Crew Wesley Miller: We're getting TIRED of the NICU Roller Coaster!

Crew is 47 days old today. He weighs a whopping 5 pounds 14 ounces today. He is still eating like a champ . . . both breast and bottle. The doctors pulled his NG feeding tube out a few days ago, but they had to put it back in the next evening because he was a tiny bit exhausted. He's pooping and peeing well too! He's getting a bit more feisty when he's awake and complains when we're messing with him too much. And, he still loves a good soak in the tub.

He is now on a 3/4L nasal cannula with FiO2's in the 20% range. So, he's doing a lot better in the lung department. His hematocrit has come up just a smidge to 27, so he's still on the pale side. His other lab work looks great. Knock on wood, no signs of infection and his ANC (fighting army) is holding in the 800 range which is adequate.

Now on to the more stressful stuff! A Cardiac-electrophysiologist (Dr. Anderson) from Spokane flew in to Boise to consult on Crew's case today. He is a doctor that specializes in the electrical activities of the heart. He was full of a lot of information and very positive about Crew's outcome. None-the-less he said that this was a very difficult case and that Crew's situation is making everyone work very hard. He wants to try to change his medications again to see if we can get control of the persistent SVT episodes. Also, the past few days Crew's been having an occasional . . . pause . . . in his heart rate. Talk about scary!! These "pauses" are different than a typical premie bradycardic episode. His heart rate will just out-of-the-blue pause for a second. So, his ECG tracing will sometimes read "0" or "19" when it should be "120" . . . ugghh! This is not a good thing, as you can imagine. So, we are going to discontinue his Propanolol(beta blocker), and at the same time increase his Flecainide dose. If this doesn't do the trick within a couple of days, they will wean the Flecainide a bit and add the drug Sotalol back in to the picture. If the Sotalol doesn't work, there are still a couple more medication options to try out, but hopefully we won't have to go there. Throughout all of this medication "tweaking" we may have to deal with more SVT episodes. They may even be more prolonged if the medication isn't working. Or, if the doses get too high we might see his heart rate drop to really low levels. So, the specialist wants to put an IV hep-lock back in . . . just in case of emergency. Doesn't this make you feel all warm and fuzzy? Us too!!! All of these "unknowns" and "what-if's" and "wait-and-see's" are a tad bit stressful to say the least. We know that Crew is strong and that he is a fighter, but seriously the poor guy could use a break. We pray that we will find a medication combination that will get him under control sooner than later . . . for all of our sakes.

Now, on to the adorable photo updates!!