Tired of doctors

We're back from some more doctors' visits for Claire. I usually try to keep these posts fun and positive, but this one just isn't going to be that kind of post. It could be from extreme lack of sleep (Claire decided not to sleep for longer than 30 minutes at a time last night, so none of us got any sleep!) but I'm feeling total discouragement.

We started the morning with a visit to the dermatologist. Claire has a large "birthmark" on her body. It's BRIGHT red and goes down the right side of her body. At first, doctors were concerned that this could be connected to something internal, but thankfully that was ruled out. They aren't really sure what this is... saying it could be a port wine stain, a hemangioma, or a nevus flammeus. So, guess what? We have to follow up with another appointment in a couple of months. Managing these doctor's visits is becoming a full time job! Here's a picture of Claire's birthmark... whatever it is..

We had an appointment with the neonatal specialist after that. Claire again failed the room air test (which is when we unhook the oxygen and have her breath on her own). I thought she at least did better than she did at her last appointment and mentioned this to the nurse practitioner. She said that the circumstances were different so we really couldn't compare the two. So much for a little encouragement...

We also had her bilirubin levels checked again and in 10 days, it only went down by one point. The doctor added this to our list of concerns. At her next appointment we have to do more blood work to find out if this could be an indication of a new problem. I guess babies with jaundice usually have this resolved by this point, but Claire's levels just aren't lowering much at all. The doctor also mentioned that it's "a little unusual" that Claire needs oxygen. Most preemies that require home oxygen therapy need it because their lungs are underdeveloped. The puzzling part about Claire's need for oxygen is that her lungs are fully developed. We have to see the pediatric cardiologist next Tuesday to follow up about the holes in her heart so the doctor said she'll probably need another echo cardiogram because of this puzzling need for oxygen. He said something could have been missed on her last echo cardiogram and there might be another problem with her heart, causing her to need the oxygen.

We won't go back to get the oxygen checked for another month. So... we have to deal with these cords and tubes for at least another month. The doctor said he really has no idea when she'll be ready to breathe on her own.. it could be one month, it could be two... who knows. I feel like no one can give us any answers about anything.

The three main concerns right now are her bilirubin levels, her need for oxygen, and her birthmark... oh, and then the ongoing concern with the holes in her heart... Her doctor said these are not related to each other. How can one child have all of these random issues?! Many people tell me to be thankful that it's not any worse than it is. I AM thankful for that, but that doesn't make what we are dealing with any easier. I know if she had even more issues, it would be even harder... and I'm glad it's not. But that really doesn't make me feel better because it doesn't take away from the difficulty of dealing with all of this. I imagine having a totally healthy, full-term newborn is challenging enough on it's own. Throwing all this in the mix just makes it that much harder.

I know it sounds like I'm complaining, and I guess I am... I'm just getting tired. I'm anxious for the day when our baby doesn't need all of these extra appointments and check-ups and monitoring, etc.. I see so many people who have babies and get to leave the hospital two days later, only to return for their regular visits. I wonder what that would be like.