Sunday, December 26, 2010

Happy Holidays to all...

Dear family and friends,

When we examine our lives as years, the last two have been remarkable for us. We spent Christmas 2008 in the Alta Bates NICU, looking forward to our tiny Loki coming home but not aware that kidney failure and feeding tubes were just around the corner. It was wonderful to spend the following Christmas at home with Loki. However, he needed much special care at that time, and we were exhausted.

Since then, Loki’s health has generally improved as the amount of care needed has decreased. His only surgery this year was to give him a new feeding tube, and when he was twice hospitalized for illness, each time was only for a couple days. Loki has also taken significant developmental steps. He is now a happy toddler, running, talking, playing more intricately, and especially laughing a lot. Despite the fact that we are not quite leading “normal parent” lives, we feel that we are inching towards some sort of normalcy.

Also this year, after talking about it for so long, we finally made the move to the Netherlands. This is obviously a big change in many ways. For example, we live in a small village outside of a medium-sized city instead of a major metropolitan area. Of course, this has been a large undertaking, consuming what little free time we had carved for ourselves. But it was clearly the right step, and it is wonderful living close to family.

As we are settling into our new lives in the Netherlands and as Loki’s care is getting easier, we very much look forward to a peaceful and calm 2011.

We thank you for your continued support and hope the upcoming year will bring you love and happiness.

With love and holiday greetings,

Loki
Mom
Dad

Friday, December 24, 2010

Report back from Team CA

It happened..... yesterday on Thursday December 23rd Team CA; Mascha and Amy, dropped by the Alta Bates Summit Medical Center NICU and handed out the books and gift cards we collected through the Loki Sky and his NICU Friends' Holiday Fund. In the mean while we, dad, Loki and myself, were celebrating Christmas a day early with our family in Indiana. Despite the Christmas cheer and children running around playing with their new toys, I couldn't help but have my mind drift off, now and then, to the NICU and the exciting event happening at the same time. Needless to say, I was eagerly awaiting report from Mascha and Amy.

As expected, they received many positive responses. Both families and nurses expressed their gratitude and several nurses mentioned last year's drive. Both Mascha and Amy expressed their excitement in being part of the drop off. As I remember from last year, it feels quite amazing to handout gifts and gift cards, knowing that it positively impacts a family going through a rough time.

The drive came and went, and my mind is already moving towards next year. We made it happen once, we made it happen twice, we will make it happen again.... my dream for the new year? Turning the Loki Sky and his NICU Friends' Holiday fund into a non-profit. Oh, think of all the possibilities this would add.....

Christmas 2008:



Christmas 2009:



Christmas 2010:



The girls before drop off, 2010



64 books and cards neatly wrapped by Mascha and ready to go....

Saturday, December 18, 2010

Funds closed.... but it will continue

Dear family, friends, friends of family, family of friends and perhaps even strangers,

We did it, we reached our goal of $1600 on the closing day of the Loki Sky and his NICU Friends' Holiday Fund. In fact, we almost doubled our initial goal with the $3000 we received from you. I don't think it will be easy to convey in a written message how incredibly grateful we are with the support we have received. Who would have dared to dream this?

With the money we were able to buy 64 $20 gift cards, 64 books, 14 $100 and 1 $50 gift card. Every family spending the Holidays at the Alta Bates Summit Medical Center NICU this year, will receive a gift card and a book accompanied by a letter from Loki and his Friends. Our California team, Mascha and Amy, will be handing out the gifts next week, many thanks to them for taking this on.

The larger gift cards will be handed out by the social workers at the NICU to families who are in need of extra financial support in order to buy a car seat, stroller, crib or other necessities to take care of their baby once they are home.

For those who intended to donate but have not yet had the chance to do so, please don't worry, we will continue to send the money towards the NICU to ensure families who need it most will receive the extra support.

For now I just want to say I am extremely pleased with the outcome and am looking forward to seeing and sharing pictures from our CA team this week! It would not have been possible without the 47 families and/or individuals deciding to donate, it would not have been possible with you! THANK YOU!

Loki Sky and his NICU Friends

Michael and Wagner, 25 weeksAnna, 31 weeks
Bennett, 31 weeksLoki Sky, 24 weeks
Foxen, 30 weeksGabriella and Alexandra, 24 and 25 weeks

Friday, December 10, 2010

And then some.....

