Friday, July 24, 2009

New neighbor late at night

It is pretty challenging when new neighbors move in late at night. This always happens with a fanfare of people changing beds, getting supplies lined up, bright lights on, nurses, nurse assistance, doctors, beeping machines, worried parents and of course unhappy child. I understand unhappy. I am not happy either. Prefer to be home in my own bed, where the door is not left open every so many minutes with even more light and noise penetrating into the room. Our broken night will at least be a little less broken.

Loki gets his feeding by pump, every three hours the pump runs for an hour, then beeps, needs flushed and two hours later we start the same process again. Starting to get a little worried about the short naps we are facing with this new feeding strategy. Truly hope the little man will quickly be able to take in more food so we can stretch the time in between.

On a more positive note, at medical kids BINGO Loki won a "to order storybook." He will be the hero, or at least main character, with picture and name in his own personal version :-) Even better news, after a 24 hour period in which Loki was rather grumpy, he has gotten much happier and perkier again. Must be that book deal, or maybe his tummy is stretching enough for the food to feel more comfortable.

Sleep tight!


Anonymous said...

Love to you guys. Goodnight.

marieke said...

Lieve mom, dad and Loki,
Wouw thats a great present! Offcourse he is happy because of that. And well, also foor in his tummie is a nice feeling....

Kyra said...


good job, Loki! you must like the food also. Lots of love.


Mascha said...

Oh, how I hear you. After complaining about all the disturbances too often, they once sent the social workers into our room and those guys admitted that a study found out an average of 64 people (some of course repeatedly) are entering a room in a day!

I know you are terrific when it comes to getting the best for Loki. Just keep asking for what he needs and what you need. And yes, they need to do their job. But no, the door does not have to stay open in the middle of the night.

I am relieved Loki is on the tube now, hoping of course he will gain weight faster than he will develop aversions. The current schedule doesn't sound yet like there is more sleep for you, but I sure hope this will soon be the case.

The pictures of course are adorable, as always.

Wish you a homecoming soon.

Much love,

Dad said...

Loki is already the hero

Cheryl said...

Dad is right. Loki is a hero. And so are his parents.
I'm quoting from FAcebook here, sorry==but when Bri had neurosurgery,she had unbelievable pain. I had to INSIST on a pain specialist b/c nothing worked. And every time the poor little thing finally passed out in a drug haze, the other child in the room would start crying and wake her, or someone would come barging in. I made a SIGN for the room! I started using ipod headphones and very quiet classical music to be white noise for her--but that didn't ... Read Morehelp with lights on and off, people walking by us, etc. Finally, they left and I didn't ask--I just moved us to the quiet end of the room. But the real answer is your own bed, and you will get there soon! Hang in there!

Nana and Papaw said...

I want to send a note to Cheryl and I hope using the blog is OK. Cheryl, you notes are always right on target with your advice. You are able to put into words exactly what I am feeling. I'm sure you are a real lifeline for Jesse and Lijn and I am very glad they have you for a friend. I want to thank you VERY much for your fantastic advice and comforting words, just when they are needed the most. Thank you.....Nana and Papaw in Indiana

Circe said...

Jullie worden wel weer blootgesteld aan spannende uitdagingen. Ik wens jullie toe dat alles voorspoedig verloopt en dat straks thuis de opbouw én groei doorzet. Sterkte met de onderzoeken en het wennen aan alle medische en verzorgende handelingen. Jullie zijn in mn gedachten. Liefs, Circe

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.
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