time and recommended a feeding evaluation be done. Once again – not thrilled! No real answers, they just suggested that my daughter and I basically move three hours away from home and take part in their intense feeding therapy. She would go Monday through Friday 9:00 am-5:00 pm in therapy for eight weeks. I thought that was a bit extreme! Especially for the fact we hadn’t tried therapy at home yet and she was only 9 months old.  I don’t think they were thrilled when I didn’t want to sign up right then and there.

Needless to say, I spent a lot of time crying and worrying.  We agreed to see one more specialist, an ENT.  We also said yes to start feeding therapy in town. When we saw the ENT, I could have hugged him! He wanted to be proactive. He listened to our concerns, looked at us, and was ready to scope her. He wanted to make sure nothing was wrong with her structure and get to the bottom of her not eating.

Fast-forward two months. We had some therapy under our belt and an increase in her reflux meds. Our spunky monkey was being dismissed from therapy! She was eating again! She was gaining weight! And it only took that one stinking cheese puff to motivate her during therapy.  I had a smiley girl asking for more and NOT screaming.  

Find the cheese puffs in your life.  It may only take one.  

About the author

Christy Margritz

Born and raised in central Nebraska, Christy lives in Kearney with her husband, daughter, son, and two dogs. She is a preschool teacher with a passion for worship. Some of Christy’s favorite things include singing, dancing, watching movies, or reading a good book. Most days you can find her dancing and singing with her daughter and son!