May 26, 2008
The first night I visited the babies in the NICU I had an experience that I will never forget and that changed my outlook on everything. I was in complete shock looking at all the machines, doctors, nurses and lights that first night as our little babies were in incubators fighting for their lives. At that very moment I decided that I was not strong enough to handle any of this, so I prayed. I made a decision to hand the outcome of this over to God because I could easily see I had absolutely no control over the situation and no amount of worry was going to help us out. I told Him that this was all is his court because I could not deal with it. At that very moment, I had an peculiarly comforting feeling wash over my entire being that seemed to be telling me that everything was going to be okay.
For the most part, that moment carried me through that whole experience, but there were many exceptions. When we found out about Niklas's brain bleed, we were told it could be a year or two before we would know what kind of effect this whole thing would have on him. I would be lying if I said that I wasn't worried sick, but I did keep reminding myself of that moment in the NICU. Coming home with three tiny, sickly looking babies on oxygen caused me to question things more than once, but here we are almost 1.5 years later. Things are not perfect, but I have said before that perfection is boring. I try to never forget how blessed we are that the triplets outcome has been as good as it has.
So here we are, year 2 at the cottage with the Triplets (click here for year 1). Gabbie is once again sporting her bikini, and I keep thinking that there are about 10 more summers in which I will think bikinis are cute on her. We spent the weekend cruising around on my parents pontoon boat, and all 3 couldn't get enough. In fact, this weekend was the best Lukas has ever been. He was completely sublime on the boat, just sitting there with a smirk on his face (NO, he wasn't REALLY drinking Miller Lite). Every time Lukas sees a bird he screams "Guk, Guk, Guk Guk" in a high pitched voice at the top of his lungs. I am not sure what that means, but he sure does love birds. Niklas actually took a ride on the jet ski and was giggling just about the whole time. We never went any faster than idle speeds, but he loved just about every minute of it. I am no longer the father of preemie triplets, I am the father of three rambunctious kids. Thanks Mom and Dad for letting our little tornado rip up your cottage. Mackenzie, if you are reading this, you were greatly missed!!
May 15, 2008
Over the past few weeks it seems as though it's been something new just about everyday. Dancing is all the rage with the trio these days. Lukas will giggle and wildly swing his arms back and forth while twisting his torso. Gabbie likes to stand up, lean against a wall or chair and shake her booty back and forth. Niklas enjoys bouncing up and down while performing a "raise the roof" type motion usually while leaning up against a piece of furniture. However, on a couple of different occasions, I have caught him doing this hands free. Unfortunately, as soon as he realizes that he is standing he gets weak in the knees and sits down. These guys are all really close to walking right now.
Gabbie is shaping up to be the talker in the family and it's looking like she is happy to take on the "life of the party" role. She says "Buh-Bye" and waves her hand at every passing stranger whether they are coming or going and charms them almost every time. It seems as though "Buh-Bye" is equivalent to aloha in her mind. Another one of her other new words is...drum roll please...DADDY! I can't help it, I love it and absolutely turn to butter every time she says it to me. The girl has me completely wrapped around her finger. Other words in her vocabulary include Buhd (bird) and Gucky which means Yucky or Ducky depending on context. Niklas's favorites are Wow and No, which I suspect he may be using defiantly. Lukas is the quiet one, although he has his moments of babbling.
UPDATE - I just realized that in the previous paragraph I called Lukas the quiet one. The kid who was about to drive Greta and I insane a few weeks ago, the kid whose scream I'm sure caused our internal organs to bleed is now the quiet one. Go figure.
May 7, 2008
We rarely think about Niklas's shunt anymore, but 2 occasions remind us it's there...
- Wipe Outs - Niklas has many strengths, but grace is not one of them. Every time he falls down and whacks his head we think "Ouch, I hope he didn't damage the shunt".