As some of you know we recently spent three days in the hospital with a sick boy. Nothing compared to the18 weeks after birth. Still, three days filled with worries, very little sleep and a very sad and miserable boy.

It made me realize even more how happy I am that, despite our transatlantic move and all the hectic it brings along, the Loki Sky and his NICU Friends’ Holiday Fund is happening again.

And how…

  • Thus far 32 families have donated and another 8 promised to do so!
  • Thus far we collected $1678, $78 over target which means extra money goes to families who have more intense financial needs!
  • Thus far Loki has eight NICU friends actively participating in raising funds one way or another!
  • Thus far 64 books have been bought and wrapped!
To those who are helping us make it happen THANK YOU from the bottom of our hearts. You are touching lives of families struggling with their babies’ health. To those who sent us their best wishes THANK YOU for your encouraging words. And for those still planning on donating, we are looking forward to your contribution!

Just as a reminder, the closing date is December 18th. However, we would like to encourage those who are still interested in donating to do so before this date, for planning purposes, e.g. whose names to write in the “People who made this possible” column!

To find out how to donate please go to: http://babylokisky.blogspot.com/search?q=Holiday+Gift+Drive

With warmth and gratitude,

The families of Loki Sky and his friends

Wednesday, December 8, 2010

Home!

After a bit more than 48 hours, Loki was released from the hospital. His fever greatly decreased today, and he was able to keep in about a half-day's worth of food. He was very happy to be home, as were we. We'll try to write a longer update soon.

Thanks for all your support during this latest challenge.

Tuesday, December 7, 2010

Hospital, again

I wanted to post a video this week but Loki had other plans. He got a fever on Sunday, which continued. By Monday he was not really keeping food in. A doctor visit led to the hospital which led to one night here, and now another. His fever has been above 38.5, to 39.2C (101 to 102F). He is generally able to hold down water, and the doctors are not concerned about dehydration or kidney stress, based on a positive urine test. But he will need to stay until he can process food and his temperature lowers.

Of course, he is always a trickster. I planned on going to Amsterdam for work this week but that is now uncertain. And we all have plane tickets to Indiana for Monday.

We will update as we can.

Update: fever up to 40.2 C or 104.4 F.

Tuesday, November 16, 2010

October and November photos

We've written little for two reasons. The good cause is that Loki generally has been doing well, and there is not much to report. Since moving, his development has really moved forward. He's a little boy now, running, talking with a vocabulary of over 270 words, sometimes even making 3 word sentences, being demanding, laughing, playing games, etc. This was very noticeable when we (finally) got our possessions from the US. These has been packed 10 weeks earlier, but he had clearly outgrown many of the toys.

The less good cause is that we are very busy with him, school, settling in, etc.

Among other things in these photos is Loki's second birthday. We kept the celebration small, as we were (and are) occupied with adjusting and settling. Although there are plenty of daily frustrations (both typical and "special"), Loki's birthday highlights that his health, growth, and happiness are blessings.

I will try to get some video together soon, and one of us will write about the many assessments, doctors, and such things.

Reading a birthday card, upside down:


Mom and I got him a train set. He pushes the cars around and says "chuckah chuckah chuckah":


Oma and Muus help blow out the candles:


Apron on:


Mitt and hat; ready to cook:


Loki loves the kitchen set to which Nana, Papaw, Oma H, Opa F, Tante Marieke, and Oom Martin all contributed:


Before it was cold and grey, we used our bike trailer:


And biked to the old walled village of Kranenberg, Germany:


We also walked through the woods:


Scarf:


Eating:


Hat:


A typical evening:



Finally, here are a few from Kyra's B-day party that she sent over. With Muus:


With Lova:


Drumming:


Matching:

Thursday, November 4, 2010

Loki Sky and his NICU Friends' Holiday Gift Fund

In October 2008 Loki Sky was born at 24 weeks gestation, weighing only 1 lb 5 oz (610 grams). Loki and his family “celebrated” the Holidays in the hospital. After three surgeries and four months in the hospital, Loki came home. Grateful for what the NICU meant to them, the family wanted to give something back. Remembering the warm notes from strangers and knit hats for Loki during the Holidays season, a Holiday gift drive was their means of sharing their gratitude. In 2009, Loki’s family and friends collected over $1500 in gift cards and many gifts, given as generous gift bags for each of the babies then in the Alta Bates NICU in Berkeley, California.

A small gesture truly can help a family through an incredibly difficult time.… We know!

