Days of Kai: So you had a stroke. Now what?

Okay okay okay. So a lot has happened since the last post regarding Kai's birth and stroke. But before anything else, I just want to say that Kai is doing great! So so great. Like some days I forget that he even had a stroke. Oh ya..... "stroke." The "S" word. A word I've come to realize that a lot of people don't like using. Kai's pediatrician for example likes to say, "birth complication." And his PT likes to just point to his head and avoid the word by any means lol. I mean I get it, it can be a touchy subject. So I just want to say, it's okay! Kai had a stroke. And even so, he is developing beautifully :)

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So... what's going on?

Well, the cause of Kai's stroke is still a mystery. It definitely bothered me for a while but now I'm okay with it. It happened and yes, it totally sucks! Do I wish it didn't happen? Of course! But I really don't see the point in worrying about it anymore when all I see everyday is a happy perfect baby. 

Ever since his stroke, Kai has had numerous doctors visits. He has three neurologists to be exact. Someone for neuro development, a stroke specialist, and a seizure specialist. He also has a team of therapists. The main therapist he sees is his physical therapist. Later on we'll know if he needs to meet with his other therapists. 

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What does a baby do for physical therapy? 

Great question. A lot of his "homework" is really just incorporated into his daily routine. His PT is really just making sure that he's hitting all his mile stones in a timely manner. As his mom, the person who is with him the most, it's really my job to watch for anything unusual. Together at home with dad, we work on everyday skills that babies should be doing.

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Any side effects of the stroke?

For a while he seemed completely normal. Eating, pooing, sleeping, and playing. Kai was a pro at all of these things. But as he got older and started doing more "things," we did notice a few red flags that we needed to monitor. 

Kai's stroke was on the left hemisphere of his brain, which controls the right side of his body.  Within the last few months, we noticed that Kai definitely prefers his left hand. He's really great at playing with his left hand while he struggles a bit with his right. Now, is it the stroke? Or is it because he's a lefty? We don't know. At this point its really hard to tell but according to his doctors, babies don't usually favor sides this young. In my heart, I believe that Kai will be completely fine no matter what. Even if he has a few delays, I know that he can overcome anything thrown his way. But I do worry sometimes. But that's okay. Mom's worry. It's part of our job descriptions apparently.

Oh ya, another thing we've noticed is that he's veeeeerry sensitive to sounds and vibrations. If you crinkle a plastic bag behind him, he FREAKS out! If the garage door opens while he's on his back upstairs, he FREAKS out!. Apparently sensory issues are common side effects of strokes. Sooo.... I guess Kai is born to be a singer. He's going to have excellent pitch haha. That's my takeaway from that. :p

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Oh Kai Kai.
We love you so much :) You make our lives so much better. I never knew being a mom would be so fun, and exhausting, and fulfilling. It's been my favorite job yet.

Well I think that's pretty much it for the update. I hope that answered some of your questions! As for regular baby updates and things... Kai is 10 months and he finally started crawling and rolling! It's pretty cool. He's also in the upper 80th percentile for weight, and lower 90th percentile for height. He's a big boy for sure. I can't carry him for very long without my wraps and slings.

Kai Kai the Koala baby :)

Days of Kai: A Stroke.

I think I’m finally ready to talk about our first weeks with Kai. For a while, even after we had brought our happy baby home, thinking about what he had gone through made me extremely sad. Talking about it was even worse. I don't think I've ever been such a cry baby lol. It was truly probably one of the most heartbreaking times I have ever experienced. But that's what moms do I guess. Hurt when their baby is hurt. Kai has made me love in a way I never understood until now. I know I know, it sounds soooo cliche, which is why I don’t expect those who haven't had children yet to understand. I honestly never did. But it really is incredible.

Before we jump in, I’d just like to say that other than the unfortunate amount of hair he's lost since birth, Kai is doing great haha! No need to worry. He is progressing extremely well and is the happiest little baby :) except for when he’s hungry. Hah :)

The day after Kai was born, Jerry and I dropped him off at the hospital nursery and went to a breastfeeding class. In one of the slides, the instructor talked about seizures; what to look for, how to identify them, and what to do. Jerry and I were thinking the same thing. Right before the class, we noticed Kai doing something what seemed like a possible seizure. But how would we know for sure? And why would our baby have a seizure? As first time parents, we had no idea what’s “normal” baby movements and what's not. So we kept the thought in the back of our minds, but honestly figured it was nothing to worry about. After the class, we picked up our sweet baby from the nursery and went back to our room. The three of us back together again, yay!

A few moments into relaxing in our cozy little hospital room, it started again. The little “seizure-like” movements. They’re repetitive, rhythmic movements affecting one or multiple parts of the body. Movements that you can't suppress. We called the nurse but unfortunately it had stopped by the time she got to our room. Once she left, he started doing them again. This time the nurse was able to see what we were concerned about, and back to the nursery she took him. At this point I was so confused. What's happening? What seemed like something so minor was suddenly becoming more and more serious. How can something be wrong with our perfect little baby?

