My son, Clark, was born at 30 weeks, weighing 2 1/2 pounds. He was tube fed starting at 9 days old, starting out with a whole .5mls of expressed colostrum. The thing I remember most after his birth was (from the operating room table) asking for the lactation consultant to bring me a pump. I kept asking and kept asking until, FINALLY, 4 hours later, a Medela Symphony showed up at my bedside. At that moment, it was the most beautiful thing in the room. (Clark was, of course, in the Neonatal ICU).
I remember being so excited about learning how the pump worked and finally getting to try it out. I pumped religiously, around the clock, every 2 1/2 hours. I met some of my best NICU mom friends in the pumping room, as we dragged in there with our bag of pumping accessories.
When Clark was 9 days old, he contracted pseudomonas sepsis, an obscenely deadly infection, from an infected ventilator. The same ventilator that was actually keeping him alive, go figure. Neither the doctors nor we knew if he was going to live or die. That's when my pumping schedule took a nosedive. I couldn't eat, I couldn't sleep, I couldn't do anything except worry about him. My husband and I moved into the Ronald McDonald house and we were so thrilled to see 3 huge deep freezers full of pumped breast milk for other babies whose parents lived there. I tried and tried but couldn't get back into my old pumping groove and my supply suffered.
He didn't "eat" for days following his illness, so of course, I was able to get ahead of him and build up a nice stash of milk. But, by the time he came home, almost 3 months later, he was slowly catching up to me. We tried and tried in the NICU to get Clark latched on, but he has what is called micrognathia, which is an undersized jaw. He never could get a decent latch and even at the moments we thought he might, he had no strength to nurse. So--I kept pumping.
He made it out of the NICU formula-free! A month after he came home, my supply had suffered so much that I ordered domperidone. It was a miracle worker for me and doubled my supply, which, in all honesty, barely helped me keep up with Clark. We kept trying and kept trying to nurse. Finally, when he was just over 6 months old, he was able to latch and nurse. However, he only had enough energy to weakly nurse for 5 minutes every hour and a half. By then, we were great friends with the LC's at the hospital and tried every method they could give us to get him to nurse normally, to no avail. Of course, he lost weight because he was getting no hind milk.
By that time, he was in treatment for his congenitally dislocated hip. When he was 8 months old (developmentally, and size-wise more like a 4 month old), he went on a nursing strike, never to return to the breast. I was crushed, there are no words to explain how badly I wanted to ditch my pump and nurse my baby. At 10 months old, he went into a body cast to set his hip into place and started refusing my milk all together. I had to resort to mixing my own milk with apple juice just to keep him hydrated. He was still exclusively (besides the juice) breastfed, and was nowhere near being able to eat food, so this was quite a predicament we were in.
As you can imagine, my supply tanked from that point on. He refused the breast, he refused my milk in a bottle, I was completely crushed. We tried everything we could do to get him to take my milk alone and nothing worked, we even tried donor milk. He was losing weight in a very bad way and we tried every milk you can think of, preemie formula (which he had never received before), goat's milk, cow's milk, heavy cream, yogurt. At that point, we were desperate. I continued to pump.
Finally, by the time he was 13 months, after 3 whole months of being refused, I decided to quit pumping. My guilt was palpable. I had my milk and donor milk in my freezer going unused, which I ended up donating to another pumping preemie mom who was short on milk.
But, I can say this. My son had my milk for the great majority of his first year. He was a healthy little preemie during that time and to this day, is still relatively healthy (aside from his weight, which is still an issue due to milk refusal.) He is incredibly smart and at 20 months old was using 4 word phrases. Breast milk helped him get where he is today. All babies are entitled to their milk, but especially preemies.