A note From Loki’s family:

Dear Family and Friends,

Not only did you support us through two challenging years, you also helped us make the gift drive a huge success in 2009. Although two years seem a long time ago, it feels like yesterday to us that we spent the majority of our time bedside with Loki in the NICU. We will be forever grateful for the amazing support and medical care Loki received. This is our way to turn a challenging experience into a positive one. Can you help us honor Loki’s strength and his fight to survive his extreme premature birth by sending an uplifting gesture to a NICU family?

How you can help:

For this year’s drive we are collecting financial donations in order to purchase gift certificates from Babies R’ Us. With this card the family can buy the necessities to prepare for their baby’s homecoming. In addition, we will buy a small story book for each parent to enjoy with their baby. Anything helps, so please don’t be shy if a dollar is what you can spare. We are happy and grateful with any donation!

From the Internet:

Click this button and use a credit card or Paypal account to send money:




From the US:

Please mail checks in name of: Kathalijn Sprenger, 405 Eastview Drive, Bedford, IN 47421. Be sure to note "Loki and Friends" in the memo.

From the Netherlands:

Maak geld over op rekening nummer 61 57 69 152 t.n.v. K.C. Sprenger.

With immense gratitude,

Loki Sky, Foxen, Anna, and more of their friends

Sunday, October 17, 2010

2 years old

Today, two years ago, was a Friday. We spent it at Alta Bates Hospital knowing that soon or sooner we would become parents of a preemie boy. The cramps which I had taken for contractions were, according to the nurses just "uteran irritabilties." Sure enough, the next day, which obviously was a Saturday as Satrudays tend to follow Fridays, our little guy needed to come out... ASAP.

Rushed in to the operating room (you all know the story by now) Loki Sky was born at 24 weeks and 3 days (or perhaps a little earlier even), only 60% through a typical pregancy. He showed no respiratory effort, he was quiet, and I could not see him. Amy Winehouse's "You Know I'm No Good" was playing on the iPod of the anesthesiologist. The room felt cold and the lights in the room looked cold. Everything I never imagined the birth of our beautiful son to be like... yet now making perfect sense in our birth-story, at this point in time.

And here we are, two years later, on the eve of Loki's second birthday. Loki has taken us along some scary paths on his journey into and through this world, and continues to surprise us now and then. But I guess that is what we asked for when we named him Loki, after the Norse deity of mischief. Of course, these moments around his birthday call for some pondering and reflecting on our road into parenthood. It is almost needless to say how proud and delighted we are with our boy and all that he is. But I want to say it anyway, again and again and again. I do not ever want to take for granted that our little 610 gram miracle survived his early birth, including all the scary preemie "bumps in the road," renal failure, and six surgeries. I want to celebrate his path, his life, and the inspiring human being that he is.

We all know Loki wouldn't be here if it were not for the amazing medical care provided by many skilled nurses and doctors. Even more so, I believe that he wouldn't be here if it wasn't for himself: Mr. Loki Sky, two year old rascal shaking up our worlds, since 19 weeks into my pregnancy. Strong, determined, smart, happy and powerful little man: we wish you a wonderful second birthday. We are so grateful you are here to celebrate life with us. We are so grateful that it is you who choose us to be his parents.

Then:


Today, with his new car sent by Bo:

September photos + video

Walking near our home:


Helping Dad with Dutch:


Flowers for Mama:


The two girls across the street from Oma's house absolutely love Loki. They often stop by and ask if he is available to play:


At Kyra and Erwin's farm, during the former's birthday party on their bamboo farm:


While there, he played with their son, Muus, who wore his wooden shoes and pajamas that matched Loki's (including the Jip and Janneke characters on the front):

Loki's wooden shoes:


With Patrick and Lea, who visited from California:


Loki took quite a liking to Lea:


We've not posted a video in a couple months. This one includes clips from the last 8 weeks or so, and is in roughly chronological order. In a couple places, we try to get Loki to sing along, which he often does much better than here on camera. He shows off his wooden shoes. He dances to Manu Chao. He plays with the daughter of Mom's close friend (his "cousin"). I apologize that one clip is 90 degrees off. I've still not figured out how to do that right.

Monday, October 4, 2010

The walking, the talking, goodbye and hello.....

I started writing this blog post in July in our apartment in Oakland. I continued writing early September in the guestroom at Omi and Opi 's, and I finish it in October, from the couch in our own living room in Berg en Dal.

