Sunday, January 24, 2010

Scattered updates (photo, video)

I survived taking care of Loki by myself for 2.5 days while Mom, Rebecca, and Kyra went to Disneyland. (Nurse Margaret also went, as did Emma and Finn). It was tiring and a lot of work, but I learned a few things and gained quite a bit of confidence.

Our new system of feeding Loki continues to go generally well. He gets more calories and water, vomits less, has less reflux, and doesn't require overnight feeding. That last point is important for three reasons: overnight feeds can interfere with his brain "learning" how to eat properly; we must wake to start and stop them; and they cause him to be fussy.

The overnight fussiness hasn't stopped, however. Since Mom returned, Loki has had some extremely fussy periods at night. We think he is having difficult dreams, as stops once woken. He is likely processing her absence and the day in the hospital. (The former may have been worse as Mom both left and returned while Loki was asleep.)

Loki continues to develop in other ways. He is clapping and beginning to make a few signs, such as "more," "food," "all done," and "turn that lamp on and off, please."

After an eating session with Dad. Have you seen my straw?

Sleepy with Dad:

With Mom after a bath:

With Kyra:

With Rebecca:

Nurse Margaret and Mom at Disney:

The old button, with gunk and red skin from all the taping:

With Dr. Rhee at UCSF:

New Mic-key button and tube. The tube slides easily in (and out) when the short lines on each are aligned. The tube is then rotated 3/4 of a turn to keep it in. The side "BAL" valve is where water is put in (or out) to inflate or deflate the little balloon on the inside that keeps the button fixed in Loki's belly.

A gift from the UCSF Children's Hospital:

In this short video, Loki shows his new dancing style of swaying side-to-side.


Cheryl said...

Hooray--life is going to be so much easier now. If it comes out (very rare), don't panic--call is ever so easy to replace BUT you have to act fast--and make SURE you have some KY jelly or around to help it slide back in...
I'm VERY good at it, now that I don't need to HAVE to do it any more! So much better for Loki and his parents to have this done!

Mascha said...

Cheryl, you know that you are practically inviting them to call you in the middle of the night to come over and help, don't you?

I am so glad this is done now and I hope he will be less fussy during nights, and you will get into a routine that is less labor intense and will allow you to actually get enough sleep - or at least longer and more restful stretches.

It turned out to be a long journey, but there is constant progress. May this be a good year for all of you.


Eric Rubin said...

that's one cute kid!

Anonymous said...

lieve vader, moeder en loki, weer een operatie die goed gegaan is, fijn, wat heerlijk dat Kathelijn even op vakantie kon met lieve mensen om haar heen, en dan de vader die thuis alles regelde met Loki, geweldig. het dansje was weer leuk en heerlijk om jouw stem te horen Kathelijn.

lieve groet van Greet

Anonymous said...

I love the full-body smock/bib! That picture is priceless. I hope Disney was "friendly" and Fun!

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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