Ups and Downs

Jack had a bad report a couple of nights ago having many Bradies and desats. His O2 requirement was much higher than usual, and his scrotal edema had returned. This led to some blood work, lasics and a chest x-ray. Fortunately, his blood work came back negative for infection. The not so good news is that the x-ray showed he had some congestion in his upper right lung. The discussion was to possibly put him back on the CPAP; the same CPAP that Jack hates and worked so hard to get rid of. The RT, however, asked the doc to try a little vibration devise first. We'll see tomorrow morning if it works; if not, Jack has to go back on the CPAP 8 hours a day. YUCK! Our nurse practitioner thinks some of Jack's issues can be helped by adjusting his nutrition, so Jack is getting a special additive (protein) in his milk the next several days. We are hoping this will help his body "figure things out."

Ella continues to progress in her bottle feeding trials. She gets to try to bottle feed two times every 24 hours. Her intake varies, but she averages half her feed (20ml out of 40ml). It is so cute watching her... she gets these huge eyes and looks so amazed that something happens when she sucks on the bottle. It only takes a couple of cycles of sucking and breathing for her to get tired. I haven't figured out the whole burping thing, but I'm sure it will come.

I can't help be feel scared about the next several weeks. We only have 4 weeks until their due date and a possible discharge date, but it seems like we still have so far to go. Jack is still heavily reliant on Oxygen and both have to learn to eat. We have to arrange for a pediatrician, make decisions about vaccines, and figure out what we're doing about future daycare... Not to mention the scary thought of taking them off their monitors. How will I know what their saturation levels are? How will I know their breath rates? What happens when I fall asleep? Too much stress!!