Baby Steps

Nicholas originally had a goal with his physical therapists that he would be independently walking by age 2. Obviously that hasn't happened, but he's still working very hard on getting that goal. His physical therapist at his school suggested that we get him orthotics to give him more support while we build up his leg strength to support standing and walking independently.

We ordered the orthotics (not much insurance drama this time!) and were lucky to have the same person and company who made his helmet make the orthotics. He is what is known as SMOs (Supra-Malleolar Orthoses). They encompass his whole foot and rise to just above where his shoe stops. He took to wearing them very quickly and seems to be doing well with them.

His physical therapist at school has been trying different ways for him to walk and has found that he liked walking with a gait trainer best and really took to it. She had tried using the push walkers that many babies use to support walking but found that he was too tall for most of those, and that they didn't have the strength to hold the full weight of a two year old. The gait trainer supported him and also gave him the confidence to walk on his own.

We were very lucky that the physical therapist was able to borrow a "floor model" of the gait trainer from the manufacturer before we had to involve insurance and authorizations to see if it would work. Once it was determined that he was doing very well with that, we decided to order one of our own. It took about two months total between placing the order, getting the documentation for medical necessity together, the measuring, the build, and the delivery, but Nicholas finally got his own walker last week and he is loving it. Suddenly, there are places viewable in the house that he's never noticed before. Suddenly, he can keep up with Emily and Zachary when they take off to a new game. Suddenly, he can control his own direction. He's so excited and I think with the additional assistance of the walker, he'll gain the strength and confidence he's currently lacking to walk on his own.

It's amazing to watch him get stronger and stronger - this past weekend he walked for significant periods of time through Disney! He's such an amazing little warrior!

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!

Whoops I Did it Again

Things have been absolutely insane around our household and I have been terribly terribly remiss in updating. I apologize and promise that it's been mostly good news that kept me away!

In mid-August, I started my new job. While it's a big change from what I'm used to, it's really a fantastic company to work for and it's great to feel challenged to learn something new. With the new job came many new things for our family - for the first time the twins are in daycare. We found a school that specializes in special needs children but also accepts "typical" children, and luckily they had space for both Emily and Nicholas! We've seen leaps and bounds of development from Emily who is now trying very hard to talk. She's doing very well, and is even attempting sentences now! Nicholas is trying to emulate the older kids (they are in a classroom for 18 months to 3 years old and are the youngest of the group), and we've noticed him verbalizing a significant amount also, along with working on ways to get from point A to point B more efficiently and voluntarily going to a standing position.

Also with the change, Mike was able to move back to a day shift at work which has been amazing for our family. We can actually eat dinner together most evenings (he still works news - breaking stories still happen), he gets to be more involved in Zachary's taekwondo, and we actually feel like a family again.

Things have been pretty quiet here, albeit incredibly busy with life, but nothing out of the ordinary until recently. We had noticed that Nicholas's g-tube was leaking a little. We mentioned it to his pediatrician at his 18 month check up and they told us that the button may be sized a tad small since they've never resized since he had his g-tube placed at 3 weeks old, but that we would keep an eye on it. A brief lesson in g-tube sizing: Nicholas was wearing a 14 french 0.8. That means the part of the tube that actually goes through his abdominal wall into his stomach was 14 french (a form of measurement) around and 0.8 mm long. We noticed the leaking getting worse, so we went ahead and changed the tube. It continued to get worse until almost every feed, he would leak so significantly that his entire shirt would be soaked and smell of stomach acid.

On a Sunday morning, we noticed that his belly around his g-tube site was red and raw. He was screaming in pain every time we fed him. We called the on-call pediatrician who told us that the children's hospital emergency physicians are all trained on g-tube resizing so we should take him to the emergency room to have it looked at. He also mentioned that if we didn't feel comfortable with the emergency room physicians resizing the button, the general surgeon who placed Nicholas's tube originally was actually on call and in the hospital that day. Mike whisked off to the emergency room for what we figured would be an easy fix. After several hours (things do not move quickly in hospitals), they were home. Nicholas had a freshly placed 14 french 1.2 button. He was past due for a feed, so we set him up and started the feed. Nicholas immediately began screaming in pain and the hole where the g-tube button is began leaking so badly that we were actually unsure if any of the feed was even making it into his stomach. Mike packed Nicholas up and took him back to the ER. The surgical resident came down and looked at his g-tube. He decided that Nicholas appeared to be between sizes - he thought a 14 french 1.0 would be too small but a 14 french 1.2 was just slightly too big. Unfortunately, there is no such thing as a 14 french 1.1. He left the decision up to us, but suggested we stay with the 1.2 because scar tissue would form and until then, we could pack the site with gauze to kind of build up the distance and hopefully stem the leaking. He was wary of switching the tube again simply because Nicholas was already in so much pain that he didn't want to add to it.

We took his suggestion and called the surgeon's office for a follow up visit. We were able to sneak into an appointment on Wednesday and the surgeon ended up changing the tube at that visit back down to a 14 french 1.0. At that time, Nicholas was diagnosed with a chemical burn from the stomach acid leaking out of the g-tube site. He was prescribed a topical ointment and we were told to attempt to let the site air dry as much as possible.

