Indiana photos

Here are many photos from Indiana. As I said, Loki met lots of relatives. We tried to get photos of him with all of them, but still missed quite a few (including my mother and brother!). So, you have our apologies if you are not here!

Videos will come soon.

Loki (photo by Ashlyn):

Happy:

Cool:

Dandelions in the yard:

Getting in the car that Mom and Dad pushed:

On the car that he drove himself (with a single button):

In the yard with Mom:

Cousin Taylor:

Cousin Alexander:

Cousin Ashlyn:

Cuddles with cousin Ashlyn:

Walking with my brother's girlfriend, Alice:

Papaw Mark, my step-father:

Cousin Chloe:

Tubbing with cousin Chloe:

With great-great-aunt Linda:

Great-great-aunt Nancy:

Grandpa Ronnie, my father:

My step-mother has been fighting cancer for a few years and is now at home on hospice care. Grandma Lanette:

Hugging Grandma Lanette:

Lanette's daughter Leah really knew how to charm Loki:

By this time, Loki was too squirmy to sit on anyone's lap. But here is with his great-grandmother Helen:

Great-uncle Clay:

Great-aunt Rita:

This photo was captioned "Big Preemie & Little Preemie" by my friend Marcey. Her son Sam was born at 32 weeks, and weighed about 3 lbs 7 oz. He also had feeding difficulties for years, throwing up a lot. He also had a speech delay. Now he is 14 years old, just fine, and gives people like me much optimism.

Indiana

Mom, Loki, and I just returned from a week in Indiana, where I was raised. It was great seeing my family. Mom hadn't visited in over two years, and I did so only briefly last fall while my grandmother was ill. It was particularly nice for Loki to meet so many relatives, around whom he seemed to be instinctually relaxed.

Of course, this was Loki's first flight. The traveling went better than expected. We even had an extra empty seat on the flight back. But our time there was surprisingly tiring, as Loki did not sleep well.

Unfortunately, the health of my step-mother, who has been fighting cancer for several years, took a turn for the worse. We visited her at home several times, and Loki's presence cheered her up.

Also, while we were there, Loki had his 1 + 1/2 year birthday.

In the department of small things making big differences: We must give Loki a shot of food or water about every 10 to 15 minutes from 7 AM to midnight. We often forget for a few extra minutes, which can quickly add up over the course of a day. I began to ask around for an automatic adjustable pocket timer: press a single button, and X minutes later, you are reminded. Sure enough, Marcey (my friend from way-back-when) gave us her GymBoss, which does exactly this. It has made a surprising difference. Thanks!

We will have a large photo and video album soon. But for now, look what my mother (a/k/a Nana) dug up. This is me around age 15 months. Does this look like anyone else?

I even had the curls:

March photos and video

Trouble ahead:

Yes:

With friend and fellow former preemie Finn:

At home with Margaret:

Suspended:

Elevated:

Seated:

With friend and super case manager, Brooke:

Blondie:

In this video, Loki dances to the alphabet song. He knows when it is about to end, and then makes his cat sound. Dad plays with Loki. And then Loki plays in the bathtub.

Milestones and struggles

This is a quote I ran into when I was looking for an old phone number for one of my friends whose daughter used to be my client. This child was born prematurely as well.

Can we emphasize more how she is losing skills that she had before? Like numbers, colors, shapes, songs. It seems she gets them in one session, and when I train with her every day, she 'knows' them, but if I stop doing that - like during vacation - she doesn't remember anything.

I mentioned in one of my previous posts that Loki "loses" skills often as rapidly as he masters them. This makes for a colorful pattern in development, not uncommon in preemies and often described as scattered skills. An example of what I mean: Loki's developmental age levels range from approximately 7 to 20+ months. He shows delays in gross motor (e.g. walking) and expressive language (e.g. talking) development, but is quite ahead in receptive language (e.g. listening) skills. Even his developmental pediatrician was very impressed with his understanding of both Dutch and English.

