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.

Friday, January 22, 2010

New Mic-Key button today!

Today, Loki is undergoing minor surgery in order to swap out his old button for a Mic-Key. The advantage of the new type is that the type can lock in. We look forward to not dealing with it popping off, and/or needing to use tape to keep it in. He will have to go under general anesthesia to get the old one out via his esophagus, but no cutting will be necessary. He should come home this evening.

Mom is taking care of this on her own, and may be joined by Kyra in the recovery room. I need to work today.

Update (6:44 PM PST): Mom, Loki, and Kyra are on their way home. They had to wait four hours before the surgery even began!  But other than that, all is well, as far as I know. Recovery was "super speedy."

Sunday, January 17, 2010

Nana and Papaw; Kyra; skin, new button, and upcoming procedure; hope for easier feedings; Dad solo

Last week, my mother and step-father visited. She hadn't seen Loki (in person: there have been video chats) since the week he came home, and he had never met him. Loki was immediately warm towards them, without any stranger anxiety. Perhaps he recognized his Nana and Papaw from the video chats, or could just feel the atmosphere. It was great to see them together, and hopefully it can happen again soon.

On their last day here, Mom's close friend Kyra arrived from the Netherlands for a week's stay. Coincidentally, she was also last here when my mom was here and Loki came home. She has already been a big help, such as watching him this morning so both Mom and I could get some sleep.

For a few months, we've been taping Loki's tube to his skin so that it doesn't slip out. But now his skin around his button is sore. Mom took him to the emergency room in San Francisco as a means of getting him to be seen by one his gastroenterologist, Dr. Perito. She gave us a prescription cream for Loki's skin and told us that we need to be careful continuing the taping. To that end, Loki will have the new style of button--a Mic-Key, which can lock the tube in place--installed at UCSF on Friday. This will require a quick procedure (not really a surgery, as there's no cutting). He does have to be put under general anesthesia most likely to get the old button out, but won't need to stay overnight. I have to work, so Mom and Loki may be joined by Kyra for this.

There is some good news in the feeding department. Until now, Loki has not been getting enough calories with his pumped formula and milk feeds. When we tried to increase the concentration or volume of feeds, he would throw up. Now, Mom is experimenting successfully with giving him a thick, high calorie mixture of rice cereal and formula via a large syringe. He is able to keep this down, despite each feeding being almost double the calories of the formula. We think this because it is so heavy that it can't come up. We then must give him extra water. Another advantage is that, when he is awake and moving around, giving him a few milliliters via syringe every few minutes over the course of two hours is easier than chasing him around with his pump on a pole. Plus, this is more like getting meals: he gets a few big feeds during the day, and little (if any) overnight. If this works out, Loki can get all his calories in five syringe feeds during the day, one pumped feed in the evening, and then an overnight pump of mainly water in order to keep him hydrated. We hope this will reduce his overnight fussiness, although so far this has not been the case. In addition we hope this will finally add some weight to his little body (he weighs 8.63 kg or a little over 19 lbs).

Monday evening, Mom, Kyra, Rebecca will fly down to the Los Angeles area where they will meet up with nurse Margaret (!) and go to Disneyland. Even better, Mom's cousin will help with admission and they will hopefully get a chance to see her and her family, as she works at Disney. This is exciting, as it is Mom's first vacation away from Loki. Myself, I am nervous about being alone with Loki. They will return Wednesday evening.

Nana and Papaw:

Three generations:

Happy with Papaw:

Mom is best:

With Dad:



Mmmm, paint:

Nom nom nom straw:


(Little) Big man:

Tuesday, January 5, 2010

Happy New Year

Happy New Year everyone! May 2010 bring you love, health and many wonderful adventures!

We spent our New Year's Eve with good friends from the Alta Bates NICU. They very kindly invited us over to their home where we thoroughly enjoyed the great company, food, and guest beds they offered. With Rebecca, Dad, Loki, myself, and a lot of gear in tow, we arrived at their home around dinner time. We quickly settled into--or took over--their house, depending on how you look at it, and had a very fun and easy New Year's Eve.

We were able to briefly check in on their neighbor's party which was very interesting and entertaining to say the least. Hosted and attended by a goth / Burning Man crowd there was plenty about to see and smile.

The two boys are increasingly more interested in one another and practice such skills as taking away each others' toys; climbing on top of the bed, each other, and the mamas; and giving gentle hugs. It is such an amazing feeling to see these precious former preemies get along so well and enjoy themselves.

At midnight we were able to see, and hear, some unexpected fireworks (unlike Holland, fireworks are not all that common on New Year's Eve here). Loki woke up screaming but after we pointed at the light and repeated "lichtje/light, boom boom" he got used to these noisy "temporary lamps" in the sky and started pointing at them. After a short night we woke up to finish our extended play date with a wonderful breakfast.

It was great to celebrate New Year's with wonderful people and wonderful food in a very "normal" people way.

Ready to go and have fun, but never leave without pointing at ones favorite lamp:

Best play pen ever, mamas and babies enjoy some play time:

Peeking over the balustrade is super fun, especially in pj's:

These boys really love each other, poking in eyes is a special sign of this love:

Such a sweet boy:

Another sweet boy right before bed-time:

Those noisy lamps in the Sky:

Rolling around on Rebbecca's extremely comfy bed, wish we all had the time all day long:

Not enough sleep though:

Jan. 2nd, Mama matches stroller and baby:

Our New Year's visit to the beach (no dive in the water for us):

Waiting for yummy diner food:

Loki loves his straw

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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Loki's Holiday Gift Drive

Please consider donating to Loki's Holiday Gift Drive for the Alta Bates Summit Medical Center NICU. You can donate by Paypal or credit card here:

Click here for more information, including how to pay by check. For all posts on the Gift Drive, click here.