Hand to Hold's Official Blog: Written by Parents for Parents

The Challenges of Good Nutrition

Thanksgiving celebration at school

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.

Receiving a bolus feed on the way home from vacation

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.

Dinner at home

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.

Laura Martin About Laura Martin

Laura B. Martin (GA) is the NICU Ambassador Director at Graham’s Foundation and keeps parents connected with their NICU by serving as a liaison between the NICU and the foundation. She is a former middle and high school teacher and is now mom to Joseph, Campbell, and Emily. Joseph and Campbell, fraternal twins, were born at 24 weeks gestation. Campbell lived for 23 beautiful days. Joseph spent 228 days in the NICU and also experienced a near fatal bout with NEC that left him with Short Bowel Syndrome. He also has a g-tube, auditory neuropathy, hypotonic cerebral palsy, asthma, vision impairment, hypothyroidism and multiple food allergies. Even still, he is a happy and active child. Laura can be reached via email or her personal blog.

Comments

  1. Thank you for sharing your story! I too had similar visions while I was pregnant of what my children would and would not eat. Mine would be the children that asked for vegetables at snack time and finish their plate of organic-filled goodness at every meal. Juice? No way. Hotdogs and ketchup…never! Well, two years after having micro preemies, my tune has changed. My daughter (weighing only 19 lbs at over 2 years of age) will not eat. Every meal is an emotional event that leaves my husband and I drained. On the rare occasions we are able to get her to eat something reminiscent to a normal portion, she will inevitably throw it up. This in itself is difficult, but to have “judgment” of others when they see her small frame or witness her fussiness is really difficult. Yes, I would love for her to eat a well balanced diet. Heck, I would love for her to try a single piece of fruit or vegetable. But this is not our scenario. We know our children best (as do their GI specialists, dietitians, and physicians). For me, I continue to remind myself that people’s confusion and “advice” often come from a place of caring. It’s taken me some time to compartmentalize the suggestions and criticisms, but I now take suggestions and discard any judgment. You are doing an AMAZING job! Thank you for sharing and best of luck with your beautiful family.

  2. You go girl! The last thing you need is stress and worry imposed by strangers! We know that we self inflict that more to ourselves then is ever truly deserved. People don’t really understand all that has happened and your response to the other mother was perfect and kudos to your for your patience and restraint. We do the best we can and we constantly try to over achieve for our little miracles. I often find myself at times standong back and looking at it as, “what is the worse of the two evils here?” And weighing out the overall benefits. keep rocking on girl!

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