Sunday, February 14, 2010

The Good and the Ugly (video and photos)

February is "national check-up month" for Loki. Just to give you an idea: he goes to feeding clinic twice, has occupational therapy at home once and a Synagis shot once. He was seen by his nephrologist Dr. Lo and ophtamologist Dr. Good. He will see Dr. Tsai at the gastroenterology clinic at UC San Francisco as well as Dr. Baskin his urologist at UCSF. The urology appointment will be preceded by the beloved kidney ultrasound. Lastly, he has a date with Dr. Daly at the infant follow-up clinic at Alta Bates in Berkeley. (This means the second round of the Baley Scale of Infant Development).

First, the best news is that Loki is rapidly gaining weight. He is up to 20 lbs and 14 oz (9.48 kg). According this growth chart [PDF] of very low birth weight premature boys, this puts him at the 75th percentile! What's more, this group includes babies born as large as 1500 g (Loki was 610 g) and 37 weeks gestation (Loki was 24 weeks). So for a 24 weeker, Loki should be even higher than the 75th percentile.

Thus far, we have mostly good news from Dr. Good and a mixed bag at Dr. Lo's office. Dr. Good witnessed Loki's lazy eye, but is not convinced something needs to happen immediately. Apparently, unlike most situations, in case of strabismus, preemies are at an advantage. Former preemies are more likely to overcome a lazy eye without an eye patch or glasses. For now, we'll just see Dr. Good in three months.

The good news from Dr. Lo is that the protein level in Loki's kidney has gone down again, from 0.8 to 0.21. (We are not sure of the untis; perhaps mg/dl?) Any protein leakage from the kidney indicates some sort of inflammation. In Loki's case, the cause of the inflammation stems from the trauma his kidney endured during its failure in January 2009, the three surgeries, and the dehydration over summer. Thus, his kidney is still recovering, which is great to know. Any leakage above 0.2 for adults and 0.5 for children is treated with medicine. However, treatment is usually not started until children turn 12 months because of its impact on kidney growth. Fortunately, Loki has steered away from another medicine in his diet, at least for now.

Less good news is that Loki's kidney will always be at risk. For whatever reason, I had hoped to hear one day that Loki's kidney is functioning normally and the many jars of antibacterial gel could be thrown overboard or at least could be cut in half. This is not and, unfortunately, will never be the case. Dad had always understood this, but somehow I had thought that maybe, perhaps... who knows?.. he would grow out of this. Dr. Lo emphasized the need for Loki to be tested for kidney functioning the rest of his his life, even if all tests come back within normal for 5, 10, 20 years. As she described it, "a kidney like his, having endured this much trauma, will always have less reserve and never be completely free of risk. Most likely, he will have issues with his kidney at some point in time." Goodbye bubble... hello anxiety.

A single, imperfectly functioning kidney works overtime and tends to shed more fluids than a healthy kidney. This increases the risk of dehydration. Loki's urine was too concentrated. Dr. Lo unfortunately had not informed us earlier that Loki needs to take in approximately 25% more fluids per day than a typical child, at least for now. This seems easy. It is a very tricky balance, though, between keeping him hydrated by "pumping him up" within the three hours that a typical feeding cycle takes, and at the same time preventing him from throwing up because we go to fast. We have recently been quite successful. Until he is toilet trained, we just have to write down the number of wet diapers. Once the boy uses an actual toilet or potty, she mentioned we may need to measure Loki's urine output. This will provide us with a more exact idea on how much extra his kidney needs in order to function properly.

The long term implications is what upsets me most. The anxious mind that rules my life now and then immediately took me to some horrifying places. Can you see an ever more independent Loki thrilled by the power of manipulation and resistance? "I am not thirsty! I am not going to drink!" His scared mama looking at him with teary eyes begging him to please, please, please take a sip! It's also disturbing to think about school or daycare settings where a substitute forbids him from drinking during class because "nobody is allowed to drink." I have had many imaginary conversations with these subs already during late night hours, and oh my, they had better watch out. Dr. Lo agreed that it can be very challenging to get enough fluids into a child. I am afraid that we have many more emergency room visits due to dehydration ahead of us. Every time Loki gets dehydrated--and we have seen how easily this happens--there is more damage to the kidney.

