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.

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.

And Now He's Better

Nicholas failed his most recent swallow study. I don't honestly remember if I posted anything about that but he did. A swallow study is exactly as it sounds. Barium is mixed with things that Nicholas eats (a bottle of formula and some purees) and then he swallows under an x-ray while a radiologist and speech therapist watch to see what happens.

It was frustrating for Mike and I because we had very high hopes that he would pass. His speech therapist was sure he was doing fantastic and was surprised also. What we found out was that he's still silently aspirating approximately 50% of the time. So basically, one out of every two swallows he is aspirating at least some of his food. That's a big issue because when you put food into your lungs you increase the likelihood of pneumonia. It was determined he's still not safe to eat by mouth and that we would schedule another study soon. The speech therapist believes he may have aspirated more than he normally does because he's teething right now and has lots of extra drool. Either way, he's still 100% tube dependent.

I will be totally honest and say that I have viewed Nicholas's g-tube as an albatross around his neck. I know that we had it placed in the hospital to get him discharged because the NICU wouldn't discharge him until he was safe to eat, and eating by mouth was not going to happen (he was aspirating approximately 75% of the time on his NICU swallow study - so huge improvements in only 7 months), so we agreed to the g-tube surgery and learned how to tube feed him. I will admit it's been rough on Mike and I (mostly Mike) to take him to speech therapy two times a week, week after week, and to continually hear that he's still NPO (not allowed to eat by mouth). I sigh every month when his box of supplies arrive and we dutifully put away the bags and pack away the extra Mic-key buttons and g-tube extensions. I try very hard to not let this show because in the event that he needs to be tube fed when he's old enough to realize, I don't want to discourage him or make him feel like he's "different" but it's been frustrating.

Today as we were walking home from taekwando, Zach was talking to me about a conversation that he had with his friend at school. He said, "I told her that I used to go to the hostible a lot and then Nicholas got his g-tube and now he's better and I don't have to go to the hostible anymore." It stopped me in my tracks. Because he's right. We used to have to go to the hospital every day. I used to have to go home every night and leave my youngest child sleeping in a hospital bed ten miles away, being cared for by nurses (phenomenal nurses, don't get me wrong, but not being cared for by us), I used to have to check myself out of the unit to use the bathroom and then scrub in and check back in to see him. Then he got his g-tube and he came home. I had let the frustration of him failing his swallow study consume me to the point that I forgot what the g-tube had once represented - freedom to bring our child home. 

And really, if the worst thing that comes from Nicholas's hydrocephalus is a g-tube, I am pretty sure we are among the lucky ones. If there's one thing my kids have taught me over and over is that everything will happen on their timeline and not one minute sooner. So I will give Nicholas his time. If he never is able to eat liquid by mouth then that's that. If he uses a g-tube until hes 5, that's that. I will stay patient and remember this is not my journey to walk and that getting frustrated will do absolutely nothing but make me frustrated. It certainly won't help a 9 month old learn how to not aspirate. 

Hydrocephalus Awareness Month Post 3: Side Effects

The problem with hydrocephalus is that it affects people on such an individual level that there's no true list of side effects from it. There are things that are common amongst individuals affected with hydrocephalus, but people can range from completely high functioning (you'd never know they had hydrocephalus) to total brain damage. It all depends on so many factors, including how early the hydrocephalus was detected, what type of hydrocephalus they have, and what the body did before treatment intervened.

Some of the more common side effects are:

Vision problems, headaches, precocious (or early) puberty, seizures, poor hand/eye coordination, learning disabilities including nonverbal learning disabilities, difficulty understanding complex and abstract concepts, difficulties retrieving stored information, and spatial/perceptual disorders.

Because there's such a large range of side effects, hydrocephalus affects individuals all in a completely different way and on a totally individual level. Since there is no way to talk about all the different ways that hydrocephalus affects every person, I am going to tell you how hydrocephalus affects Nicholas.

