Time stands still

The update on Ryder:  he is back on milrinone - Friday his BNP (heart failure marker) was sky high -- it's back down to close to normal now...I want to believe that it came down so dramatically and so quickly there is no way he really needed milrinone to do that.  Seems I am wrong though.  Ryder had a bloody stool last night; then one more blood streak in the diaper.   His INR (blood thinner level) is in the appropriate range, so it wasn't from that.  The thought is that he may have had poor blood flow to his intestines when the BNP was high - when his heart was not pumping as strongly.  He is off his feeds today and on TPN and lipids again.  His xrays look fine, and hemoglobin is stable.  Not sure how long he will have to be on TPN yet, don't know when his cardiac cath is yet, and certainly don't know why his little heart was worn out last weekend, so please don't ask.  Some things just are.

He looks great though.  You would really have to see him in person to believe that this little warrior survived ECMO, etc. etc.  He likes to sit propped up on his boppy in his crib and watch everyone walk by his room...he has favorite toys - his red bird and now his baby einstein lion, who he likes to pet.  He has figured out that if he pulls his nasal canula down into his mouth and sucks on that instead of a pacifier he gets a drink of water (from the humidity).  It is incredibly adorable.  He flirts with all the girls.  He likes to read books , elmo is his favorite to look at - because his favorite color is red.  He is fine with not eating today, but felt like he didn't need his NGT so he yanked it out when daddy wasn't looking.  Sneaky guy. 

Well for now we aren't going anywhere.  Weird, it just feels like time has stopped in this room.  Everywhere else it keeps moving--we have gone through winter, spring and now are in the dead of summer.  Ryder seems perfectly content in his little 5x5 ft. world though - it is after all the farthest his oxygen can stretch.

"What do you do when time stands still?
Should you pray for another moment to kill?
Where can you go when there's no place to be
But sitting right here watching you watching me."

Ryder, 4 mo, working out with Mo, his occupational therapist