Friday, October 31, 2008

Day 13

Loki is now up to 696 grams. Once his growth kicks in, we hope to see his mass increase by 10% each day.

The oxygen concentration in his respirator is down to 21%, which is the normal concentration found in the atmosphere.

Unfortunately, the staff suspects that his heart murmur may have reopened. He will get another cardiac ultrasound next week.

We continue to hope that he will be removed from the respirator on Monday. After that, we may be able to hold Loki.

Mom is feeling a bit sick again, and stayed home today. She is very sad about this. I will try to get away from work and visit the tyke.

Photos with hands

Mom stares at Loki when she can. She sings songs. She takes photos. Here, Loki plans on being a sinister villain.

Here, he just sleeps.

Thursday, October 30, 2008

Day 12: No substantive news

The NICU staff gave the OK for Mom to visit Loki, but just not open the warm box. This morning, an informal conversation with the neonatologist didn't turn up any significant developments. Loki behaves well and sleeps much. I suppose the little dude just abides.

Last night I watched him sleep. I think he can open his eyes and remain sleeping, like birds and gangsters. Or maybe he was checking me out and thinking, "Meh, sleeping is still cooler than dad." But when he did wake, his eyes are open much wider than before, and they move side to side a bit.

I fed him for the first time. Not quite a "Gerber moment" (in the words of Nurse Janet), but still neat. I connected a 1 mL syringe to an opening on his feeding tube, and pushed in Mom's milk, followed by a bit of air. Yum.

Grandma flew home this morning. Oma and Opa will return today or tomorrow.

Commenting is fixed

A change in settings recently caused the commenting feature to stop working. That has been repaired. Sorry for the interruption.

I expect today's report to be phoned in shortly.

Wednesday, October 29, 2008

11 Days = 26 weeks

Although today marks Loki's eleventh day outside the womb, his development (both inside and out) now totals 26 weeks.

I asked about the respirator at today's report. His current response to reduced ventilator strength indicates that he is ready to have it removed. But because it was removed with a bad reaction once before, they will likely wait until Monday to confirm this, and remove the respirator and the breathing tube.

He continues to respond well to feeding. Tomorrow the amount will increase.

His brady arrhythmias are down to four in the last 24 hours. These may increase in the future, though.

Mom is recovering, but is showing mild symptoms of a cold. She stayed away from Loki last night and this morning. She is very very sad about this.

Loki lounges and wiggles (video)

Blog changes

I've changed a couple things on the blog. Most obvious is the new design. The duck theme started when Kyra gave us a small little music box. It's song, in Dutch, is "One little, two little, three little duckies," and the box has duckies on it. We played the box through Mom's tummy while he was in there, I played it for him just after he came out, and we play it for him through the warm box. From there, his name sign and growth chart got ducks. Now his blog.

You now do not have to register to post a comment. To do that, click the "0 comments" or "1 comment" etc. link at the end of a blog post. Then, at the end of any comments that may appear, click on the link "Post a comment."

Ten days

The news today is that the brain scan by ultrasound came back generally good. The bleeding has not expanded. It seems that the blood doesn't really go away. Instead, the actual area of the brain (the germinal matrix) will begin to disappear.

Loki lost a bit of weight since yesterday, probably due to stress. He now has a PICC line, which is a type of IV designed for long-term use. It actually goes straight to his heart.

An occupational therapist visited today. To the extent she could tell, his movement is good.

He had fewer "desat" events, in which the oxygen level in his blood lowers.

Kathalijn is recovering well. Today she walked home from the hospital.

So, overall, good news. The next big goal: Respirator off and its tube out.

Monday, October 27, 2008

9 days old: eyes opened!

Today, a nurse saw Loki open his eyes just a bit. Mom caught it on a photo, below. I missed it so far.

Loki is accepting the milk feeding, so far. He has put on a bit of weight, up to 675 grams.

The brain ultrasound has occurred, but we don't have results yet.