The first reassuring thing we were ever told about Nicholas was when we met with his neurosurgeon while I was still pregnant with him. Being told that there's something wrong with your child's brain is terrifying. Meeting with a doctor who will do brain surgery on your child within days of being born? Even scarier. We literally had to trust this doctor with our child's life and we hadn't even met this child yet. Our heads were still spinning as we tried to research what hydrocephalus even was and here we were meeting with a man who would go inside this baby's head. He looked at the MRI and ultrasounds and told us that he was pleased to see something. Nicholas had a giant head. We were so confused. That was a good thing? The doctor told us it was a great thing. Because Nicholas's head was so large, it meant that his brain was growing along with his ventricles. When the head was developmentally normal and the ventricles are large, it means the ventricles are growing into the areas where the brain is and that typically means more brain damage than we would likely see in Nicholas.

I can't tell you how lucky we were that his head expanded. He has some issues because of the hydro, I'm not going to lie. But he's one of the lucky ones. The further we venture into the hydrocephalus community, the more we realize just how lucky this kid is. Obviously we don't know yet if he will have a learning disability or some sort of social disorder due to the hydrocephalus, but as of this moment, his issues are small and manageable.

Nicholas's side effects include a g-tube because of a weak swallow reflex. Weak. Not non-existent. That is a big distinction. He's already showing improvement with lots of speech therapy. The neurosurgery and pediatric team believe the weak swallow reflex is a result of some brain damage due to the hydrocephalus. That was so hard to hear. But he's improving. He had a swallow study on Monday and while he didn't "pass" (there's not really a pass/fail according to the speech therapist that administered it), we were told it was his strongest swallow study yet. That's in only 8 months of having a g-tube and therapy!

Nicholas is being stimulated by electric pulses (it's not painful - he actually falls asleep to this!) to help make his muscles in his neck stronger. This will hopefully strengthen his swallow.

Nicholas is also physically delayed. He has been rolling from back to tummy for about a month and just recently gained enough strength to roll from tummy to back. He will scoot a little bit while he's on his tummy using his legs to push. He just started to push his legs up when you hold him upright with his legs on the floor (i.e. he's starting to try to "stand" while you hold him) and he can hold his head up but not for extended periods of time. All of this is being addressed in occupational and physical therapy. We were told by our neurosurgeon at one time that it's not like it will be on his college application when he walked, and we agree with that. If he doesn't start walking until he's 2, he doesn't. It's not the end of the world.

Occupational therapy = playtime! Fun!

Cognitively, Nicholas appears to be on track, if not slightly advanced in some areas. He tracks with his eyes when you put something of interest in front of him. He reaches for toys and passes them back and forth between his hands. He rolls to his side to grab toys. He babbles and laughs (most often at something Zachary does - this kid sure adores his big brother) and smiles. He's a complete sweetheart and everyone who meets him falls in love.

On This Road

There's no way to describe the way you feel when the doctor tells you, "We see something wrong," while looking at an ultrasound. Your heart drops. You grasp your husband's hand, you stare at the grainy images they're showing you, trying to make sense of light and shadows. When those words "We see something wrong" includes the word brain, it gets really scary. A big long name for a condition we had never heard of. Hydrocephalus. Prognosis is typcially good. You cling to the word typically but live in fear of the atypical. Of the outliers. Of the ones who don't have a good prognosis. You vow to help him fight, to help him live the best life he can.

The day he's born. You barely see him before he's whisked off to be cared for by someone else. Your child being placed into someone else's arms. Someone else leaning in close and providing warmth. You're laying in a cold operating room with no answers. Your heart pounding, the worst case scenarios running through your head. Asking the doctors for answers and being told they have none yet. You'll get them they promise but not right now.

Standing in the NICU next to his bassinet and hearing "Not swallowing the way he's supposed to. Swallow reflex not working. Probably some damage to his brain. Hydrocephalus." Suddenly your vision of your future, and his, comes crashing down around you. The future you've always envisioned is raising happy children that leave and live lives with their own families, their own careers. Brain damage may change that future. Certainly you'll love him with everything you have forever, but that future may include him by your side for the rest of it. And what to do when your future ends but his keeps going? What happens then? Your resolve to fight slips a little. It's a scary time to hope, but what choice do you have? You start therapies. You agree to another surgery. You do everything the doctors and nurses tell you because it will help.

It's terrifying to go through. It breaks your heart because all you want is for your child to be happy. All you want your child to know is love and joy. And while you know that's not possible for his whole life, you'd really like to think it is possible in the first three weeks. And you feel guilty that your child has to know pain. And fear. And be poked and prodded. And x-rayed. And have ultrasounds. And have a PICC line placed. And you know that all of this is to help him. But he doesn't know that. He has no clue.

