Tonsillectomy and good stuff

As Loki is becoming older and slowly more of a typical child, writing blog posts to keep family and friends informed is more of a task. These days, writing is less of a way for us to process the craziness that used to mark our lives when Loki was just born and facing many health issues. However, since this blog is also our attempt to raise awareness about prematurity and tube feeding, support other parents, and creating a document for Loki to read when he is older,we still want to write an update now and then.

This week is a big week for Loki: his tonsils and adenoids will be removed on Friday. Generally this is not a  complicated surgery, although removing the tonsils can hurt quite a bit. After a winter of almost constant illnesses and losing weight (September=15 kg, March=13.8 kg), Loki's general doctor said he wanted the tonsils out, and we agreed. Loki's tonsils cover up much of the throat when they are healthy. When swollen, which was the case for about 5 months, the throat is almost completely closed off. The doctor suspects that simple cold viruses don't leave his body because the tonsils do not heal well, and then he gets chest colds, asthma and pneumonia. In addition, whereas Loki's oral aversion has improved over time,  swallowing has become worse since the tonsils have been swollen. The difficulty of swallowing is a huge challenge with these humongous tonsils: literally, food gets stuck and Loki gags because the passage is too small. At the same time, Loki is getting older, wants to be a big boy, and often refuses pureed food--understandably so. Thus, we have given him much more tube feeding, which is not without issues either, as Loki sometimes runs away  to avoid getting food shots. However, after a few healthy weeks, we do see improvement and weight gain again.

We know the immediate results of the surgery may be challenging, as Loki is very anxious about the procedure. When he first heard his doctor talk about the surgery he was completely obsessed with the news. For several weeks he told anyone and everyone what was going to happen. His behavior got much more difficult: he slept less and at daycare his anxiety level raised. Eventually, we promised to let him know in time when the surgery would be. It helped, he was able to let go off the topic, and for about two weeks now he is much more relaxed and happy again. But we have now told him that the surgery will be Friday. We bought some gifts, Nana sent a bag full of gifts, and we hope a sticker chart will encourage him to take sips of cold juice and lick popsicles to help with the pain and cleaning the throat. Our anticipation of potential improvement of his health and with oral food intake runs high.... Could this be a turning point?

Loki is still seen by his general doctor, Dr. Draaisma, every two to three months. We continue to be very happy with him: he is diligent, seems to be a step ahead of us, and Loki likes him. Loki's urine is still being analyzed every time we go, which is not fun because he is not yet toilet trained and requiers urine bags. Positively, the urine has come bag normal several times in a row, which means no protein leakage has been found. Also a sign of improvement? Blood work is done only twice a year now, due to several normal analyses. Loki's blood pressure was completely forgotten last time, which I guess is a sign of less worries on all of our parts. We will see Dr. Draaisma again the end of June, hoping for more normal, healthy boy messages.

This past week we saw the eye doctor, and also here the trend was improvement. Unless we notice Loki having difficulties with art work due to his cylinder, we will see the doctor a year from now. There is a chance he will have glasses once he has to read chalk boards in school because of nearsightedness, but this is pretty minor.

Our physical rehabilitation doctor has been pretty happy with Loki's improvement and sees him only twice a year. Loki is a little bit slow when it comes to his gross motor development, but he cannot quite be diagnosed with a delay. He does, however, receive individual and group physical therapy a few times a month just to ensure improvement. We do notice some steps, literally up the stairs for example, but also with his level of comfort with climbing and jumping. He actually can jump with two feet of the floor (which most kids can do between 22-30 months, as a reference), and with encouragement he walks up and down stairs. Loki is enjoying vestibular input more than he used to and just two days ago he actually road in a small carrousel all by himself. It's the small things that matter, right?

Not happening yet is toilet training. We are not pushing it, but regular encouragement and rewards are not interesting enough to create a pattern. We'll focus more on this after his surgery during a warm summer weekend when he can walk around in his "birthday suit" and run to the toilet every time a tinkle happens.

