It was Thanksgiving lunch at Joseph’s school. Parents and grandparents had joined their children in the school cafeteria for a special Thanksgiving celebration. Because of Joseph’s multiple food allergies and compromised gastrointestinal system due to short bowel syndrome, I had packed a lunch for Joseph that was both allergy friendly and one that I knew he would eat.
As I’m cutting his hot dog into small pieces, the parent across the table (who I had only met a couple of times) begins chastising me in front of everyone at the table. “You are letting him eat a hot dog?! Do you not know how many nitrates are in those things? He shouldn’t be eating those. They are terrible for him…” She continues as I bite my tongue out of fear of what I would say.
I let her continue. After I had Joseph’s lunch prepared for him to eat, I looked at the parent and told her that Joseph’s GI doctor was the one who told me it is okay for him to eat hot dogs. He needs fat and protein more than anything and because of his multiple food allergies, hot dogs are okay for him to eat. She begins to tell me that her child also has short bowel syndrome and they would never let her eat a hot dog.
Fabulous. You do what you want and I’ll do what I want. End of story.
Before I gave birth to our twin boys at 24 weeks gestation, I envisioned our family sitting down to healthy, home cooked dinners every night. It would be over these dinners that we would share stories from our day. We would laugh and create wonderful memories as we ate our well-balanced meals.
Sure, we still laugh and create wonderful memories over meals but they aren’t necessarily the most well-balanced at times. Sometimes these memories are made while preparing formula for the next bolus feed or while stopped in a parking lot on the way home from vacation to give Joseph his next bolus feed.
In regards to nutrition, our family faces many challenges that make meal times very difficult. Our son, Joseph, our 24 week survivor twin, has short bowel syndrome, Eosinophilic Esophagitis, and a multitude of food allergies. Our daughter, Emily, our full term 16 month old, also has food allergies. At the age of five, Joseph still has a g-tube where he receives the majority of his nutrition from Elecare Jr. formula through bolus feeds given throughout the day.
With each new diagnosis and each newfound allergy, I worry about my children not receiving a well-balanced diet because of the numerous restrictions placed on what they can and cannot eat. To date, Joseph has eleven foods that we must avoid due to anaphylaxis or food avoidance for Eosinophilic Esophagitis. Preparing meals is hard – real hard.
Fortunately, we have been blessed with wonderful doctors and dieticians throughout our journey who have provided so much guidance and support. The one idea and confidence they have instilled in me is that whatever I feed my children is okay. Sure, we strive for a well-balanced diet but that just doesn’t always happen. Besides Elecare formula, Joseph primarily survives on turkey sausage, hot dogs, corn chips, popcorn, bananas, and watermelon (occasionally he will try something new) – not the most well-balanced of diets. While I sometimes hear the voice in the over bearing parent from Joseph’s school in the back of my head, I am confident in what I am feeding Joseph because I know it is safe for him, it is something he likes, and it is something he can and will eat. To be quite honest, I’m just thrilled he’s eating. Joseph learning to eat was a journey in and of itself.
When it comes to nutrition for your preemie, trust your gut. You are the parent. You call the shots. You know what is best for your child. Life doesn’t always turn out the way we think it will and that is okay. Yes, a well-balanced diet is incredibly important but it isn’t always practical or possible. That’s okay – I promise.