Peter, Peter, pumpkin eater

Happy Thanksgiving, everyone!

For us it was a mellow but festive day. Peter celebrated by somehow getting his trach tube pulled out. Michel noticed it and we had a clean trach back in place in minutes. That was in the morning and there were no further mishaps! After dinner we gave Peter his first taste of pumpkin pie. The flavor intensity sent shock waves through his whole body--hilarious!

Yesterday Peter had another cardiology checkup. His chest x-ray showed that he is tolerating fats very well. We were able to cut out one supplement (iron), and we get to wean one diuretic (Lasix) over the next week, which will actually eliminate three meds in total (Lasix plus sodium chloride and potassium chloride). Then we can make arrangements to have his G-tube (feeding tube) removed. Hooray! It was necessary for a while, but is now no longer needed and is only a source of discomfort and constant skin irritation. He takes his other medications by mouth twice a day.

People have asked about Peter's eating. In my naive way I assumed that once he was allowed to have my milk undiluted, he would take to nursing easily. But 6-month-olds are very set in their ways, and "latching on" is a seemingly impossible paradigm shift for him. It would be so much easier for me not to have to pump, and also Peter would not have to take bottles of formula (which he doesn't really like) from the nurses in between times. But how to explain this to a baby?

Peter in the stroller

Here is the Youtube video of Peter in the stroller (Nov. 7).

Still here, everyone?

Yes, yes, we know; it's been a scandalously long time since we last updated this blog. But here we are and we have a lot of good news to report.

Peter continues to thrive at home and is making good progress. We have now passed out of the stages where he was receiving 50% Betsy's milk and 50% fat-free formula, right through a brief 7-day period of 75% real milk, and he is now completely off the dietary restrictions. The chylothorax is now definitely a thing of the distant past. Peter loves to eat, not just his full-fat diet, but also the cereals we have started to introduce him to (or "spoon food" as we call it). Show him a bowl with a spoon and he will automatically open his mouth in readiness. He's not catching on to breastfeeding yet but Betsy has a few clever tricks up her sleeve to teach him what's what. If his transitioning to oral feeding from j-tube feeds is anything to go by, he just needs a little more time to figure things out.

There was one more scary incident, early in the morning of October 26. After changing Peter's diaper, the nurses suddenly noticed that he was suffocating for no apparent reason. We still don't know exactly what happened but we think his trach ties must have come a little loose and the end of the trach tube probably dug into the tissue of his trachea, thus closing the breathing hole in the other end. As soon as the tube was removed he resumed breathing, though in the meantime an ambulance had been called. The EMTs were very happy to be called in to do nothing more than to look on a cute baby. Peter recovered quickly from the incident--we needed several days to catch our breath!

Last Saturday, Peter went on a little adventure. Minnesota was having a sudden unexpected Indian summer (well, low 60s is considered almost tropical in early November) and we all went to the playground. So, we loaded him and all his gear up in the stroller and made our way to the playground.

(We had a video of Peter in the stroller, but Youtube has been malfunctioning this evening and I can't get it uploaded at the moment. Sorry.)