Less exciting has been his time at day care. He has had a very hard time feeling comfortable, part of which is caused by a small girl there who has an nasal feeding tube. Loki has been terrified since the tube came out of her nose when he was there. He talks about her often, and has been able to communicate with us he remembers his pH test a year ago, when the tube  did not go into his nose very well and caused pain. The poor girl is the sweetest little thing, but Loki looses sleep over seeing her on Wednesdays. Most mornings when he wakes up he asks if he goes to day care and whether she will be there. If it is one of those unfortunate days, he can cry from the moment he wakes up until after drop off time. Day care has been very supportive and understanding, but it seems Loki has projected all his anxieties and fears onto this little lady. When we pick him up, he always comments on how sweet the girl really is, only for the drama to start again the next morning at wake up time. His magical thinking has reached the level of begging for Wednesdays to not exist. Even his weekly calendar which we use to remind him of plans is being manipulated, Loki removes and hides the daycare picture when it is on Wednesday.

And after all of the above, I will take some time to brag about our ever-growing miracle child. Loki was tested in order to determine his intelligence so that the right class can be chosen when going to school. The results were rather impressive. Of course, by now we figured out our child is pretty smart. But as much as I am a clinical child development specialist, I am also Loki's proud mommy and knowing our child is "smart" is different from objectively "knowing" our child is intelligent. Where his performance IQ is developing average for his age (on the higher end nevertheless), his total IQ scores are well above average and his verbal IQ came out even higher. I have no problem sharing exact numbers with those who have a particular interest in these things, but somehow it feels a bit too public to post the numbers. Regardless, his cognition is generally in fine shape, although we do need to keep an eye on the gap between performance and verbal IQ, as this can cause some challenges along the way if the gap widens. Most likely, if you ask me, the gap will get smaller. During the first two years of his life he spent a lot of time in cars traveling to and from doctors offices. Instead of crawling around, building block towers, making puzzles and stacking rings, he sat in the car or on our laps reading books and singing songs. I believe with normalcy comes more "typical" development in Loki's case.

For now we are planning on the school at the rehab clinic, mainly because of the food and water tube shots he still needs. Also, a small class will most likely be beneficial simply for the transition to school. But both the psychologist and Loki's rehab doctor encourage us to look at regular schools. Their concern is that a special day class for sick kids will eventually move too slowly for Loki. Chances are that he either will get bored, which may cause behavioral difficulties, or he may not grow to his full potential. After the tonsillectomy, we will talk to Dr. Draaisma and figure out ways we could limit tube usage during the day, so Loki can move to a regular school by the time he turns 6 years old.

Last but not least, Loki is just being very cute, funny, and verbal. We hear more complete English sentences for example "keep doing that, Daddy" or "I am trying to do that." Dutch continues to develop well and he uses more common phrases which make us frequently laugh. He loves to brag about what he can do: "Weet je wat ik kan?" ("Do you know what I can do?") but then followed by something really silly like rolling his eyes or lifting up one foot. Most recently he made his first joke after watching a toilet training video. "You know what toilet training means, Mama? It is a toilet on a train." He also explained his Tante Marieke that "take-a-break" means that your tummy is full and you are allowed off the table to go play for a few minutes before finishing your food. Last but not least, he loves to answer to many questions or request by saying "Ja, natuurlijk, zal ik dat doen/wil ik dat..." which means "Yes,  of course I will do/want to..." And one of my recent favorites was, when asking how many kids would join us, he  solved his first math problem. I told him three kids were waiting for us. When he held up two fingers I said: Well, one more," he responded: "Oh, three. That is how old I am. Hey, and then I will be there too. Then we are with four kids."

Our amazing, wondrous boy! Please send him your healthy vibes and prayers for a speedy recovery after his tonsillectomy this Friday.