Being a parent of a preemie comes with many wonderful and challenging tasks. We are able to see the miracle of where Loki came from and where he is going. Our tiny 1 lbs 5 oz beautiful alien (and I mean this in the most positive sense) is now a handsome, chubby enthusiastic toddler. I very much appreciate it when people have faith that Loki will "be fine." I personally believe he will be much better than fine. Loki is a strong, determined and smart boy. And.... he was born at 24 weeks, has undergone a series of very traumatic events, and will need extra help developing to his full potential. Not only does he have to somehow "catch up" for the 4 months he was born early (I do not like the term catch up but this is what is used and for lack of better I will use it as well) , he has to process and somehow overcome all the scary and painful moments he already encountered in his life. It is not strange that this boy will show some odd and interesting developmental patterns. I have had plenty of conversations with parents of preemies about this specific matter. Seeing it unfold on a daily basis with my own child makes it even more interesting, but nevertheless also challenging.

I like to refer to this "sudden loss of skills" as the "fragility of preemie development." Most people are born full term without any major long lasting issues. Our nervous system is developed such that we learn quickly how to organize stimuli from both the outside as well as the internal world, assuming that parents provide compassionate guidance. For example, think about proprioceptive (body awareness in space), tactile (sense through touch), auditory (through listening/hearing), visual (through looking/seeing), vestibular (movement of our body), and olfactory (smelling) inputs. Most people are born with the ability to learn how to regulate these different stimuli and are able to do so with help from our parents/caretakers. They hold us to calm us down when upset or gently pet our booty (proprioceptive), they rock us (vestibular), sing or hush (auditory), and darken the room (visual) when we need to fall asleep. As we grow, we learn how to calm down our system and how to organize our senses, which also helps us organize the world around us. This is a fundamental aspect of our development, as an organized nervous system is needed to help us focus on mastering new milestones and learning new skills, day in day out.

I mean no disrespect towards children and adults with developmental challenges of a variety of diagnoses, but for obvious reasons I will focus primarily on the issues of regulation of the senses and developmental issues based in issues of prematurity and extensive hospital stay, and specifically how this relates to Loki's development.

When a baby is born prematurely, he is not ready to process the world. Among others, the nervous system is not ready for all the stimulation fired straight at it and in addition, some of the basic body functions are not yet ready for the outside world (e.g. eating). Add to that the fact that a (micro)preemie is not put on their parents' chest to feel, smell, and hear his familiar caretaker(s). This baby does not land into a warm place surrounded by family, where everybody tiptoes around and whispers (after the first hectic hours of being born, of course) to not wake up the baby.

On the contrary, a (micro)preemie is often born through c-section, rushed to a table surrounded by many people who are trying to keep this little person alive, with bright light, lots of noise, tubes being pushed into the lungs, needles stuck into the body, and lots of pain. This is just the beginning of a long, long road toward growing to be full term while almost constantly being hurt by needles, feeding tubes, and intubation. In addition, there is an overload of stimulation by sound, light, and touch for which his system is not yet ready. How does this child learn to regulate his senses? How does this child learn to process not only "normal" input such as voices, diaper changes, and light, but also regulate all this pain, shock, and fear?

I do believe that this is where wonderful nurses, doctors, and parents come in to play. When Loki was still at Alta Bates the nurses were generally very careful and gentle with him. Even when they had to put in another IV (sometimes this happened several times in one day), they prepared Loki by telling him what they were about to do. A blanket was kept over the incubator to keep it somewhat "dark." Despite ringing alarms, medical staff coming in and out and nurses and parents talking, effort was made to keep it relatively calm. I can attest to the fact that this is not the case in every NICU. I thoroughly believe that, thanks to the knowledge about compassionate care and child development within Alta Bates, Loki has an amazingly well developed regulatory system for such an early preemie. Of course, it helps that I am a stay-at-home mom and thus we are able to offer a consistent, calm, and predictable environment.

