Thursday, February 4, 2010

One year, in another way

Tomorrow (Thursday the 4th) is one year after Loki's due date. In other words, his adjusted age is one year. The good news includes that, due to our new feeding system, his weight has shot up to 20 pounds (9 kg)! That is the tenth percentile at one year for normal, full term babies; he is surely at a higher percentile when compared to other micropremies. This is quite the accomplishment, given the circumstances!

Our new feeding regime continues. It is a lot of work: from 7 AM until midnight, we feed him over an hour, wait 30 minutes, give him water over an hour or an hour and a half, wait 15-30 minutes, and start the next feeding again. Thus we are almost always doing something. If it goes right, we do little overnight. But two things typically go wrong. First, he still throws up quite a bit, generally a big one once per day. It is very sad to see Loki go through the discomfort. And given how much we work getting the food and water into him, this feels like a kick to our gut; it is very frustrating. When this happens, we compensate with more food and water overnight. Second, he is often extremely fussy at night, screaming and flailing his arms while asleep. We know nothing is physically wrong, because if we fully wake him he is fine.

However, overall, both of these negative aspects are very gradually lessening, and the general trend is in the right direction.

The new Mic-Key button is an improvement. The tube doesn't slip out of the button accidentally, and it comes out easily when you want. However, the button itself can pop out of Loki's tummy. This already happened, and Mom was quickly able to put it back in. Also, the button sticks out a bit "tall" from his tummy, and thus can irritate his skin as he rolls around at night, pushing it against his body at an angle. Fluid can even leak around the button (eeeewww...). We are working on a system of gauze and girdles for now. We ordered some Button Buddies and Mic-Key-master Cheryl recommended Lyofoam, which we will look into getting.

We have only been using the pump to give him water when he's asleep. But lately, this seems to really bother him. I can't explain why a slow, steady stream of water would be more irritating than a series of bursts delivered by syringe, but this seems to be the case.

Loki has recently taken a big step backwards in language and cognitive development. He seems to have lost many of his signs, and his ability to respond to quite some requests. Mom is now working extra hard on these developmental milestones. The developmental psychologist at the feeding clinic said that there is anecdotal, but not quantitative, evidence that this can result from anesthesia. Loki's loss of abilities did approximately coincide with his last surgery.

Given this feeding system, and the difficulty while doing it out, we go out a bit less. Recently, though, Loki, Rebecca, Mom, and Nurse Margaret went to the California Academy of Sciences, a science museum, in San Francisco. And Loki, Rebecca, Mom, and I went to the petting farm in Tilden Park in Berkeley. Photos below.

I forgot to mention in my previous post that Loki did not need to be intubated during his last surgery, and he did not need supplemental oxygen after it, as his blood oxygen saturation level was high. These are signs that Loki's lungs have strengthened.

Loki shows Margaret that the fish wants a bite of his pacifier:

Baby, Mom, Gorilla:

With Dad among the goats and eucalyptus:

With Dad again:

Not so sure:

About this, he is sure:


Loki likes lights. The first one that he can turn on and off himself is, unfortunately, inside the refrigerator:


marieke said...

The picture in the fridge is great!
I also feel sad while thinking Loki can not enjoy food. But how great his weight is!!

Hopefully his behaverial development will improve soon.

He still is the most beautifull baby in the world!

Anonymous said...

Doing the math again with birthdays reminds us all of how utterly miraculous this beautiful boy's life is. And he was given the greatest gift of being born to you two. How lucky you all are. Love you guys.

Elaine Stiles said...

Hi guys - Wow! 20 lbs! Loki now weighs more than Milo by half a pound, so good going Mom, Dad, and Loki!

I'm sorry to hear that feeding is still such a frustration. Maddy's relatively brief period of GERD was so nuts to deal with, I can only imagine the depths of difficulty you face with Loki's regimen. Loki was so impressive in his expressive skills, too, and I'm sorry to hear that he seems to have lost some. Being the eternal optimist (and what preemie parent isn't?) I hope he's just put them on the back burner in preparation for some other milestone. Or perhaps he's hitting the terrible twos early and is just choosing to ignore his parents? :)

Good thoughts and encouragement to you all, E, R, M&M

Mascha said...

I feel so blessed that you accompanied us to a 'play date' at the park. I'm fairly certain he will get to like the swing more and more.

Love the fridge-light story. Maybe at some point this will get him to like real food. Who knows.

I know it's incredibly hard to deal with the feeding, but it IS truly amazing what you all have accomplished, and where Loki is at his adjusted first birthday. He looks great for all the stuff he has gone through.

Much love to you.

berkeleygal77 said...

I've had experiences w/little kids who spend so much energy (for example) on their gross motor skills, that for a while, language development falls behind. Maybe that's what's going on? PS - love the double chin in the reclining on pillows picture!

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.

Subscribe via email

Enter your email address:

Delivered by FeedBurner

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.