February, March, and April photos

Posing #1:

Posing #2:

Loki's first recognizable drawing. He said it was his face:

Band #1, with (step-)cousins:

Band #2, with Kyra's kids:

Loki goes solo:

Carnaval was in February. Loki was an elephant:

For the second year, we spent Easter weekend with the same crew in the same region. The four kids had lots of fun. Here, a friend reads to all four:

The Easter egg hunt begins

After the egg hunt:

Loki gets make-up at Easter:

He shows Tante Marieke how to perform acupuncture on a little bear:

Loki's sitter went on to other work, so she had to say goodbye:

Bedtime reading with Dad:

Bedtime reading with Mom:

An update on all things Loki

It has been a long time since we've written an update on how Loki is doing, and even longer since I wrote one such post. A couple weeks ago was the third anniversary of his due date, and although we noticed it, we didn't give it focused thought. On the second and first anniversary and especially the original due date, we were more aware that it "should" have been his birthday, but now much less so. A big part of the reason is that, in general, in terms of his health, Loki's trajectory continues to be one of overall (but not continuous) improvements. Often, he goes two steps forward and one step back.

Loki's eating seemed to have "plateaued" previously, and couldn't get better. However, recently it did suddenly improve, in that he now more frequently asks for food and eats a wider range of food. We still must sternly negotiate with him to finish meals, and there are many foods which he can't or won't swallow and that we thus must puree with the blender. With significant effort each day, we can get most or all of his calories in by mouth. We use tube feeding a few times per week, but not every day, to fill in missing calories. Of course, he still gets lots of water shots, but those are gradually becoming easier, and we are able to do more of them in a shorter period of time. We hear his reflux much less. In fact, Loki is about to reach his first full month without throwing up. And the last instances of throwing up were not even caused by normal reflux, but instead were due to an apparent negative interaction between one of this anti-reflux drugs (motillium) and an antibiotic.

(While I am on the topic, it was recently "Feeding Tube Awareness Week." If you are reading this blog, then you are probably already quite aware. But I encourage you to check out this website, especially this page, and to perhaps share a bit among your own friends and family.)

Unfortunately, Loki has not gained weight in a long time, hovering around 15 kg (33 lbs). We fattened him a bit during the summer, in case he became ill during the winter, and that's been the case. He's had several colds, a couple serious fevers, and (probably) pneumonia. (We've also been sick too). We had a two-night getaway (without Loki) canceled because he was sick. However, in another sign of his overall improvement, when we took Loki to the drop-in clinic at the hospital one Saturday night because he could not shake off the pneumonia, he was not asked to stay overnight, even though we expected that he would to stay. In fact, he went all of 2011 without a hospital overnight.

Of course, Loki regularly has doctor's visits and tests, most of which are monitoring his progress rather than treatment.

• The last visit when blood and urine were tested (particularly for blood urea nitrogen (BUN) and proteinuria), they came back within normal limits. Although these have gone up and down in the past, for the first time we now have had three good results in a row. 
• The eye doctor was successful as well. Loki's left eye functions 100% and his right eye at 75%, which is apparently normal for his age. There are no signs, as far as the doctor could tell right now, pointing in the direction of his history with ROP (retinopathy of prematurity). 
• Best news of all however, was Loki's blood pressure check in December. His doctor did a double take because he did not believe the test himself at first. Last time, in October, it was 128/80 with a smaller band and 108/70 with the larger band (he was somewhat in between sizes). We discussed the possibility of medicine then. This time, however, it came out at  98/60 with the larger band. 
• Loki has made very slow but steady progress in physical therapy. It seems that, with better shoes, he has felt more stable on his feet which has made it easier for him to begin to jump, walk up stairs, etc. These skills, in turn, seemed to have had a positive effect on his ability to integrate sensory input. It started with feeling more comfortable with vestibular input (i.e. motion, such as walking, stepping off steps, sliding etc.) and seems to have generalized to his oral tactile defensiveness (i.e., not liking certain food textures) and auditory sensitivity (i.e. not liking some sounds. All stimuli are processed a bit more smoothly which helps Loki run better, climb stairs, jump, gag less while eating challenging textures (e.g., apples, rice, bread crust, etc.). 
• The hip photos taken in fall came back normal. Although Loki has somewhat inverted feet (i.e., leaning on the inside of his soles), which causes his knees to touch, he seems to adjust. 

