A big day

Years and years have passed.

We do not think much about writing a blogpost and, as you can see, we have not written at all in a very long time.  

For many years, the blog was a way to process our experiences with Loki, his major health issues and the wonderful progress we witnessed. Also, writing was a way to inform our family and friends across the globe about Loki's health and development. We wanted Loki to have his story chronicled so he will always know how powerful and persevering he is. Finally, we wanted to share our story in order to provide courage and hope for others who have similar experiences.  Due to Facebook, where we can keep people informed, due to the decreasing need to process our challenges, and due to a much, much healthier and thriving boy, we do not write anymore.

Yet, we do want to share some major developments from the past few years. 

Loki is 8,5 years old, and on a daily basis we look at him and wonder how he came this far? How did this incredibly tiny preemie, with lingering, severe health issues, become such a big and thriving boy?

Fall 2014 Loki's health was good enough to enrol in a regular school setting. We chose the local Waldorf school. Within a few weeks, we had a completely different boy at home. Whereas his medical needs greatly decreased during his special-ed years, his social-emotional well-being stalled. Loki feels safe when others truly see and understand him. This was not the case his last year in special-ed (his first year there was great). He showed significant behavioural issues, anxiety to be left at school, with screaming and crying. When he started at his new school, we saw a new boy. His extremely experienced teachers new exactly how to make Loki feel safe and seen. Even writing this now, years later, fills me with both profound sadness as well as a deep sense of gratitude for his “new” school.

Still, Loki is doing very well in school. He has an amazing teacher who no doubt has a great impact on how well Loki develops. Although we certainly see some signs of attention deficit, which is a common lingering issue associated with extreme premature birth, academically he is doing just fine. Loki is a curious, inventive, strong-willed, energetic, sweet, sensitive and smart boy. But most of all he is generally a very happy child who skip-hops through his day. What else can we wish for?

With regards to his medical needs, during the Winter of 2015 Loki took a huge step. After not using the feeding tube for six months, Loki took out his own “tubey” at the hospital. He was able to drink enough to keep his one kidney healthy, and with several dietary supplements, he was able to gain weight. Loki was both proud and sad. He only remembered himself as a boy with a feeding tube. We also spoke with gratitude about his “tubey” because it saved his life. Ceremonially we decorated a little treasure box and wrote notes to thank Loki’s tubey for helping him life. His wonderful Dr. Draaisma at UMC Radboud was patient and attentive as ever when Loki, induced with anxiety, was afraid to actually pull his tubey out.

In the years following this major, glorious event, Loki keeps getting healthier. Yes, his kidney still shows hydronephrosis, and yes this will need to be monitored the rest of his life with most likely some major treatment at some point in time. But the proteinuria is no longer detected in his urine and the urine concentration disorder has been stable for several years. He needs to drink plenty, but no longer the large amounts from the past. And although he still does not like this, he can and will do it with reminders and a set schedule. His pulmonary health also shows significant improvement. Where he would catch a pneumonia each time he had a cold, he no longer needs lung medicine during the summer months. Moreover, last fall (2016), Loki had an airway infection which he overcame without antibiotic treatment. This is incredibly good news, as he has had a large amount of antibiotics throughout his life, compromising his sensitivity to some of them.

However, the most recent development with his gastric emptying issues happened just yesterday. As blog readers will remember, Loki suffered from extreme delayed gastric emptying for many years. The combination of this with his kidney issues was rather unfortunate. When Loki received motilium, a medicine to resolve nausea and stimulate the emptying, we entered a new, much more bearable zone.  Slowly, slowly, we moved from throwing up many times a day and feeding tiny bits of homemade tube feeding all day long, to where we are now. And where we are now, we never dared to hope for.

In Fall 2016, Loki seemed to gain weight sufficiently. His dietary food was, one at a time, taken off the schedule. His doctor decided to stop it altogether and see what happened. And Loki did and does well. He still needs a few extra small meals to ensure plenty calorie intake, but he does it all with regular food! In addition, increasingly we look at him and wonder how he finished his plate without us asking to take a bite, and another and another. And then yesterday (April 7^th, 2017) something huge happened: Loki took his last 1 millilitre of motilium. Completely against all odds and expectations, after trying many times before, we were able to phase out that medicine. Somehow, at the age of 8,5, his stomach decided to start doing what it never was able to do: empty without the support of medicine. This moment is the inspiration to write a post. We want to share how in awe we are with this amazing boy.

How hopeful and exciting that even after 8 years, our lives increasingly show signs of normalcy with regards to Loki’s health!

Photos Fall 2013

Group shot 1: 

Group shot 2, the selfie:

Loki celebrated his 5th birthday. Our neighbor / friend made him a special Gruffalo cake:

Hapy birthday from Nana:

We hosted a birthday party for his schoolmates, and Loki's sitter Marion helped:

Birthday at school:


Lately, Loki is very keen on feminine things, and wanted a Snow White dress for his birthday:



Group shot 3:

Smiles:

A special gift, a book illustrated by a friend which also included a portrait of Loki:

At the school Christmas performance, Loki was an angel:

Christmas with cousins:

New year's visits:

New year's eve beauty salon.

With Omi:

Dress up:

Loki's page in his classroom:

The end of an era: the last (frozen) homemade tube feeding. We used to put in a LOT of effort making this, but we have not used it in ages.

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.