However--and this is what my rant is all about--it is impossible for a beginning like this, filled with illnesses, over-stimulation, uncountable medical procedures including six surgeries before the adjusted age of 12 months, to not have an impact on Loki's ability to learn and to retain information consistently. Add to this missed opportunities to play and learn due to frequent trips to and long hours of waiting in doctors' offices, as well as malnourishment due to severe reflux and frequent vomiting. Needless to say, Loki has a big task ahead in making up for missed time, "little" quirks in the nervous system, and the impact of several traumatic events. When anybody--but especially a young child--has to handle this many barriers, the acquisition of new skills and information retention can be a very challenging task.

A milestone as cutting a tooth, for example, is a big deal for a child, period; cutting a tooth for a preemie may impact the development even more. Not sleeping well can impact a child; not sleeping well for a preemie can impact the development even a bit more. Repetition of information to "program" and retain newly acquired skills is important for any child. (Think about wanting the same book over and over again) For a preemie? As you can imagine, this is even more so the case. A former preemie usually has to work extra hard in order to organize behavior and learning. Thus explaining some of the interesting, relatively large swings in skill acquirement.

When reading over the scientific literature, there is a lot being said about preemies' chances to survive and their prognoses. At 24 weeks, for example, viability rates range from 39%- 50%. This means there was almost an even chance Loki would not have left the NICU. A terrifying thought!

A common mistake is to think that preemies are just born a bit smaller, but once caught up in age and size they are just like any other child. Unfortunately this usually is not the case. There are a huge number of issues preemies are more likely to face throughout their lives than typical children. These days, researchers believe that, of all children born at 26 weeks or less, only 20% will have no long-term problems. This means there is an 80% chance Loki will have lasting developmental and/or behavioral challenges throughout life. Of this 80% with challenges, about 34% will have a mild disability, such as cognitive impairment or near-sightedness. Another 24% will have a moderate disability, such as visual/hearing impairment or Cerebral-palsy with the ability to walk. Finally, 22% will have a severe disability, such as cerebral palsy and no ability to walk, blindness or profound deafness. Add to this the increased likelihood of issues such as ADHD, ADD, behavioral problems, and depression during the teenage years. Just off of my head, I remember that approximately 70% of the preemies I worked with qualified for services in the school district or through insurance after the age of three. (This is an approximation, as I am simply trying to remember all the preemies I have worked with in the past 7 years.)

To give an example about long lasting effects, the girl I talked about earlier is 5 years old now. She is a beautiful, incredibly smart, and a very funny child. If you look at her, you wouldn't even think anything is different about her. Her mother is incredibly talented and dedicated to her development and overall well-being. She is going to kindergarten and the family had a very hard time finding the right place for her. The child is terrified of alarms, including school bells, and she panics when surrounded in a hallway by a group of peers. Specialists believe she may suffer from post traumatic stress disorder, a leftover from her preemie days as well as later hospitalizations. Without appropriate treatment she won't be able to function and gain skills and knowledge in an age-appropriate manner in a big classroom. A small classroom usually means private school, which is not possible for everyone due to financial means. Unfortunately, due to having heard too many alarms combined with the pain and trauma of endless medical procedures when her system was not ready to regulate the input, she now at the age of 5 faces challenges with school placement.

I know Loki will be "fine." Obviously, he has no major disabilities. Thank goodness for that. However, among former preemies, minor learning disabilities are often not identified and diagnosed until a child is actually enrolled in kindergarten or elementary school. So if people ask me, "How is Loki doing?" I think he is doing wonderfully well, I remember all too well where he came from. Concurrently, I am very aware of the fact that some of his seemingly minor symptoms can be indicators of difficulties later on. I believe it won't be anything we cannot overcome or address but I do think it is important to understand this when we are worried about his development. For some of you, these bumps may just look like normal developmental plateaus. Our worries are grounded in a reality we usually forget about because it makes no sense to dwell on it. Just for once, though, I want to share this information so people understand from where we are coming. Please understand why we are putting this extra bit of energy in encouraging Loki to communicate, even though we do understand what he means when he points and cries. The first three years of our lives our brain grows more rapidly than at any point after that.