In terms of development, Loki's behavior continues to march forward. Dutch have words for both toddler (peuter) and for the next stage (kleuter, aged 3 to 6 years); it is clear that he's becoming more of a kleuter every day. He strikes me as a smart kid (but I am probably biased), with remarkable memory and ability for logic. He plays energetically while often rambling about some imaginative story. He now talks back with logic ("but Mama / Daddy / Marjolein always does that!") and tries to manipulate us with well-timed sweetness. In fact, it seems that Loki may have passed the stage of peak whiny-ness. He also seems to have taken a significant step forward in his tolerance for motion: He used to dislike being lifted, sitting on swings and see-saws, etc. Now he is jumping off of couches and wanting to be spun around. He still speaks mostly Dutch while understanding English. But he is more often making original English sentences, and not just repeating phrases. Also, he can sometimes explain to me Dutch words that I don't know.

We are thinking about which school Loki should attend. Here, kids start something like kindergarten at age four, which is only eight months away. He probably can't receive his water shots, medicines, and focused, guided meals in a normal classroom,. Furthermore, we really do not want him in a special education group, where the presence of children with learning disabilities may cause his education to be slowed down. We are presently leaning toward a school at the Sint Maartenskliniek ("St. Martin's Clinic"), a physical rehabilitation hospital where he goes occasionally for feeding therapy and regular tests. The school has small classrooms for mentally and/or physically disabled children. However, there is a special class for kids who are chronically or long term ill, and there they could give him the attention he needs. The clinic is just about three km away from our home, halfway to the city center. Moreover, it is affiliated with his current special-needs daycare. Thus, at the end of each short school day, he could take a bus over to his daycare where we could later pick him up. Most of his therapists work at the school, so transition of care would be very easy. When and if his eating and drinking improves enough, he could transfer to a more traditional school.

Generally, Loki talks a lot. He is able to ask what, where, why, who questions and he generally is able to answer similar questions. He tells pretty elaborate stories, some making more sense then others. They  usually involve experiences he recently underwent and often are  able to qualify the experience as cozy,  happy, scary, not fun, better, his "favorite," etc. Loki says all sorts of funny things. Here are a few that we remember:

• As I mentioned, his stories and imagination have become rather vivid. For example, he recently insisted (with a little smile) that Marjolein (his sitter, a woman) was his little brother.
• Lately Loki is fascinated with pregnancy. Sometimes each of us is a mama with a baby (a stuffed animal) in our tummies. When he is the mama, he will serenely cradle his baby. 
• He also plays house. We will each be one member of the next-door neighbor family. Once, he was that mother and Mama was the father, and I was the mailman. He looks at me and says, "That man in the kitchen looks like Daddy."
• In Dutch, people sometimes say they are "going like a train" when they are getting something done well. At daycare, Loki was told that he was going like a train (in terms of his development), and he replied "Yes, I go like a train because I am a big boy. My little friend D___ is going like a car."
• "Later when I am big, I'll go to the Maartens School. That is where Marja (one of his physical therapists) works. She will teach me to dance on one leg (that is his description of a physical therapy exercise). She told me that."
• "I am right, Daddy. Mama said that I may watch Molletje (his favorite cartoon)." While jumping and laughing around the house.
• Talking about sources of food, Loki said "bees make honey." When mama asked "Who makes the milk?" Loki: "You!" 
• I often call him "buddy." I said, "You are now too heavy to be carried all the time, bud." Loki replied: "I am not a butt. I have a butt."
• Loki is still very fond of words and letters . When mama said, "I will write your name. What is the first letter?" he answered "L." And then continuing by asking "and next?" Loki twice spelled his name correctly. 
• As I mentioned in the recent photo post, he is still crazy about music. He likes to play along, often to videos, and mostly with violin. When someone else joins and we play along with a duet, he assigns roles ("You are the one with long hair, and I am the one with short hair.") He also recently requested to play guitar along with Divided Sky, the song after which he was (sort-of) named. Not only do I like that music better, but I thought it was an appropriate request.

