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!

Being Kind

Recently, I was having an issue with my phone that required genius intervention. Anyone who has any kind of an Apple product understands the wait that will ensue to get genius intervention at an Apple store, but my phone literally did not work (touch screen was completely non-responsive) and since we don't have any other form of communication than our cell phones, it had to be fixed.

I got home from work, traded out the guard with Mike as he headed off to work, and went over to the mall. When I got there I was told the next available appointment was in two and a half hours, so I took it and then decided the kids and I could go get some dinner.

As I've mentioned before in this blog, we tend to attract attention when we go places. People see the double stroller and are drawn to it. "Twins?" is the first word I hear out of almost everyone's mouths. And now that they're older and more interactive, people have even more fun with them. Nicholas, in particular, draws attention because he is so friendly. He loves to have attention - he will giggle and smile and try to touch you. He adores people.

On this day, I was a little out of sorts because I was stressed about the phone, and it's not easy to navigate a mall with a double stroller (one of whom really hates being strapped in now that she can walk) and a curious pre-schooler. Zach suddenly decided he had to go potty NOW. Luckily I had already made my appointment at Apple, so we walked as quickly as we could to the bathrooms and he declared that he would not go in there because it's for GIRLS. And of course, the family restroom was full. Both of the twins needed diaper changes too. I convinced Zach to come in and help me while I changed the diapers and then asked him to just TRY to go potty in the first stall nearest the diaper changing area. He asked me if that was for boys and I blurted out, "Yep, that's the one they save for boys who have to come in with their mommies!" He was delighted and ran right to the stall. I felt a pat on my back and I looked up to see an elderly woman smiling at me. "You're doing a fine job mama." she said softly, smiled at the twins, and then left the bathroom.

On this day, at this moment, as we headed out of the mall to go get some dinner while we waited for my Apple appointment, Nicholas was wearing his helmet, wearing his eye patch, and eating through his g-tube. All of this is normal to me. I am used to getting some glances, and even some curious kids asking, but it is something that people who know us really don't even pay attention to anymore. Zach had asked about going into a store and so I had stopped and was paying attention to him. I finished my conversation with him and looked up to a man standing in front of the stroller, gazing at Nicholas. The look on his face was one of pure disgust. He noticed me notice him and looked up at me.

"Is something wrong with him?" His voice was dripping with revulsion. It was like Nicholas was the worst thing his eyes had ever encountered. It caught me completely off guard.

I could have used the opportunity to educate him. I could have explained that yes, something is wrong, but he's okay. Instead, my mama bear took over and I growled, "Is something wrong with you?" He looked shocked, shot me a dirty look, and walked away. It hurt my heart with everything I had because I knew this wouldn't be the last time that he encountered something like that, and I lashed out. I don't know if he would have even listened if I tried to educate him, but I could have tried. My only saving grace was that Zach was distracted by the store he was trying to visit and I don't think he even realized the encounter happened, it was over that quickly, and that Nicholas had no idea what was going on.

Two very different encounters that left me feeling two very different ways. I wish that we all tried to build each other up. I wish that we all spoke with kindness and gentleness. I hope that I can teach my children to be the first encounter, not the second. And I hope that Nicholas can get through life without feeling the way that man made me feel, simply because he's different.

Success!

I remember getting the call. Mike was on the other line and he was so upset that his voice was shaking. Since he was just leaving a check up at the neurosurgeon's office, I instantly went on high alert.

"What's wrong?"
"The PA is refusing to prescribe a helmet for Nicholas."
"WHY?"
"He said he doesn't think enough fluid has left his brain. That there's not enough brain matter yet for a helmet to work."
"Turn around."

We had spoken to Nicholas's pediatrician. He had agreed that it was time for cranial band therapy. We had spoken to all of his therapists. They agreed it was time for cranial band therapy. Why would the neurosurgeon's PA disagree with everyone else? And what had he said that had reduced my normally even keeled husband to shake with anger and defeat? I told Mike that I was coming to the office and to wait there for me. He faltered - told me the appointment was over and it was probably too late - except that our next followup wasn't scheduled until after Nicholas was over a year old and by then it would be too late to start the therapy. I told Mike if I had to follow the PA or the neurosurgeon to their cars when their days were over I would sit and wait for them. I suspected that an upset mother is the last thing the physician wants in his waiting room full of patients, so we would be brought back pretty quickly.

I spoke to the receptionist and the office manager quickly came out to ask me why I needed to see the PA. I firmly told her that he was refusing to prescribe a helmet for my son and we needed to discuss his reasons. Not surprisingly, we were brought into a room fairly quickly and the PA walked in shortly thereafter. I asked him point blank why he felt that a helmet wasn't the answer for our son.

