California photos

We went to California for three weeks. At the Alta Bates NICU reunion picnic:

Loki has learned to pose, here in Golden Gate Park:

At the Tilden park kids' farm:

With Mom, Laureen, and her twins at the farm:

Playing with the twins:

With NICU buddy Foxen at our picnic:

With Anna:

Again with Anna:

Playing with Foxen in Children's Fairyland, Oakland:

With Nana and Papaw, who came out from Indiana to visit us, at the cable car:

In the tram with Mom and Nana:

On the carousel on Fisherman's Wharf:

Looking at the sea lions of Fisherman's Wharf:

Meeting with Mascha and Anna at Sausalito's tiny beach:

Doing what he loves:

At Sausalito Beach:

Dork:

With Mom at Natural Bridges Beach near Santa Cruz, on the way to Monterrey:

Mascha loaned us a backpack, and Loki held the umbrella during a light rain:

Loki now likes to play hide-and-seek, here at the Carmel Mission:

With Dad in the soft white sand of Carmel Beach:

With Mom in the Monterrey Aquarium:

In the aquarium:

Mom reading, along with Stephanie's kids:

Keeping out of the warm sun:

It was all about swimming pools. Jane has one in her apartment building:

With Finn:

With Magnolia, Luna's older daughter:

With Luna and her daughters. It can be tough to get them all in position:

Hallo!

Cooking pumpkin pie with Margaret:

On Ocean Beach, San Francisco, with the Dutch windmill in the background:

After rolling in the sand:

With Dad:

On Margaret's stoop:

He takes pictures now. This is typical:

Cleaning with Margaret on our last day:

Happy third birthday!

Happy birthday, buddy. Nothing has changed my life more. I don't think words can accurately describe the progress you've made, so here are some photos.

Birth:

One:

Two:

Now three:

A special child on his third birthday

It has been such a long time since I wrote an update that I am not even sure anymore how it works. Generally, I think this is a good thing. Although I would have loved to keep you posted on Loki's developmental milestones, doctors' visits, and medication, I think the lack of writing simply means our lives are normalizing. On the other hand, life is also busy with two working parents (I am now working 3 days per week) and a growing toddler.

This month, though, I have to write. Loki will turn three tomorrow and that's a pretty big deal! Three years ago I was high on magnesium, sweating in a cold room, unable to focus my eyes, and seeing rainbow colors on the ceiling above my hospital bed--a bed, which even until today, I remember being moved around into a different corner of the room several times that week. (That is not true, I know.) Just as a reminder, my water broke at 23 weeks + 4 days. (Some suspicion remains about the recorded dates being almost a week ahead of the actual gestation.) I suffered from PPROM (Preterm Premature Rupture of Membranes), and there was not enough space for the little man and the amniotic fluid. For a week, Loki was stuck, unable to move anywhere else but out.... and that is exactly what he did. On October 18th, 2008 Loki decided it was time to venture into this world, as his mama's uterus just did not allow him to grow anymore. Weighing in at 1 lb  5 oz (610 grams), Loki's chances of survival were rather scary. Depending on what data one uses, at 23 weeks survival chances vary between 17% to 35%, and 24 weeks they range from 39% to 55%. So yes, turning three is quite a big deal, especially considering that unrelated to his prematurity Loki's single kidney was malfunctioning before he had even reached his due date.

However, we do not think about these past issues on a daily basis. In fact, we just mentioned how much of it often seems like a distant memory. Regardless, when we sit down and look at our lives, we realize how much our lives are still dictated by Loki's early start and failing kidney. How so? Loki is doing so well: he knows the alphabet, knows most colors, loves pretending to play the guitar, and makes up elaborate stories about getting groceries, celebrating birthdays, and fixing cars. He can eat so much better than a year ago, enjoys his day care, loves to hang out with family and friends, and enjoys commanding us around the house. All so true, but....

Loki continues to have a g-tube because most days he gets between 10-30% of his calories through it. He continues to receive the equivalent (whether food or water, by mouth or by tube) of approximately 30 shots (60 mL each) of water per day to ensure adequate urine concentration. It is thus needless to explain why one of his favorite books at the moment is "My Tubey," about a child with a g-tube.

