BT Shunt surgery: the movie

We learned something fascinating this week: James just had the same procedure that pioneered the field of heart surgery, and has its own place in Hollywood fame.  The BT shunt, formally the Blalock-Taussig shunt, was actually invented by a doctor-assistant duo in a true story along the vein of "Good Will Hunting". Vivien Thomas was a black man in the age of segregation and was never educated beyond high school. He worked as a janitor in Doctor Blalock's lab, where he showed an aptitude for medicine and surgery despite having zero training. Blalock, Thomas, and Taussig eventually invented and performed a previously unthinkable heart surgery.  Moreover, their inspiration was a fellow "blue baby", afflicted with a slightly different condition (tetralogy of Fallot) although with similar symptoms as James. This true story was made into a movie with none other than Severus Snape (aka Alan Rickman) and Mos Def.

In fact, we learned a second interesting thing as well: James was diagnosed with DORV but may in fact be in some ways more like DOLV. Although his dominant ventricle is physically on the right side, it actually performs more like a morphological left ventricle. This is good news for James, since he really can only use the one ventricle: the human body's left ventricle is more suited to the sort of heavy lifting needed to pump blood throughout the body; whereas the right ventricle is really designed for the smooth, steady pumping of blood on the short trip to the lungs. Essentially, this means that having DORV wears the R part of the heart out quicker because it has to overstrain itself at every pump getting blood to the body, while DOLV will take some of the strain off. Thus his chances of long-term success with the heart surgeries are a little better and overall he'll have a slightly lower chance of heart failure. Ahh, the human body.

Pediatrician approved

We had a great weekend with a lot of new experiences: a bath for James, a walk around the neighborhood...and of course, a pediatrician visit today! Our pediatrician was impressed with James' alertness and energy. He weighs 7 lbs, 8 oz now, so this doctor wasn't at all worried about his eating: he's growing perfectly well. His heart condition does mean he won't grow very quickly (at least, not until his later surgeries) but our little guy is big enough for now.

Home at last!

James was discharged just before noon today, and we are overjoyed to be home at last. He loved the car ride, and slept comfortably through each and every pothole along the FDR. He's been fascinated with the mobile over his crib, the sounds of music in the room (he doesn't seem to miss the relentless beeping from the NICU), and adapted well over all to the change in scenery. We had a dinnertime toast to celebrate his homecoming, and are looking forward to a relaxing weekend with the three of us together.

Tube free, finally

James likes being fed on demand! The nasogastric tube is OUT and will stay out as long as James keeps up the good work. He has 2 days to prove he'll eat enough without needing the tube back in again, and if he succeeds he'll be cleared for discharge.

Three weeks old

As mid-July rapidly approaches, and James hits the three-week mark tomorrow, it's disheartening to not have discharge in sure sight. Our initial timeline predicted that he'd be coming home about now, and doctors over the past week have encouraged this idea. James, unfortunately, has decided he's not quite ready. After a strong showing mid-week as he started eating more energetically, his pace has slowed the past few days, and he's depending on the tube a bit more often again. His stamina is just not up to speed yet.

He's still a cutie, and the nurses agree with me that he looks like his daddy :) as much as Peter insists he looks like me. He got a lot of attention this week, including attention from our out-of-town family: he's got new toys, clothes, and some other fun stuff that arrived in the mail recently. We thank all our family and friends who have been supportive and sent their thoughts our way throughout this adventure.

No longer hiding behind tubes

With only the (tiny) nasogastric tube left, James' face is fully visible and totally transformed :)

James looks just like his daddy

snuggled into his shirt

lunchtime on his dad's lap

chilling in mom's arms

Eating is such hard work

James has an assigned feeding consultant now, who recommended alternating 3 bottle/mom feedings (that he has to work for) per day and nasogastric tube feedings the rest of the time.  Limiting and spacing out the bottles allows him to rest between sucking sessions and gradually increase his energy and strength.  So far, it's worked wonderfully: he's almost up to a full diet (55 ccs per meal out of an anticipated total of 60) and he finishes the bottle almost every time.

As of today, he's increasing to 4 bottles a day.  His sucking ability is improving, and his grip is noticeably stronger.  It does tire him out though, so we'll work bit by bit towards the goal: feeding by bottle/mom every 3 hours, or 8 times a day.  Having dinner, apparently, is quite a workout!

He is out of the heavy-duty incubator and in a normal (as normal as hospital gear looks) crib, with his own toys and wearing his own clothes.  I'll post a pic soon...the only tube left is the tiny nasal tube, which is only attached during nasal feedings anyways, leaving James unobstructed and easy to hold the rest of the day.  He's a snuggler :)