Then one day he does this.

And two days later he does this.

And you compare this.

And you start to feel sparks of true hope. And you start to allow yourself to consider that word typically again. Typically good prognosis. And you realize that what they told you in the NICU, "Nicholas hasn't written his story yet. He's writing it every day. There is nothing set in stone." is being proven to you by leaps and bounds. By a baby who doesn't know any better than to fight. And your resolve to help him fight that you thought you had lost? You realize it has been there the whole time and has become so ingrained that you don't have to think about it anymore. And you realize that nobody's future has been written yet and it is never never wrong to cling to hope.

Ain't Nothin' But a G-Tube baby...

Zachary has recently been enrolled in the Leadership program at his taekwondo studio. What that means is that he gets an extra class twice a week, gets to learn an extra two weapons that the Masters class students don't get to learn, and is welcome to join the XMA (Extreme Martial Arts) classes if he chooses. So, on Monday and Wednesday afternoons, we're at the taekwondo studio from 4p-5p instead of 4p-4:30p like we used to be.

This is important, because it means that I now have to set Nicholas up for his 5 p.m. feed at the studio. Not a big deal, I just take the pump with me in his tiny little backpack and hook him up right before Zach is done with his class. I put the kids in the car and hit start on the pump so Nicholas can eat while I drive home. We usually are sitting right next to Nicholas when he's feeding, but since he was eating in the car, I obviously couldn't watch him eat.

Wednesday evening when I got home, I carried the babies up the stairs to our condo, got inside, got Zach situated playing in the living room with some water to rehydrate and took the babies out of the car seat. As I took Nicholas in to the nursery to change his diaper, I noticed that his onesie around his g-tube was wet. Thought this was unusual so took a look. His diaper was very full, so I just figured he had overfilled his diaper and felt bad that his diaper had gotten so full that he had peed out of it. I also noticed that his g-tube pad was soaked, so I unsnapped it. It didn't look like urine on the pad, so I smelled it (the things parents do, huh?) and it was not urine. It was milk. I tried to remember why milk would be leaking from the g-tube site. Called Mike, he wasn't available so he didn't answer. Google led me to the Mic-key button website where I found a handy troubleshooting guide. Troubleshooting guide said the balloon may be loose (explanation in one moment) or there may be a large amount of gas build up in the stomach and the person may need to be vented.

I think I've explained before, but basically the Mic-key button is the tool through which we feed Nicholas. It is a tube that goes through the hole in Nicholas's stomach and abdomen. On the top it is flat and pretty much flush against his skin. There's a hole on one side to stick a slip tip syringe in and control the amount of water in the balloon and there's a hole that we attach the Mic-key extender to which then connects to the bag which is hooked to the pump and holds the milk. On the inside of Nicholas's stomach is the balloon. This is filled with water and basically holds the button so that it doesn't come out of Nicholas's stomach. It fails. It is made of latex and basically spends all day sitting in stomach acid and rubbing against the inside of the stomach. We are authorized one Mic-key button per month from insurance (I think...) but our surgeon told us we don't need to replace them until the balloon fails or something else goes wrong with the button.

When you "vent" the g-tube, you put in the extension (above against the green background) and attach a 60 ml syringe to the extension. You let the milk and gas come out of the tummy into the syringe and then you use gravity to push the milk back into the belly. I figured this was a likely place to start, so I got Nicholas situated on his pillow and started to attach the extension to the button. It was precisely that moment that the button fell out of Nicholas's stomach onto the pillow. We've been told several times by several doctors that fluid will take the path of least resistance. Know what the path of least resistance is when you've just put 4 oz into a baby's belly and then a hole appears? Yep...through that hole. Milk began shooting out of the hole that was now in Nicholas's stomach. I grabbed the button (noting that the balloon was basically empty) and shoved it back through the hole. Zach noticed something was happening and wandered over. I told him I needed some water and then realized that I can't ask my three year old to grab a slip tip syringe because well...he's three. I couldn't probably ask an adult to grab one unless they're in the medical field or had some experience with needing slip tip syringes, much less a three year old. Zach heard I needed water and ran away before I could amend my request. He came running back into the living room with the entire gallon of purified water, incredibly proud of himself. 

