Iz certainly has been keeping me on my toes--she has wanted lots of handholding and head rubbing and foot tickling since she couldn't be held. When she fell asleep, I pretty much was asleep, too, and when I was awake, I was pumping and not able to do proper updates :p So I'll do a little rundown of the past few days but it may be a bit of jumble as my mind is already forgetting some of the timeline! Sleep deprivation or just the mind fuzzing up some very scary days?
So after they took her off the vent, she was doing great on room air but later on her sats started to drop so they had her on a nasal cannula. They were able to start weaning her off it fairly soon but she just would not leave the cannula alone and it was really upsetting for her so they switched her to blow by oxygen (big blue tube aimed at the general vicinity of her face) and she stopped needing it last night :)
When she got cleared to eat, she took about 100ccs from a bottle--gulped it straight down. We thought, great, now we don't need to worry! The bottle hater drank her milk! But she wasn't going to let us off that easy :p The next feed, she ate about half and fussed at the nurse the whole time (she gets mad if I hold the bottle--the first time Dad gave it but he was at home with the boys for the next few feeds). The third, she fought the bottle and took about 20ccs. Dr W thought it was important for her to get a chance to nurse because she was so upset and stressed over not being held and being offered a bottle. Up to this point, she needed sedation to calm down and sleep. So he ordered that she get as much stuff taken out as possible so we could more easily and comfortably move her (they normally don't get babes with chest tubes out of bed). So they removed her arterial line, her catheter, and her pacemaker wires. They couldn't remove the central line because she was still needing potassium (her levels were all over the place). So I got to hold her and she had a few swallows but she was really uncomfortable from the central line and chest tubes so she mostly just wanted to cuddle and complain to me. But when she went back to bed, she slept for several hours without sedation--woo! Her second attempt was about the same with some serious gassy tummy pains added in--but again, she cuddled, and an added bonus of a whole bunch of burps and farts to move that gas out as well as some coughing (they need her to cough to clear out gunk from being on the ventilator). She may not have gotten much food but it sure was a good boost to her morale and physical needs. She didn't need the sedative again after the first time I held her.
Since she wasn't able to nurse enough, they put in a feeding tube and put her on a continuous breastmilk feed--they cut it back to 100cc feeds every three hours the next day. She had a great day--was in a fairly good mood, gave me some smiles, enjoyed watching everyone who went by. Was able to wean off some meds and be almost weaned from others. Switched to oral meds for a few things. Last night she had a great potassium reading and it held steady and remained great so this morning the central line came out :) During rounds, Dr W said her chest tubes were finally ready to come out (they had been draining out too much fluid to come out the day before like they had hoped. But after I held her, the output just dropped off and stayed down (one stopped draining completely and the other was below the threshold for having tubes out--Dr W was right about her needing to be held and getting a chance to nurse. She made so much progress once she had her emotional needs filled :) ). So she was supposed to get her chest tubes out and then her feeding tube so she could nurse. Within ten minutes of them leaving, she wiggled her way down the bed until she could reach the feeding tube when no one was looking and pulled it out--she was in restraints to stop that from happening but she worked around it ;) She then attempted to pull out one of the chest tubes but those were stitched in.
Her first attempt at nursing resulted in a few swallows and a lot of cuddles. Her second attempt ended in a milk coma :)
She is ready to be moved to the step-down unit but they are not sure if they will have a free bed tonight so we may be in ICU one more day. It is possible she could go home tomorrow or the next day :)