He gave reasons. Some of them were probably valid. I trust my son's neurosurgeon and his staff immensely. The neurosurgeon has literally been inside my son's brain, and the likelihood that he'll be there again before Nicholas ages out of pediatric neurosurgery is high. But they don't live our life. They get to go home and leave brain surgeries and other related issues behind them. They get to sit down to dinner and talk about things like school and the new HOA rules and what they're doing this weekend. So while the office is staffed with amazing people, their passion will never equal ours. It simply can't. I understand that. So while I have literally trusted them with my son's life, I was not going to sit by and let them make a decision lightly that had the potential to impact Nicholas's life forever.

His reasons included that there's little literature or research on hydrocephalus patients and cranial band therapy success. That it would likely be unsuccessful because the shunt was still working on the tedious job of draining his overfilled ventricles. That, sure, we would move the skull but liquid moves a lot easier than brain matter and so it would probably just move back. That he just didn't think it would work.

I looked this PA in the eye and asked him if it would hurt Nicholas. If it could hurt him. He said no, of course not. So I asked him why not just try? He said we could try when he's older and his ventricles are drained back to normal sizes. That he could have a cranial reconstruction surgery at that point. And, haha, he just happened to know a great neurosurgeon. We stared at him. I asked him why we shouldn't try something that didn't require surgery and that Nicholas would never remember and instead jump directly to a surgical procedure, further recovery time, and possibly something that would traumatize him as he's older.

Obviously you've all seen the pictures, so you know that we walked out of that office that day with a prescription in hand. That the next fight was with the insurance company to get coverage. That we won that battle too and that Nicholas's skull has been gradually been re-shaped by the helmet and a dedicated orthotist who shaves out pieces of the helmet and adds pads to help Nicholas's head become less flat and more symmetrical.

I previously posted that Nicholas was at 26 mm asymmetry when this journey started. That his was the worst case that the orthotist had ever seen. That the challenge of taking on a hydrocephalus patient was almost too overwhelming. And that it's working. The helmet is reshaping Nicholas's head to be less asymmetrical. While some of our goal was to fix his head for vanity reasons, the vast majority was that he was having developmental difficulties because of the head shape. He was having a hard time sitting up because one side of his head was heavier than the other. He was having trouble rolling over because he had a giant cone in the back impeding him. Last month's measurements showed Nicholas at 9 mm asymmetry.

Nicholas met with his orthotist today and measurements happened. Accounting for some human error, Nicholas's head now sits at 5-6 mm of asymmetry. A head is considered to be within "normal" ranges of asymmetry when it's under 5 mm. It worked. It worked exactly like we hoped it would. And without surgery. Without a traumatic procedure. Sure, he had to wear his helmet a little longer than the average therapy length of 3 months, but so what? He'll never remember that time. Clearly this was a fight worth fighting.

Cranial Band Therapy: The Beginning

We always knew cranial band therapy (or helmet therapy) was a possibility for Nicholas. Because he was born with such a large head it was incredibly difficult for him to move it and so he spent a vast majority of the first several months of his life on his back with his head in the same spot. This created a pretty significant flat spot on the back of his head. Beyond that, because he had so much fluid inside his head and it's less dense than brain matter, his skull bones that are not fused yet were able to be moved around more easily based on where his fluid was. Once the brain matter started to push in and take over the areas the ventricles had previously occupied when the shunt started to significantly drain the fluid, the fluid that remained had to go somewhere and began to push out of the back soft spot. This created a point at the top of the back of his head. The shunt was turned down (which actually increases the amount of fluid it drains) and most of that fluid has been successfully drained out of his head. The point, however, remains because the bones have been pushed into that position.

It was a fight to even get the cranial band on Nicholas's head. We started with a fight with the PA at the neurosurgeon's office, then a fight with the insurance. We pushed on both fronts and won. The cranial band therapy started with getting a mold of Nicholas's head so that the band would be perfectly fitted to his head. He wasn't terribly appreciative of this process but it was a necessary part. The mold was then left to sit for 24 hours to dry and then sent to Arizona where the actual band would be made. We were told it would be ready for fitting in 2 weeks. We ended up not being able to get the fitting completed until three weeks after the mold due to our travel.

Nicholas was brought into the orthotics/prosthetics office and the band was placed on his head to insure it fit. What surprised us was that the band was not fitted perfectly tight against his head. It's loose and sometimes moves around. This makes sense because we're trying to change the shape of his head so his head needs some space to grow into. The first week there was no padding added, the fit was just checked and we were given a schedule to ease him into wearing the band full time. The first day he wore it for an hour and had it off for an hour. Second day, on for two hours, off for one hour. So on and so forth until he was wearing the band 23 hours a day by day seven. Yes, he even sleeps in the band. He gets an hour off to take a bath and for us to check for pressure sores. Poor dude is so sweaty when we take the band off. And stinky. We have to check his entire head for red spots and monitor them during the hour he has the band off. If the spots don't fade within the hour the band is off, we are to not put it back on and to contact the office the next morning for re-fitting. We don't want him to get any pressure sores from something that's supposed to be helping him!