The ventilator is on a low power setting, which is good. It indicates that he is doing a significant portion of the breathing himself.

Loki had a couple blood lines pulled, one from his navel, one from his arm. The former, in particular, looked infected. But a blood culture came back negative, so there appears to be no infection in his bloodstream. Mom assisted in removing the line from his arm. When the tape was slowly pulled off, he cried - without sound. Mom's heart broke.

I am back at work today. My employer has been extremely supportive and flexible through all this, and deserves praise. My mother (Grandma, a.k.a. Nana) will leave on Thursday. Mom's mom and step-dad (Oma and Opa) should return later today.

8 days old: little news, just photos

Loki is one week and one day old today. There's little news to report. All seems on track. All we have are a few photos of our cute little dude. Several people have claimed that he looks like me (Dad). I may agree, especially regarding the wide nose. His mouth looks like mine, too, but it is hard to see with the breathing tube. The hairy back is his alone: I claim no responsibility for it.




Sunday, October 26, 2008

Some quick blog logisitcs, especially email subscriptions

I'll try to post more often, aiming for once every 24 hours, even if it is a short "All OK here."

I tested the email subscription system to this blog. The emails only go out once per day, and appear to be a bit delayed from the actual posts here. Videos don't seem to show up. (So you may want to be sure and see the video of the first feeding.) I'll try to flag them as such in the future. Also, subscribing is a bit cumbersome: You will need to both type the letters in the image, and then click a confirmation link in your email account.

Day seven: Honeymoon over

Today Loki is a week old!

Loki had a positive report on Friday morning and seemed to be responding well to the switch from the respirator to the SiPAP. Friday night we got a call that he not only had to be put back on the respirator, with its tube into his trachea, but that it did not go in well and that the respirator will be needed for quite a long time. It was a tough night for all of us, but in the morning we went to the hospital for a report from the regular neonatologist. (The previous night's disturbing news was from a pulmonary pediatrician.) The situation was not nearly as bad as had been initially conveyed. Yes, he went back on the respirator, but that's not uncommon. Yes, there was difficulty getting the tube in, but the obstruction seems to be above the vocal cords in the throat, which may not be a huge problem. Keeping the respirator tube in his throat is not good, but they'll try pulling it out in a about week.

(Added this paragraph 10/26) One drawback of the SiPAP was that Loki would frequently have a brady arrythmia, in which his heart rate plummets to half or less than its normal value. That's followed by a drop in the oxygen concentration in his blood. Although these events generally self-corrected, they were quite scary to witness. The neonatologist confirmed that these were an acceptable price to pay for being off the respirator. He was given a drug - atropine - that greatly reduced their frequency. Now that he's back on the respirator, they are not occurring.

We have entered Loki into a slightly experimental treatment for preemies who have to go back on respirators from days 7 to 14. They will examine the effect of using two treatments together, each of which have been approved individually. He will get inhaled nitric oxide, and either a lung surfactant or a placebo.

On Monday he'll get a brain ultrasound to see if the bleeding has stopped. The medical staff originally observed some minor bleeding in an unimportant area, and this bleeding normally stops after a few days.

Loki has started feeding. He's getting one ounce of Mom's milk every four hours.

Mom came home from the hospital late Thursday. She pushed herself a bit too hard yesterday, and is taking it easier today. We will be going to say goodnight to him in a bit.

Friday, October 24, 2008

The first feeding

Sorry for the color, but Loki was under the blue light to fight the jaundice. That's since been shut off.

photos from day five: room


Nurse Janet made a sign with ducks

Dad's mom (Grandma) brought a monkey on the main monitor. In back is a music box (with ducks!) from Kyr, and the growth chart (ducks again).