Finally, some logistics: We received another year of our personal budget which we can use toward a wide range of support services, including at-home child care. It is particularly good news, as that overall program was cut back by the government. Unfortunately, Loki's current 1.5 day / week sitter (Marjolein) whom we hire with this budget is moving on to other work. Also, Mama started a new job which is in our city. Instead of 90 minute commutes each way (on a good day!), she can pick him up and drop him off from day care.

Photos: December and January

With the gift drive and the holidays, we have fallen behind not only on posting on this blog, but even taking the photos themselves. Here are some photos from the last two months.

For Christmas, we had Loki pose with the hat and the bear that he got while in the NICU. At least one of them made it into the photo:

With Mom at home, Christmas dinner:

With Tante Simcha (Mama's step-sister) at a Christmas family gathering:

One day we'll get all the cousins (four kids among Mom's two step-sisters) in a good picture, but for now, here is a pile :

Loki is still absolutely crazy about playing music, especially violins. Here he used a full-size on as a cello in a duet with Opa Ruud's pretend violin:

For Christmas, Santa brought Loki a real violin. (It is tiny and has working strings and bow.) He can play it all day:

And in duets with Tante Marieke:

While at another family gathering, he got to play a harp:

We had some snow, so we got a wooden sled with a seat, and pulled Loki through the forest...:

...to a sledding hill. Loki went down a few times (video soon):

Snow pose:

Chomp:

In the Netherlands, new year's is celebrated with fireworks. Loki had a sparkler:

We spent new year's and the week after at a friend's house near Maastricht. They were getting ready for their vacation, and the kids thought they should help:

On the train with Dad:

Mama sometimes goes to acupuncture. Loki got to practice with his bears:

Smile:

Loki the violinist

Now that the fund drive is over, I can catch up on posting videos. After we returned from California, Loki became fascinated with violins--first from watching a busker at the grocery, then from his step-aunt Naomi. One day I searched "violin" on YouTube, and he quickly became quite keen with the top result, which is a violin duet as part of the rather cheesy Lord of the Dance. (He always prefers the pretty ladies.) Loki began to play along, and then practice the body movements: stomping, kicking, swinging the hair. He often insists that we join him in the duet. Here are a few clips, in order, as he "improves" from mid-October to mid-November. Then at the end, his aunt Marieke helps him use a real violin.

We did it! You did it!

We did it! You did it! You helped us raise $3795, almost doubling our goal of $2000. Without your help it would not have been possible. We are grateful beyond words for your support.

"I cannot tell you how amazed and delighted we all were by the generosity of your donors -$3795!!!! You have managed to generate so much goodwill and provided the Family Advisory Council with a resource to help many families in need. You have touched the hearts of so many individuals." Alison Brooks, Clinical Nurse Specialist at Alta Bates NICU.

Photo above from left to right:

• Nicole Tucker, Manager
• Melissa Harris, mother of Sam and Family Advisory Council member
• Katie Rose, Director of Women and Infant Services
• Alison Brooks, Clinical Nurse Specialist
• Misty Schultz, Social Worker
• Anna, NICU friend, Mascha, LSNFHF Ambassador
• Rob Stiles, father of Milo and Maddy and Family Advisory Council member.

Photo below: You

Photo below: Us

Many, many thanks! We wish you a beautiful and healthy New Year.

Loki Sky and his NICU Friends: Anna, Foxen, Judah and Asa, Bennett, Sam, Patrick and Molly, Gabriella and Alexandra

Gift Drive: Alexandra and Gabriella's story

Going strong and going on... This is our last call for your support in our effort to support Alta Bates NICU families who--in addition to having their child in the hospital--are facing financial difficulties.

To those who have donated or supported us otherwise: "Thank You!" If you have not yet donated, please consider doing so. Especially during this current economic downtown, many families need assistance in order to buy essentials such as a child car seat, crib, and diapers. Details on how you can donate are at the end of this message.