Although doctors' visits have tapered off immensely, we still go to the hospital every 2-3 months for a general check-up, weight check, urine sample and--every other visit--a blood work-up. One of Loki's favorite pretend games is being a doctor, giving us shots, pushing tubes through our noses, taking pictures of tummies, listening to us breath ("bref"), searching for mice in our ears, and taking hip pictures (based on an x-ray performed about three months ago for which we will receive results during our next rehab visit in November).

Loki receives a standard of 4 types of medicines, totaling 9 times a day. Throwing up and uncontrolled coughing now happens only a few times a week, rather than multiple times every day. However, we constantly must be aware about how much we can push oral feeds, how much we can give him in the tube, how fast we can go, how often to give a shot, and whether a particular instance of coughing and gagging is caused by feed aversion, reflux, or behavior.

Yes, our three year old son is a great actor (see the previous video), as he should be at this age, and he knows how to make himself throw up as a means of avoiding oral feeds or going to sleep alone. Fortunately, we generally are able to approach him calmly with a clear message: "There is no gain in throwing up on purpose." However, since this behavior became a bit more worrisome than typical "terrible two" tantrums, our five hours of feeding per day (in order to get all his food in by mouth)  were put to a halt. No one had fun, and every one was grumpy. Now we feed him 30 minutes maximum, five times a day. Thus, there is now a bit more food through the tube. We continue to work on chewing and swallowing several times a day, but are happily blenderizing many of his meals just for the sake of getting the calories in. This brings me to the next point:

Loki has gained weight really well! He weighs 15 kilograms (33 pounds) and measures 92 centimeters (36 inches) tall. It is now time to wean him off the Duocal, a powder with which we add in order to increase calories in most of his meals. The tricky thing here is, according to his dietitian, he needs to gain enough weight to be able to grow in length. However, with winter around the corner, we will probably see colds and gastroenteritis, which often have a major impact on children like Loki. So reducing enough but not too much is still a bit daunting. For now, we will cut the Duocal in half and see Loki's main doctor again in December.

Overall, though, Loki is doing so incredibly well. Since our trip to California last month, English words are multiplying and his Dutch sentences are becoming more complicated and lengthy. (e.g., in Dutch he will say "Mama, I went to the store and bought you some birthday cake because we have a party.") Grammar and word order puzzle us sometimes, but generally Loki is great at verbal communication. Loki asks "Why?," "How does this work?", and "What is this for?" all day long, and he rarely seems saturated with information. At the same time, Loki is scared on a swing, a slide, and a see-saw, as well as stepping down from sidewalks and going up stairs. That said, at Margaret's home--where we so, so happily stayed during our visit to the US--he conquered a lot of his fears and dealt with some of his vestibular (balance) and proprioceptive (movement) sensory integration difficulties. The unknowns of vacation and the craziness of seeing different groups lots of our lovely American friends each caused enough stress, however, to trigger some olfactory sensory integration challenges. All of a sudden, Loki started gagging when smelling anything out of the ordinary (car fumes, his own pee diaper, perfume, food, burning wood), exclaiming "I don't want to smell that!"

Still, I dare say that our lives have normalized. We undertake normal people activities like vacationing  and hanging out with friends and family, without the constant fear of germs. Our feeding therapy has been reduced to a home-video every few months, about which we will have some agreement and disagreement with the therapist, and from which I (Mom) usually come back with some pretty good advice. Loki will most likely eat all of his food some day, but water may take a bit longer. But hey--we have a child who is developing rather age-appropriate cognitive and language skills. However, we are very careful not to think too far ahead, because the chances are that our little guy may move from his special needs group at a typical day care to a regular school. I am a bit nervous to write this down, worried that I may jinks all the progress, but the reality is that Loki is developing typically in many ways. This does not guarantee anything, but it gives hope that his life may look just a little bit easier than we could have hoped for when he was born three years ago.