I told him he did a great job and asked him if he could stand there and hold the button in Nicholas's stomach while I grabbed what I needed. He said "Sure!" and put his finger on the button. He turned to watch something on the TV and his finger slipped off. Milk began shooting out of Nicholas's belly again (and I'm talking like the arterial spurts you see on TV - this was no slow dribble) and soaked poor Zach. He screamed and I shoved the button back into Nicholas's stomach and told Zach he had to hold it tight. I run to the kitchen to get a slip tip syringe (and a smaller bottle of water) and then to the nursery to grab a new button. Come back into the living room and not only is Zach still holding the Mic-key button in Nicholas's stomach but he's also holding Nicholas's hand and saying "It's okay Nicholas, Mommy will fix you." He saw me and said, "Nicholas was trying to grab his g-tube so I held his hand." This kid. I swear. He was meant to be Nicholas's big brother. He was not paying any mind to the fact that he was physically holding a button in his brother's stomach, or to the fact that he's currently covered in milk that had shot out of his brother's stomach. He was just doing what I asked and trying to calm his brother down while he did it.

I test the balloon of the new button (works yay!) and tell Zach thanks for his help. I pull the old button out and very quickly (milk shooting everywhere again!!!!) put the new button in. Take the slip tip syringe included in the new Mic-key button kit and fill the new balloon with water. The new button is sitting perfectly. It was at this precise moment that Mike calls me back. Tell him that Nicholas's button failed and a new button had been installed and oh by the way, his toddler is a rock star. Thank goodness I was still on maternity leave when we had the appointment with the surgeon to learn how to replace the button! 

Next order of business? Lots and lots of laundry (clothes, the pillow Nicholas was sitting on, the couch cushion the pillow was on...) and bathing two kids covered in milk. Yuck. Phew.

Never a dull moment around these parts. It was a little stressful on Wednesday, but now I'm laughing. And still totally impressed with Zachary.

You're So Strong!

If "You've got your hands full!" is the most common thing we hear, "You're so strong!" or "I don't know how you do it!" are not very far behind. I take a step back and look at my family to see what they see.

The three year old? Certainly a three year old is a force to be reckoned with. You've never understood the term threenager until you've had one. Some days everything is awesome (does anyone else sing that phrase? Thanks Lego Movie!) and some days the world is ending because we used the wrong color plate or his favorite cartoon is on or the milk is too white. Yep. Those days take some inner reserve. 

The twins? Well they can be overwhelming. Who do you comfort first when they're both crying and only one parent is around? What about when they both need a bath? What if you're changing a diaper and the other one starts melting down?

A medically special needs child? Yeah this one can be tough too, though at this point we have everything about his care down to almost a science that it's a little less overwhelming. Except for times that he throws curve balls at us. Like the other night when we were at dinner and Mike was gravity feeding him and Nicholas was NOT happy and was having such a melt down that somehow his milk actually came out his nose. We aren't sure how that happened. His nissen is supposed to prevent that. He must have exerted some serious force to bypass that. 

So yeah. I guess we have three pretty overwhelming situations all squashed together into one family. But...it's our family. And really, what choice to we have BUT to do it? We can't stop caring for them. We can't not provide for their needs. So we just figure out ways that work for us and keep on keeping on. 

I laugh when I hear that. I appreciate the compliment it implies, but then I think about the families I used to think that about. Another family with a toddler and multiples (if only I could have seen the future!). A family with a toddler with cancer fighting for his life. Another family with more kids than I thought I wanted. And now I know. Yes, it takes great inner reserves of strength and patience but when it's your life you don't really notice yourself pulling up your bootstraps, you just DO IT. And I know that, faced with whatever difficulties lie ahead, any of my friends or family would do the very same thing. Just roll with the punches and figure out what to do next. It's what any good parent does. 

An Open Letter to Hydrocephalus

I follow a page on Facebook called The Mighty. It's a haven for special needs parents to vent or cry or share success. This page publishes blog postings from special needs parents all over, and I was turned onto it after a friend of mine had her blog posting published. She shared the page and I followed. (You can find Laurie's blog about her amazing daughter here).

The Mighty has challenged it's readers to write an open letter to the disease, disability, condition, or disorder that afflicts the reader or the reader's child (family member, friend, etc.). I have been reading along all month and have finally decided to give it a go.

