Monday, March 29, 2010

Trip to coast near Monterey

We went on a short trip to Pacific Grove near Monterey in California. It was a mixed bag of fun and exhaustion for Loki and me. For dad it was hard (net)working on his 4.5 day conference on geoengenering. He barely got to see the beautiful sand dunes, beaches and, of course, the famous aquarium in Monterey. Although Loki and I had fun, it was not all easy breezy. First, Loki is not cutting one but three teeth at once, and he developed a cold the evening we arrived at the conference grounds. He had horrible nights with very, very little sleep (I walked around with him approximately every hour for the first two nights) and the other nights were not much better. Because Dad was not feeling all too well either and was at sessions and often working as a rapporteur almost 13 hours a day (with tight meal breaks), we agreed he needed to sleep as much as possible, so I took over his night shift for a few nights. That combined with seeing each other only during breakfast, lunch, dinner made for an odd "vacation."

Regardless, Loki and I had fun. He was even charmed by the new pediatrician's office we visited in Monterey per advise of our own doctor's office (yes he had fluid behind his ears but "not yet" an ear infection). Loki liked the ocean, but not so much the feeling of sand on his toes. He loved the big fish in the aquarium, but not so much the ladies room (he starts crying every time we walk into a public restroom with more than one stall....). Loki loved watching all the people in the dining hall, but not so much seeing the flag pole without flags.

The food was amazing and it was great to get to meet some interesting people during our big group meals. One of my favorites? Paul Crutzen, Dutch Nobel prize winner and atmospheric chemist best known for his research on ozone depletion, and a researcher from South Africa, who was one of few who dared to join us at our table with baby!

Lunch with Dad:

One of many walks:

Playing on the blanket is fun:

Big blue eyes:

Dangerous tricks on the boardwalks:

Thursday, March 11, 2010

First tooth

Finally, finally, finally...... Loki's first tooth is cutting through as we speak. It was a long wait, considering that having teeth will help Loki significantly with the foods he likes, but make him gag because he can't chew them.

We were visiting friend Jeremy and his mama Lena. They generously shared some tasty cream cheese with Loki, which I fed him with a finger. While scraping the cheese off with his gum I kept feeling a sharpness that I had not felt before. Sure enough, Mr. Loki Sky has his upper right tooth sticking out just a tiny bit. It looks as if it's neighbor on the left may be on it's way as well. Would this perhaps explain a few days of grumpiness and fussy nights? I think it may.

Once again Loki decided to follow the not so common path. Not only does the average child cut their first tooth between 6-9 months, most children get their bottom teeth first. That's what I have been keeping my eye on. Needless to say, Loki likes to surprise us even with the small steps! I guess we asked for it when we called him Loki!

Wednesday, March 3, 2010

On "Sky"; Rebecca gone; doctors; development (video, photos)

Early on we told of how we arrived at Loki's first name. But we never explained Sky. Mom and I are both into music, and among the music we like, nothing tops Phish. Many of you know first or second hand how experiential this is for us. Back when Mom was on bed rest, she was listening to her favorite Phish song, "The Divided Sky." It is a (mostly) instrumental, guitar driven, and soaring epic that is composed for the first eight minutes or so, and then opens up and builds from there. Here it is:

We had decided on the first name, but were stumped on the middle name. She shouts to me in the other room, "How about 'Sky'?" What I like about it is, like Magnolia, it is both a reference to music and nature without being excessive in either way.

Rebecca left a week ago Monday. We already miss her presence, company, and amazing assistance. She'll always have a special place in our household, and we look forward to seeing her again.

The swarm of doctors' visits continues. I joined Mom to take Loki to the urologist, Dr. Baskin, who did two of the three surgeries on Loki's kidney. After reviewing a kidney ultrasound, he said that it looked great. He agreed that we need to keep an eye on it, and that extra water is a good idea. But his attitude was more optimistic than that of Dr. Lo, although he also clearly stated that the Nephrologist is the Dr. to make any statements about the kidney.

Mom took Loki to the child development specialist. Dr. Daly, whom Mom knows through her many years in early intervention, was quite impressed with Loki. Here's Mom's report:

As we knew, Dr. Daly confirmed some minor delays in gross and fine motor development, in verbalizations (spoken words) as well as in adaptive skills (specifically eating). However, Loki's receptive language skills (understanding language), cognitive skills (thinking and problem solving) as well as expressive language through gestures (e.g. sign language) are coming along very well. She said "I do not think I have ever seen a baby his age, born this early, getting this far" into the test. Even since this visit two weeks ago, Loki has made some progress. When asked what the kitty says he answers "mauw" and his first word, in addition to "mama" (for both Daddy and Mama) is "baby" (he still needs some prompting). Loki has discovered walking behind his wagon and his "side to side" head motion has turned in to a meaningful shaking "no" when he does not want or like something. Finally, Loki has welcomed us to an early phase of the "the terrible twos." He throws little tantrums when he disagrees, throwing himself on the floor, making his body limb and screaming.

Although we are, of course, very proud and happy with how amazing our little guy is developing, it is not quite as natural of a process as with "typical" children. Loki needs active prompting and encouragement (almost) constantly in order to master new milestones. If we forget to reinforce and remind him of certain activities/words (e.g. who his birdie is) he quickly forgets. Typically children show plateaus in their development and have growth spurts. With Loki these plateaus are more intense and sometimes he shows significant regression to earlier stages (often, but not always, after a procedure). The encouragement and prompting are somewhat more "exaggerated" than one would expect with a "typically" developing child. This, in turn, is very typical for preemies in general, and micro-preemies in specific. The extra focus on developmental milestones is, as I've observed during many years of early intervention (and as demonstrated by research), what makes the difference in developmental outcome.

In other words, Loki is doing wonderfully well, yet his development does not unfold quite as natural from exploring the environment and observing life around him as in most children.

Other difficulties remain. Loki is generally less fussy overnight than before, but the rough nights still happen. He throws up at least once (often more) daily, but we are learning how to pace his food and water. Being in the car is now a strong trigger; it may be time to move to a forward-facing car seat. And his skin around his feeding button is often in bad condition. We must apply various cremes to it a few times per day.

Loki is now sleeping in the second bedroom. For now, Mom is sleeping overnight on the floor next to him in order to reassure him when he wakes. So far, so good.

Best of all, we took Loki on his first bike ride. We went on the bike road along the East Bay shore, from Emeryville up to the market at the Berkeley Marina, with views of the Golden Gate Bridge all along.

This video has a few clips:

  1. He shows his action-on-command, "side to side" which has also turned in to a meaningful "no." He looks for his new baby, and sort of says the word (in the last few day his "baby" has gotten more clear and is being used at more appropriate moments). He then shows his symbol for eating (smacking lips).
  2. He shares his cat's "mauw."
  3. Walking with the wagon.
  4. Loki often makes sweet moans as he falls asleep.
  5. Some of the "bad" moans Loki makes, even while he is asleep.

Bathtub Loki:

Almost in the nose:

Fluff Head:

Mmmm, paint:


Eating with Mom at the Seabreeze Cafe at the Berkeley Marina. They have the same nose:

Gonna take my bike out. We have the same expression:

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.