A little less exciting is Loki's blood pressure, which continues to be high (108/70 with a large band, last time 128/80 with a smaller band). I finally dared to ask what this means for his future. (Yes, I did ask what the results meant for now, but with all we had to deal with I generally never want to know what things mean for Loki in the long term. I consider it amazing that I have enough space emotionally and mentally to be able to hear and process such information!) Anyway, yes, he will need to be monitored the rest of his life, and yes, he will need medicine at some point in time, especially since high blood pressure runs in the family. Whether this is during child- or adulthood is unpredictable. As I was processing this, weighing it against severe cerebral palsy, which seemed a very realistic diagnosis at birth, and would have been "good outcome" considering the survival rate, I ventured into asking about Loki's kidney. "What about it?" asked the doctor. "Well, what can we expect? How will it hold up? How healthy is it?" I realize that it may come across as odd that I have not asked this question in a while. However, having dealt with some pretty difficult news early on, the less bad news--and even the good news--just needed to be experienced then to its fullest extent as well. When Loki was still hospitalized, I needed good news, I needed normalcy, and I needed not to worry all the time. I have now allowed myself that space, and I dare say because of this, I can better process the bits of challenging news--not that there is much to worry about at this particular time. Regardless of the doctor's very positive evaluation, he said the kidney is and will be a weak link in the chain, always. He literally said: "As long as everything goes well and Loki is healthy, the kidney behaves normally. But it cannot handle challenges very well, which is evident when he gets sick. Illnesses such as colds (always going hand in hand with increased vomiting), gastroentiritis (which is defined by vomiting and diarrhea), and flus will always be risks to the kidney."  Dear friends and family, it may take a LONG time before we are completely relaxed around colds, etc. Fortunately, Loki seems to be having a pretty good immune system at the moment. Although he seems to be getting a cold at the moment, he did not get the obnoxious cold during our  time in California.

With our special child, we have reached a decent level of normalcy. There is no need to encourage Loki in developing new skills on a daily basis, as there had been before. Now, all of a sudden, he masters a new milestone, leaving us in awe of his intelligence and persistence. Loki can explain that he is angry with me because I go to work and he misses me. He explains me how he is angry because I bring him to the doctor. No matter how it breaks my heart to see him struggle with his emotions around abandonment (which are perfectly normal for a child his age) and with intrusive medical treatments (which are not at all typical), I am  so proud that my son is able to eloquently express his emotions with words at this age. For example, Loki understands that airplanes fly in the air, and showed a lot of anxiety about that. He wondered whether the plane could fall down. When I gave him a rather simplistic and non-realistic explanation that "airplanes drive on the clouds," he asked Dad a few days later how the plane was able to get from the ground to the clouds! I better start brushing up on my general knowledge about everything, because "Just because!" is not a satisfactory answer to "Why?", and why should it be? If you survive being born at 24 weeks and experiencing renal failure, you deserve to get real answers.

Loki Sky, amazing human being, I wish you an absolute beautiful birthday and a wonderful, beautiful new year. You are the most amazing child to me. Thank you!

August photos: beach weekend et al

With Mom's dad and step-family, we spent a night in a hotel / hostel by the sea. Loki was a bit overwhelmed by the water, but could play in sand forever,

Final rinse with cousins:

Looking with Mom:

Kiss from Mom.. not ready to leave the beach:

On the dunes with Tante Marieke:

Playing in the dunes at sunset. That's the hotel in back:

With Marjolein, his sitter for 1.5 days / week:

Chilling at the park:

Loki got his first real bike, a hand-me-down from one of K's friends:

We recently house- and pet-sat for some friends. Loki could walk a dog:

Put him to work:

Lumberjack:

Sorry for the bad photo, but it demonstrates who is boss. That's Mom's mom ("Omi") on the floor.

Good morning:

July photos

We did not take enough photos in July, so here are just a few. Loki and Mom traveled last week to Germany to meet up with Mascha and Anna, whom we know from California:

Sleepy on the drive home:

At a multi-birthday party, we finally got a decent photo of Loki with Oma Anna, Mom's step-mom:

And with Mom's step-sister, Naomi:

Not much happens in our little village. But the one of the biggest annual gatherings in the Netherlands is the Four Day's March, centered in the adjacent city of Nijmegen. On one of the days, thousands of people walk through our village. People watch people walk. Yes, it is that exciting here! Here, Loki watches with our next-door neighbor:

Cooking dinner:

Good news on feeding, and Dad dumps difficult thoughts

There have recently been some very positive developments in Loki's feeding. We previously mentioned that, since about February, we have been trying a different approach, which uses both rewards and punishments to convince him to eat. Once he started to actually swallow food, we reduced his tube feedings, both because he was getting food by mouth and because we wanted him to become hungry. We cut 1/3 of his tube feeding, and then 1/2, and then about two weeks ago we took the plunge.

