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Then, the honeymoon ended, and the end of February brought a cascade of seizures like we hadn't seen in months. It felt discouraging to be stepping back from progress. Had we pushed her too hard? Did we overwhelm her with all the therapy? Or did her brain just need time to process? We completed our weekly therapy with Dr. Oliver and just put a pause on everything. Her seizures continued to come. But . . . I consoled myself, at least she's growing.
On February 28, we took her to her 18-month check-up. I was excited to weigh her--those round little cheekers would have to mean we were nearing the 13 pound mark!
At 9 months, Addie weighed 12 lbs 7 oz
At 12 months, Addie weighed 12 lbs 9 oz
And at 18 months
12 lbs 5 oz.
Complete and utter FAIL!
I felt devastated. This is my expertise--diet and nutrition-- and my baby is not growing! What about those round cheeks! Weren't her legs looking a bit chubby? What happened? The extra fat in her milk? Was it the increased seizure activity taking its toll? What an embarrassment!
As I stood there comprehending the numbers on the scale, I started questioning my psyche. Am I the opposite of an anorexic? They see themselves as fat so keep starving themselves, but I see Addie as chunky and so I don't feed her enough?? What about those fat cheeks? As I looked at her on the doctor's table, with new eyes, I thought, "Oh dear . . . those scrawny legs and those protruding ribs! How did I ever think that she was gaining weight?"
That brought on another slew of questions as my Anne-of-Green-Gables-imagination went to work: What if I am one of those mothers who deliberately sabotage their children's health to get attention and pity? What if the doctor is going to call the state on me? They'll come to my door and take my kids away to foster care. I pictured myself in an orange jumpsuit, hugging my kids with bars of iron between us.
Still, my brain persisted: What if I'm just making this entire experience up, and if I just stopped, Addie would get all better? The joy of that thought yanked me from the black hole of my imagination. My mind knew it would take too much work for my brain to get past the reality of sleepless nights and the daily stress of a seizing baby! If I was going to make something up, I'd let myself get sleep for sure, and Addie definitely would not seize . . . EVER!!
Once that emotional whirlwind passed, my rationalizing mind entered the scene: "Desi--its not your fault. You've tried your best. She seizes continually. That takes extra calories. She doesn't tolerate a higher feed rate. She vomits when you push food into her. You're boosting her milk with extra oil already. What more can you do? At least she's maintaining her weight, mostly."
Then the fear mind: "What is the doctor going to say to me? What if I'm not humble enough to take the counsel? What if I'm found in "contempt of the doctor's office"? What if they take control of feeding Addie and take her off her epilepsy diet?"
And finally, my grounded mind: "Desi--did you consistently fortify Addie's milk with extra coconut, cream, or olive oil?"
"Well . . . no, I cannot say did. Sometimes I was just too tired to take the extra step to add oil to her milk. Sometimes I just forgot. Sometimes I just thought, "I'll do it next time . . .she's gaining weight . . .it will be fine."
My grounded mind again: "Desi--you're doing all the right things. You just need to be consistent about it. Fortify every bottle of milk you give to Addie."
How I love the no-nonsense practicality of my grounded mind!
Now, of course, my sweet pediatrician did not lecture me or criticize. She simply said, "We need to get this baby more calories!" Since February 28, I've been consistent! Mashed avocados, nut butters, and olive, coconut, and grapeseed oil have been added to Addie's g-tube menu.
In March, Addie continued with lots of seizure activity and profuse sweating that tried to rob her calories. Double ear infections took us back to the doctor's on March 28. But in spite of all that, guess what she weighed!
March 28, 1019: 12 lbs 15 oz!
Consistency! It works!
