feeding, fibrosis, and flashing

One of the things that has been most difficult about being Rosie's mom is feeding her. Of course, it's a heck of a lot easier for me to feed her than it actually is for her to eat. When I think about how difficult it must be to keep on swallowing when your throat collapses in on itself, I am awed at how brave my little girl is and what an insanely hard worker she has already become.
The tracheomalacia is what makes eating so hard for her. I got some breastfeeding help at the hospital after she was born and ordered a few books on breastfeeding, but books, for one of the first times in my life, completely let me down. NOWHERE in ANY of the books I read was there a "What To Do If Your Baby Eats For 90 Minutes At Each Feeding And Never Seems To Be Full Even Though You're Producing Plenty Of Milk" section. Because Rosalind has to fight herself with every breath, regulating eating and breathing is harder for her than it is for normal babies. Most babies eat for 10-20 minutes on each side... that was most definitely not what we experienced. And then the cystic fibrosis makes her insides all slippery like a fish I once tried to hold onto that was most definitely NOT dead like my husband had told me it was before I picked it up, so all the food she ate (before we started giving her the right medications) was going right through her, causing her to be hungry pretty much right after she finished each meal. It was exhausting and frustrating and disheartening for both of us. I started pumping after she was done eating because I was convinced she wasn't getting enough to eat. I'd bottle feed her what she couldn't get from me, which prolonged the entire process by about another 45 minutes. Looking back, I'm not exactly how I survived the first few months before we knew what was wrong. Or that anything was wrong, because I am sure now that there is not a more confusing or self-doubting time in one's life than being a new parent. Eventually though, it got to the point where I had to take a hard look at what I was doing and decide if it was truly best for Rosie. The bond I felt with my little girl when I was feeding her, knowing that I was the best person on the planet for doing exactly what it was she needed, was fulfilling in a way I had no idea it could be. But watching her struggle so hard to do what should have come so naturally and been so comforting for her caused more pain than any plugged duct ever could.
I remember one night in particular... I was trying so hard to figure out how to feed her. I had called La Leche League leaders, seen lactation consultants, read book after book... I cranked up the heat in my room, undressed us both, and sat her tiny body on top of mine, convinced that the skin-to-skin would work and that it would be the missing piece in feeding her. She'd start to eat, and then scream. I'd try to feed her again, and she'd try for a few seconds, and then start screaming. I didn't know what to do, didn't know how to help her, and didn't know what was wrong. Finally, I asked Bryan to make up a bottle of formula and feed her. He took her away from me to do just that, and I sat and sobbed and sobbed and sobbed. I'd never felt more helpless, or more like a failure. "Babies are born knowing just what to do," was what every book and every person was telling me. So obviously, I thought, the problem must have been me. When I realized how difficult it was for her to breastfeed, how much energy she had to expend simply to keep from suffocating, I made the decision to stop breastfeeding altogether. Now, I spend hours on end every day attached to my pump, and I bottle feed her what I produce. It is so much easier for her to eat from a bottle. So much less work, even though it still takes about an hour for her to finish one meal.
Anyway, that's how, yesterday on our trip to Missoula to visit the cystic fibrosis team, I came to be pumping in the car without a nursing cover. It was just Bryan and Rosie with me, and I wasn't exposing anything the two of them haven't seen and don't fully appreciate. Unfortunately, it's also how I came to be flashing the trucker that we happened to be passing at a very inopportune moment. And that's how he came to be honking his horn at me as he experience what I'm assuming was the most surprising part of his day.
Flashing truckers. Just the latest on the long list of things I can tell Rosie I did in an attempt to feed her as a baby. Get ready for teenagedom, little girl. Mom's going to have so much in her guilt trip arsenal, it's not even funny!
Well, maybe it's funny for the trucker.