Monday, November 23, 2009

Tante Marieke, good and bad feeding, and our bad boy (photos)

Loki's Tante (aunt) Marieke arrived yesterday from Holland. She is very excited to see him, having saved up many hugs and kisses in the last six months. And the feeling appears to be mutual.

In recent days, Loki's mood has greatly improved. After a tumultuous few weeks of my absence, Oma and Opa leaving, Loki and Mom being ill, and surgery, he had become much less happy, smiling and laughing less. In recent days, he has returned to his old self.

There is good and bad news about Loki's feeding. The good news is that Loki is gradually eating very small amounts of food. In the last three days, he has begun to put bits of various foods in his mouth, chew them, and then either swallow or spit them out. He likes avocado, baked veggie chips, fried green beans, cheese, and potatoes baked in oil. We recognize that these are not healthy foods. But the point now is to get him to eat anything.

Also, Loki's reflux seems less severe now than before.

The bad news is that Loki's feeding tube comes out of his button about as easily as it did before the recent surgery. We now use an elaborate system of his diaper strap, a girdle, several pieces of tape, and Loki's own body to keep the tube in place. But these are still not enough: Last night it came out in the middle of the night, which we realized when Mom noticed that his clothes and sheets were all wet. Thus we had to get up and change these clothes and sheet, plus the diaper and girdle, and reinstall and retape the tube--all while Loki was crying quite loudly.

Today, a baby and mother whom we met at the Alta Bates NICU visited. This young boy is about the same adjusted age (i.e., similar due date) as Loki, and was at a very similar stage of development. It was fun to see them side-by-side, and interacting.

However, we discovered that Loki is quite territorial. When the both of them were standing on opposite sides of Loki's wooden activity center (see photo below), Loki gradually walked around to the other side in an apparent attempt to push his friend (or frenemy?) away. Later, when the boy played with Loki's stacking rings, Loki took them away. And when they were near each other, Loki even tried to sort-of bite him!

Tante en neefje 1:


Tante en neefje 2:


Loki pushes aside his NICU "friend":


Happy, dancing in bed:


Oaktown family:


Here are a couple old ones that we had overlooked. Mom and Loki in the emergency room when Loki got sick while I was away:


And Loki at the UCSF hospital, right before he got his G-tube, over a month ago:


Videos coming shortly.... I must edit them a bit, and am experiencing some technical difficulties.

6 comments:

Cheryl said...

You guys named him Loki. That's all I gotta say about being a territorial trickster with his frenemy.
That's bizarre about the tube extension. I wonder if the GI clinic nurses can take a look and provide any ideas. But I am so happy to hear he is nibbling more...I'm telling you, chocolate pudding and a straw...fun to finger paint with, and nice to suck fingers too!
Good news that he is back to himself, too. This hospital stuff is so traumatizing. Brianna actually hit a nurse practioner in the GI clinic who came at her without asking for permission this past summer--I think she was shocked herself, but it was an instinctive, defensive move. NO MORE BODY INVASIONS!
Thinking of you all--Loki's Auntie looks quite smitten by the lad.
Cheryl

Magnolia Helena said...

Avacados and cheese - those are what kids live on. My girl has recently taken to eating only mac and cheese and you know how I feel about picky eaters. Territorial - that is typical baby. Just wait till he can say "mine" or a recent favorite "I need that".
Cheers,
Luna

Elaine Stiles said...

Arrgh! I can't believe the tube is still not working well! How frustrating. But how great that Loki is testing out his eating-by-mouth skills. All those foods sound just fine to me - and a nice variety of textures and tastes, too. Go Loki!

Our early intervention specialist recently introduced us to the rules of toddler ownership: If I have it, it's mine; if you have it, it's mine; if I had it before, it's mine; if it's over here, it's mine; if it's over there, it's mine; and if I can see it, it's mine. Maddy and Milo are no different. They rumble quite a bit over their favorite things. Don't know where they picked it up - must be baby nature.

Hope you all have a great Thanksgiving!

E, R, M&M

Mom said...

I love those rules of toddler ownership, one to remember!!

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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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