Saturday, June 1, 2013

Update: such a long time

It has been such a long time since I wrote a blog update. The last time I wrote I explained the "normalizing" life circumstances were one of the reasons to write less. This time, I cannot quite say that. Although no major issues have come up, fall and winter have been rather trying in a new way. I have been very hesitant to write about this because, as Loki gets older, I feel that we must protect his privacy better. At the same time, I do realize how much other preemie blogs have helped me through some difficult times. If, with our blog, we can make one family feel understood, supported, or sent in a direction they needed to go, it makes sense.

The start of more challenging times came after our trip to the Indiana in September 2012. Up until then we saw steady improvement when it comes to Loki's development, health, and eating.

There is a simple explanation for the downfall: After a wonderful trip to Jesse's home territory, we experienced terrible turbulence during the first leg of our returning fight. It shook Loki up big time. It is important to remember here that one of the left-overs from Loki's premature birth are issues with his sensory integration. For him this means, among others, that he has a very difficult time processing vestibular (movement) sensory input (think about slides, swings, climbing etc.). Loki can explain well that the feeling in his stomach is  scary to him. For approximately 5 months, he reenacted the flight, had nightmares, woke up several times a night and displayed challenging behavior (screaming, yelling, hitting, crying etc.). In addition, he was talking, playing, and dreaming a lot about medical procedures and doctors' visits. The fear and unsafe feelings during our flight seemed to have shaken him up in pretty profound ways. Loki started to resist not only eating, but also his food and water shots. A lot of our interactions were colored by trying to convince him he really needed the water/food to live and thrive, by fights, by inpatient feelings from both sides, by tears and by short nights.

If this were all of it, I think I would have been able to handle the situation with more grace. However, in the midst of Loki's misery, I needed to justify to the government the money we receive to pay for his babysitters and to apply for school money and for after-school money. As grateful as I am for the immense financial support from the government, this was a lot of work. In hindsight, I do not understand how I spent as much time as I did on this. Most free evenings and days were spent writing reports, reading through the complete medical history (which is not fun, by the way), trying to convince people he really could not go to a regular school because of his tube feeding. We continue to give between 15-25 shots per day, and on many days sufficient oral intake takes hours to accomplish. I felt overwhelmed by all doctors, therapists and teacher conferences and the paperwork to accompany the appointments. At the same time, my anxiety and worries about Loki's future were raised to new levels.

After much deliberation we decided to seek help and in February of this year Loki was diagnosed with Post Traumatic Stress Disorder. This is not uncommon in preemies, but daunting regardless. How can we help this little warrior feel less anxiety and experience a sense of safety? How to help our little guy when he does not want to go to school because there is too much noise? How to help him when he feels so much anxiety that he almost pulls his own hair out as he does not know what to do with him self?

There are many wonderful days. We had a lot of fun on our recent trip to California. We are however, paying the price afterwards. Despite some anti-anxiety medication, he was extremely scared and worried during the flight. Of course, he readjusts more quickly as he gets older and is increasingly more capable to explain his worries. However, he is indeed struggling again with day-to-day situations as eating, regulating his emotions, hearing noise, riding a bike (bumps), saying goodbye at school etc. etc. It is moments like these that I feel very overwhelmed and guilty: overwhelmed because I just do not know how to protect him from what life is and how to make him experience a core sense of safety and comfort, and guilty because I am not always patient and adequate in my response.

We know we are not nearly done with medical interventions. Our last kidney ultrasound showed hydronephrosis again. This means his kidney is not able to get rid of all the urine it produces. This was the cause of Loki's kidney failure in January 2009 when he was still in the Alta Bates NICU. It was the reason for his major kidney surgeries and the source of our profound fear of losing our son. This diagnosis likely means that Loki will eventually have surgery on his single kidney once again. It is not urgent, and may take another 5 or 10 years before we reach this moment. Furthermore, such surgery on a larger boy's kidney under non-urgent circumstances is much less difficult than emergency surgery on that of a preemie baby. But comforting, it certainly is not.

To address some of his challenges Loki receives EMDR therapy (specifically for trauma treatment) and craniosacral therapy, and we truly hope that this will bring him some peace of mind. At school, the twice-per-week occupational therapy and physical therapists are focusing on his sensory integration skills. Hopefully this too will bring him solace.

Being born prematurely is often not just a matter of growing and getting better. It can bring life-long  issues which impact the happy and healthy growth of a child. I have said it before, and I will say it again: I would not trade our story with someone else's because it is our story. But I would make life easier on Loki in a heartbeat, if I could.

I will conclude this post with some positives, because there are plenty wonderful moments of course. Loki generally loves his school. He is developing new skills and abilities constantly. Despite being the youngest (with more than a year between him and the next older child), he tags along with the older kids. Before his teachers explain him what the idea behind a "spell and stamp" activity is, he already spelled the word VIS (fish). In addition, Loki is developing an increasing ability to verbally explain what goes on in his mind. This seems to give him a sense of control over his life. His ability to look at the world and explain "outer space," why it is foggy, or how his blood flows through his heart makes us pause and look at him in awe. His eagerness to learn about everything around him is just a wonderful treat.

Despite many emotional and medical challenges this child of ours is able to develop and grow at an impressive rate. If you ask me, this reflects the spirit of a survivor!

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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