Mom checks on the klein mannetje


Dad holds Loki

The view from Loki's room includes the Campanile of UC Berkeley and the hills

five days: improvements

Each morning around 10:30 AM, the neonatologist and two nurses give a report. Over the last two days, the news has been positive. The most significant development is that Loki was removed from the ventilator today and to an intermediate step towards breathing on his own. The SiPAP machine uses a little face mask or short tubes in his nose to push oxygen-enriched air at a higher pressure, whereas the respirator used a tube into his lungs. His oxygen level had to be increased back to 30% in the process, but the respiratory therapist said that Loki is doing surprisingly well. With the tube out, we may soon hear him cry. I imagine it will be both joyous and heart breaking. We were warned that moving back to the respirator for a bit is not that uncommon.

The other big development is that he had his first feeding through his mouth. Mom has been using a breast pump, and she was able to feed him via a tiny syringe. A video is one the way. He now has a feeding tube to his stomach, which is likely to stay for many weeks. Much later, some bile came up from his stomach. An eye will be kept on this, but it doesn't seem to be a large problem.

I haven't heard more on the brain bleed. I'll soon ask when the next scan is.

All these positive developments are great, of course. But we remained aware that this "honeymoon" won't last forever, and we try to remain prepared for large and small bumps in the long road ahead of us.

His skin has changed a bit. It is closer to the color of pinkish-flesh instead of bright pink. He's got a thin layer of peach fuzz hair all over, and even dark hair on his head. All that will fall out, though. Because he has so little hat, when he moves of stretches his arms, legs, and neck, the skin is wrinkled. Loki really looks like a tiny old man.

He is responding better to touch. Generally, only Mom and Dad are allowed to touch, and only through a gently cupping of his top and bottom ends. Today Mom changed his micro-diaper and took his temperature.

My mother has been a huge help, running errands and taking care of practical tasks as she does best. Mom's mother and step-father (Oma and Opa) arrived yesterday, but there was some concern about Oma's recent cold. So after a quick visit with Mom, they are on a brief trip to see other relatives until she clears up.

Mom will be discharged form the hospital within a couple hours. This will be tough on her. The last couple days and nights, she has been able to walk up to the NICU on her own if she can't sleep. Now, not only will she be in a different building from her new son, but she'll need a lift to the hospital to see him. Soon, though, I expect her to be able to walk there on her own. And she can always call anytime to check on his status.

As always, thanks for your words and deeds of support.

Wednesday, October 22, 2008

three days: so far so good, a name, photos, a blog

Dear family, friends, and comrades,

As always, sincere thanks for your continuing words, actions, thoughts, and prayers of support. It truly means much.

Before we start, a quick critical request. The most common source of problems is germs. If you are considering seeing us and have a cold or other contagious illness, or have recently had one, or are even around someone with one, please let us know, and we'll assess the situation.

First, the baby boy has continued to do fairly well, all things considered, during his first 72 hours outside the womb. All tests and indications so far are good to reasonably OK. Some details are below. But we've been warned that there is often an initial "honeymoon" period of few or no problems. And several hospital staff have warned us that, even in the best case, this will be a very turbulent journey, with lots of steep ups and downs. Preemies are generally in the hospital until the due date, give or take a few weeks. That means 3 to 4 months of this.

Second, the little guy has a name: Loki Sky. Regarding the first name, I was interested in having a name that reflected traditional cultural inheritance. I read that, many years ago, the Netherlands region followed Norse mythology: Thor, Odin, Freya, valkyries, etc. Loki was a major figure, sort of one god of many. His role is not unproblematic: He was the Trickster, the trouble-maker, the source of mischief. Many cultures have a similar figure, like Coyote of southwest Native Americans. Trouble was needed to prevent boredom. We've certainly had our trouble, and look forward to years of mischief.

Third, Mom is recovering. She still has some pain, but is eating solid food and walking a bit. She should be discharged tomorrow, on Wednesday. Her surgery was not minor, and was even more severe than a typical C-Section. Because the baby was so young and delicate, a larger opening than normal was needed. The doctors said that her uterus was very small, and crowded with little Loki. We believe that the water breaking last week bought us some time, and the little man was able to grow one more crucial week.

