What does Jacob eat? (An update)

IMG_0788You may remember from a post a few months ago that we were very excited to start Baby Led Weaning with Jacob. Since then, his food allowance has gone from .5 gram of protein a day to 3 grams of protein! (If you’re new to the blog, children with Citrullinemia are on a severely restricted protein diet. They must receive exactly the amount of protein their body can use – no more, no less. Too much or too little puts Jacob at risk of brain damage and coma, or worse.)

Like almost everything else in my parenthood journey thus far, our solid-introducing experience has not gone, shall we say, by the book.

Initially, Jacob seemed interested in playing with food, but as soon as a lump would hit his tongue he would vomit. Like clockwork. His little face would turn red, his eyes would water, and out would come the offending particle along with anything else that had entered his stomach in the last, oh, few hours. In that way, we lost quite a bit of formula and (horrors) breastmilk. Finally, I had to put a stop to it and introduce purees.  I dutifully went to the farmers market, purchased armfuls of gorgeous organic veggies, and set to making homemade purees, measuring each ingredient and using a spreadsheet to calculate grams of protein per serving – only to have Jacob reject over half of the options I offered him.

Finally, exhausted with the unappreciated effort of producing and measuring my child’s food, I went to store-bought organic purees. Tangential note #1: I recently managed to start a flamewar on the internet in a Facebook group about home organization when I indicated that I feed my child from packets.

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Tangential note #2: There is no limit to the uses of this meme. Game of Thrones FTW. I’m geeking out here, people.

At any rate, store bought purees were a life saver. I could buy one flavor at a time, figure out which ones were his favorites, and go from there, introducing new tastes little by little. Since the protein content was indicated on the label, all I had to do was measure how much of the packet he actually ate. Purees, teething biscuits, and occasionally oatmeal have been the staple of Jacob’s diet for the last few months. (Behold below, the puree drawer image that started the internet flamewar.)

Until a few days ago, when Jacob’s little lips closed tight against the introduction of purees. Frustrated, I steamed up some purple cauliflower from the market, chopped it up, and dumped it on the tray. In it went. No vomiting, no fuss, just a happy eating baby. Carrots! Grapes! (Peeled and quartered! Don’t arrest me, mom police!) Cheerios! All happily consumed!

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I am finding that Jacob is now eating less, and slower – which means we may need to temporarily adjust down his protein allowance and make up for it by reintroducing natural protein into his milk. But I am so happy to see him begin to practice those fine motor skills and tolerate textures!

I also need to correct an earlier assumption of mine – that Jacob would be vegan. In a conversation with Erika yesterday, I learned that many children with citrullinemia will eat cheese and other dairy products as their protein allowance increases with age. These complete proteins are good sources of nutrition for UCD kids. I have to tell you something she said because the image is so beautiful in my mind. “It will be easier for Jacob to be a vegetarian than a vegan. You know, when he is a teenager and goes to a restaurant with his friends, he can always order a cheese quesadilla and be on his way, rather than having to search out a vegan option.” Can you imagine? Jacob? A teenager? In a restaurant with friends? Ordering a quesadilla? It is so normal and beautiful. Isn’t that what we all want for our children?

The hospital visit I almost didn’t write about

Jacob had a few episodes of vomiting and a mild fever last Thursday, which lead to a hospital visit on Friday. Never mind that the vomiting was probably from his maddening habit of shoving his fingers down his throat. Never mind that the “fever” was probably just overheating from snuggling his little furnace of a body in between us in bed when he wouldn’t stay down in his crib. With citrullinemia, we don’t assume “it’s nothing.”

The bloodwork came back. Ammonia and liver function both normal.

I almost didn’t write about this short hospital stay because it was “just another routine outpatient visit.” At some point, taking my child to the ER for bloodwork and an IV became as unremarkable as a visit to the pediatrician.

But today I decided to write. I write to give weight to the unpleasantness that Jacob has to endure on these visits. I write to give life to his medical records. I write to remember how my sweet baby, exhausted from the trauma of placing the IV, slept in my arms on the narrow hospital bed. How his doctor, in a blue wig and red foam nose on the day before Halloween, came to check on her tiny patient, and how his dietician kissed his sleepy head. How his grandmother sat in the plastic hospital chair in the cramped ER room for five hours to keep vigil over her beloved grandchild.

Until Jacob has the words, I will bear witness to all of his story.