Our lives have been filled with excitement, hectic goodbyes and hellos for over three months now. We shared wonderful moments with friends in the Bay Area and had tons of support when we really needed it. We are now spending great time with family and a few friends, while have received an amazing amount of support painting our new home. A big "Thank You" to Opa and Oma, Marieke, and Martin for helping us make this house our own. And a big "Thank You" to Opi and Omi for helping out with the little guy and organizing utilities, getting us (re)acquainted with the structure of this country, and chauffeuring us around.

Meanwhile, Loki moves through his days as always. He plays with friends; he loves the "meisjes" [girls] from across the street who, with their 6 and 8 years of life experience, are incredibly interesting to him. Loki was nearly cuddled, squeezed and kissed to death by Muus and Lova [Kyra's kids] on our second birthday party in as many weeks, a few weeks ago.

During our last months in the US we had the pleasure of saying goodbye to all Loki's specialists while receiving the last US treatments and tests. A quick summary for those who are eager to know:

  • Gastroenterologist Doctor Rhee just got back from her own maternity leave, and we were very excited to be able to say goodbye and thank her for all her help. She put Loki on a low dosage of erythromycin hoings that this would help him with the motility of the GI tract. [This makes the fourth current prescription drug.] Although the gastric emptying study in spring did not show any issues, she agreed that the amount of fluid they gave him during the test may not have been enough to observe the issue. No huge change thus far, but Loki's new doctor here in the Netherlands thought the erythromycin dose was a bit low.
  • Urologist Doctor Baskin was incredibly happy with Loki's kidney ultrasound. Despite some mild renal calcinosis.
  • Nephrologist Doctor Lo was concerned about the ongoing proteinuria. Despite his low-protein diet, Loki's kidney continues to leak protein. Although the protein / creatinine ratio has been below 0.5, which is the baseline the doctor is willing to accept without intervention, it has swung up and down quite a bit. The last test came back 2.8, which it has not been since last July 2009. Her suggestion is a urine test every two months to monitor the leakage. If the ratio continues to be above 0.5 she would typically start ACE inhibitors. This is one of the main issues the doctors here in the Netherlands will monitor as well. On the other hand, the blood urea nitrogen [BUN] has gone down with the increased water intake (1.5 liter per day instead of the normal 1 liter). Time will tell as to why the kidney leaks protein and whether this will cause bigger issues in the future.
  • Ophthalmologist Doctor William Good was happy with Loki's eyes but did notice nearsightedness of -1.25 in both eyes. His suggestion was to see a specialist in a year.
  • The feeding clinic team at California Pacific Medical Center has been very pleased with Loki's progress in oral motor skills and decrease in oral aversions. However, his lack of weight gain has been a little bit surprising to them, as it also has been to Dr. Rhee and to our new pediatrician here in the Netherlands. Loki's oral motor skills are not mature for his age, but compared to other children with similar issues. In fact, he had made a huge amount of progress. Ongoing services ares still warranted.
  • The Infant Follow-up Clinic assessment came back quite good. However, I feel that the psychologist rushed Loki through some test items which he then failed, and that she assigned him some skills that are beyond his knowledge. According to the Bayley Scales of Infant Development, at 18 months adjusted age, Loki's receptive language skills function at 29 months, whereas his cognition showed skills at 20 months. (He did not cooperate for most of the tasks). That big of a difference between those domains at this age is unlikely. I think the truth lies somewhere in between. Loki's gross motor skills scored 19 months and both his fine motor skills and expressive language showed skills at 23 months. However, the speech evaluation (REEL-3) showed expressive language skills at 19 months and receptive language at 18 months: rather different numbers. We are simply quite impressed with Loki's development, and regardless of some scattered skills and minor delays, he is doing remarkably well.

Here in the Netherlands, we have had two appointments with Loki's "child doctor" (more specialized than a pediatrician, yet less than the specialists). Dr. Draaisma took his time listening to us when we shared Loki's history and he seemed to take it very seriously. His overall judgement was that most medicine dosages were too low. Thus, he wants to increase and see if the [everlasting] vomiting disappears. Loki will be referred to the Sint Maartenskliniek ("Saint Martin's Clinic"), a rehab center for kids with day care, preschool, and supposedly amazing feeding clinic that happens to be very close to our new residence. Unfortunately Dr. Draaisma does not think Loki is ready to be around too many kids (i.e. germs), and thus this transition to there won't happen until late winter or early spring.