We are still in "shell shock" and feel a bit disconnected from reality. I suspect that it will hit us sometime like a bag of bricks. This feels like the best thing and the most difficult thing to ever occur to me. For now, it is amazing to meet this wonderful new delicate person, but at the same time it is very difficult to fully process just how uncertain the future is. For me, words like "born," "father," "baby," and especially "congratulations" are strange. I don't have a crying baby to hold; He is in a box instead. And the blessings are very mixed right now. Despite this ambivalence, it is a joy to place my hands inside the box, and have his tiny feet press against my palm, wiggling the smallest toes imaginable.

Today happens to be my birthday, and we had a little celebration in Mom's hospital room. I have already received the best gift ever, and it was easy to choose a wish when I blew out the candle. And as I turn 34, I realize that I have many more grey hairs than I did a month ago.

Back to baby Loki: His brain, heart, and kidneys were scanned by ultrasound. His heart initially had a slight murmur, which is common, but its gone now. He has just one kidney, like his Mommy, but it appears to be functioning fine. There was some minor bleeding in his brain. Most of this occurred in a part of the brain that is not used after birth (the germinal matrix). Some of the bleeding is near the ventricle. This location and degree of bleeding is fairly common during the birth of preemies, and often decreases around day three. If this decrease is observed soon, then we have one less thing to worry about. He has a bit of jaundice, also common and - if cured quickly - probably not a problem, and is under a strange blue light to treat that. His initial weight (610 grams) was a bit above average, and has since went up and down. It should go down a bit as he looses some excess water. His urination was initially not frequent enough, but has since become appropriate. His breathing is assisted in two ways: a respirator that pushes air in and out, and a higher level of oxygen. We really hope that respirator can be removed within a few days. Lowering the oxygen level is also important, but not as much. It has gone down from 30% to 25%. He is surprisingly long and skinny, at 12 1/2 inches (about 32 cm). His diapers are tiny.

My mother arrived yesterday, and that has been a huge source of support. Mom's mother and step-father arrive tomorrow.

Feel free to call Mom's cell to talk with her. Keep in mind that we have limited time and energy, and are sorry that we have not yet returned all your calls. Also, please do not call her between 9 PM and 8 AM, nor me between 11 PM and 8 AM. We must leave our phones on in case of emergencies. Remember that Indiana is 3 hours later, and the Netherlands is 9 hours later.

With love,

Photos from day 3

Click for larger version







Click for larger version.

Nederlanders: Those are inches by his feet, of course. There are about 2.5 cm to the inch.

Photos from day 0

Click for larger version.



Oct. 18: Quick Update

Dear friends and family,

Here we are at 24 weeks and 3 days, almost a week in the hospital. Mom had a few OK days, but in the last 24 hours things have worsened. Some contractions - irregular and not lasting long (good) but strong (bad) - led to a boost in drugs. That made Mom feel unpleasant, and the doctors are lowering the level. There is some concern that her single kidney can't process the higher level of magnesium. The fetal heart rate remains strong, though. My hope is that the boost in magnesium etc. over the last 12 hours will push her symptoms back down, and that she can remain on the lower level for a few more days.

We are deeply grateful for all the offers of help and hopes. I am keeping track of them, and will not hesitate to call on you when we need food etc.

If Mom’s conditions improve, she will likely welcome some visitors. We still need to pace things. It is still probably best to call her to check on that possibility.

Again, thanks to you all,

From Oct. 15: 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.

Welcome to Loki's Blog

Dear friends, family, colleagues, etc.,

Here, we will keep you all updated as to the progress of tiny Loki Sky. The emails have their limitations. To retain some degree of privacy, I'll refer to me and my wife as Dad and Mom. Feel free to comment on each post. To stay updated, you can check this website, you can subscribe via email or RSS at the right.

To start things off, I will publish edited versions of the recent emails that I have sent out.

As always, thanks for your support.

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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