One piece of silver lining with tube feeding is that Lillian has slept through the night since she was about 3 weeks old, aside from when she wakes up vomiting. (Now mind you–this does not mean that I ever get to sleep through the night. I am a pumping mama and hasn’t gotten longer than a 4 hour stretch of sleep since my third trimester. I average 2 2-3 hour stretches a night, and even less when I roomed with Lillian in the hospital for 2 weeks. I’m perpetually tired.) But as we have been reducing Lillian’s overnight feeds, she has become a less sound sleeper. In fact, she’s been waking up crying, which she’s never done before. And last night was the worst yet, with her waking up crying several times in the middle of the night until Dave finally got up with her at 5:30 a.m. The problem is, although she’s waking up hungry, she won’t take any milk and food orally. It’s such a helpless feeling watching her struggle and refuse any solution.
After her rough night, Lillian continued to have a rough morning. She fussed, pushed away food, cried, and slept, fussed, pushed away food, cried, and slept. I worried a little about regression after the great night of sweet potato eating she had previously, but I also kept in mind the feedback I got from Austria when I reported her regression taking the bottle–“children act flexible and so must parents.” And as I’ve told Dave before, Lillian takes after her mama–she’s not a morning girl.
By midday, she finally accepted a few tastes of mango puree and tried drinking some water from a sippy cup with her local feeding therapist. Good but not great. Next she wanted to suck the pacifier, but in an amazing turn of events, she let me pull it out of her mouth every third suck and squirt several drops of milk on it. Over and over throughout her whole bolus feed, which was about 20 minutes, she let me put milk on her pacifier. She seemed to want me to put milk on her pacifier. She watched me do it without any fussing. Tears came to my eyes over the significance of her consent to having milk in her mouth while she sucked, something she has refused to do for months. Even when she has taken a little bit of milk from the bottle recently, it’s with a cleft palette valve so that she can get milk by chomping rather than sucking. But this afternoon, she looked into my eyes calmly and held my hand on her pacifier and seemed to be saying, “I’m giving you my trust now, mom. You’ve stopped trying to force this on me when I didn’t want it, so now I’ll try it. And you’re right, the milk is making me feel better.”
By evening she was ready to have another go at some sweet potato puree–eating about 2 tablespoons that she shoveled into her mouth herself with her spoon. After that she had some avocado, and then she sucked her paci and let me put milk drops on it throughout the whole next bolus feed. She even chomped on the bottle directly for a little bit. By the end of it, she’d taken about 2/3rds of an ounce of milk. Nothing to your typical five month old, but more than Lillian has taken since she was a month old. I know we still have a long way to go, and it continues to be hard watching Lillian struggle with feelings of hunger she doesn’t fully know how to abate. But when my daughter eats, even a little bit, I feel like a new person, like I might finally be able to put down the hundred pounds of weight pressing down on my shoulders for the last five months.