Loki unfortunately lost almost a kilo over the past 3 months, so we had to go back up to his full 1000 calorie intake per day by feeding tube. We are not sure whether he eats less by mouth than we think, or if the increased reflux causes uncontrolled loss of calories. However, when Loki is surrounded by other kids eating, he eats significantly better. For example, a week ago we had a family gathering where "monkey see, monkey do" was quite apparent. His cousins were eating and so was he: yogurt, soup, sausage, olives, all the yummy foods.

Of course, we did quickly pick up a cold, and unfortunately have all felt rather exhausted and icky. Loki battled it well with some extra medication, but has had an ongoing low grade fever for three weeks now. We have faith that, slowly but surely, he will get better in overcoming the simple viruses without having to work so hard, but we are grateful he is doing as well as he is at the moment.

Loki soaks in his new life and despite being a bit clingier and showing some expected regression in his development. (We're back to turning on and off lamps all day long.) He is showing ones again to be a flexible and sweet little guy.

Although most strangers would not understand what Loki is trying to say, he has a huge list of words/labels he consistently assigns to people/objects/actions. Here are some consistently used labels (mostly Dutch but some English): ball, bell, baby, beer (that's Dutch for bear, not the drink), uil, giraffe, buik, nek, neus, lopen, varen, vliegen. vliegtuig, bus, fiets, hoog, fietsen, bus, vrachtwagen, bank, eten, apple, appelboter, pesto, avocado, aardbei, cracker, cookie, melk, fles, mes, fork, speen, cup, stoel, zit, slapen, kijken, blanket, wagen, car/auto, kralen, krijtje, rijden, emmer, doggy, kitty cat, turtle, fish, wash, sun, maan, star, varken, koe, duckie, Elmo, Nijntje, sock, shoe/schoen, stoplicht, stoppen, gaan, deur, lamp, fan, draaien, kaars, kaas, spuit, water, splash, nat, burp, luier, plassen, poep, douche, telephone, werken, laptop, nee, mama, daddy, ja, open, dicht, ringen, cowboy, number, oh no, aan, uit, in, wc, knikker, glasses, bath, bubble, schaap, froggie, muis, meer, klaar, oren, ogen, mond, boos, night night, comb, boom, flower, sunny, warm, etc.

Loki imitates the last word of a sentence and finishes sentences in about six songs, and answers questions such as "when it rains outside it is..... (wet)."

My personal favorite is when Loki discovered part of the couch felt warm he said "warm." When I asked him why the couch was warm he looked at it, saw the sunlight reflected on, looked outside, pointed at the sun, and said "sun."

We miss our old life in the Bay Area, yet are excited about our new life here in the Netherlands. We are looking forward to settling into our new home more when our freight arrives in a month or so.

Monday, September 6, 2010

August photos: From California to the Netherlands

We were quite busy in August. We moved to the Netherlands. We'll have a health / development / etc. write up later, and maybe a video. For now, photos.

At the Dutch consulate in San Francisco, becoming officially Dutch:


Paint:


Misty, Nicole, Allison, and Peggy from the Alta Bates NICU took Mom out for a great lunch, as a goodbye gift for her volunteer work:


While there, they unexpectedly ran into two of Loki's doctors from the AB NICU, Dr. Dudell (L), and Dr. Uzowicz (R) as well as the latter's niece. They offered to take Loki on a walk so Mom could have an easy lunch:


Loki tried chocolate there:


Before we left, Loki visited friends. OT Heather:


His favorite sitter, Bo:


Fin:

Eric and Oscar:


Graciela:


Dr. Abbott, his pediatrician:


Professor Bear, a gift from my advisor for my Master's research:


And of course Margaret. Mom and Loki stayed at her place for a couple days while I wrapped things up. They went to the Discovery Museum in Sausalito, Marin County:


Loki had lots of fun there:


Goodbye Golden Gate Bridge:


Off to the Netherlands! At his (soon to be) new house:


In the back garden of Oma Heleen and Opa Frits, where we are staying for a couple weeks:


Gardening:


Dinner just down the road at Tante Marieke's, Mom's sister:


Loki was not so sure about chocolate ice cream:


Taking a break from painting and cleaning the new place:

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.

Subscribe via email

Enter your email address:

Delivered by FeedBurner

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.