Getting Acquainted

Wyatt has now been home for six nights...that is six almost completely sleepless nights. We are trying to get to know him and understand his wants and needs. I didn't realize how little I really knew him until I got him home. I've been visiting the NICU for six weeks, but seeing your child for only a couple of hours per day is no way to foster a bond. I would like to say that he's settling in well; however, we are having a really tough time with him. At first he was being very fussy right after he ate. The nurses in the NICU had talked to me at length about his reflux and spitting up, so we spent yesterday morning at the pediatrician's office and left with a prescription for Zantac. Hopefully, it will help. As the days have gone on, it seems he is getting fussier and fussier, almost constantly. Literally, I don't know if the child gets more than a couple of hours of good sleep in a 24-hour period. It is very hard to comfort a baby that seems so unhappy all of the time. And it's not just that he's unhappy, a lot of the time he sounds like he's in pain. As Todd shared before, he's on a couple of meds for his hypoglycemia, one of which is hydrocortisone, a steroid. After some research, on the internet of course, I decided my son must have "roid rage." I called the pediatric endocrinologist first thing this morning and had my appointment for tomorrow bumped up until today. In the event it was something unrelated to the hydrocortisone, I also had my Thursday pediatrician's appointment moved up until today. After spending the day in doctors' offices, we did come to the conclusion that it most likely is the steroids and we have permission to begin weaning him. As far as we know Wyatt still has a cortisol deficiency so at the very least he will most likely need a replacement dose of the steroids; however, Todd and I did not realize that his current dose is more than double the replacement or physiologic dose, hence all the crazy side effects. So, in order to continue to wean him each day he must maintain fasting blood sugars above 60. He has consistenty maintained blood sugars above 100 since he's been home, so hopefully he'll be okay. Please be praying he can maintain his sugars and we can successfully wean him. It is both heartbreaking and frustrating to see your young child in so much distress.