A newborn's brain is about 25 percent of its approximate adult weight. But by age 3, it has grown dramatically by producing billions of cells and hundreds of trillions of connections, or synapses, between these cells. We also know there are many things parents and caregivers can do to help children get off to a good start and establish healthy patterns for life-long learning." (from Zero to Three web-site).

Early intervention services have shown to make a huge difference in outcome for children with struggles early on in live. I know all too well that the extra effort now can make a huge difference later on.

We want to keep it fun and relaxing for Loki, yet we also want him to grow to his full potential. Which parent would not want that for their child?

I could go on and on, much more I would like to share but I will save that for a later date. Thank you for reading.

Trip to coast near Monterey

We went on a short trip to Pacific Grove near Monterey in California. It was a mixed bag of fun and exhaustion for Loki and me. For dad it was hard (net)working on his 4.5 day conference on geoengenering. He barely got to see the beautiful sand dunes, beaches and, of course, the famous aquarium in Monterey. Although Loki and I had fun, it was not all easy breezy. First, Loki is not cutting one but three teeth at once, and he developed a cold the evening we arrived at the conference grounds. He had horrible nights with very, very little sleep (I walked around with him approximately every hour for the first two nights) and the other nights were not much better. Because Dad was not feeling all too well either and was at sessions and often working as a rapporteur almost 13 hours a day (with tight meal breaks), we agreed he needed to sleep as much as possible, so I took over his night shift for a few nights. That combined with seeing each other only during breakfast, lunch, dinner made for an odd "vacation."

Regardless, Loki and I had fun. He was even charmed by the new pediatrician's office we visited in Monterey per advise of our own doctor's office (yes he had fluid behind his ears but "not yet" an ear infection). Loki liked the ocean, but not so much the feeling of sand on his toes. He loved the big fish in the aquarium, but not so much the ladies room (he starts crying every time we walk into a public restroom with more than one stall....). Loki loved watching all the people in the dining hall, but not so much seeing the flag pole without flags.

The food was amazing and it was great to get to meet some interesting people during our big group meals. One of my favorites? Paul Crutzen, Dutch Nobel prize winner and atmospheric chemist best known for his research on ozone depletion, and a researcher from South Africa, who was one of few who dared to join us at our table with baby!

Lunch with Dad:



One of many walks:



Playing on the blanket is fun:



Big blue eyes:



Dangerous tricks on the boardwalks:

First tooth

Finally, finally, finally...... Loki's first tooth is cutting through as we speak. It was a long wait, considering that having teeth will help Loki significantly with the foods he likes, but make him gag because he can't chew them.

We were visiting friend Jeremy and his mama Lena. They generously shared some tasty cream cheese with Loki, which I fed him with a finger. While scraping the cheese off with his gum I kept feeling a sharpness that I had not felt before. Sure enough, Mr. Loki Sky has his upper right tooth sticking out just a tiny bit. It looks as if it's neighbor on the left may be on it's way as well. Would this perhaps explain a few days of grumpiness and fussy nights? I think it may.

Once again Loki decided to follow the not so common path. Not only does the average child cut their first tooth between 6-9 months, most children get their bottom teeth first. That's what I have been keeping my eye on. Needless to say, Loki likes to surprise us even with the small steps! I guess we asked for it when we called him Loki!

On "Sky"; Rebecca gone; doctors; development (video, photos)

Early on we told of how we arrived at Loki's first name. But we never explained Sky. Mom and I are both into music, and among the music we like, nothing tops Phish. Many of you know first or second hand how experiential this is for us. Back when Mom was on bed rest, she was listening to her favorite Phish song, "The Divided Sky." It is a (mostly) instrumental, guitar driven, and soaring epic that is composed for the first eight minutes or so, and then opens up and builds from there. Here it is:



We had decided on the first name, but were stumped on the middle name. She shouts to me in the other room, "How about 'Sky'?" What I like about it is, like Magnolia, it is both a reference to music and nature without being excessive in either way.

