Here We Go Again

When Nicholas had his hospital stay a month ago, we had been asked if we had ever noticed his pupil sizes were different. We really hadn't, and at the time figured that, with as many medical professionals as he had involved in his care, someone would have noticed that before a hospital stay. It was eventually decided that it was likely a side effect of the pressure changes from the big change in the shunt and that it should resolve itself.

Saturday morning, I was rocking Nicholas back and forth in my arms because he had been very fussy the whole morning and he was staring up at the ceiling. I noticed that he was tracking something on the ceiling with his eyes but that when I moved him to a certain spot, his eyes would sort of jerk back to the center. It was a very rough movement and I was a little concerned and decided to watch it. We ended up going to lunch and Mike noticed while we were there that his pupils were still different sizes (they've not been the same size that we've noticed since the last hospital stay) but that the sizes were very pronounced. One was very small and the other was very large. We googled (you should really never do that!) and found that one of the main symptoms of a brain bleed is different sized pupils. That combined with the fussiness got us a little worried.

We called the on-call pediatrician who asked us to call the on-call neurosurgeon (NSG). The NSG who had placed Nicholas's shunt actually ended up being the on-call this weekend in a stroke of luck. He told us that if our guts were saying to get him checked out, he agreed with us and suggested we head to the emergency department.

We got to the ED and the doctor came into our room almost immediately to check his eyes. She stated that one of his eyes was reacting sluggishly and was slow to constrict under light. She asked if he would need sedation for a CT, we confirmed he did not, and the nurse whisked him and Mike off to Radiology. About an hour and a half after he returned, the new doctor (somehow we always show up during shift change!) told us that while they hadn't seen anything worrisome, they wanted to admit him overnight for observation. They brought us upstairs to the Pediatric Intensive Care Unit (PICU). We asked why he was being admitted to intensive care and were told that because things can go from fine to terrible in a very short time due to his medical complexities, they wanted him under the care of a higher level unit just in case. Made sense to us.

Early Sunday morning, the NSG came in to see Nicholas before I got there (Mike was there having spent the night and getting almost no sleep). He confirmed that the shunt was working perfectly as far as he could tell but that he was wondering if Nicholas was having some seizure activity. We had been warned even before Nicholas was born that people with hydrocephalus are at higher risk for seizures and so we were not surprised by this. Worried, of course, but not surprised. The NSG suggested to the floor PICU doctor that they consult in a neurologist and order an EEG to see what was happening.

The neurologist ordered a standard EEG. I had never seen an EEG before, but it was a little unnerving to watch. First, they measure his head to determine where to place the leads. Then many leads are "glued" to his head and once those are all placed, gauze is wrapped around the leads to make sure that nothing moves. The first part of the EEG involves placing a strobe light very close to his face and strobing at varying speeds. Essentially, they are trying to force a seizure to happen so they can catch it on the monitors and the neurologist can determine the best method of treatment. Nicholas actually loved the strobe lights. He was very upset when he started the test but every time they turned on the strobe lights, he stopped crying and just stared at the lights.

We had to wait for the neurologist to read the results. Once he read the results he came and met with us. He ended up meeting with Mike because I wasn't there, but we found out that there had been no seizure activity whatsoever on the EEG! Fantastic news! Mike asked why the pupils were different sizes and the neurologist said that's actually a variation of normal and that sometimes you can see it more prevalantly from a certain angle or in a different light. We asked why the pupil had been sluggish and the neurologist said that he couldn't answer with 100% certainty but that he wasn't concerned because since being admitted, his pupils had been equally reactive, so they were unable to duplicate what the ED saw. The theory he came up with was that he believed Nicholas's shunt may have turned on and that's why the size difference was more noticeable and likely also caused the sluggishness.

We also asked about looking for seizure activity in the future. The neurologist stated that in the vast majority of hydrocephalus cases that he has observed, if the patient was going to be prone to seizures, it would happen almost immediately after the shunt placement. Since Nicholas has had the shunt for almost 5 months and since they did everything they could to try and force a seizure and he hadn't had one, he felt like we were in the clear for seizure activity in the future. Good news for once!

With both the NSG and the neurologist deciding that Nicholas had no issues that required intense follow up care, Nicholas was discharged. We were told by his nurses that they loved him but they really didn't want to see us again and we echoed the sentiment.

7 Years Ago

Seven years ago, I stood in a room with my sisters, my mom, and my two best friends. I was surrounded by excitement. A hairdresser appeared and with what seemed incredible speed, got five ladies' hair done up. Bridesmaid dresses donned. A garter. A big white dress. Photographer taking picture after picture. A walk down an aisle with my dad at my side to meet you. We stared into each other's eyes and proclaimed our vows to each other. We promised to love each other forever. We promised to stand next to each other through good times and bad, sick times and healthy. We were so in love. We were so excited to start our life together. We went to a party and ate cake, delicious food we had sampled months ago, danced all night long, and then the next day we were off to an exotic destination and just enjoyed being married.

Seven years ago if you would have told me that our vows would be put to the test over and over,
I wouldn't have believed you. If you would have told me that being married meant you sat by my side while I threw up everything I ate for four months straight through two pregnancies I would have thought how unromatic that was. Seven years ago if you'd have told me that sometimes the most kind and romantic thing we can do for each other is let each other sleep in on a Saturday and keep the kids quiet so you don't wake up, I would have laughed at you. Seven years ago I would have never understood how much it meant to have you as my rock when we were told they couldn't find the heartbeat. Or when they said something is wrong with Twin B. You don't think about those things on your wedding day.

Seven years ago if you would have told me that I would feel more joy at hearing that the pregnancy after the miscarriage was "a happy, healthy, normal pregnancy" than I knew I could feel, I would have scoffed. Seven years ago I couldn't have understood just how difficult it would be to be infertile and to realize it's a journey and a battle that we had to go through together.

Seven years ago I would never have understood just how much joy and love there is in sitting at home together on a weekend night and cuddling while watching TV. Listening to the sound of our kids breathing while they sleep. Knowing that the fact that we fell in love brought these three fantastic humans into this world. Seven years ago, I knew I wanted kids, but I never realized just how much more I would love you seeing you as a father. Watching you make silly faces at Emily, or hold Nicholas in the hospital to keep him from being scared. Watching the pride beam from your face as Zach stands up in front of a crowd of people at his taekwondo tournament and does a great job. Seven years ago I loved you deeply. Seven years later, I love you so much more.

I never understood exactly what shaped a marriage. It's the highest highs, the lowests lows, and weathering them together. It's being frustrated by something you do and then choosing to forgive and move on. It's laughing together, fighting and making up, creating a world where our children and our marriage can thrive, and sometimes, just hanging on by a thread. It's being a rock when the other is weak, and being comfortable to be vulnerable enough to be weak when you need to be. It's learning how to communicate, and learning how to say I'm sorry. It's holding hands in the car or being the one to get up with a crying baby in the middle of the night so the other can sleep. It's inside jokes. It's standing with one another against difficulties, it's weathering the storms by huddling together.