Monday, October 26, 2009

A few updates; more party photos

First, Mom and I wish to send a big 'Thank you' to all those who gave gifts and cards at the party or via mail or whatnot. We will get cards out sometime soon, but we are juggling a lot--so it may take some time.

Second, I want to congratulate and thank Mom on an amazing party. She pulled it all together in what little spare time she has, and as always, did a superb job.

Below are more photos from Loki's party, taken by friends Mascha, Lena, and Jennifer. Thanks for these!

Loki's new feeding system continues to be difficult. We currently feed him 11 or more per times day. The tube often pops out of his button during a feeding, because the button may have been damaged by a nurse at UCSF. And the syringe often won't stay in the other end of the tube, as the tube becomes looser with use. We are supposed to have a new tube each day, but the home health company can't seem to get them. Thus feeding can be quite a handful.

Those are merely inconveniences. Sometimes we loose feedings. Because it is loose, his button often pops open, such as when he is sleeping. If the inside valve is not closed, an entire feeding can spill out onto the sheets (after being in his stomach... yuck!). And he often throws up a feeding or two each day (also yuck).

As a result, Loki is not taking in enough calories and is not gaining weight rapidly enough. We have increased the strength of his formula or fortified breast milk to 27 calories per ounce.

As I mentioned previously, the current button is temporary, and will be replaced with a Mic-Key later. That is able to lock the tube in place,but its installation requires that the hole into his stomach has completely healed. This is because the Mic-Key is inserted from the outside, and then a balloon inflates on the inside. The doctor is searching for one small enough for Loki, and we hope to have it installed in mid-November.

We are also working on getting shots for Loki. He got his flu shot, and we are anxiously waiting the availability of the H1N1 shot. Loki was initially denied insurance coverage for a Synagis shot, which helps protect against respiratory syncytial virus (RSV), because he has passed his first birthday. But 'the squeaky wheel gets the oil,' and Mom hounded CIGNA and, with great assistance from our pediatrician, got this arranged.

Loki is now starting to crawl, but in more of an accidental manner than intentional. He has yet to figure out what movements he must do in order to move forward.

For the first time, I will be heading out of town for a few days of recreation, beginning Thursday evening. I am very grateful for, and nervous about, Mom taking on all the work. But when I considered not going, she insisted I do. That's how great she is.

Ready to party in pink:


The enormous cake:


A few words:


Candles go out:


Hmm, sugar...:


Happy family 1:


Loki has a lazy eye. We call it pirate eye. Arr!


Loki and his lady friend:


Oma Heleen and Opa Frits:


Happy Family 2:


Big happy family:

5 comments:

Cheryl said...

Gee, the tube stuff sounds awful. I well remember the spilled feeding/stomach contents issue--what a mess! You guys are incredible, as always...the party looks so fun. Sorry again I missed it...and as for Loki--what a beautiful boy he is.
Have a fun break, Jesse, and Lijn, let me know if you need a few hours. Also bear in mind that Deidre, almost 16, is completely competent with the MicKey type tube feedings, so once he gets that, if you need a sitter, she's be perfect. I hand trained her myself--and she's great! You are, as always, such an inspiring family--but still, the challenges are very real, and I know, very exhausting. Hang in.
Cheryl

rstiles said...

Terrible stuff about the tube! Really hoping it gets sorted out for Loki and Mom and Dad. It sounds like he's on the same crawling schedule as M&M. They were right around a year (calendar age) when they started threatening to crawl. Real crawling didn't come for a month or so later...

Best,
Rob
rstiles3 at g mail dot com.

Suzan said...

Ontroerend...

Liefs,
Suzan

Selena said...

I'm so glad that you had a great party! All of you look so beautiful...sweet! :)

marieke said...

Wat een gedoe zeg met die button. Je zou bijna weer een tube door z'n neus doen. Helemaal als hij niet genoeg aankomt. Nou wie weet krijgt hij z'n nieuwe mac-key voordat ik kom. Foto's zijn gaaf!!! dikke kus voor jullie, dad enjoy your break and mom I can't wait to see you...x

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.
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