Hi Lindsay,
My heart goes out to you. I still remember vividly being in almost exactly your situation. Our son, Jordan, was born with meconium ileus and had surgery at three days. Like Erin, he couldn't absorb much with the open stoma and kept losing weight, so he was put on TPN. The ileostomy was reversed when he was three weeks old. It took a full week after that before he produced his first little pellet of a poop. That was Valentine's day, and we couldn't imagine a better gift. (His dad was so excited he wanted to bronze this "gem"!) We still had some ups and downs to go through, though. Jordan produced little more in the following few days, and he didn't start pooping in earnest until he was given a barium enema to clear out all the sticky meconium (about a week later). Then he started dumping too much, so he still wasn't gaining weight. Sometimes it felt like he'd never be able to eat and grow like a normal kid. But, finally, when he was seven weeks old, we got to take him home. His intestines remained really sore from all the surgery for some time, so we had to restrict his feedings to very small portions (no more than 2 ounces), or he would bleed from the gut. Nevertheless, he did start to thrive once he got home, and despite all he'd been through, he remained an alert, happy, and totally engaging baby.
As others moms have indicated, the first six months to a year are really scary, especially when the disease has already dealt you so many blows. And, like other parents, you probably will have to cope with other setbacks. We had recurrent intestinal blockages (that required hospitalization, but not surgery) until we realized that Jordan couldn't tolerate milk protein. But these kids are amazingly resilient. Jordan is now sixteen, and as long as he avoids all milk products, his digestion is fine. We do have to take precautions to protect him from respiratory infections, but he's in the honors track in school, runs cross-country, and has a wonderful, supportive group of friends. In many ways, we believe he is both stronger and more sensitive to others because of the challenges he has had to overcome.
If there is anything else we can tell you that would help, please let me know. It shouldn't be too long before you can take Erin home. Despite the anxiety and grief you have been through, I am sure she will be an enormous source of joy for you in the coming years.
Warm regards,
Bambi
