I've never had such a complicated relationship with food. For the last 8 months, I've thought about food more than any other subject. Lively was 6 months old when he started ACTH to treat his infantile spasms, which was just around the time we introduced solid foods. The medication made him ravenous, so within a few weeks, he went from exclusively breastfeeding to eating large bowls of mashed sweet potatoes mixed with broccoli and peas. He continued to breastfeed, but I mixed the milk I pumped at work with as much cereal as I could to try to fill his belly.
Then one day, when he was 9 months old, Lively stopped eating and drinking. He would not breastfeed, take a bottle, or eat his favorite pear sauce. I think this may have started due to a combination of medication side effects, and perhaps continued due to multiple intubations, NJ tube placements, and other nasty tubes in his mouth. Lively basically has not eaten since. It has been over 5 months, and he's not showing any sign of eating today.
Meanwhile, I have become FOOD OBSESSED.
A word of background -- due to my struggles to breastfeed my daughter when she was born 3 years ago, I became very interested in learning as much as I could about how to help women breastfeed. I am an obstetrician, but as a new mother, I realized I was not equipped to help myself, much less my patients, work through their breastfeeding struggles. I committed to learning as much as I could about breastfeeding, through my own reading, working with lactation consultants personally and professionally, attending breastfeeding conferences, and by researching specific issues to help my patients. The more I learned, the more I became convinced of the amazing health benefits to mother and baby of breastfeeding. I just started a breastfeeding clinic with 2 pediatricians and a lactation consultant, and plan to continue to make this a priority in my career.
With Lively's many health struggles, I felt at times that breastfeeding was the only thing that I could do to help him. It defined me as his mother. In general, I feel there is something very basic about being a mother and feeding your child. I take pleasure in seeing my 3 year old finish a big dinner. I smile quietly with new understanding when my mother-in-law heaps second servings of food on my husband's plate.
So when Lively stopped eating, I felt like some part of being his mother was stolen from me. The breastfeeding was obviously a big deal to me, but not being able to feed my baby at all (other than through a tube, with a pump) has been especially hard for me. I think about food and feeding him all the time. Maybe in a different chair he'll be more comfortable and want to eat. Maybe now that he gets bolus feeds four times a day he'll get hungry between feedings and want to eat. Maybe if he sees his sister eat he'll try. Maybe something sweeter. Maybe saltier. Blander. Spicier. Cheesier. Chocolate? Ice cream? From a spoon? A fork? A bottle? Sippy cup?
No. Nope. No way. Uh uh.
Feeding Lively involves offering pureed foods that he is reluctant to touch and usually resistant to putting in his mouth. If he happens to tolerate the smell, or (rarely) the taste, he isn't able to coordinate moving food to the back of his tongue so he can swallow it. Every teeny tiny spoonful (or the small amount smeared on my finger) comes right back out. So a 30 or 40 minute feeding session results in minuscule amounts being swallowed. We do this 3 or 4 times a day.
I've given a lot of thought to taking Lively to an intensive feeding program. I'm still considering it, in fact. He sees two occupational therapists a week, and we may add speech therapy soon. I look online for information, both from reputable and not-so reputable sources (and then I go to work and tell my patients to be careful googling medical conditions), and I am currently considering incorporating a method invented by a mom who successfully transitioned her son from g-tube to oral feeds whose blog I found.
Food is stressing me out.
Not only do I have to pump nutrition into Lively, but there are 3 additional people in my house who need to eat dinner every once in awhile. We tend to do pretty well, thanks to the kindness of friends, co-workers, family members, and even some very, very generous strangers. (For those of you not famliar with mealbaby.com, check it out. A friend of Pete's registered us both for his church and for Pete's work, which resulted in home-cooked meals delivered to us almost every night for 6 weeks when Lively first became sick. My friends, family, and co-workers came through in a big way as well.) Seriously, if not for the food support from people who wanted to help, there would have been many, many nights that Annie would have eaten PB&J while Pete and I went hungry. One big lesson for me: if someone is having a rough time, don't ask, Is there anything I can do? Instead, bring over groceries, sandwiches, anything. Bring food.
When Katie's son Lively was diagnosed with infantile spasms in February 2010 at 6 months old, she and her husband Pete were told, "You have a long road ahead of you." You can read more about her family's journey down that road at Highway Lively.