Friday, April 30, 2010

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):



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.

Thursday, April 29, 2010


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:

Sunday, April 11, 2010

March photos and video

Trouble ahead:


With friend and fellow former preemie Finn:

At home with Margaret:




With friend and super case manager, Brooke:


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.

Saturday, April 10, 2010

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.

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.