Tuesday, October 13, 2009

Video + photos: And an update

For better or for worse, the fact that the tube easily slips out of Loki's button has forced us to take the next step in tubular feeding: Instead of a pump, which provides a continuous supply of food during a one-hour feeding, we are using two syringes, one at the start of the feed and one an hour later, and injecting them over a five minute period. This trains Loki's stomach to take in a distinct meal instead of a steady stream. In the near future, we'll gradually combine these two half-feedings into one. After that, we hope to make each feeding bigger, and then have fewer of them.

But for now, we find the new feeding regime to be even more tiring than the pump and NG tube. He has eight feedings, each three hours apart, with each feeding having two parts, an hour apart. That's sixteen! And each one typically requires the tube to be pushed into and pulled out of Loki's button, which is the source of much discomfort for all of us. This seems to be more interruptions in our day and night, and is quite tiring. Furthermore, I don't see us getting out as easily as with the pump-in-a-backpack. Then again, maybe we are just going up the learning curve again, and this will be easier soon.

The good news is that Loki's low grade fever has subsided. And overnight he is less fussy, and seems to have fewer signs of reflux.

The bad news (separate from the tube) is that Loki still has too much protein in his urine. This was first noticed during his July hospital stay. It could be elevated because his kidney is still healing, but it could also be a sign of a problem with it. (Link 1, link 2)

This video shows how Loki expresses happiness. Flap flap! Video from Maaike and Richard. (As always, those who read this by email must click the headline or the embedded links to go to the website and see the movies.)

He can also do it sitting up:

Painting party!

One the UCSF parking garage before the surgery. That's the Golden Gate Park, the Presidio, Golden Gate Bridge, and the Marin County headlands in the background.

In the recovery room.

That's the plug. Click for a larger version, as always.

This is an elastic girdle used to keep the plug closed:

With Maaike and Richard:



Mobility is soon:

Loki fashion show:


marieke said...

Ha ha, wat schattig!!! Straks stijgt hij nog op. De onderste foto is cool.
Hoop dat het goed komt met de nier en dat jullie weer wat regelmaat en rust kunnen vinden in de voedingen.
Hele dikke kus en het was erg leuk om jullie via skype te zien. XXXX

Richard en Maaike said...

Ja, leuke filmpjes en foto's.
Jullie zitten nu dus al op 2 bolusvoedingen, dat is al snel toch? Dit vermoeiende proces hoort vast nog bij het stapje terug. Nu weer op naar twee stappen vooruit!!
Goed nieuws dat de verhoging weg is en dat hij 's nachts wat beter gaat.
Ik hoop dat er met zijn nier niks aan de hand is, en dat de positieve uitleg voor waar mag worden gehouden.
Kus Maaike

Piapie said...

Wow! He is looking so big and active! I have it in my head that he is still a little newborn but looking at him in Mama's arms it's clear how much he has grown. What a cutie!

Kyra said...

Dat was weer ouderwets lachen met Muus op mijn schoot. Echt schateren!


Suzan said...

Hij is zooo lief!
Sterkte met die stomme buis!


About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
Read & hear about his middle name.
See photos.
See videos.

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