just wanted to pop in and give props to all the current EPers!
My son (now 30 months) was a 33 weeker, and could ever latch, though I worked with 6 LC's, tried to BF every day, etc. He simply didn't have the oral motor skills. I was encouraged right after his birth to start pumping by an awesome LC in the hospital, who set me up and sat with me while I pumped. Then she gave me a handout on the benefits of breast milk for preemies, and I was committed to giving it to my son, no matter what. I EPed for 13 months, when his extensive allergies forced us to put him on elemental formula (with disastrous results- turns out he is highly allergic to corn, the basis for almost every formula produced).
At 15 months, after trying to find a formula he could tolerate for months, he ended up hospitalized with severe failure to thrive. (He had been off breastmilk for a while- I just continued to pump for 2 months afterward, freezing it in hopes that he would get to transition back.) Testing showed that his colon and esophagus were badly damaged and he was unable to absorb nutrients from anything. We eventually found a very restrictive medical formula he tolerates, but it is vitamin and mineral deficient- he spent over a year being hospitalized every few weeks for treatment of these deficiencies. It is thought that he has a very rare gastrointestinal and metabolic disorder, as he is still unable, at 2.5 years, to tolerate any intact protein in his diet.
Every person in my life (except my husband) assumed I would stop pumping and transition to formula within a few weeks- surely by the time he came home from the NICU. I did not! I pumped at work, I pumped in the car, I pumped everywhere I went. I pumped while parked in front of the Washington Monument (wish I'd taken a pic!) and got up twice a night to pump. I started hearing things in the pump motor sounds, and I felt intensely hostile toward my pumps a number of times (I ended up with one at home, one for the car, and one for my office).
My son is still not diagnosed, but several of his specialists have remarked that my breast milk most likely saved his life. Had he been put on formula, his malabsorption would have been earlier and more severe, and he would have been too young to bounce back.
I have a 3 month old daughter now, and she has no oral motor problems, so I am finally breastfeeding! Unfortunately, she is much more sensitive to animal protein in my diet than my son was, and I am on a soy-free vegan diet so I can nurse her. The lower calorie and protein intake have made my supply tank, so I am taking domperidone (just started 2 days ago). It is working, and I am able to pump twice a day and get (as of today) an additional 10 ounces to freeze. If she regresses for some reason and ends up unable to nurse, I will pump full time for her.
I just wanted to share my story- reading this thread while I was EPing, especially in the early days, helped me keep my sanity. NOBODY understood except people who had BTDT, and getting the validation that (a) it's a tremendous accomplishment and (b) it's absolutely worth it kept me going day to day.
I wish you all the best of luck!