Two Years

Two years ago today, our crazy twins surprised us by jumping the gun on their delivery. They were originally scheduled as a c-section on December 31st. I was to be at the hospital at 5 a.m. and they were scheduled for a calm, 7:30 a.m. delivery. We had everything planned. My sister was going to fly in on December 24th and help us through the Christmas season and then she would stay home with Zachary until the twins were here. Once we were sure that everything was okay with the twins, she was going to bring Zachary to the hospital, let him come in and meet his siblings and then come in and meet them once Zachary was comfortable. The best laid plans....

Instead, I spent the majority of the day on December 20th feeling terrible. I laid on the couch the vast majority of the day. We had been scheduled to go to a friend's Christmas party and I ended up letting her know we wouldn't make it since I felt so terrible. I went to bed but was woken up at around 1 a.m. with contractions. I'd been having Braxton Hicks for several weeks at that point, so I got up and tried walking around and drinking some water to see if I could make them stop. Instead of slowing down or stopping, they got more intense. By 1:45 a.m., we figured out I was contracting every three minutes for 60+ seconds. Time for the hospital! Our backup emergency contact didn't hear her phone when we called, so Zachary ended up making the trip with us.

An emergency c-section with the anesthesiologist as my support person (since Mike had to stay outside with Zachary) and the twins were born three minutes apart. Both came out screaming, which was a relief, and I was shocked when I heard that Emily weighed 6 lbs 1 oz. That was a good healthy weight, considering they were born four weeks early.

Two intense years have passed since that day. It's been amazing and stressful to watch these two grow. Emily has turned into an outgoing and friendly toddler. She laughs easily, has no issue whatsoever holding her own against two, and loves giving hugs and kisses. Six months ago we were worried at her lack of speech, but she's recently blossomed and has begun speaking many more words and even trying to put sentences together. She adores Minnie Mouse, baby dolls, anything resembling a telephone, and puzzles.

Nicholas loves cars and books and electronics. He is happy the vast majority of the time and is desperate to keep up with his brother and sister. He likes to wrestle with them and loves to laugh. Bubbles are amazing to him - he will try to pop them and says "pop pop pop." He's recently begun speaking more words. He has amazed us with the amount of fight he has. This child simply knows no boundaries. As you all know from the many many stories I've posted throughout the past two years, we have been warned multiple times from multiple physicians that they don't know what to expect from Nicholas. That he very well may have devastating brain damage and that he may never walk or talk or eat. You also know that we found out that brain damage did cause Nicholas to have some issues with his suck/swallow reflex and that it was ultimately decided a g-tube would be the best way to feed him. And that he's continually working on improving that through speech therapy. And that he passed a puree swallow study but we're still working on liquids. And that he has moved from being able to sit up on his own, to a modified scoot, to a modified crawl. And that we fought against physicians to get him a helmet and shocked them completely by having the helmet work and fix his noggin. Last week, his physical therapist tried using a gait trainer with him and Nicholas used it to stand all on his own (with support). And then, he took two steps.

Two years ago, we were scared of having two babies at one time. We were worried about Zachary going from the only to the older brother of two. We didn't know what to expect with Nicholas. And while we've had some of the most difficult times we've ever experienced (we know far more about the inner workings of an intensive care unit that we've ever wanted to), we've also experienced some of the best.

Happy birthday Emily and Nicholas!

Eye See

After several weeks of patching, Nicholas followed up with his ophthalmologist where we learned that his patching regiment had done next to nothing to correct his eye. His left eye was still turned in pretty severely and the ophthalmologist was concerned that if we waited much longer, the possibility that Nicholas could lose his vision was high. Basically, because the signals coming from his left eye did not match with the signals (images) from his right eye, it would be possible for his brain to turn off the left eye to reduce confusion. In that case, the left eye would stop working and he would be blind in that eye. So, the doctor wanted to schedule the surgery.

He wanted to wait to hear from Nicholas's neurosurgeon first, so that we could be certain that the pressure inside Nicholas's head was within normal ranges and that pressure changes weren't causing the issues with the eye, and luckily, we just happened to have the annual follow up/ CT scans/ shunt series scheduled. As I blogged about earlier, that went very well and Nicholas was labeled stable by his neurosurgeon office - unless something happens (everyone knock on wood!), they would see him in a year. With the all clear from neurosurgery, we contacted the surgery scheduler at the eye doctor and Nicholas's fourth surgery was scheduled.

Today was his pre-op appointment and he was deemed fit to move forward with the surgery. Again, we have lucked out by getting matched with one of the best physicians in his field in Orlando. The eye doctor works specifically with children with neurological issues and has been performing this operation for over 20 years.

This is quite a common procedure, and also a fairly easy one (compared to the brain surgery and g-tube placement/nissen surgery he's had previously), but of course, it's still surgery. The ophthalmologist will be making a small incision on either side of his left eye. On the inner part of his eye, where his eye turns in, the muscle will be detached and reattached further back. The muscle on the outer side of his eye will be either folded and stitched to increase tension (the preferred method) or will be shortened and reattached. This will hopefully cause the muscles to pull his eye back into the correct alignment. Many people we know have either had the surgery themselves or have children who have, typically with fairly good results. The surgery has approximately an 80% chance of correcting the alignment issue with no further issues. It's possible to over or under correct, in which case we would try patching again and if that doesn't work, he would need to have surgery again. We're not going to look that far into the future though - we're going to just look at next Friday. He's scheduled to arrive at the surgery center at 6:15 a.m. on Friday, July 1st. The surgery will take around an hour (unless - in true Nicholas fashion - something strange comes up), and he'll be home that night. Everything I've heard, it's likely to be one of the easiest surgeries he'll have.

Thoughts, prayers, good wishes, whatever floats your boat are always appreciated. Send a little thought towards Orlando next Friday morning!