While in the nursery, Kai had another seizure. Until this point they were very short, averaging anywhere from 1-3 minutes. This one lasted for twelve. Twelve whole minutes! Can you imagine how long that felt? I remember sitting there next to my baby, feeling so helpless as he lay there crying. The seizure continued to control his little body and all I could do was rub his hand, hoping he knew that his mama was right there next to him. Then finally, once the seizure had finally stopped, things began to escalate quickly. Within minutes we were in the NICU. Why was my full term, healthy baby in the NICU?

Here is where I’d like to say that the doctors and nurses were absolutely amazing! I'm so thankful for them. They were so quick and efficient with everything. But seeing your baby cry because of the needles and prodding is not fun. It’s sorta the worst thing ever actually.

Now by this point, Kai hadn’t eaten for about 4 hours and newborns eat about every hour if not more. He had an IV so he was definitely getting the nutrients and fluids he needed but of course, my mama heart was telling me that he needed me. All I wanted was to hold and feed my baby.

"Can we hold him please?"
"Maybe later tonight or tomorrow."

The next step was to perform multiple tests to see why the seizures were occurring, and to rule out anything infectious and life threatening. He was also put on Phenobarbital, which is a very strong drug that suppresses seizures. The results of these test wouldn't come back to us for a while but the doctors seemed hopeful that his seizures weren't caused by anything life threatening. At 8:30 pm that evening, we were finally allowed to hold Kai again. A short 25 minutes but we loved every second of it. 

The next day, Kai went in for an MRI. The doctors still hadn't found a probable cause for his seizures so the MRI was the next step. Jerry and I strongly felt that everything would be okay. We were hopeful that the MRI would come back completely normal, and that the seizures were a temporary blip in Kai's first days. But unfortunately, as you know, we were wrong. The doctors told us that Kai had suffered a stroke in the left hemisphere of his brain. Why and how is unknown, but they've chalked it up to "possibly something from the placenta." 

We don’t know what caused the stroke?? Something from the placenta?! Definitely not something I wanted to hear. Was it something I did? Was it something I didn't do? Was it because I had tripped the previous week? Countless reasons started running through my mind. But the wonderful doctor looked at me and said, "It's nothing you did, sometimes babies have strokes and we don't know why." This gave me some peace but naturally, I still wondered if there was something different I could have done for Kai. 

It took me some time to accept that Kai had a stroke and to move on from it. A part of me thought, "Why me? Why my baby?" But my amazing mom helped me remember that none of that mattered because we love him no matter what. And it's true! We are so lucky to have him in our lives. Kai has been developing so well and has been the biggest champ through it all. He's our little fighter baby. We think that the stroke actually gave him superpowers :)

I guess that's the bulk of what our first days with Kai were like. While in the NICU, I kept a journal of our everyday shenanigans and I plan on blogging those as well in the near future. We'll see how much this baby lets me get done. But for now, here's a couple of fun photos of Kai. He's quite the character.

a little jokester from the start :) this is how he felt about the stroke. lol

Here he is today at almost 13 weeks. Happy as can be.

instagram: @hey.im.marsa

32 Weeks. Three things and eating mold.

1. Lately heartburn has been a very real thing at night. Falling asleep while sitting up is soooo much easier than when I'm completely lying down on my side. I've made a "throne" as Jerry likes to call it, made of 4 pillows + my body pillow. It's pretty excessive but also necessary.

2. I'm becoming more aware of my body and how baby is doing. For the longest time I felt like I didn't know if he was moving or if it was just a gas bubble. But now it's pretty obvious and kinda fun :) Sometimes if I'm in the right position you can actually see him moving in there which is really weird but also cool. 

3. As we get closer and closer to our due date, I can't help but feel eager and anxious. Eager to meet baby but anxious about raising a tiny human. Wow, okay, this is really happening! Motherhood is the weirdest thing. No matter how many times you read about it, or hear about it, everything changes once you're actually experiencing it. For one thing, everything I do revolves around baby and I'm constantly worried about him. One time, we ate moldy salsa by accident (ew I know) and I FREAKED out. Pregnant or not I would freak out a little but my main concern was "did I just kill our baby??!" SOOO dramatic I know. It's kinda silly how worked up I get over the smallest things. I don't know what it is man... but motherhood I tell ya, it does things to your brain.

Baby Mobile: The Felting Dorcas 

10% off everything in their shop with "DAYLEE10"

Early Maternity Photos ++ A Photo Shoot Giveaway

22 week maternity photo shoot.

not much of a belly but still fun to see :)

If you live on Oahu or have plans to travel there, you need to enter this giveaway! Its worth $500 and I'm so excited about it! A full 1 hour shoot of your choice with Merry and Bright Photography. The mastermind behind my maternity photos. She is absolutely AMAZING and I couldn't be happier with how these turned out. 

At the time of my maternity shoot, I was only 22 weeks. Just barely showing. I remember purposely pushing my belly out as far as possible hoping that they would show up in the photos even just a little bit. And they did! Andrea (the photographer) was so sweet and did such a great job. Now that I'm at 28 weeks, it's so fun to see how much my belly has grown :) Thank you Andrea! I'll treasure these forever.

To enter the giveaway, just head on over to my instagram and look for the last photo from this post to find out all the details.

Good luck!

ll  @hey.im.marsa  ll