Friday, November 27, 2009

Thanksgiving photos

Yesterday was Thanksgiving, the American harvest holiday during which we consider and state for what we are grateful. This year there is much for which we are grateful, and obviously at the top of that list is Loki and his health. Last year at this time, he was just over two pounds and had recently moved from the ventilator to the SiPAP. His eyes had just opened. We were worried about infections, his eyesight, desaturations, and Brady arrythmias. We could only then begin to hold him, swaddled on our chests in a kangaroo hold. Now he is a bundle of giggles, crawling around the house with only a feeding tube, which is challenging but manageable.

Mom and I are also thankful for our supportive families and friends, my job with its understanding colleagues and health care, the quality of health care Loki receives, our relatively inexpensive apartment, and much more.

Loki's Tante Marieke leaves in a few hours. She has been a huge help, quickly diving into all aspects of work around our hectic household, providing us a bit of breathing room. We'll all miss her!

I promise some videos soon. I just have to figure how to edit Xvid encoded videos, which both Quicktime and Movie Maker don't like. For now, photos!

Out for a Thanksgiving walk by Lake Merritt, charming all:


On that walk, Loki learned that he could play hide and seek himself! Either that, or he was preparing his mask for being a superhero:


Thanksgiving at Loki's household, with food once again from the Whole Foods deli:


Happy to be with Tante Marieke:


Loki's new behavior is to point at and flex his fingers at the person to whom he is giving attention:


Dad practices Loki's scrunch face:


After an avocado session:


Putting on a diaper can be tough. We now tape his tube to it in two places, and Loki can be uncooperative:


Dress up:


At the house of baby Jeremy, Loki was less territorial:


Jennifer #1 gives a friendly gesture:


With Jennifer #2:

Monday, November 23, 2009

Tante Marieke, good and bad feeding, and our bad boy (photos)

Loki's Tante (aunt) Marieke arrived yesterday from Holland. She is very excited to see him, having saved up many hugs and kisses in the last six months. And the feeling appears to be mutual.

In recent days, Loki's mood has greatly improved. After a tumultuous few weeks of my absence, Oma and Opa leaving, Loki and Mom being ill, and surgery, he had become much less happy, smiling and laughing less. In recent days, he has returned to his old self.

There is good and bad news about Loki's feeding. The good news is that Loki is gradually eating very small amounts of food. In the last three days, he has begun to put bits of various foods in his mouth, chew them, and then either swallow or spit them out. He likes avocado, baked veggie chips, fried green beans, cheese, and potatoes baked in oil. We recognize that these are not healthy foods. But the point now is to get him to eat anything.

Also, Loki's reflux seems less severe now than before.

The bad news is that Loki's feeding tube comes out of his button about as easily as it did before the recent surgery. We now use an elaborate system of his diaper strap, a girdle, several pieces of tape, and Loki's own body to keep the tube in place. But these are still not enough: Last night it came out in the middle of the night, which we realized when Mom noticed that his clothes and sheets were all wet. Thus we had to get up and change these clothes and sheet, plus the diaper and girdle, and reinstall and retape the tube--all while Loki was crying quite loudly.

Today, a baby and mother whom we met at the Alta Bates NICU visited. This young boy is about the same adjusted age (i.e., similar due date) as Loki, and was at a very similar stage of development. It was fun to see them side-by-side, and interacting.

However, we discovered that Loki is quite territorial. When the both of them were standing on opposite sides of Loki's wooden activity center (see photo below), Loki gradually walked around to the other side in an apparent attempt to push his friend (or frenemy?) away. Later, when the boy played with Loki's stacking rings, Loki took them away. And when they were near each other, Loki even tried to sort-of bite him!

Tante en neefje 1:


Tante en neefje 2:


Loki pushes aside his NICU "friend":


Happy, dancing in bed:


Oaktown family:


Here are a couple old ones that we had overlooked. Mom and Loki in the emergency room when Loki got sick while I was away:


And Loki at the UCSF hospital, right before he got his G-tube, over a month ago:


Videos coming shortly.... I must edit them a bit, and am experiencing some technical difficulties.

Friday, November 13, 2009

Surgery aftermath; Loki's cheesy smile (photos)

We have been home now for over 24 hours, and things are finally back to normal, after two weeks of mayhem. Well... normal by our standards. Physically, Loki is fine, and is tolerating his feedings, although at a slow rate and not yet at full calorie concentration.

Mentally and emotionally, though, Loki is clearly different. Although this most recent procedure was the mildest one, Loki is much more self-aware than even a month ago, the time of his previous surgery. This time, when he slept in the hospital, he would occasionally wake up and look around nervously. Once Mom would say, "I am here, Loki," he would fall over and go back to sleep. During these two days of recovery, Loki has been extremely clingy. He cries easily when put down or walked away from, and quickly stops crying once picked up. Clearly, Loki was more traumatized by this hospital stay than the previous ones. Hopefully, this was the last night that he will spend there.

