What wasn't there.. dedicated to my fellow preemie mothers

Dear people,

It is the evening before Loki's fifth birthday. Our once tiny elf will be five years old tomorrow. It is a big deal. It probably always will be a big deal. Not only was Loki born extremely prematurely, he has some rather serious lingering health issues with his kidney.

Most years on this day I reminisce about what is, where we are, where we come from and how amazing it is we find ourselves yet a year older with many new and beautiful developments. Although this is all still true today, I won't go there right now. I am choosing to share a very personal story about what I am experiencing now, the eve of Loki's 5th birthday.

I have not written, nor talked, much about what we did not have. This is odd, of course. Why think about what one does not have? Why pain my brain and heart with what is not, when what we have is so much better than we dared to hope for when Loki was born? The reason is simple, like any mother I had hopes, dreams, expectations about what motherhood would bring. I fantasized about what kind of a mother I would be and how my healthy and happy child would thrive. For the first time in five years I dare to look at these hopes and dreams and feel the reality of what is not. I did not experience a healthy pregnancy, where I would grow together with my child, proudly sticking my stomach in the air, showing off my ever growing bump. Except for one very obvious move, I did not feel my child move around in my womb, there just was not enough space. My partner did not feel his child move and kick while having his hand on my belly. There was no home birth, there was not a vaginal birth, there was no doulah no midwife. We did not have our own music, no room filled with love and excitement for what was about to be happen. There were no weeks following Loki's birth where we could figure out parenthood together. No first bath, no holding my baby, cuddling after breastfeeding, napping with baby next to me. There were no regular toddler years where I could explore the world with my child, playing with friends, without worrying about germs, illnesses, the next hospital stay. There have not been many fun family meals, where how much goes and stays in is not carefully watched. I have not had the energy to fill the house with fun art projects or go on forest walks collecting seasonal treasures with the love and dedication I remember from my own mother.

There is a lot I had hoped for, and still we have so much more than I dared hoping for when Loki was born.... I think I survived alright, I think I have done okay considering the circumstances. But dear, dear people, our story was not my dream, not even close. We move forward enough to make this experience a safe one. As exhausting as it may be, I do feel that allowing and acknowledging these emotions help me become more of the mother I can and want to be. I want to be attentive and warm, loving and encouraging. With an unopened backpack filled with sadness, I feel worn down. So I am opening up this luggage, look at it and shed all the tears I held on to for all those years. I grieve those lost dreams........I grieve the loss of "normal."

I want to dedicate this post to all preemie mothers I know personally or who read this blog. Some of you are very dear friends, whom I know, understand exactly what I am talking about. I dedicate this writing to you wonderful woman, who protects and moves forward on a daily basis, despite major challenges on your road. I dedicate this to you dear friend, because I know from your personal story, that you have wandered very similar paths. I hold you so dear in my heart and I thank you for entrusting me with your story, it helps me just to know you are there! Thank you!

Photos March to September 2013

Although my aim is to post an album every three months, moving in July took up much time. So here are photos going all the way back to before our trip to California.

First school portrait:

Loki's cousin Taylor visited from Indiana. This is a rare full family+1, at a reconstructed Roman city in Germany.

Loki's (second) cousins visited from California:

In August we squeezed in our first (almost) camping. It was "almost camping" in that we rented a little one-room "pod" at a campground here in the Netherlands. Loki loved it. We cooked and ate s'mores, which is an American campfire sugar overdose consisting of a fire-roasted marshmallow, chocolate, and Graham cracker.

There, Loki had his bit of heaven, which is water (with pump on left, and piping), sand, shovels, and a willing adult helping.

There was a little pond there:

We recently bought a fold-able wagon for evening walks and more:

Mom and Loki at the camp:

Going back to March, for the third Easter in a row (others: 1, 2) we rented a vacation house in the Belgian hills with the same two other families:

One important remaining photo from California: A tour of the Alta-Bates NICU. He wanted to see an incubator, but seemed a bit confused or disturbed (or bored) by it:

OK, back to summer. The hard life:

Visiting Opa, Oma, and two cousins at their campground. This is a very Dutch photo:

With our former next-door neighbor:

School buddies:

Nana sent a toy razor, inspired by these:

This is a daughter of a close friend of Mom, and the younger sister of Rebecca. For her birthday, she wanted to spend a weekend at our house, especially with Loki.

New photos from the past

Loki's Opa Ruud is the shutterbug of the family. I recently grabbed some photos of Loki from his computer. Thus, here are some shots from the last three years.

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 Dad'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!

California vacation photos, batch 2

After Southern California and Disneyland, the three of us drove up the coast, spending a few nights relaxing in a little rental house in the forested hills above Santa Cruz:

We visited the big redwoods:

The weather was abnormally warm then, so we went to the Santa Cruz beach and boardwalk both afternoons. Wet sand and surf is Loki's favorite activity in the world:

From there, we went on to San Francisco where we stayed at Margaret's house:

At Ghirardelli Square, we had to argue with Loki to get him to eat a banana split:

We visited the Alta Bates NICU, where Loki spent his first three months as a preemie. All the nurses, doctors, and staff were very excited to see him:

Loki played with many friends, although unfortunately in each case we had to say goodbye sooner than we wanted. He played at the beach with Anna, who gave him a swimsuit:

In the East Bay, we stayed with a friend of Mom's, who has twins just a year older than Loki. Although they played a lot, we did not get a good photo:

We visited my long, long-term friend Luna and her two daughters. They got dirty:

Loki has always had a special connection with Foxen, who was in the Alta Bates NICU with Loki. When Foxen first saw Loki, he ran up and gave a surprised Loki a hug and said, "Loki, I've missed you so much!" (Great photos from Foxen's dad):