By Friday afternoon, we thought things were getting better. As I sat in the chairs at Zach's taekwondo class, Nicholas became very agitated. I was holding him, trying to calm him down, and I realized his onesie was soaked through again. I took him to the bathroom to try and get some cool water on his belly until we could get home and I could change him and fix the dressings and that's when I realized that blood was pouring out of his g-tube site from beneath the button. I asked the director of the school if Zach could stay there (he had demo team practice later that evening) until Mike could get off work and meet him there, grabbed Emily and Nicholas and headed to the hospital. Zach was treated very well while I was off - hanging out with his favorite instructors and fed delicious food from a mom of his friend who graciously took it upon herself to run to Publix and pick up some food for him.

The ER doctors consulted in the surgical team again who decided they would like to see an X-ray just to make sure that at some point during all the button changes over the past week that his stomach hadn't disconnected from the abdominal wall and that we had just been feeding his abdominal cavity for a week. This can happen early in the g-tube placement process as scar tissue hasn't formed to adhere the stomach to the abdominal wall yet, but is a highly unlikely possibility after having had the tube for almost 2 years, however, we agreed with the surgical team - better safe than sorry.

The X-ray found that there to be no problem with the placement of the tube and it was decided that the bleeding was from irritation of the chemical burn. I had made my way back to taekwondo to pick Zachary up from demo team practice (and brought Emily back with me), so Mike was sent home with wound care instructions. The tube is still leaking somewhat, thought it's not nearly as bad as it was during this time. We've gotten the worst of the chemical burn under control, though it's still healing. The best conclusion we can come to is that it was a combination of things - the initial tube too small, transferred into a tube that was two big and allowed for significant leakage over three days before it was switched back out. Beyond that, he's currently getting his molars, so he's had more spit to swallow and because molars really suck to get, he's been crying more frequently than he normally does. Crying causes him to bear down, and may be contributing to the leaking.

Hopefully this will eventually just be a blip on the radar pretty soon. I feel like we're getting close to the end, but it's been a frustrating process.

Eye See - on the other side

Because he had surgery first thing in the morning, Nicholas was not allowed to eat past midnight on Thursday night. I fed him his 9 p.m. feeding and watched him for a few minutes. I knew that this time tomorrow night, we'd be about 12 hours post-surgery. I wondered what that would look like.

We'd been told the risks - they were low and few, but there are always risks with surgery. The biggest risk was that the surgery wouldn't fully work and that the issue would be either over or under corrected.

To be honest, we still don't know if that has happened. We won't know for several weeks once the swelling has gone down completely and the eye has healed from the trauma of surgery if it's worked or not fully.

Friday morning, Mike and Nicholas left crazy early to get to the surgery center by 6:15 a.m. We had decided that it made more sense for Mike to go with Nicholas and me to stay home with Zach and Emily. I got pictures of Nicholas in pre-op, dressed in his tiny hospital gown and happily watching Disney Junior.

I got a call when he was taken back to surgery. I got a call when the doctor came out and said he was done, and I got pictures of a sleepy little man when Mike was allowed into recovery.

When he was discharged and they got home, I got sweet little cuddles from a groggy, red-eye child.

We put him down for a nap and he slept for some time.

Over the holiday weekend, he remained off and on groggy, probably the efforts of his little body to heal itself. But he was never grouchy. He remained the sweet little guy who thought everything his siblings did was hilarious. He continued to work on his modified army crawl to get to the toys that he wanted to see. And every time we turned around, it seemed, he put himself into a sitting position.

It was driving us crazy to know that he could do it but that none of us had seen it happen yet. We really just wanted to know how he was doing it.

Nicholas had his follow up with his ophthalmologist today. His eye is healing quite nicely, the redness has reduced significantly, the crusty yucks that were leaking out have slowed to almost nothing, and as far as we can tell, his eye is in a much better position than it was. He has another followup in 6 weeks and we will have better answers then.

And yesterday afternoon, I finally saw him put himself in a sitting position. He has decided recently that sitting seems cooler than laying down and continues to sit up more and more frequently. He decided to show both Mike and his physical therapist the trick and today in therapy, with some help, he pulled himself to a standing position against the couch and stood very confidently for some time.

Checking Off Milestones

In all of his recent evaluations, Nicholas has been determined to be about eight months behind in his physical development. He's maintained a steady eight months behind in development level, which is great because it means, while he's behind his "peers", he is staying on his own track and isn't falling behind.

He is a few months behind in cognitive development, and is actually age appropriate, or even advanced, in social skills (which anyone who knows him will tell you - our giant flirt).

So, even though he's currently eighteen months old, he's technically considered seventeen months old developmentally since he was born a month early, and he's measuring at nine to ten months in his motor skills development level.

As I've mentioned before, Nicholas isn't crawling or walking yet, and we honestly don't know when that will happen. We're fairly confident that it will - he's proven himself to be a singularly determined individual, but it will be late. Many people with hydrocephalus, especially at the severity that Nicholas had, will never walk, so we're grateful that he likely will, even if late.