In better news: Dutch people sometimes comment that Americans are quicker to flash a fake smile for a photograph. Many of them find this to be cheesy. Loki seems to have learned how to flash a quick, fake smile of his own. When we pull our a camera and call his name, he often does a particular smile, with his brow scrunched down--NOT his normal smile. Once the camera is down, he stops. See these:










Notice anything in common?

Wednesday, November 11, 2009

Surgery done

Surgery is over and all is fine. We are back in the familiar settings of 6-Long at UCSF. We even saw several familiar nurses who asked why we are here. We are settling in for what we hope is a single night.

Surgery #5: G-tube replacement

Loki is presently undergoing surgery at UCSF Children's Hospital to replace his G-tube (which is actually more of a button or plug). The same style will go in, only this one should be able to stay closed, and to hold a tube in place. This should make feeding much easier.

I was hoping that we could wait until his button is replaced with the Mic-Key--but Loki won't be big enough for that for a couple months.

The good news is that this is a very simple procedure. In fact, no cutting is required. The doctors just need to put a scope and guide wire down Loki's esophagus to swap the buttons. This could have been done without an overnight stay, but the doctor wanted to monitor Loki closely for potential infection. We should be out of here within 24 hours. Despite her exhaustion, Mom is taking the overnight shift.

Sunday, November 8, 2009

Surgery Tuesday; Recap and update of a very difficult week+

First off, Mom and I thank everyone for their words and offers of support over the last days.

Loki will undergo surgery on Tuesday to replace his G-tube button. Unfortunately, he is not yet big enough to upgrade to the Mic-Key--an upgrade he will still undergo in a couple months or so. Instead, he is getting the same style of button , only one that was not damaged by a nurse. Yes, this surgery is solely due to someone's negligence. It will take place at UCSF, and require one overnight.

The last ten days or so have been among our most difficult. Mom was nice enough to let me go to a three day camping and music event in southern California. Not long after I left, she got a bad stomach flu. And the next day, Loki was sick and unable to keep anything down. He recovered somewhat after I returned on Monday, but then got worse when I left unexpectedly for a few days soon after (more on that below). We (that is, mainly Mom) greatly slowed his feedings. Instead of 45 minutes, they now last one hour and 45 minutes. Since the feedings occur every three hours, Loki is on the pump the majority of the time. And the feedings were switched to Pedialyte, and then gradually the proportion of milk or formula was increased (or decreased) as Loki improved (or worsened). But in the process, he lost over a pound, and that is noticeable. He is now getting half and half for his feedings.

While I had a good time on my trip, I had a lot on my mind. I was worried about Mom and Loki, and I was worried about picking up germs while camping with thirty thousand people from all over the country. I was careful, and upon returning I kept my distance from Mom and Loki. But on Wednesday, I learned that a couple people whom I saw on my trip had recently (one of them) and currently (the other) had a flu that was likely H1N1. Because of their irresponsibility, I left home for a few days to wait out the incubation period, which the US government reports as probably one to four days but may be up to seven days. Furthermore, I had minor symptoms of something. Although the nurses and doctors and nurses initially said that I should wait out the full seven days, by Friday (Day 5), they said that the benefits of my presence at home (such as cheering up Loki) outweighed the disadvantages--as long as I was careful. Thus, I have been wearing a face mask and sleeping on the couch.

Fortunately, both Mom and I yesterday were able to get our H1N1 immunity shots from the county department of public health. Unfortunately, I was convinced to take the nasal spray, which contains some live virus. I woke up today feeling quite bad, although I don't expect this to last long.

Loki is now crawling quite well. And as Mom predicted, once he was finally able to achieve this goal, much other development would occur. For example, he can now pull himself up to standing, and can stand for quite some time (while holding to something with one hand, of course).

Tomorrow, Loki goes for his evaluation for feeding therapy. Hopefully he will pass (or fail, depending on how you look at it), and our insurance will begin coverage.

Tonight, Mom and our friend Christine (who now lives in our apartment complex) will go out to see some music at the refurbished and beautiful Fox Theater, which happens to be across the street. She deserves the break!

And tomorrow, Oma Heleen leaves to return to the old country. We will certainly miss her!

We don't have recent photos, as I accidentally ran our camera through the laundry. But here are a few leftovers:

A couple weekends ago, Loki went to the forest for first time:


He liked to look up into the canopy as we walked:


Dad and Dude:


Happy Mom and Happy Loki:

Friday, November 6, 2009

When it rains it pours:

Just when we thought it couldn't get worse, it did. Loki's stomach bug is far from gone. We are unable to get him up to full feeds and in the mean while a lot of his feeding comes out either end. He was very uncomfortable over night. If we slept 45 minutes straight it is a lot. Thanks to Margaret for the 3 hour nap I was able to take during the day because she came to baby sit our little guy.