Finally, I am worried about what this means about building up Loki's immune system. Dr. Lo explained that Loki will need flu shots the rest of his life, as a true flu really strains the kidney. However, flu shots are not a guarantee he won't ever catch the bug. Although he needs to get common colds in order to become resistant to viruses out there, a regular cold often comes with a cough. A cough increases symptoms of GERD (more reflux), and more reflux means higher risk for dehydration. You can see my head spin in circles, I assume?

The simple reality is that Loki will go to school and catch colds and even flues. He ain't no Bubble Boy. On the other hand you will hear "please use the hand sanitizer, wash hands upon entering, and please don't visit when you have a cold or flu" many, many more times. Yes ,we are slowly entering into a space where Loki visits friends and mouths their toys. We have outings to public spaces where Loki is exposed to public germs. Unfortunately we are going to be a bit more cautious than a typical family. And honestly, I think that bites!

To close this post on a more positive note, Loki's development is incredibly fun to watch right now. After the last procedure he regressed quite a bit, which was scary to watch. Recently, it's all starting to look much brighter and Loki is especially working hard on his receptive and expressive language. His vocalizations are somewhat behind his adjusted age of 12 months, but he is starting to get the hang of language signs. Although not always accurate or quite consistent he uses more (=I want), eat, all done (=I really don't like that), dog (=all mamals), fly (=everything that moves), jump (=frog or stuff falling down) on/off (=lamps), open and shut. In addition Loki has renewed is love for sticking out his tongue; he points at his feet, hands, hair, and nose; and he "puts" cream on his tummy. He points at most objects and people he sees frequently and he feeds his doll Ole with a spoon. Loki's gross motor skills are a little bit delayed, although he is very skilled at crawling and cruising around furniture. He does not show any interest in walking when his hands are being held. The little guy pulls in his legs and starts screaming when we try to encourage him to take a few steps. I wonder sometimes whether he is a little intimidated by his new, impressive weight.

Lots more to say but the post is long enough as it is!

Thanks to those who were able to hang in there for the whole ride.

The three clips in this video requires some explanation, as most dialogue is in Dutch. (If you get this by email, you can watch the video at the blog.)
  1. Talking with Mom, Loki knows to shake his formula. She asks, Is it food? He puts it in his mouth. She says that it goes in his tummy, and he puts it there. When she asks, Where is your hair?, he crawls off and (eventually) gets his comb. He then correctly gives the locations of his feet and hands. But when asked about his nose, he goes for the ear. Finally, when Mom says the Button Buddy is for his tummy, he puts it there.
  2. Loki shows off his ability to make a "raspberry" sound. After Mom points out that is what his farts sound like, he signs for washing his hands, which may be because he pointed to some antibacterial gel. Please note that this is not my real laugh; I am intentionally being goofy here.
  3. Loki "eats." This part is somewhat long and boring, but we want to show the limits of his eating. He is so much better than a couple months ago: He happily puts food in his mouth and chews. But notice that, over the three or four minutes, he actually swallows very little.

Rebecca, Margaret, and Loki on top of San Francisco's Twin Peaks, looking toward Oakland:

Rebecca and the big boy

Playing with the twins:

Hug from a twin:

With Mom on the Berkeley pier

Hanging back from the Ergo carrier:


Off to the beach with Mom:


Picnic on the university campus:

Saturday, February 13, 2010

Holiday Gift Drive for the Alta Bates Summit Medical Center NICU 2010

In 2008, we spent the holidays at the Alta Bates NICU with our beautiful boy Loki Sky. We were surrounded by the love of our family, friends and wonderful primary nurses. Regardless, those days were beyond challenging.