Dear Hydrocephalus,

I didn't know you before you crept into our lives. You are one of the most common congenital conditions but you are not well publicized. When the doctor said our son had hydrocephalus, we had to turn to Google to even figure out what that meant.

You stole happy moments from our miracle pregnancy. Because I was already high risk, I got more ultrasounds than I probably truly needed, but every ultrasound turned to worry as we watched you take over the ventricles in our son's brain. Every ultrasound his ventricles were larger than the last and every time we left the doctor's office we contemplated how much damage was being done to his precious brain.

You stole bonding time from us when Nicholas was born. He was taken immediately from me after delivery - I didn't even get to touch him before he was whisked away because the size of his head upon birth was so troubling. You gave him a head the size of a one year old when he was born - and he was a month early. We didn't get to hold him for a full week after he was born because of you. Because you required brain surgery during his second day of life and because his veins were too tiny for a standard PICC line, an umbilical artery was placed and it was dangerous for us to hold him lest they lose that line. You stole more bonding by creating an issue where he can't swallow properly and aspirates his food. This required a second surgery and a longer NICU stay.

You have stolen time from our family, requiring therapy and multiple doctor appointments weekly. You have stolen time by requiring Nicholas to feed by tube, a process that takes longer than if we just gave him a bottle or if he could breastfeed.

But you have given back to us as well. You have shown both Mike and I that we are stronger than we ever believed we could be. You have shown us that we have raised, thus far, a remarkable older brother who loves his hydrocephalus/tubie brother more than words can say. You have shown us that the world is full of amazing and kind people who say prayers for us in our darkest hours, who are ready, willing, and able to step to the plate to help us.

And you showed us the most important thing of all. You showed us an indescribably brave little fighter. He fought to get here (twins with only one good follicle that month???) and he is fighting every day for everything. He's graduated to a lower level of occupational therapy because he is meeting his age appropriate milestones. He's not passed his swallow study yet but has shown so much improvement that we think he may pass soon. He is silly and sweet and cuddly. Everyone who meets him falls instantly in love. He's a fantastic addition to this Earth, and hydrocephalus, you can never take that away.

From,
A hydrocephalus/tubie mom

Your Hands Are Full

It happens every time we are out. People are inevitably drawn to a twin stroller. They lean in and ooooo and ahhhh. "Are they twins?" They are. "A boy and a girl?" Yes. Their eyes then fall on the 3 year old hovering protectively nearby. "Oh my goodness! Your hands are full!"

We nod our agreement, smile, and make our way on. Because yes, our hands are so very full. And we can't explain just how full. They don't know that we hook our son up to a tube to feed him six times a day. That we watch the contents of his stomach bubble up into a syringe after we've fed him in order to remove gas from his stomach. That we watch obsessively for signs of abnormal behavior because a baby can't verbalize that his shunt is failing. That we are at therapy appointments three of the five business days of the week in order to help our son learn to swallow without aspirating, learn to hold his heavy head up on his own, learn to use his motor skills. 

They also don't know what it feels like to watch your three year old touch his brother's head and coo how cute he is and that he loves him. To see that unconditional love displayed. To watch that three year old take hospital visits and therapy appointments in stride and accept it as part of being this little boy's big brother. To lay the twins down next to each other and watch them gravitate towards each other. To link arms as they lay on a blanket next to each other. To watch each of them hit their milestones, your son meeting some of them before his non-special needs sister and to swell with pride at the fight you see in him. 

Yes. Our hands are full. And aren't we so lucky they are?

The Second Night Home

Mike had gone back to work before Nicholas came home, but we had had family with us so I was getting help with Zach and Emily while he worked.

My mom was still in town the second night home and thank goodness she was. We put Zach to bed, watched some tv while I got Nicholas his feed and nursed Emily. Just before 11, I moved the babies to the pack and play in the bedroom, packed up the IV pole with the feeding pump attached and my mom and I said goodnight. As soon as I got into the room and started Nicholas's overnight feed, both babies started to cry. I tried calming them down but they appeared to be hearing each other and winding each other up. I wasn't sure how to hold both babies and I couldn't get either to stop crying. Getting a little panicked, I called out for help from my mom. She came in and took Emily to the other room. That seemed to do the trick and I was able to pick up Nicholas and bounce him enough to calm him down. I was laying him down in the pack and play (we have a twin pack and play with two bassinets on top) when I heard a distinctive POP. I had no idea what it was but Nicholas started screaming. 

