SORRY, BABY, BLUE IS NOT YOUR COLOR

Lots has happened since last post.  Priya was observed and evaluated for reflux, but it is felt that any reflux she has is very mild.  At this point, the doctors feel that her oxygen desats are more due to obstruction from her tongue rather than reflux. So, no nissen procedure.

Priya's oral feedings have been been progressing to 35 cc, so we'll hope that just keeps improving.  She still has to be tube fed the rest of her food, so she got her G-tube yesterday.  It was a harder procedure for me, because I had months to expect and prepare for her omphalocele repair, but I did not plan on a G-tube, and it was hard seeing her go to surgery for a second time within her first three weeks of life.  The surgery went well though, and she seemed to do very well afterwards.  We were pleased.   Then she had an oxygen desat last night, worse than anything she has done beforehand.  She turned completely blue, and it took three nurses to open her airway and get her color to turn back to pink.  I thought she was dying; it was so scary!  Once she recovered from the episode, she was immediately rolled away to another pod for closer observation.  She had no other episodes last night and looked great this morning.  We were so relieved to see her doing so well!  Out of nowhere, she started desating and turning blue again.  Then she started having one episode after another, and each one was getting harder to get her to recover from.  It was terrifying!  She was showing evidence of both obstructive apnea (trying to breathe but unsuccessfully due to her large tongue) and central apnea ( episodes of not breathing due to still being out of it from surgery and left-over pain meds in her system).  They were going to put a nasal trumpet in (a tube placed into nasal passage that bypasses the tongue to hopefully create a safer airway, but sometimes the obstruction is further down and this does not always work).  However, her team thought it was possible that her airway could be inflamed from being intubated for surgery yesterday, creating a perfect storm of inflamation, large, obstructive tongue, drowsiness, and overall inability to maintain an open airway and breathe efficiently.  So, rather than sticking another tube down her throat right away, they decided give her a drug to decrease any possible inflamation.  Hopefully this will take care of the blue baby episodes and then all we will have to deal with is the smaller blue-lip episodes.  It would be nice to get rid of the episodes all together!  A tracheotomy is a possibility if things don't improve, but that will be a last resort.  I am pretty sure we will be getting sent home with a pulse oximeter. 

I used to think the possibility of Priya getting a trach was a horror, but now I know that seeing a blue baby is a lot more horrifying.  I don't want her to end up with one, but I'm not as scared of her having one either.

If she recovers well from surgery and gets her feeds back up to normal and her oxygen saturation figured out, Priya may get to go home as early as next Thursday--just in time to meet Grandma and Granddad.  Fingers crossed!