Thursday, October 16, 2008

From Oct. 16: Our situation

Dear friends and family,

I'd like to update you about our situation. I think you all know that Mom is pregnant. Things recently took a distinct turn for the worse. Mom was ordered to bedrest a couple weeks in order to prevent early labor. During this time she felt some contractions. On Sunday evening, her water broke, which occurred much too early at 23 and 1/2 weeks into the pregnancy. We hurried to the hospital in a panic. Her contractions became frequent. Fortunately, drugs were able to suppress contractions and labor. The fetus appeared healthy in an ultrasound, with a strong heartbeat, and her cervix remained closed.

We are now in waiting mode. It turns out that labor like this has been suppressed for many weeks. Mom will spend the rest of her pregnancy in the hospital, in bed. The side effects of the drugs - mainly magnesium - are quite unpleasant in the short term, but not in the long term (as far as is known). When the dosage is higher, she feels as if she has a severe flu. In addition, her feet are kept a bit higher than her head.

On one hand, her contractions are essentially kept away. On the other hand, her cervix has thinned quite a bit.

Ironically, we want to be in the hospital for as long a time as possible.

We've had enough time for steroid shots, which give a boost to fetal organ development. And a positive side effect of magnesium is that it helps the brain as well. (The baby's, not Mom's!)

Each day is a little celebration. Today we reached 24 weeks gestation. Looking forward, these are the days that matter most, each one bringing a significant improvement in prognosis.

All things considered, we are in good circumstances. We have health coverage. The care at the hospital is amazing. The staff is giving her serious attention. We happen to live just three blocks from the hospital. My job is very understanding and flexible, and Mom appears to be able to go onto disability leave. We have lots of friends who are offering emotional and logistical support, for which we are very grateful.

At the same time, we are confronting the reality of situation. The rates of survival and major disability for children born at this stage are intimidating, to say the least.

Our psychological and emotional state is like a roller coaster, with moments of hope and despair.

Many of you, especially the locals, have asked what you can do to help. So far we are doing OK, but we'll likely need some support. Since so many of you have offered, you can help out. (But please don't feel pressured.) We could use the occasional meal. I've spent a night at the hospital, and a couple at home - but I don't have much time to cook. Things that can be reheated are best. I am vegetarian, but not strict, and can eat a bit of white meat. Mom gets hospital food, but that has its limits. Also, a grocery run every now and then could be of great help. Please get in touch before you cook or buy anything, so that such assistance can be best spread out over time.

Soon, I may wish / need to spend some time in the office. If anyone is up for spending a few hours with Mom in the hospital, please let me know.

Beyond that, any prayers / good thoughts / positive vibes / lit candles / rubs of Buddha's belly / etc. are certainly greatly appreciated. We are thinking one day at a time, but our big goal is four more weeks. Focus any energies there, to Nov. 12.

As for visits and communication, Mom is - for now - quite exhausted. She is keeping her phone on silent, checking her voice mail, making calls when she is up to it, and not checking email. If you want to talk, you can try me at via cell or via. I think she is just now becoming ready for visitors. Leave her a phone message if you wish to stop by.

I'll send out updates when I can. Remember that no news is probably good news.

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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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