He's been sitting up on his own for some time now, as long as someone helps him into a seated position. His core strength has grown that he now sits for the entirety of a taekwondo class (while playing with the other babies), and it doesn't exhaust him. Early Saturday morning, I was up with all three kids. Zachary was watching cartoons, Emily was playing, and Nicholas was practicing getting into his crawl position. Suddenly Zachary says, "Mom! Look at Nicholas!" I looked over and Nicholas was sitting up next to the entertainment center, trying to get the DVD player. I said, "Oh wow, that was nice of you to sit him up, Zach!" Zachary said, "Mom, I didn't!" I asked him if he was being honest, did he really not help Nicholas at all? Zachary swore that he hadn't helped Nicholas up. Which left the conclusion that Nicholas had gotten himself into a sitting position for the first time ever. We watched him throughout the morning and it never happened again.

Until nap. We went to get him after his nap and he was sitting up in the crib. We knew at that point that he had to have done it himself. That night when we went in to feed him his 9 p.m. feed, we found him sitting up in the crib instead of sleeping, laughing and incredibly proud of himself. Since then, we've found him in a sitting position several times, though we've never actually seen him put himself there.

This little guy continues to amaze us, and we are so proud to be able to watch this journey of his!

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!

#Orlandostrong

The call came in at before 5 a.m. Sunday morning. It woke both of us up, and we both immediately knew it was probably bad news. You don't typically get calls before 5 a.m. on a Sunday morning with good news.

"I'm getting called into work. Shooting. Downtown."

Half asleep, my first reaction was anger. I asked if he was on call this weekend, no. I asked why he had to go in, his response sounds like it's a big thing. Before I even had time to fully process, he was kissing me goodbye and was gone.

I turned on the news to see what was so big it took him away from our family on that Sunday. And was met with horror.

The first time a mass shooting hit too close to home, my friend and I were sitting in my college apartment watching in shock and agony as Columbine unfolded. We were an hour north and felt helpless. We were glued to the TV all afternoon and when a candlelight vigil was announced in Denver, we jumped in my car and drove down. It didn't matter that we had class in the morning. It didn't matter that we had to drive an hour one way. We just needed to be with people who were mourning like us. We needed to contribute SOMEHOW.

This time, it was seven miles from my front door. Seven miles. As we lay sleeping peacefully, seven miles away tragedy and horror were unfolding. As the sounds of Mickey Mouse Clubhouse rang cheerfully through my home, Mike sat in front of what used to be a nightclub. As the kids moved to the backyard and played in the sunshine, families were sitting in waiting rooms praying that the bullets could be removed, just seven miles from me.

I don't even know how to begin to comprehend the horror. To see #prayfororlando and #orlandostrong trending and know that the world has it's eyes zeroed in on my home. To the world, this is where Mickey and Universal and Shamu are housed, but this city is our home. We know the beauty in this city, the city that hosts the largest Pride parade in the US. The city that hosts the largest party for the special needs population in the the US. That celebrates its diversity and welcomes the world with open arms (as long as we don't have to drive down I-Drive for some reason). Sure, there are things about this city that we all wish were better, things about other places that we miss, but this is the place we've chosen to lay down roots and raise our children.

My heart is breaking for the victims and the families of the victims. I can't even begin to imagine the fear of the unknown, or the complete devastation when the unknown becomes known. I have no idea how those that were there and survived begin to move forward. How terrifying it must be to wake up in a hospital bed and hear you were shot in a mass shooting that has the eyes of the world on your town. My heart is swelling in pride, because as you look under this microscope that we're under, you see the good. People who were standing by in the streets became helpers. People stood for hours in the hot sun to give blood to those in need. Appointments for later in the week are completely booked. It is impossible to give blood in Orlando right now because everyone is doing it. A gofundme designed to help the victims with whatever they need raised over a million dollars in 11 hours. People want to help. They want to connect. They want to do good. Rainbow flags raised in solidarity for the LGBTQ+ community all over the world.

My heart hurts for the first responders who had to walk into that horror and who did so without hesitation. For the EMTs and paramedics who transported gravely injured and scared individuals just a quarter mile down the street. For the medical staff who jumped into action so quickly and likely saved lives. For the media who had to stand outside the scene where such horror unfolded, who had to speak to family members, who had to tell the story and remain professional, remain unemotional.

And yet, in the wake of all the horror - hope. Restaurants that were closed opened and cooked food for the volunteers, for the first responders, for the media. Vigil after vigil after vigil where people hugged and cried together even though they had never met before.

We chose to not tell Zach about what happened. He's so little, he's still so innocent. He doesn't need to know that sometimes the world can be a confusing, and scary, and evil place. The hope, though, that makes me feel more comfortable for the future that he and Emily and Nicholas are inheriting. We are trying so hard to teach our children that if there is a choice, to always choose the path of kindness, compassion, and love. And that's the legacy I hope we leave for this world.