05/04/2007

Okay, I'm sorry about yesterday's update. Several people have asked us what it means, and I would have given a more detailed description of everything, but Erik came home from work and he won't let me type updates or be on the computer when he's around. He needs too much attention (and yes, I had permission from him to say that on the website.) DISCLAIMER: This will likely be a 2-part post... carepages only allows 4000 characters per post. If you're not in this one for the long haul.. skip it. PART ONE: Anyway, Emery is on CPAP (continuous positive airway pressure). CPAP can also be used to treat sleep apnea. It delivers a pressure of air through the nose. In Emery's case, it is needed to help keep his lungs expanded. Emery also requires supplemental oxygen. Emery's lungs were severely underdeveloped at birth, and he also had surfactant insufficiency. Besides the fact that his lungs were so severely underdeveloped, Emery had a strange problem with his lungs frequently collapsing, sometimes without reason. It was this reason he was put on the oscillator, and his lungs even collapsed on that. The oscillator is a vent that actually keeps the lungs from collapsing. Anyway, he was just an attention-seeking little boy as Dr. A always put it. Most babies get off the vent within a few weeks, switch to CPAP and then move to nasal cannula fairly quickly. Emery, for some reason, is maturing extremely slow in all regards. Though he grows well, his systems are not developing as quickly as they should. While most babies would be home with their parents by now, Emery has only made it to CPAP. Okay, so that being said, he needs a SIGNIFICANT amount of pressure from CPAP to keep his lungs expanded. Yes, he is weaning and he is making progress, but it is extremely slow, even from a micropreemie standpoint. I mentioned a trach. A trach is short for tracheostomy, and I'll get to that in a minute. Because his progress is so very slow, the amount of time spent in the hospital will be even more length than what anyone had expected in the beginning. We were never told to expect that Emery would be home by his due date, but rather we could hope. That's only a rough guess. As he progressed we were told that September or October was the most likely possibility. So anyway, as Emery sits in the hospital he becomes further behind developmentally. Now that he is much more stable and weaning from CPAP, a tracheostomy is no out of the question. A tracheostomy is a hole in the neck where a tube is placed. The tube is hooked up to a ventilator that would help Emery breathe. Emery can come home with a trach and a ventilator, and the weaning that is being done in the hospital can be done at home. It's not optimal obviously, but babies do need to be home with their parents, and parents need to have their babies home. So this is where we are at. I haven't talked to Dr. A yet, and remember he is extremely laid back, but we need to start weighing all risks and benefits. At the rate Emery is weaning, he will be in the hopital even longer than September. Babies' brains are most likely to develop in the first 3 years of life. Without the constant love and attention of parents, he falls behind that much more than a regular newborn, not to mention that he was significantly premature and underdeveloped. He'll need physical/occupational/speech therapy for years to come.