- Puking - One of the signs of shunt failure is vomiting. As luck would have it, Niklas is a puker. He is much better than he used to be, but he is still the most likely to throw up although it has never been shunt related. Nonetheless, everytime he heaves we can't help but wonder.
Today we had an incident, but some background first. Niklas has Hydrocephalus, which is a condition in which cerebral fluid does not properly drain from his brain. Left untreated, fluid buildup would cause cranial pressure and would eventually be life threatening. To treat this condition, Niklas has a shunt or valve that drains this fluid from his brain into his abdomen. Niklas's first shunt failed and was replaced with an adjustable one that drains fluid when pressure in his head reaches a certain point. This threshold for drainage can be adjusted using a powerful magnet the size of a stereo knob. This device has settings ranging from 0 (the most drainage) to 3 (the least amount of drainage). Niklas's setting, for the most part, has been 1.0. In the first few months following the implantation of this device, it mysteriously changed settings. You can read more about that here.
Naturally, Greta and I became mistrustful of this device and were always second guessing things. We figured life would less stressful if we could obtain the device used to check the pressure setting. Basically, this kit consists of a magnet to adjust the shunt and what amounts to a compass to measure the current setting. As described in the previous post, this device is considered a "Medical Device" by the FDA and is not available to patients. The fact that diabetics can control their condition but hydrocephalics cannot even monitor theirs infuriates me to no end, but that is another rant. Greta, however, is from Europe and a couple of phone calls enabled us to get our hands on the "goods". We have periodically checked his setting over the past 7 or 8 months and it has always remained constant.
Ok, on to today's incident. In our closet we have a shelf. On top of that shelf lies a very powerful refrigerator magnet which I had forgotten about (I tried to get rid of all magnets in the house because of Niklas). Our kids rarely go in our bedroom, and have never been in our closet until the past week or two when Niklas and Lukas discovered the shelf. Yesterday it dawned on me that while playing with the trinkets on the shelf, Niklas would have been in close proximity to that magnet and it could have messed with his shunt. Since we hadn't checked the setting in a while I told Greta that we should probably do it in the morning.
So, this morning I measured the setting of the shunt only to discover that it had jumped all the way to 2.5 from 1.0. I must have rechecked it 100 times to verify things, but I kept getting the same result. At that moment Greta and I were overcome with the feeling of being run over by a truck. You can't help it, these kind of things just ruin your entire day. Although I have the tool to adjust things, I am not a neurosurgery expert. The fact that the setting changed necessitates a trip to the hospital in my opinion. But since we were going there anyway, I figured I'd adjust the shunt myself just so I can have confidence in doing it. We are going to Europe this summer and Greta may stay for a month or longer. If something goes awry while she is there I would like to know that we can temporarily adjust things until we get back. Frankly, it couldn't be more simple and I had no problem setting things back to 1.0. We made the trip to neurosurgery and their measurements confirmed my adjustment. They proceeded to tell me that the more they learn about this particular shunt the less "accurate" they perceive it to be. No two measuring devices read exactly the same and factors such as the patient lying in different positions can cause different readings. In fact, this particular device seems to be more prone to overall failure. Its disconcerting to know that a revision is almost inevitable.
The good news in all of this is that Niklas didn't seem to be affected by his shunt changing its setting. Part of me likes to believe that maybe he really doesn't need the shunt and that the fluid is being absorbed naturally by his body. This is not out of the realm of possibility, but it is very rare. In any event, I thank God we have a malfunctioning shunt as opposed to a malfunctioning boy.
May 3, 2008
Last Sunday was the March for Babies at Hudson Mills MetroPark in Dexter, MI. It ended up being a beautiful day, albeit a little chilly in the morning. My mom came out for the event, but she had to cheer us on from the sidelines due to recent surgery on her foot. It was a great day, a great cause, and a lot of money was raised. My back, on the other hand, was kind of a mess after walking 2.8 miles with a kid on my shoulders the entire time. Thanks again to everyone who has supported us and kept the trio in their prayers.