Samyar's Story, Part 3

Sam also had a 2-vessel cord, which apparently made some of the medical professionals think that Sam might be born early or might even be born still. I never believed that, and neither did Sam. At 20 weeks along, he was measured at about 8 days "behind" in growth. I think they were wrong even then, because at 38 weeks, they measured him at 6 lbs 10 oz, but when he was born a mere four days later, he was 7 lbs 11 oz. They were off by a full pound. Couldn't they have been wrong about his size at 20 weeks? Also, two weeks off is apparently a normal variation, but they tried to panic us, I think.

I apologize if this story is not in order, linear.

Last night, I was remembering how much he liked to suck. He sucked on the vent tube. When he was extubated for those brief, hard five days in January 2008, tried valiantly to suck on a pacifier. We have have one picture of him with the pacifier, but he looks so exhausted from the effort that I am not sure that I really want to post it here. It is hard to look at, but I am so glad we have it. I may try to photshop the pacifier into another picture, and take away the vent tubes.

He tried to hard to keep breathing on his own, but he wasn't getting enough oxygen exchange. It turns out it was most likely because of those missing veins that didn't go back to his heart from his right lung. They didn't find that for another couple of weeks when they did the catheterization. They waited to do the catherization, because they discovered that Sam had developed an infection. So while they started him on heavy-duty antibiotics, they also started feeding him again, because he lost weight because they didn't feed him food other than IV nutrition while he was off the vent.

I just keep wishing we could go back, and have everything turn out different. That maybe Sam would have still had HLHS, but maybe his lungs and veins would have been perfect, that he would have been able to get off the vent, and then we would have been taking him home just a few weeks later. I know that there would have been the danger of him developing problems and passing away at anytime, but to have been denied the joy of bringing him home, of being able to lie down with him on our bed, his mommy and daddy curling around him, admiring his big eyes and lucious long eyeslashes in the leisure of our own home.

This time last year, in February 2008, I went back to work part-time. I was cleared by my OB after my emergency c-section. I was at the hospital in the morning, went to work in the afternoon, and then back to the hospital at night. After it looked like we had no idea when Sam would get to come home, I was extremely depressed and angry. It did me a "world of good" to go back to work. It gave me other things to think abut and concentrate on. My workplace, where I had worked for four years full-time, was very supportive about me coming back part-time. They were all mostly very gentle with me and didn't push me too much. I proudly showed off pictures of Sam, and everyone was very positive. It proved to be incredibly positive to go back to work. They also allowed me to carry my cell phone in my pocket at all times. I never did that before, and after Sam passed, I no longer did so, but while he was in the hospital, I told the nurses that they could call me on my cell phone at any time. I kept it on vibrate - so it would not cause a public nuisance, but I could feel it.