The second appointment was a week after the fitting. The specialist looks at Nicholas's head and determines where the growth should be limited and where we want the growth to happen more. He does this by placing pads in specific places inside the band. This basically stops the head from growing more in the area where the pads are and promotes growth into the open spaces in the band. By doing this, we are hopefully encouraging growth from the flat spot in the back of his head that will help round out the head. Nicholas continues to go back and pads will continue to be placed.

True to his character, Nicholas has accepted the band with little fuss. He was uncomfortable on the first day but now that he's wearing it 23 hours a day, it's just another part of him that is helping him - much like his Mic-key button for feeding. He remains a happy baby who loves laughing at his big brother, chatters whenever he's awake, and smiles at anyone he meets.

A Helmet for a Warrior

After we won the fight with the insurance company, the prosthetic company quickly scheduled an appointment for Nicholas to get fitted with his helmet. The longer the wait to get the helmet on his head, the longer he has to wear it because head growth does slow down after a certain age and so the helmet needs to be on longer in order to be effective. His appointment was scheduled for a Tuesday afternoon and we were asked to have his hair cut before the appointment. Because his hair is so long, they were worried that the plaster would stick in his hair and create some issues.

The Saturday before his appointment, we took Nicholas to the barber that Mike and Zachary use. Ironically, the barber is named Nick. He is amazing and we are very excited that we found him. He's originally from New York and his father moved here to retire and opened the shop. Nick took over the shop and according to Mike, it is exactly like a barber shop you'd find in NYC. Nick exclusively cuts Zachary's hair and Zachary asks constantly if it's time to go see Nick and get his hair cut. When we told Nick that we were there for Nicholas's first haircut in order to prepare him for his helmet, Nick smiled and cut Nicholas's hair with buzzers. He saved Nicholas's first curls for me and refused to charge us for the cut. It was hard to see Nicholas's adorable hair go away, but if it would assist in any way in helping him move forward with treatment, it was worth it.

The following Tuesday, Mike packed up all the kids while I went to work and off they went to the prosthetic office. Nicholas's head was covered with plaster (he wasn't very happy) and his helmet was sized. The plaster mold needed to sit for 24 hours and set and then was shipped off to be made. It takes two weeks for the helmet to be made and sent back to the local office, so it should be back soon.

The helmet works by creating space where they want the head to fill and a solid place where they either want the head to stay the same or change shape. He is checked by the prosthetic company on a fairly regular basis and they shave off parts of the helmet to encourage growth. We aren't sure how long he'll be required to wear the helmet, but we're guessing it will be several months. We also aren't exactly positive that this will work - that was part of the fight we had getting the neurosurgeon's office to prescribe the helmet, but we are hopeful for positive results.

We also found several companies that make decals for the helmets to make them cute and decorative. Zachary helped pick some and soon Nicholas will look like R2D2 thanks to his big brother.

Under Construction

Nicholas has had a lot of focus on his head his whole life. The reason is obvious, he has a condition that requires a little more maintenance than the average noggin. As his ventricles have been draining since the shunt was placed his second day of life, we have watched his head begin to take a concerning shape. While the size has reduced drastically, he has taken on a cone shape. 

The first time we discussed the shape with the neurosurgeon, it was determined that his back ventricles still had extra fluid and his brain was growing so there was nowhere for the fluid to go but push out against the back of the skull. This began the frustrating Easter hospital visit when the shunt was turned down drastically and Nicholas had a poor reaction. 

Nicholas's pediatrician and his therapists had all mentioned to us recently that they thought it was time to start considering helmet therapy. His therapists have mentioned that they believe that he is having trouble holding his head up in part due to the shape of his head since it is off balance. Certainly the size has a lot to do with it as well, but they feel that it doesn't help to have it be so misshapen. He is also having difficulty rolling over, though he's trying very hard, again due to the cone shape. 

Last week after a discussion with his neurosurgeon's office to get on the same page, it was decided that we would move forward with putting a helmet on Nicholas. The official term is cranial band therapy. We were preparing for a fight with our insurance and were pleasantly surprised to not find one and he is scheduled for his measurements on the 15th. 

We have been warned that there has been very little research done on putting helmets on hydrocephalus patients so the neurosurgeon's office is not sure that the helmet will be successful in reshaping Nicholas's head satisfactorily but we decided we would rather try and fail than not try at all and either always wonder if it would have helped or end up having to make him go through another surgery at some point in the future. That's not outside of the realm of possibility of course, but hopefully this can help us avoid it.