I looked down and realized that Nicholas's feed was now spilling out onto my bedroom floor. Through the Mic-key button that I had just pulled out of his stomach. I began to panic and tried to desperately remember the instructions that the nurses had told me in the hospital. 

When (not if, when) his button comes out, you need to find something to fill the hole (and a red rubber catheter was placed in our hands) and get Nicholas to the ER. The hole can close within an hour so as soon as you notice it, get to the ER. 

I started screaming to my mom to find the red thing, I needed the red thing. My mom, still holding a no longer sleeping Emily and not sure what exactly I was freaking out about, started searching through the bags we had brought home from the hospital. I called Mike and he couldn't understand what I was screaming at him at first. He finally got me to calm down enough to tell me where to find the rubber catheter. I had to put the catheter through the hole where his button was, taped it down, placed him in the car seat, told my mom where to find a bottle for Emily if she woke up before we came back, and was driving to the hospital we had just left the day before. 

I was sure the hospital would judge me for being totally unable to care for my son for even one day. The doctor and nurses were actually incredibly nice and told me I was not the first mother to pull out the button and would certainly not be the last. Mike's co-worker who has a son with a j-tube (similar to a g-tube but in the intestines rather than the stomach) told me that you weren't a tubie parent until you've accidentally pulled out the button. 

Turns out there was a leak in the balloon holding the button in, so we had to wait for another button from the hospital. Once they replaced it, they had to inject contrast through the button and make sure that the button had gone through both the abdominal wall and the stomach since scar tissue to attach the stomach to the abdominal wall hadn't developed yet. 

It seems that life with Nicholas will always be interesting and sometimes may be a little scary. 

More Prep

The day before Nicholas's discharge date we walked into his room to find an IV in his head. My heart stopped. Why was there an IV in his head? I was sure that his discharge date had been pushed back and also a little upset that something had happened to him and nobody had called us.

We had one of our two favorite nurses on that day but apparently she was at lunch when we walked in. Our other favorite nurse ran in to explain that he was slightly anemic and that the neonatologist had ordered a blood transfusion in order to keep his discharge date and to keep us from running into any problems. The order for the blood had been put in and as soon as our nurse returned from lunch he would get his transfusion. I was so relieved that his discharge date was still a go and that nothing was seriously wrong. 

Our nurse returned, the blood transfusion started, and the nurse and I got busy filling out the list of things she was supposed to teach us before we were discharged. I had to prove I could put his Mic-key extension tube into the button to feed him. Then I had to prove I could remove it when he was done. I had to prove I could change his diaper. That I knew how to administer medication via his g-tube. That I knew what vitamins to give him. That I knew how to clear his nose and throat using the bulb. That I was comfortable moving him. That I knew the signs of illness and what to do if I detected them. 

As we began to wrap up for the night, I kissed Nicholas goodbye and hoped against hope that tonight would be the last night I went home without him. 

Eating

You never really think about how integral eating is as part of our society. We go out to dinner to socialize, celebrate, do business, relax... Even at home, eating is usually a big deal. Families gather at a table for dinner to reconnect. Holidays are spent around the kitchen and the table. 

Our speech therapist in the hospital started talking to us about how we were going to have to include Nicholas in these traditions even if he wasn't eating by mouth. He should sit at the table (when he was strong enough obviously) and take his feed even if it weren't by mouth. We should try to hold him while he got his feeding because you hold babies when they eat.

When Nicholas got the all clear from the surgeon to start eating again, they started him very slowly on the tube. He was getting approximately 20 ml of milk over an hour. They just weren't sure how he would tolerate it. In order to start the clock on discharge, he had to be back at what he had been eating via NG tube before the surgery. He had been at 60 ml over an hour, so we had some work. 

He took every feed like a champ and each time they fed him, they increased the amount. By Saturday (surgery had been Thursday), he was back at full feeds. The NICU drew up a feeding schedule for us and the nurses started to hint at discharge talks. We tried very hard to not get our hopes up. As everyone who has ever had a child in the NICU, talks can change fast. 

