Sunday, August 9, 2009

Photos + video: Two weeks with the tube; Uncle and cousin; Swimming

We have been home from the hospital for two weeks now. The tube has a lot of advantages and disadvantages. Loki has grown more in the last two weeks than in the previous two months. He is up to 13 pounds 9 ounces (6.15 kg). We also struggle much less with feeding him . We offer food, and if he refuses, then we move on to the tube and pump. It is also easier to share the work: Before, Mom was the only one who really knew how to feed Loki. Now I can do it just as well. And the other night Loki's Nurse Extraordinaire Margaret did us the huge favor of sitting Loki while we had our first real night out in almost a year. Loki was incredibly at ease with her, which made it very easy for us to leave and not worry during our almost seven hour adventure.

Of course, it is a constant task. Each three hour feeding cycle has a half-hour set up, then a one hour wait, then a fifteen minute take-down, then a 75 minutes wait for the next cycle to begin. We give him 105 mL (half thawed breast milk, half NeoCate formula, fortified to 24 cal / ounce) over an hour at each feeding.

However, we gave in, and are now trying continuous feeds overnight. If we didn't do that, we would not get enough sleep and just go crazy. So, every 3 hours from 9 AM until 10 PM, we do normal feeding. Then from midnight until 7 AM, we have the pump on continuously, providing three feedings worth of pure NeoCate. During the week we will give continues feeds only two feedings overnight.

Loki still struggles with the food. His reflux can be quite painful, and some nights and early mornings he wakes up quite a lot of discomfort. In addition he coughs, spits up and sometimes even aspirates (breathes in some refluxed milk) more often than in the past.

Suddenly today, Loki began to vocalize much more. He used to "talk," but largely stopped in the last couple months. Then today, he talks with lots of babbly sounds, like gah, dah, bah, and blah. He even does it when he's upset. Instead of screaming "Whaaaah!" he now screams with clear syllables. It's funny, in that it sounds like he is swearing.

For a week, my brother and his son - thus Loki's Uncle Brent and Cousin A.J. - visited. It's great for Loki to meet his family!

Our new apartment has a pool, and we finally went swimming yesterday. Loki tried a little boat, and this funny head floater ring that is popular in China, but not yet here. He had a lot of fun, particularly once he got the hang of the head float and realized he could kick around.

Loki babbles:

Loki swims:

Dad and little man:

With Uncle Brent:

With Cousin A.J.:

Loki, Uncle Brent, and Cousin A.J.:

Little boat:

Head floater:

With our friend Christine, who has been a huge help, particularly at the hospital:


Anonymous said...

HeeHee. Loki talking was so cute! He was obviously trying to figure out how to get that Nuk right side up! He seemed to like that head floatie thingy. He was really going to town! Miss you, Kathalijn! Looks like I will not be out until October :( I will keep you updated! Love, Jennifer

Cheryl said...

Well, all I can say is, if that isn't a testament to the benefits of the tube feeding, I don't know what is...he looks fabulous, and seems like he has leaped about three months forward developmentally! Wow! That is so great to see. Yes, the overnight feeds do make things easier. What a life--two doting parent/servants, a pool, and a whole host of adoring fans...Go Loki!

Mascha Rodeck said...

I am so glad to read about Loki's weight gain. I hope you don't feel too guilty feeding him through the night. Loki needs rested parents. Speaking of rest, Cheryl is so right. Loki's parents should request respite care. Have you had a chance to contact your case manager about it?

Love the laughing, babbling faces and noises.

See you soon.

Sahn Lee said...

it's so nice to see Loki smile and have a good time. thanks for helping me get my week off to a good start!

Richard en Maaike said...

Wat is het alsnog een zoektocht in die voor en nadelen van de sondevoeding he? Maar wat een rust zal het jullie opleveren om toch de hele nacht door de pomp te laten lopen. Je moet echt een middenweg zoeken tussen wat je ideaal zou vinden voor Loki, maar wat ook goed is voor jezelf. Want Loki is ook gebaat bij een papa en mama met energie.
Wat een leuke video's zeg. Het gebrabbel is gezellig he? En ook normaal hoor, dat dit een periode weg/minder kan zijn, dat zal vast nog wel eens gebeuren. Flo probeerde net Loki te zeggen, maar het klonk meer als wawa. Nu zegt hij ineens baby, grappig. Flo lag helemaal in en deuk om de video van Loki in het zwembad. Hij wees, lachte en riep Loki vanalles toe (niets verstaanbaars overigens).
Kus Maaike en Flo

Mom said...

Thanks Sahn, happy Loki can get you a good start! I am sure you helped him have a better start, by helping me keep him in a few more days :-)

Kyra said...

Lova roept: papa, papa, kijk bootje vareh! Eend eend, semmuh! Papa had niet zo'n zin om te kijken (hij stond koken) maar ze rustte niet tot hij toch was gekomen. Fijn dat het goed gaat, ondanks het gesteggel. Heb op vakantie twee kindjes met sonde gezien, ben overgefocust, denk ik. En als iemand zich als boegbeeld zou opwerpen voor early childhood intervention dan zou het mevrouw KCS zijn, dus kom naar voren en sla je slag! Ga niet te snel op de barrikaden, maar wie weet kun je iets publiceren in People Magazine??

Nou, kusjes van ons allevier. We missen jullie.


marieke said...

Aahh, this is so cute! And mom you are looking like a moviestar in your bikini's and sunshades. Loki is rocking and kicking his legs off, so funny. His vocabulair is developping and it sounds cosey (?) Gezellig dus....Nice to see uncle Brent and Cousin Alexander, How long were they with you?
Big hug X tante Marieke

berkeleygal77 said...

Loki is so talkative - who knew? That is great - he looks very happy.

Andrea said...

I love seeing his legs kick and his little body enjoying the water so much!! Lijn I have to agree with Marieke, you do look pretty darn cute in your sunglasses and bikini! But seriously, he is using his legs like a little frog - smiling and kicking!! This put a huge smile on my face....

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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