The delivery of the check by Loki Sky and his NICU Friends ambassador Mascha is set for Thursday December 29th. Both Family Advisory Council President Rob and FAC member Melissa will be there to receive the check.

Melissa and her son Sam were featured in this beautiful Alta Bates Summit Medical Center Ad:


Please read this story of two little miracles: Alexandra and Gabriella.

Our Miracles:

24 week old Gabriella 1lb 8oz

25 week old Alexandra 1lb14oz

"Our tiny daughters had the rockiest start of any child ever born. From the very beginning we were told, 'Two steps forward, one step back.' But we still had no idea how long and arduous that journey would actually be.

"The three months our daughters were in the NICU were full of challenges, hopes, and dreams. We watched them struggle to learn how to breathe, recover from heart surgery, learn how to suck, swallow, and breathe, fight infections (meningitis and ecoli), stare death in the face numerous times and survive. As each one of these issues began to resolve itself, we began to see light at the end of the NICU tunnel. Under the ever so watchful nurses, we began to learn how to care for our daughters and to relish in the joy of a gained pound or milestone met. When our daughters were discharged we felt confident in the knowledge that they were going to be okay, and that they were ready to begin life in the outside world.

"After seven years, our daughters continue to do well. They are happy and thriving. They love to draw and play dress-up. It is so exciting watching them read and do schoolwork. Seven years ago we never thought they would do so well.

"We owe all of this to the amazing care our daughters received in the NICU. Every nurse and doctor will always hold a special place in our hearts."

For those who followed the fund last year, you may recognize Gabriella and Alexandra. Their mother Amy delivered, together with Mascha, gift-cards and books to the NICU.

Happy Holidays to all!

Please consider supporting our efforts:

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to XXXXX. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: XXXX. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening XXXX o.v.v. “Holiday Fund”

Deadline: Donations accepted until Tuesday the 27th of December.

Delivery: Our check will be handed over to the NICU during the NICU in the week after Christmas. Photos and stories will be shared as usual.

Thank you very much for your help!
Sincerely,
Loki Sky and his NICU Friends
www.babylokisky.blogspot.com

Great news! Let's go further!

We made it... with your support we did indeed meet our target for this year’s Loki Sky and his NICU Friends Holiday Fund! We are very, very excited and grateful .

We won’t, however, disclose the exact amount until the check is handed over to the NICU. Due to reasons beyond our control this won’t happen until the week after Christmas, unlike earlier plans. Our ambassador Mascha will visit the NICU and offer the check on behalf of everybody who donated money. We want to honor all our donors and write your name on a letter handed to the NICU at time of delivery. If you do not want to be mentioned please let us know before Saturday the 24th, in that case we will respectfully delete your name from the public list.

The benefit of this little delay is that, if you are still considering donating, we can accept donations until Tuesday the 27th of December. Although we met our goal, let’s see how far we can take this fund. The more money we are able to donate, the more families we will be able to help out.

The social workers at the NICU are some of the professionals who know better than anyone else the challenges and hardships that families face. We want to share a few words from NICU social worker Misty Schutltz. Misty is someone who has made a big difference for many NICU families, including Loki Sky and some of his friends.

Misty Schultz: "The families are always VERY appreciative of any assistance. The money is nice as we can get gift certificates, which provide the parents with choice—item, color style—which is very empowering—going shopping for your own child. The money you gather for us at Christmas lasts the entire year. We save it for the neediest families so they can purchase car seats, clothing, blankets, bassinets or other essential infant care items for their preemie. I have a story of someone who got much needed help--- a young 20 year old single mom of a 2 year old who delivered premature twins. She had very little family support. She had nothing for the twins, literally nothing in the entire, and we were able to help her get all infant supplies to help care for her babies."

Also, a quote from Loki Sky’s mama: "I very well remember those first scary months of Loki’s life. In particular, I remember a moment where I walked the NICU hallways after scrubbing my hands, which at that time were hurting and a bit bloody from the chemicals in the soap and the anti-bacterial gel. I was exhausted, sad, and scared. I just could not accept the concept of this being our birth story and only the end of it: a traumatic start, that's it. I really wanted this to be more than Loki’s difficult start. I wanted this to make sense.

