This topic keeps coming up. Many have quickly recognized the work that Ellie's diet change is taking when it comes to mealtime, or when it comes to preparing her special diet. But most do not seem to understand the implications of trying to actually get out of the house. Here is my attempt to illustrate and compare:
When breastfed, babies are so easy to pack for. Mama? check. Diapers? check. Good to go. All fitting neatly in a normal - to - small size bag. Risk level: forgetting diapers means a stop at the grocery store.
When using commercial formula things are a bit more complicated, and at one point I had the nerve to complain about it. Bottles? check. Formula? check. Heated water? check. Diapers? check? Bag must be a bit larger, and may need to include a thermos for water. Risk level: forgetting any items requires a stop at the grocery store, or finding a restaurant that can provide hot water or ice.
When using prescription formula the diaper bag must get even larger, and is more inconvenient. Bottles? check. Entire can of formula? check. Heated water? check. Ice to cool down heated water if needed? check. Extra clothes for the child prone to vomit or blow out? check. Extra clothes for mama? check. Diapers? check. And in Ellie's case: Homemade wipes? check. Cloth diapers? check. As you can see the bag required is much larger to accommodate the specific needs of a special child. Risk level: substantial. Not enough formula packed means no food. The fear of getting stranded somewhere too far from home without anything to feed my child spurred me to keep a plastic tub in the back of my car with extra formula, bottles, diapers, clothes, bottled water, and whatever else we were restricted to at the time. That covered everything except for the issue of hot water, because Ellie refused to drink her bottle unless it was warmed properly, regardless of how hungry she got or how loud she yelled.
When on a special diet, or in our case, a diet of bone and meat broth, meat puree, and a vegetable, getting out the door becomes much more complicated. We start by packing the 'regular' stuff: diapers, wipes, extra outfit, throw in an empty bottle or two. Then we have to stop and evaluate. How long will be gone? What will we have access to? How far are we traveling away from home? How long will we be in the car? We have two thermoses we can use, that can sustain us for about 3 hours outside of the house. Longer than that we must pack an ice chest. And try to figure out how we would heat more broth. After considering this we begin warming the appropriate amount of broth, pureed meat and vegetable on the stove top. If we are going to be longer than a quick run to the library we have to make it hot enough to last, which is too hot to drink. We warm it and fill the thermoses, and then fill an additional small thermos full of ice to cool down the broth if she needs to eat before it has cooled enough. (This always makes me a bit nervous because it waters down the nutritional content and calories in her bottle, and is another reason we can not stay out too long)
The bag required at this point is rather large. In fact, our bag usually wont fit in the basket of our McClaren umbrella stroller. I am currently shopping for a large backpack that would be similar to one used hiking. And the risk level? Tremendous. I have already made the mistake of not packing enough broth for her on two separate occasions. She just ate more those mornings than she normally does, and the result was a hungry baby who had nothing to eat until we were able to get home.
The three hour mark is a crucial one. When we are out and she is refusing to eat, that is about how long we can stretch her before having full meltdown. At home she eats one 9 ounce bottle every 1.5 - 2 hours, on average. But due to her sensory issues, she sometimes shuts down when we are out and about and refuses to eat. It may be too much stimulus, she may be too busy, or the moon may just be in a funky position. Who knows. Sometimes we can confine her to a stroller and block out surrounding stimulus, or put her in the carseat, and she will be agreeable and eat, allowing us to stay out longer.
Overall, part of our new normal requires us to be at home much more than before. Not because we have become anti-social hermits, but because it can be damaging to Elianna. Or because I have to make broth. And sometimes because I am too pickin tired to deal with the checklist. So for those of you who have gone out of your way to visit us, sometimes driving quite a distance, thank you. Thank you for allowing my two girls some play time, and for allowing this mommy to enjoy company where I know I have everything I need for Ellie. And for those times I am able to get out of my house, thank you for understanding our limitations, and allowing me to use your stove top (but I will bring my own pot)!
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