Saturday, Nicholas had a Brady. It wasn't a true Brady in the sense that something was physically wrong that he stopped breathing, it was actually just that he was positioned wrong and his airway was cut off (did I mention he had a REALLY big head?) but it started our discharge clock over. He had to be Brady free for five days in order to be discharged. We tried not to be too disappointed. He had been a rock star to this point. We knew there would be setbacks. 

Surgery x2 Part 2

The day of surgery came. We were told that he would be in surgery around noon. We got to the hospital early and found an extremely pissed off baby. He had officially been off food since midnight the night before because of the surgery. We had a nurse that we had never had before and if we couldn't have our "regular" nurses, this one was amazing. She was very calm with Nicholas and funny with us. Nicholas was angry and screaming. A pacifier was not acceptable. He wanted food in his belly.

The nurse told us she had to place an IV line because the NICU didn't want the anesthesiologist to touch their PICC line. They had worked too hard to get that PICC in. She tried to place the IV in his hand and the line immediately collapsed. His hand was just too small. I had helped her hold him down while she placed the IV in his hand but when she said she was going to place the IV in his head, I had to back away. Mike and I switched spots and I held Emily. The IV was placed in his head and then we waited. And waited. And waited. The surgeon stopped by briefly with his resident and explained again what he was going to do and what to expect. He asked if we had any questions and was gone as soon as we said no.

Suddenly, at around 12:30, transport showed up to take Nicholas to surgery. Our nurse was furious that she hadn't been notified so she could have him ready. She busied herself getting him ready to move and we kissed Nicholas. Mike was going to walk down with him and my sister, Emily, Zachary, and I were going to go get some food from the cafeteria while we waited. We were told it would probably be a couple of hours and then he would return to his room. They didn't know if he would still be intubated when he came back up, so we would just have to wait and see.

My sister, Mike, Emily, Zachary and I all returned to Nicholas's room and waited for him to come back. Emily slept. Zachary played games on our phones. My sister, Mike, and I just waited. Our nurse stopped by a few times with updates (he's out of surgery!) but mostly we just waited. And suddenly he was there. Groggy but not intubated. Just a nasal cannula with oxygen. Pretty good. He now had a hole in his belly with a Mic-key button covering it. The button was covered with tape and the extension tube that we could eventually remove after every feeding was taped in with the button. The button is permanent while he has the g-tube. It is what keeps the stomach adhered to the abdominal wall and keeps the hole open so we can continue feeding him. 

The surgeon appeared and said that the surgery had gone very well. They placed the g-tube (on the opposite side of the abdomen than where the catheter from his shunt drains), completed the nissen, completed the circumcision and oh by the way, found a surprise. Ummmm. A surprise? That's a scary term coming from your newborn's surgeon. They had found an inguinal hernia while they were in his abdominal cavity and had gone ahead and repaired it. An inguinal hernia is a hole where the baby's testicles dropped that should have closed. Probably due to his prematurity, Nicholas's had remained open. This could cause issues because his intestines could drop into his testicles, twist, and he would be in for pretty major surgery. As it was, his testicles were quite large because the extra fluid draining from his ventricles was draining through the hole. Lucky the surgeon found it. If they would have found it after surgery and before discharge, he would have had to have a third surgery. If we were discharged and his intestines dropped, we could be looking at an emergency situation. 

Now we waited for Nicholas to get the all clear to start eating to see if he would tolerate his feeds via g-tube. We were getting closer to a discharge date as long as everything worked. 

Surgery x2

After much discussion with each other, the nurse practitioner, the neonatologist, the nurses we had formed a relationship with, Mike's co-worker who has a far more complex situation than us, and our families, the decision was made to move forward with the g-tube placement surgery. The medical staff also recommended to do a nissen while they were placing the g-tube. The nissen takes the top part of the stomach and wraps it around the esophagus so that nothing can reflux out of the stomach. It basically takes away the path up from the stomach. Nicholas had to be taken for a GI x-Ray to verify that he was actually having reflux (all clinical symptoms pointed to yes) so that the surgeon would actually perform the nissen.

We also opted to have his circumcision done while he was under anesthesia if the surgeon had time. Once we decided to do the surgery, it seemed to spring everything into action. We met with the surgical resident under the general surgeon, he began a round of antibiotics in preparation for surgery, speech and occupational therapy ended, and things fast tracked towards the operating room.