"The way that I have been able to make sense of it all is ensuring that--somehow--other people can benefit from our situation. To that extent this Holiday Fund has been an opportunity for me to heal. It inspires me how this fund has brought many former preemie families together, making a difference to those following us in the NICU. Even more so, I am incredibly grateful to all our family members, friends, and returning donors who are making this possible for the third year in a row. In your effort to support families currently in need, you are also helping several former preemie families make sense of their own story. To turn a difficult life-changing event into a positive and rewarding situation is perhaps the greatest gift we could receive during the Holidays. From the bottom of my heart I thank you for this."

This is where Loki came from:


And this is where he is now:

Let's take this to new heights!!

How you can help:

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to XXXXX. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: XXXX. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening XXXX o.v.v. “Holiday Fund”

Deadline: Donations accepted until Tuesday the 27th of December.

Delivery: Our check will be handed over to the NICU during the NICU in the week after Christmas. Photos and stories will be shared as usual.

Thank you very much for your help!
Sincerely,

Loki Sky and his NICU Friends

www.babylokisky.blogspot.com

Bennett's story

$1701 in donations thus far! We are marching toward the $2000 which we are hoping to collect in order to support families at the Alta Bates NICU in Berkeley. Once again, many, many thanks for all your support.

Not every family is blessed with a wonderfully supportive social network, or with the ability to leave their job for the duration of their baby's hospital stay or after homecoming. Loki and his NICU friends are a group of former preemie parents who, despite a traumatic start of their babies' lives, feel tremendously blessed and grateful for all the help which they received from family, friends, hospital staff, and strangers. We want all NICU families to spend critical time with their baby. We want all NICU families to be able to be with their baby in the hospital and not to worry about care for their children at home. We want families who are perfectly capable of offering their baby a socially and emotionally safe home to bring their baby home. Lack of a car seat, crib, diapers, stroller, and other necessities should not be an issue for any family. With your help, we have been able to support many families the past two years, and with your help we will be able to offer support to many more this upcoming year.

We want to share a few quotes from the mother of "baby boy" Bennett', whose story is quite a powerful one. He announced his arrival at merely 19 weeks gestation after his mother's water broke and in addition she was diagnosed with a complete placenta previa. Miraculously, his mother was able to keep him inside, allowing him to grow with practically no amniotic fluid, a situation which seriously diminished his chances of survival. Bennett came into this world with 31+5 weeks gestation. His mother spent 110 days in bed, of which 90 days in the hospital. What followed was another 60 days in the NICU and a year filled with many hospitalizations. Despite all these challenges, Bennett is developing amazingly well.

Please meet Bennett and his super mom Elisa:

"Those 90 days in that hospital bed -- waiting for Bennett to be born and wondering if he would live -- were some of the most challenging I've ever faced ... and they were immediately followed by his birth, his fairly miraculous survival and a 60-day NICU stint. That's 150 days we spent at Alta Bates. Bennett was incredibly sick and fragile at birth. On the heels of three very precarious months in a hospital bed, there were days in that NICU when I was certain I didn't have either the physical or emotional strength to get through the hypervigilance required to NICU-parent him to that background soundtrack of beeps, pings and alarms that still ring in my head today, more than a year later. But somehow, during that most unlucky time in my life ... meeting [Mom] through Mascha, and having both of their veteran support, made me feel anything but. It was a gift. Two moms who'd been there and could shine some light on the path. I was rich with their support, empathy, and logistical know-how (ask for "so and so" nurse, make sure you eat, park on the side streets, take a break, etc.). There were dozens and dozens of NICU families in there during our NICU stay, and we all looked like zombies, floating in, washing our hands, finding our babies, peering in their incubators with all their wires and IVs and monitors... so very aware of how abnormal a start this is for a baby (and his mom).