Opa left on Monday and Oma started to feel a little sick on Tuesday. We have been keeping her away from Loki which is obviously sad and frustrating. Dad came home on Monday evening but found out on Wednesday morning that he may have been exposed to the H1N1 virus last Sunday. We spoke with Loki's doctor's office and the consensus is he needs to stay away until the 7 day incubation period is over. He is staying elsewhere. Only three more days to go. He has been feeling fine and we are pretty sure he won't get sick, but we cannot take any chances with Loki. Especially since his immune system is down from this stomach issue.

It is worrisome, yet no surprise, to see how difficult it is for Loki to overcome this relatively simple illness. Apparently it takes typical children approximately 24 hours to get rid of this virus. It took me a little over 12. Loki has been battling with it for almost a week.

Today we will see our GI doctor because in addition to all of the above Loki's skin around the g-tube is starting to break down.

Who ever said you should enjoy the first years because they are over before you know it?

Tuesday, November 3, 2009

Happy Halloween?

Happy Halloween? Not so much for Loki.

Unfortunately, While Dad was out of town, I got sick the day before Halloween (which is Oct. 31), with what I thought was food poisoning. However, by Halloween afternoon Loki had the same symptoms and within hours we were at the hospital emergency room for the initial stage of dehydration. Loki was very pale, very fussy and was unable to keep anything in. In addition, he was crying without tears and his pee had decreased significantly. Because we responded rapidly, by the time he was receiving his IV fluids to rehydrate, his creatinine was still within normal range. However, his BUN and ketone levels were elevated already.

We spent 6 hours at the ER of Children's Hospital Oakland. Overall we had great nurses and good care. Unfortunately hygiene standards of the intake nurse were less than desirable. We hope Loki will not catch whatever the family before him had, which was obviously contagious as they were all required to wear face masks.

At 11 pm, we were back home with a perkier Loki. Over night he was still very thirsty and woke up frequently wanting to drink Pedialyte hydration solution by mouth from an open cup. He drank the amount of two complete feedings: very impressive, but apparently only possible when he is dehydrated, because it has not happened ever since. It is exciting to know though that he is able to swallow without aspiration.

Sunday and Monday were very, very challenging. The extension tubes that plug into his G-tube button were not functioning well because they are simply too old (and we have not received our refills yet), causing the syringe to no longer remain connected to the extension. Also, the extension easily fell out of the button. And the valve in the button was not closing, and the button itself kept opening up, as usual, so some of his feeds just dripped straight out. On top of that, much of the Pedialyte came out either end. During the day it took 2 hours to get 75 mL of Pedialyte in by hand syringe (versus 105 mL of milk in a normal feeding), this every three hours..... do your math.

Loki also started to miss his daddy, he often looked around when I said "daddy." He did not take his naps, nor did he sleep much overnight after 2:30 am. I believe this was partially caused by being homesick for super dad.

During all the commotion, I did not really have time to recover from my own stomach bug, from which I just needed to catch up on sleep a tiny bit. More than three hours seemed like a wonderful night. Thankfully Opa and Oma were here as well, and they picked up as much of the care as possible. Opa had a crash course feeding and he rapidly became quite skilled.

Yesterday, we saw the doctor again, and unfortunately Loki lost almost a full pound. However, we all agreed that hydration is more important right now. The plan is to be back to full formula/breastmilk feeds by Saturday. Until then, we are building up his tolerance for volume slowly but steadily, this time with the pump. Super Dad, with a fresh mind from his four days of music and camping, figured out we could use the pump again with this new extension (which keeps the pump tube in the extension) and an even tighter girdle (which keeps the extension in the button). This makes a HUGE difference.

On a much more positive note, Loki crawls well, although only when he really wants to reach object--never just because he like to crawl. Video will follow when we have a new camera. (Dad accidentally washed our camera with the laundry). Loki also hands over objects on request or spontaneously and he especially likes to share his pacifier with me: very, very cute. He pulls my hand to push buttons and he looks up to find Faddy, Oma, Opa, duck, cat, mama and once in a while Ganesh (a little statue near his bed). He loves looking at pictures and will turn the page in a book very well when we make the initial separation for him. Finally, our handsome miracle dances when we start to sing--very cute!

Loki's mood has significantly changed since his dad came home yesterday. He also slept really well overnight, and he has kept all his Pedialyte feedings in since yesterday evening. Thanks to Dad, who took the entire overnight shift so I could finally recover a little bit, I fell much better as well.

Poor little guy:



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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Loki's Holiday Gift Drive

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