The rest of the beginning

Not quite one month later, I was laughed out of an ER by a doctor who pretty much told me that I was a new, hysterical mother!

When the pediatrican came back into town, he admitted us to a hosptial but, still did not believe me that the membrane or bone had grown back over his nasal airways. After a week and a half he tried to put tubes into his nose. He was turning red trying to get them in. When he realized that he couldn't and removed them, he looked sick.

We were sent back to the other hosptial, where the ONLY specialist in the region did this kind of surgery. This time, to ensure he'd not need another surgery, they removed part of his septum!

He never did need another surgery after that.

About a month after that, he was screaming all the time. I don't mean a colicky baby either. I mean SCREAMING - no breaks. Not naps, playing, cooing, sleeping - NOTHING. He screamed one night from 3:00 to 11:30! My mother thought I was over reacting until she came over one night and saw him screaming, and bunching over. He did this for hours, and for hours I rocked and rocked and rocked him. When she told me that this wasn't right, I just thought, like I had been told, he was colicky or that it was his reflux and his meds weren't working so well. I couldn't bring myself to go there. If I did, I would have to think about how small he was and if I did, I was afraid I'd never stop crying.

The next day, we found blood in his diaper.

Into the hospital again, this time for MSPI - milk, soy protein intolerance and failure to thrive. Basically he could not tolerate ANY milk or soy protein in any manner. We spent almost two weeks in the hospital that time, getting the offending things out of his system and slowing introducing a new, more digested formula in. We also changed his reflux meds too and were put under the care of a GI specialist in this area.

We went home, me a little scared. I knew this wasn't working but, I wanted it to so badly.

Almost a month to the day, I called the doctor crying, he was barely over his birth weight. When he saw him without clothes on, he almost passed out. The specialist that had taken over had never once seen our son in nothing but, a diaper and he never asked to either. The pediatrician was ticked to say the least.

This trip in the hospital lasted two weeks. This was the trip where not only the nurses, and my family thought he'd die but, I did as well. I was told to have him baptized and I was so angry that they told me to. I couldn't face it until one day, during his daily weigh-in, he was then 3, almost 4 months old and only 5 ounces over his birthweight! His skin was hanging off of his body, he couldn't be moved without it hurting him or his bones, he lost the ability to move his arms, legs and hold his head up. He even lost the ability to cry! He would just sort of whine....it was awful.

I remember going out in the hall and dropping to my news in tears. The nurses had to hold me up and were so supportive. I know without them, I couldn't have made it through those days.

This time, he was put on an NG feeding tube, with 24 hour feeds. I had to learn to adjust the pump every four hours. I had to learn how to mix the formula (formula meant to be given to literal vegetables, who were usually elderly people.), and how to not only put the tube in and remove the tube but, how to maintain it as well.

It was all a bit more dramatic and heart breaking then but, I can't go into too much detail because it still breaks my heart all that he had to go through. I'll never forget any of it.

By the time he was ten months old, we finally removed his tube! It was great, the freedom. He just needed a bit of OT to get him back up with other babies his age and he was going to be perfect. "Perfect" just like I had planned......