"And yet, in all that abnormality... there was a comfort. And the only way I can explain it is that, because Mascha introduced me to Kat and Loki, the NICU knew Bennett and me before he even arrived and welcomed us with open arms. Because there was a Loki, the NICU's clinical director and a few of Loki's special nurses had visited me in my antepartum room multiple times before Bennett's arrival. This connection made ALL the difference. Loki helped me to 'belong" to a club that no one wants to be in, but hell... if you find yourself there... how grateful you will be if you can drop his name. ;)"

This Anna, she visited Elisa on Aug. 12, 2010 (Elisa was then 29 weeks pregnant). Anna was born on the same floor at 30 weeks, 3 lbs. 4 oz. Elisa continues:

"This is not the experience for 99% of Alta Bates NICU families. Most do not have 90-hospitalized days to prepare for the fact that their 'best case scenario' is a very sick and premature baby. Most do not know families who've been there before them. Many do not live in such close proximity to the hospital. Many do not have local family and friends who can offer meals and help with other children. And what is very evident to anyone who is familiar with the Alta Bates NICU... many of the NICU families lack basic financial resource. And so... the experience of having a sick and premature child is not only emotionally and logistically devastating, but it has an immediate and significant harmful financial impact. We hope that your gift and support to the most needy families in the Alta Bates NICU will provide them with a moment, at one of the most unlucky times in their lives, during which they feel an interruption of luck, good will, care and support."

Loki Sky was born at the same floor at 24 weeks gestation, weighing 1 lbs., 5 oz. This photo was taken on Aug. 5 2010, visiting Elisa who was 28 weeks pregnant that day.

If you like to help out please follow the instructions below:
Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to XXXX. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: XXXX. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening XXXX o.v.v. “Holiday Fund”

Deadline: Monday December 19th 2011

Thank you very much for your help!

Sincerely,

Loki Sky and his NICU Friends
www.babylokisky.blogspot.com

Help us reach our Target

Although we have shared our target for this year’s fund via Facebook, we have yet to announce the number via our email letter. For our 3^rd Annual Loki Sky and His NICU Friends Holiday Fund, we hope to collect $2000. Please help us meet this target.

How far along are we? As of today, December 8^th 2011, we already received $1125. Two more weeks to collect another $875, WE CAN DO THIS!

All the donations will benefit financially strained families whose new babies were admitted to the Alta Bates Summit Medical Center NICU in Berkeley, California. The NICU Social Workers, together with the Family Advisory Council, will ensure that families in need receive car seats, cribs, strollers, support with transportation from and to the hospital, or--in some cases--food for older siblings of the NICU baby.

How it all began, and continued:

Christmas 2008: Loki Sky at the calendar age of 2 months and at 33 weeks gestation (that is, 7 weeks before he was expected to be born). The knitted hat was made and given to us by strangers caring for our situation:



Christmas 2009: Our 1st Annual Holiday Fund was a great success. You helped us handout 56 gift bags, 5 massage certificates and approximately $1200 in gift cards for those facing economically difficult circumstances. Here is Loki Sky with some of the 56 gift bags, posing with Nurse Margaret.



Christmas 2010: Our 2^nd Annual Holiday Fund was an even bigger success with a total of $3000 donated by you. We were able to buy 64 x $20 gift cards and 64 books, one for each family in the NICU. In addition, you donated enough in order to buy $1450 in gift cards for families who needed help buying car seats, strollers and cribs. The first sorting gift cards and our letter for the NICU families, while we were in Indiana:



Then Team California (Mascha, Anna, Amy, Gabriella, and Alexandra) delivering the gift cards and books to the NICU:



Chrismtas 2011: We hope to deliver a check of $2000 to the NICU over the Holidays. Melissa Harris, member of the Family Advisory Council will accept the check from Mascha, Holiday Fund Representative, together with Misty Schultz, NICU Social Worker Extraordinaire. Photos and stories will be shared as usual.

Help us make it happen!

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to XXXX. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: XXXX. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening XXXX o.v.v. “Holiday Fund”

Deadline: Monday December 18th 2011

Thank you very much for your help!
Sincerely,
Loki Sky and his NICU Friends
www.babylokisky.blogspot.com