Rebecca left a week ago Monday. We already miss her presence, company, and amazing assistance. She'll always have a special place in our household, and we look forward to seeing her again.

The swarm of doctors' visits continues. I joined Mom to take Loki to the urologist, Dr. Baskin, who did two of the three surgeries on Loki's kidney. After reviewing a kidney ultrasound, he said that it looked great. He agreed that we need to keep an eye on it, and that extra water is a good idea. But his attitude was more optimistic than that of Dr. Lo, although he also clearly stated that the Nephrologist is the Dr. to make any statements about the kidney.

Mom took Loki to the child development specialist. Dr. Daly, whom Mom knows through her many years in early intervention, was quite impressed with Loki. Here's Mom's report:

As we knew, Dr. Daly confirmed some minor delays in gross and fine motor development, in verbalizations (spoken words) as well as in adaptive skills (specifically eating). However, Loki's receptive language skills (understanding language), cognitive skills (thinking and problem solving) as well as expressive language through gestures (e.g. sign language) are coming along very well. She said "I do not think I have ever seen a baby his age, born this early, getting this far" into the test. Even since this visit two weeks ago, Loki has made some progress. When asked what the kitty says he answers "mauw" and his first word, in addition to "mama" (for both Daddy and Mama) is "baby" (he still needs some prompting). Loki has discovered walking behind his wagon and his "side to side" head motion has turned in to a meaningful shaking "no" when he does not want or like something. Finally, Loki has welcomed us to an early phase of the "the terrible twos." He throws little tantrums when he disagrees, throwing himself on the floor, making his body limb and screaming.

Although we are, of course, very proud and happy with how amazing our little guy is developing, it is not quite as natural of a process as with "typical" children. Loki needs active prompting and encouragement (almost) constantly in order to master new milestones. If we forget to reinforce and remind him of certain activities/words (e.g. who his birdie is) he quickly forgets. Typically children show plateaus in their development and have growth spurts. With Loki these plateaus are more intense and sometimes he shows significant regression to earlier stages (often, but not always, after a procedure). The encouragement and prompting are somewhat more "exaggerated" than one would expect with a "typically" developing child. This, in turn, is very typical for preemies in general, and micro-preemies in specific. The extra focus on developmental milestones is, as I've observed during many years of early intervention (and as demonstrated by research), what makes the difference in developmental outcome.

In other words, Loki is doing wonderfully well, yet his development does not unfold quite as natural from exploring the environment and observing life around him as in most children.

Other difficulties remain. Loki is generally less fussy overnight than before, but the rough nights still happen. He throws up at least once (often more) daily, but we are learning how to pace his food and water. Being in the car is now a strong trigger; it may be time to move to a forward-facing car seat. And his skin around his feeding button is often in bad condition. We must apply various cremes to it a few times per day.

Loki is now sleeping in the second bedroom. For now, Mom is sleeping overnight on the floor next to him in order to reassure him when he wakes. So far, so good.

Best of all, we took Loki on his first bike ride. We went on the bike road along the East Bay shore, from Emeryville up to the market at the Berkeley Marina, with views of the Golden Gate Bridge all along.

This video has a few clips:

1. He shows his action-on-command, "side to side" which has also turned in to a meaningful "no." He looks for his new baby, and sort of says the word (in the last few day his "baby" has gotten more clear and is being used at more appropriate moments). He then shows his symbol for eating (smacking lips).
2. He shares his cat's "mauw."
3. Walking with the wagon.
4. Loki often makes sweet moans as he falls asleep.
5. Some of the "bad" moans Loki makes, even while he is asleep.

Bathtub Loki:

Almost in the nose:

Fluff Head:

Mmmm, paint:

Weee:

Eating with Mom at the Seabreeze Cafe at the Berkeley Marina. They have the same nose:

Gonna take my bike out. We have the same expression:

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:

Swinging!

Off to the beach with Mom:

Strolling:

Picnic on the university campus:

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.

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:

Chillin':

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