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X rays show her system still has not passed the rest of the dye from the first test
Nurse tells us we can't hold her today because she needs time under the lights to break up her jaundice.
Nurse says she's had a couple of “low sats” this morning (warnings of low oxygen saturation)
We are present when doctors meet in a group for their daily “consult” at Audrey's bedside
Doctors override nurse's restriction to not hold Audrey today, they order a “Bili blanket” that can be wrapped around her while we hold her, which is best for her progress.
Doctors order her total fluids to be increased, we hope this will help thin her saliva.
Susie holds her for 30 mins, but Audrey becomes uncomfortable and fussy.
Justin calms her and holds her for 2.5 hours.
Audrey is repeatedly “high sat”-ing and setting off monitors to let them know her oxygen is near 100%, nurse finally turns off the monitor for high saturation-- it's nice to hear a good alarm for a change, and even better to have one more thing removed!
Nurse gets permission to remove the nasal cannula!! No more tube in the nose, no more help breathing!!
We learn that the TPN given intravenously is not a long term solution; it is usually given for less than two weeks because it is hard on the liver and can cause permanent damage over longer periods. This is discouraging news and increases our urgency to get the G tube working asap.
she has had no pain meds all day.
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| Justin and my dad pressing gently on Audrey's head and feet. We were told by the nurses that that is a very comforting touch for an overstimulated post-surgical baby who needs to be in the bassinette for long hours. |
Glycerin suppository given to try to help her pass dye and bilirubin out of her system, no immediate effect, but several hours later she has had multiple diapers... wonderful news!
7:30p oxygen tube removed! No more plastic in her nose!
The word did not reach the nurse to wait for us to do her bath-- Susie is devastated to learn that we just barely missed it. Baths are done MWF between 8-10p, and we contacted them at 8:15 and were simply unlucky that the nurse had done Audrey's bath right at 8. The nurse writes a note and tapes it to the bassinet for the Friday nurse to arrange to do it when we are there.
10-midnight “quiet alert” time in Susie and Justin's arms with Bili blanket, most awake and comfortable we've ever seen her.
Audrey “roots” for the first time and sucks on a pacifier for 60 minutes-- a big deal because she needs this skill to learn how to eat eventually. Many kids with EA have a hard time sucking on a bottle because they have learned to hate having things in their mouth and they don't associate food with a positive feeling. She is starting to figure out that we aren't feeding her. :)
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