Now, for the most part, Loki is getting all of his calories by mouth. Of course, we still must give him a couple dozen shots of water each day to keep his kidney rinsed. (Yes, it is an ironic coincidence that his feeding problems gave us the tube, which helps us take better care of his kidney!) And if he does not eat enough in a day, and/or throws up too much, then we give him some food via tube at the end of the day. Furthermore, most of the food he eats by mouth is liquid or blended. We will later work on chewing tougher foods. Regardless, this is a big reason to celebrate.

Although this is a big step forward for Loki, in some ways this is a step back for us. Feeding him by mouth is extremely time-consuming, confrontational, and tiring. This is especially the case for Mom, who does most of this work, by far. We (i.e. she) do (does) up to five feeding sessions per day, and on a tough day, this can add up to 4 or 5 hours. Each session is continuous cajoling, for example, by offering Loki the next piece of a toy if he just takes a certain number of bites, or warning that he'll be punished by sitting in the stroller for two minutes if he refuses. Being two years old, Loki tries to push us as hard as a he can. During a difficult session, he'll go in and out of the stroller for 45 minutes before taking a single bite. In addition, Loki has become rather creative in using gagging and vomiting to try to get his way. Mom has the patience of a saint. If I faced that, I would probably give up and move to the tube.

Loki eats much better if he is watching some video, either on our computer or smart phones. Thus, sometimes we'll reward him a short clip, or even do the whole meal in front of a video. We certainly do not like him watching this much TV, but it may be the lesser of two evils. A side effect of the confrontational feeding, and especially the vomiting as a result, is that he shows increased aversions to food and to eating. Loki is excessively sensitive to things touching his face: he almost obsessively wipes his mouth during eating, and does not like kisses on his face (never has). We plan to later transition away from any use of video.

Another challenge in this is healthy food. This is particularly important because of his kidney, which requires a special low-protein diet. We previously made super-healthy tube feedings. Now, we just want him to eat by mouth, and this sometimes has less-than-ideal dietary content. This is something we presently work on. This means much time putting together organic, well balanced meals, which still tickle his taste buds.

While all this is clearly a major positive step for Loki, it is difficult for us. Feeding him in this manner is extremely tiring--physically, mentally, and emotionally--especially for Mom. This feeding work is on top of all of his other special care, such as medicines, shots of water, throwing up, extra-caution about potential illness, numerous doctor appointments, etc. And all of this special work is in addition to the care for a normal toddler. Finally, Loki's care is added to the needs of living a 'normal' life.

On a daily basis, this leaves little room for us (individually or together) to do, think, or feel much else besides Loki's care. Furthermore, this tiredness has accumulated and has left us exhausted. Mom went on bed rest during her pregnancy almost three years ago, and the work and stress has not relented. We don't really get breaks. If one of us takes a break (as I have been able to do a few times, usually for work), it merely shifts the burden onto the other. It is even tougher for us both to get away. Not only is Loki a lot of work, but it is specialized work, and it keeps changing. To be honest, I am always trying to keep up with Mom's latest experiments and modifications to Loki's feeding. We can't simply hire any baby sitter. It is probably unsurprising that this situation often wears us down individually, and can stress our relationship.

I had previously not given much thought to raising a 'special needs' child. To the extent that I had, I believe that the extra work is obvious. Its tiring nature is also logical, although I could not have understood exactly how exhausting it is. However, what I never expected was the degree of isolation. Everyone needs someone to whom they can turn when life is difficult, either to discuss problems or just to relax and chat about other things. Yet we can't escape the feeling that very few people truly understands our situation. Sure, our close family members have pretty good ideas, as do other parents of special needs children. But when I talk with most others, I cannot help but feel there is an important gap between us which cannot be closed. This has probably contributed to my difficulty in making and maintaining friendships.

Let me clear that we are incredibly grateful for the support which we have received. In no way do I wish for these words to mean otherwise. Many of our family members, friends, colleagues, doctors, and nurses have done all that they can to help us. (In fact, Mom's mom and step-dad just took Loki for 48 hours so that we can have some rest-and-relaxation in Amsterdam! Our first two night get away without) But there are limits to what can be done and understood, and I find them to be challenging.

And most of all, let me be clear that we are incredibly grateful for Loki and his generally improving condition. If, in the fall of 2008, I could have spoken with my current self, and learned how Loki would do two and a half years in the future, I certainly would have been overjoyed. I try not to lose sight of this, although this can also be difficult.