Here we go again

Sorry for keeping this post short. We've had a rough night. Elise had another episode like the one at St. John's that sent her back to St. Louis last night. Around 1200am she stopped breathing, her heart rate dropped to 25, and she started having seizure-like activity. Luckily the nurse was with her at the time so she got immediate help. They had to preform CPR on her for about one minute, and was on the verge of intubating her when she started to move again. So, now she is back on 5 liters high flow oxygen and has an IV. They have run numerous tests including chest xray, labs, heart echo, brain EEG with all coming back normal so far. Her doctor is going to consult with another neonatologist that specializes in SIDS and other pulmonary diseases. The doctors reassure me that she does not have SIDS, but still wants this other doctor to consult on her case. The only other test that they are going to do this week will a sleep study which will look at several things while sleeping. This evening she looks good, but is exhausted from the last 20 hours of tests and not getting to eat. They have restarted her feedings, and have started the process of weaning her oxygen again. Jason is on his way back from Philli tonight with his classmate Jon, and will arrive tomorrow. I'm dealing with the disappointment of our going home dreams shattered once again. I'll post again on Wed. Kristin