Wednesday, September 30, 2009

Strapped in; More photos

There is little to report here besides the new photos, below, from the second part of our trip and the Alta Bates NICU picnic. Loki continues to sleep more than usual. It seems he is recovering from vacation. He really seems happier at home.

Sleeping presented a dilemma: Loki should sleep on a slope, with his head above his stomach, so that his food and reflux stay down. But he rolls a lot. So Mom found this item--the Tucker Sling--on the Internet that seems to help. It is like a sling around his body and legs, but then straps to the bed. It prevents him from rolling, allowing us to have his bed sloped. His discomfort while feeding overnight seems to be less now.

Waving with Mom:

On the beach:

Beach bum:

With Dad on the semi-submarine fish watching trip:

The village waterfront area on an uncommon foggy morning:

The fog rolls in but burns off:

The tube and pump are obviously working:

Fashion series #1 - bilingual dictionary:

Fashion series #2 - lot-style Sleeping Monkey onesie:

Dipping in the water with Anthony, Sebastian, and Mom:

Is the water that cold?

Two cousins, and two second cousins:

At the picnic with Nurses Margaret and Janet:

With Loki and the two nurses are the families of Milo and Maddie (preemie twins who also had Janet as a primary, and whose blog Mom followed), and our NICU neighbor Ruksana and her father:

Monday, September 28, 2009

Back from vacation; All better; Two videos

Today we returned home. Mom and Loki were ill on Catalina Island for only about 48 hours each, and their conditions were bad for only about 12 hours. Loki remained a bit droopy and tired, though, for the final day and return trip. We think he may have just been overwhelmed and tired, and even homesick. Once we in our parking garage, he looked around intently. And once inside our apartment, he was suddenly happy and energetic, back to his old self. He even flapped his arms up and down, which is one of his signs of joy.

Once off the island, we spend a night at Mom's cousin's house in the L.A. area. She (Nicole) and her guy (Anthony) just had a baby (Sebastian) as well. We all enjoyed ourselves very much, especially Loki.

Today we went to the annual Alta Bates NICU picnic. We saw lots of our favorite nurses, staff, parents, and babies.

His surgery for the G tube is still on for Friday, as far as we know.

We have lots of photos, including from the picnic. I don't have time to sort them now. But I do have these two videos. (Email subscribers will need to click the headline to see the videos.)

Here, Loki and his second cousin Sebastian meet the surf at Laguna Beach.

And here is a moment from Loki's final session with early interventionist Barbara. This is a couple weeks old.

Wednesday, September 23, 2009

Vacation's ups and downs; Surgery soon; Many photos

Loki and we successfully embarked on our first vacation--and our first trip out of town--in over a year. We are on Santa Catalina Island, off the coast of Los Angeles. We came here because Mom preferred a warm beach, and Loki can’t fly. I like that there are very few cars--mainly golf carts. We are staying in the single small and quaint village, Avalon, and not doing much of anything. Although our days still have all the details of feeding pump, breast pump, medicines, and more, it is wonderful to be out among the palm trees, beach sand, and blue ocean.

Packing and traveling were a different matter. It was very complex to remember what all to take. We have an entire large suitcase (and part of another) devoted solely to Loki’s stuff! The drive is normally only 7 hours, and then a one hour boat ride. But we took almost 48 hours to go door to door.

What has been great and simple is Loki himself. His behavior is wonderfully easy. He is satisfied and apparently entertained sitting in one place for quite a while, with just a couple toys, or looking around as we walk. For example, as we reorganized our luggage in our hotel room in L.A., Loki rolled around awake in his crib, just happily babbling, for an hour and a half--and then fell asleep. He has hardly cried besides just a few minutes before sleep. If it wasn’t for all his medical issues, Loki would be one of the easiest babies around.

Unfortunately, Mom has a cold! She has the sniffles and feels drained. Loki has symptoms as well. His nose is runny, and just now he cried for a long time before falling asleep. He must have his first cold someday, but during vacation seems to be an unfortunate coincidence.