Let's get ready to army crawwwwwwllllll!!!!!

We have been noticing a significant jump in Nicholas's abilities recently. We've brought it up to his pediatrician, his therapists, and his helmet guy and are wondering if because of the fact that Nicholas is sitting up far more than he used to, the shunt is being assisted in removing the cerebral spinal fluid from his brain and there's more room for actual brain matter.

We also know that some pathways that were likely damaged because of the brain being squished in utero and during the first year of his life are beginning to regenerate. The human brain is amazing and baby brains are even more so. Even the NICU nurses and doctors told us that would happen - that pathways would likely regenerate.

So we are thinking that because of the combination of all these things, plus the addition of phenomenal therapists, Nicholas is having an explosion of development. He's been trying to roll over completely for ages now. He could roll over, but he wasn't great at it and he really hated being on his belly. I'm sure it was uncomfortable because he wasn't used to being in that position for the first year of his life. Plus, having the g-tube button may have hindered that somewhat too. He recently began sleeping on his belly and enjoying it. I put him down on his back and no matter how many times I've gone into his room to check on him and put him back on his back (wanted to make sure he wasn't stuck!), I'd go back in to find him on his belly again.

He's also started rolling himself around the room to get to places. Obviously this is pretty far behind developmentally, but it's something he couldn't do previously, so it's super exciting! He's become incredibly quick at getting places by rolling there. The other day, Mike and I went out on a date for his birthday (first "official" date night since the twins were born!). One of Zach's amazing taekwondo instructors babysat the kids for us (Zach planned a night of watching about 12 movies and eating popcorn). When we got home, the babysitter told us that Nicholas had been trying to sit up all night. We were floored. He had certainly never tried anything like that for us! She said, yep, he just kept trying. Because the kids were all up (babysitters let you stay up late and eat junk food - they're the BEST!), we were able to see Nicholas roll over to his belly, take his arms, and push up. It was nothing we'd ever seen him do before.

Most recently, I was home on a weekend day and was sitting on the floor playing with Zach. My phone was on the floor next to me and Nicholas realized it was there. He rolled over onto his belly and lifted up his head (getting stronger every single day) and then he started a slow but very determined army crawl towards my phone. I didn't believe it, so I called Mike into the room and moved the phone further away from him. He did it again. We've tried with toys, remotes, dog toys, a brother... but the only thing he currently seems motivated to army crawl for is a cell phone. So. Our cell phones have been hanging out on the floor recently a lot so that Nicholas can get more practice. His therapists were amazed when Mike showed them and Nicholas spent that entire therapy session army crawling for Mike's phone.

When I was pregnant with Nicholas, Mike and I were desperate for information about what hydrocephalus means to an individual. We were scared that we were setting Nicholas up for a difficult life. We needed to understand what we needed for him - how we would be able to help him, what help he would need, what the outcome would be for him. The high risk OB, the neurosurgeon that would ultimately become Nicholas's, my regular OB, even the pediatrician at Zach's office all told us there's nothing we can tell until he's here. The spectrum of how hydrocephalus affects an individual is so wide, and it can change throughout an individual's life, Now that Nicholas is here, I understand what that means. I've become entrenched in an incredibly supportive and strong hydrocephalus community since joining the HA to co-chair the WALK. Just among this small group there is a huge difference in how hydrocephalus has affected them or their loved ones. From a woman with over 200 brain surgeries to a teen aspiring to be a doctor, hydrocephalus has run the gamut.

So every day I remind myself what the NICU nurses told us - let Nicholas write his own story. Don't write it for him, just help him write it. And what an amazing story this warrior is writing.

Arrrr, Matey

Recently, we had noticed that Nicholas's left eye was starting to turn inward. It was new.

At his 15 month check up, Mike asked Nicholas's pediatrician his thoughts and the pediatrician suggested we take Nicholas in to see an ophthalmologist for their opinion. Nicholas had previously been to this ophthalmologist when we noticed that his pupils were two different sizes. This doctor specializes in working with children with neurological disorders and eye issues. He's the one who determined that Nicholas's pupils were just a variation of normal.

Mike was able to get in very quickly (the next day) to the doctor who ran a multitude of tests. He determined it wasn't a palsy of any of the nerves in the eye and when he checked the pressures inside Nicholas's eyes they were exactly the same as last time. The doctor explained that this is actually quite a common problem with kids with things out of the ordinary going on inside their brains. Since it is highly likely that Nicholas was born with some brain damage due to the size of his ventricles at birth, his brain has been very busy the past year re-routing pathways. As the ophthalmologist explained it to Mike, he thinks a new superhighway has been built near Nicholas's left eye and the pathway to his left eye has become a two lane road. As with cars, the likelihood that a significant amount of communication will be headed down a two lane road when a superhighway is near is slim to none, Basically, when Nicholas's brain re-built some of his pathways, they messed up the pathway to his left eye.

This isn't something that is overwhelmingly worrying at this point. Because he's still so young and his brain is still so dynamic, there are ways to fix it. But we need to fix it sooner than later, because what could eventually happen is that Nicholas's brain could decide the two lane road to his left eye receives so little traffic that it's not needed anymore. Then Nicholas could go blind in that eye. Nicholas and I had a talk before he left for his nose surgery on December 31st that we're trying to make 2016 a surgery free year, so I'm pretty sure this will work. He's wearing a patch on his right eye for three hours each day for the next six weeks and then we'll follow up with the ophthalmologist. Hopefully the additional requirements on the left eye will strengthen the muscles and beef up the pathway and everything will be resolved. If not, we could be looking at surgery to fix it. It's a minor surgery, but obviously we'd like to avoid that if possible.

Either way, he's about the cutest little pirate you'll ever see!