In 2009, we were able to handout 56 gift bags, approximately $1200 in gift cards for those in economically difficult circumstances, and 5 massage certificates at the Alta Bates NICU. We were only able to this with an incredible number of very generous donations from many people. We celebrated the Holidays as we had never done before.

We are still inspired!! In 2010 we want to do it again. Our goal is to collect enough money to buy a gift for each baby at the Alta Bates NICU. We still have time, but one can never start too early. We need your help!

If you wish to support a family in the NICU during the holidays in 2010, you can donate via Paypal. Note that you do not need a Paypal account, only a credit card:

Or, please send a check to K. Sprenger, 405 Eastview Dr., Bedford, IN 47421. In the memo please write Loki Sky Holiday Gift Drive and Fund.

We honor and thank everyone who contributes. Please let us if you do not wish to be publicly acknowledged.

Thursday, February 4, 2010

One year, in another way

Tomorrow (Thursday the 4th) is one year after Loki's due date. In other words, his adjusted age is one year. The good news includes that, due to our new feeding system, his weight has shot up to 20 pounds (9 kg)! That is the tenth percentile at one year for normal, full term babies; he is surely at a higher percentile when compared to other micropremies. This is quite the accomplishment, given the circumstances!

Our new feeding regime continues. It is a lot of work: from 7 AM until midnight, we feed him over an hour, wait 30 minutes, give him water over an hour or an hour and a half, wait 15-30 minutes, and start the next feeding again. Thus we are almost always doing something. If it goes right, we do little overnight. But two things typically go wrong. First, he still throws up quite a bit, generally a big one once per day. It is very sad to see Loki go through the discomfort. And given how much we work getting the food and water into him, this feels like a kick to our gut; it is very frustrating. When this happens, we compensate with more food and water overnight. Second, he is often extremely fussy at night, screaming and flailing his arms while asleep. We know nothing is physically wrong, because if we fully wake him he is fine.

However, overall, both of these negative aspects are very gradually lessening, and the general trend is in the right direction.

The new Mic-Key button is an improvement. The tube doesn't slip out of the button accidentally, and it comes out easily when you want. However, the button itself can pop out of Loki's tummy. This already happened, and Mom was quickly able to put it back in. Also, the button sticks out a bit "tall" from his tummy, and thus can irritate his skin as he rolls around at night, pushing it against his body at an angle. Fluid can even leak around the button (eeeewww...). We are working on a system of gauze and girdles for now. We ordered some Button Buddies and Mic-Key-master Cheryl recommended Lyofoam, which we will look into getting.

We have only been using the pump to give him water when he's asleep. But lately, this seems to really bother him. I can't explain why a slow, steady stream of water would be more irritating than a series of bursts delivered by syringe, but this seems to be the case.

Loki has recently taken a big step backwards in language and cognitive development. He seems to have lost many of his signs, and his ability to respond to quite some requests. Mom is now working extra hard on these developmental milestones. The developmental psychologist at the feeding clinic said that there is anecdotal, but not quantitative, evidence that this can result from anesthesia. Loki's loss of abilities did approximately coincide with his last surgery.

Given this feeding system, and the difficulty while doing it out, we go out a bit less. Recently, though, Loki, Rebecca, Mom, and Nurse Margaret went to the California Academy of Sciences, a science museum, in San Francisco. And Loki, Rebecca, Mom, and I went to the petting farm in Tilden Park in Berkeley. Photos below.

I forgot to mention in my previous post that Loki did not need to be intubated during his last surgery, and he did not need supplemental oxygen after it, as his blood oxygen saturation level was high. These are signs that Loki's lungs have strengthened.

Loki shows Margaret that the fish wants a bite of his pacifier:

Baby, Mom, Gorilla:

With Dad among the goats and eucalyptus:

With Dad again:

Not so sure:

About this, he is sure:


Loki likes lights. The first one that he can turn on and off himself is, unfortunately, inside the refrigerator:

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.