Loki will get a G tube--a feeding tube directly into his stomach. This requires surgery, general anesthetics, and 48 hours in the hospital. It is scheduled for one week from this Friday, so we’ll be in the hospital Oct. 2 to 4. Unfortunately, that is the weekend that some friends from the Old Country (Richard and Maaike) will be here, and the weekend of a large free music festival in Golden Gate Park to which we planned to take Loki. But so it goes. We asked for the surgery to be after the vacation and before Loki’s birthday, so we can’t complain.

Loki had an abdominal ultrasound to examine a lump in his gut. It came back good. He had another round of blood work to examine the bicarbonate level. This was high earlier, but is now normal. Loki’s fever is still present, but a bit lower.

Of course, Loki continues to develop. Quite well, in fact: We received his discharge report from his early interventionist, and he is at the 7 to 10 (or even 12!) month level of development in most skills, even though his “adjusted age” (the times since his due date) is 7.5 months. His range of motion has increased: He can now twist and turn to pick up toys as he sits. Loki has begun to move from sitting to tummy or all fours, and he is just about to crawl. His sounds now include “b.” And he is developing opinions. When we take a toy away, or leave, he often distinctly protests.

Almost crawling:

Last session with early interventionist Barbara:

Our gear in the ferry station: big red suitcase, big blue backpack, big stroller, small black roller, and orange shoulder bag:



Long Beach (part of LA):

I’m on a boat:


Mom gets her feet wet:

Dad, stroller, beach:

Sleeping on Dad:

Hiking with Dad in the botanical garden:

Happy family (Note that Loki is sleeping and being fed while on this hike):

Ready for the beach:

Avalon again:

Thursday, September 10, 2009

Spelling etc.

If you receive posts through your email please go to the blog to read a more appropriate version! I accidentally published the previous post before proof reading. Apologies!

More procedures to come:

We have had a busy few weeks again, dealing with Loki's ongoing low grade fever and his regular specialist check ups. Finally it seems though as if there is some positive movement.

But first things first.... Dad was out of town visiting his grandmother in Indiana as she unfortunately is very ill. He was able to spend some quality time with her in the hospital, which he described as "way too familiar." In the mean while Loki and I received some much needed help from friends who brought over food, baby sat Loki for a few hours and cuddled with him as I got some housework done. Thank you all so very much, once again, for all the amazing support and offers to help out. It means a lot to us that we can so steadily count on the same people over and over again. We wish there was an easy way to show you our gratitude!

As said above, Loki still has an ongoing low grade fever, we're marking 4 weeks tomorrow! We have had two blood work ups, two chest x-rays, two urinalyses, stool sample and approximately eight Doctors visits to figure this one out. Our pediatrician, who has worked serious overtime on Loki's behalf, was able to contact the head of infectious disease at UCSF over the holiday weekend. He was able to set up an appointment for Loki with wonderful Dr. Whinetrub. She worked Loki into her schedule and finally, FINALLY, confirmed our own suspicion about the "why" of this mysterious fever. As I described to her what we had noticed since Loki has had the ng- tube placed, her sense is that Loki micro aspirates on his reflux. This means that milk comes up from the stomach through the esophagus into his throat and nose. Instead of smoothly going down the same route it came up, it goes down his respiratory tract. The difficulty with micro aspiration, at least from our perspective, is that it does not cause pneumonia, and thus it is hard to diagnose with certainty. I have been mentioning this for weeks to all the doctors we have seen as Loki is breathing faster and more heavily, often chokes (aspirates), coughs and sneezes after he has reflux and sometimes also when he drinks. Of course these tests were needed as to eliminate other issues, but it certainly is not fun to see Loki spend so many of his developing, awake hours in the car or in waiting rooms.

On a positive note, Dr. Whinetrub is pretty sure we now know the root of the issue and thus we can finally treat Loki. Treatment involves the placement of a gastric tube (g-tube) straight into his tummy. The GI doctor suspects that this may treat part of the reflux as it has worsened with the nasogastric-tube (ng-tube)in place. The esophageal sphincter is a little opened at all times, thus it is easier for milk to come back up. If this does not treat the issue well enough we may have to look into a fundoplication. However, Dr. Rhee (GI) would like to give Loki a chance until he is 12 months adjusted in February to outgrow his severe reflux symptoms. In addition to reflux Loki also has issues taking in age appropriate volume, he needs at least one hour of slow drip to process one feeding. This means we are looking at longer term tube feeding in which case a g-tube is more appropriate than the ng-tube anyway.

The g-tube placement is done surgically in two steps. Initially Loki will have a little tube in his stomach coming through his abdominal wall and skin to the surface. He will be hospitalized for two nights after the procedure. If all goes well he will receive a nice button after approximately three months which actually makes tube feedings easier than the ng-tube he has now. If the aspiration symptoms do not disappear or continue to be apparent when he drinks liquids by mouth Loki will also undergo a swallow study.

Unfortunately this is not all that needs to be addressed. During his last few examinations several Doctors have felt a "lump" in Loki's left abdominal area. It is very well possible this is nothing, or just his one, larger, well functioning kidney. However, because of history of kidney failure we will have another ultrasound to assess what is going on. In addition, I mentioned Loki's cute raspy and hoarse voice to the GI, as I was wondering if this was caused by the acidity of stomach fluid coming up frequently. She decided to investigate the vocal cords further. It is not uncommon for children who have been intubated for lengthy periods of time to have damaged vocal cords. This in turn can cause aspiration.

As much as we hoped to have have entered calmer waters by now, life with our former preemie trickster continues to be... well tricky! We are not yet in a space where we can "just" enjoy being parents. However grateful I am for this wondrous little boy in our lives, it saddens me to see Loki go through so much medical care on a daily basis.

During my work in early intervention I remember reading these endless medical files before meeting a new family, and usually be surprised about how "normal" and wonderful the family and the baby are doing. We are one of those families now. On the surface we just live our lives and move through our days. However, our days continue to be dictated by medical needs. There is some normalcy, for example Loki is taking a nap right now without needing to be held. At the same time Loki is a former preemie with amazing developmental skills and some pretty intense medical needs. As Dr. Whinetrub mentioned to Dr. Rhee, and forgive me if the quote is not precise "You hear about his medical background and wonder how this little boy is doing, but then you meet him and see this bright rose." I must say, he was charming during his visit, with his big smile, deep belly grunts for laughter and happy exploration of anything he can grab with his chubby little fingers. This kid is so much fun!!!

- Posted by mom, despite what the blog thinks

Now for the fun of it some pictures:

A couple weeks ago, with Mom:


Rolled over, looking through the back of the stroller:

All dressed up, with somewhere to go:

On the swing at Laureen's:


This looks fun:

Loki tries to hide his privates from Christine:

With occupational / feeding therapist Heather:

With Esti:

Suddenly asleep on the floor:

Thursday, September 3, 2009

The good, the bad, and the video

We have two pieces of good news from the last two days. Yesterday, Mom and Loki went into San Francisco to see Dr. Baskin, Loki's kidney doctor, for the interpretation of his MAG3 scan. The doctor described the kidney's function as "perfect," and he was very happy to see how much Loki has grown from the tube.

Today, Mom and Loki went out to the suburb Walnut Creek to visit an eye doctor. He too was very impressed by Loki's progress, saying that very few preemies who have ROP stage 3 have eyes that appear to be just fine.

The bad news is that Loki's fever continues. Today it was at the highest yet: 101.1 F (33.4 C). He has been referred to an infectious disease specialist (in fact, a doctor who saw Loki back when he had a staph infection in his first weeks in the NICU).

Here are some videos! Those who receive this by email will need to click on the big heading to go over to the web version of this blog.

A couple of Loki talking a bit, although he is a bit tired and cranky here.

Here, I try to play with Loki, but he prefers our cat Izzy.

And finally, Loki's feeding / occupational therapist tries to feed him, but he prefers staring at the camera.

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

Please consider donating to Loki's Holiday Gift Drive for the Alta Bates Summit Medical Center NICU. You can donate by Paypal or credit card here:

Click here for more information, including how to pay by check. For all posts on the Gift Drive, click here.