525,600 Minutes

In one week the twins will turn one. When I think back over this whirlwind year, I can't help but feel like we are so incredibly lucky. 

The first month of the twins lives was hectic and scary. Nicholas underwent two major surgeries and spent 21 days in the NICU. I've learned that's a heartbeat in the NICU. He was a short timer. But for our family that was an eternity. Zach befriended child life, figured out where the playroom in the children's hospital was, learned where to touch on the magic wall in the lobby to make music. He quickly learned how to pull out the blanket child life left for him and play with the toys in "his" bin. And what day there was good stuff in the parent lounge fridge. 

Emily slept in the arms of nurses, doctors, therapists, aunts, grandma and parents as we sat for hours next to Nicholas's bedside. 

Mike and I found the healthier cafe in the hospital, learned how to scrub in properly, quickly learned medical terminology, learned how to navigate a "normal" life as we carried around a feeding pump, feeding bags, extensions. We learned how to replace a button in our son's stomach so he could always eat. We watched therapists work to increase Nicholas's strength and learned what they were doing so we could do it at home. 

We enrolled Zach in taekwando so he would have something for himself and we have watched him blossom into a remarkable child. He is a fiercely protective older brother, a patient playmate, and has most recently become a victim of his sister's experiments with biting. He is independent and excelling in school even though he's one of the youngest in his class. 

Emily is growing into a stubborn and independent toddler. She is crawling everywhere and getting into everything. If there is something she shouldn't be putting in her mouth anywhere around her she is guaranteed to find it and put it in her mouth before anybody realizes. She is friendly and likes people. She spends a lot of her time with her brother at therapy and benefits from playing with the toys there. 

Nicholas has had the hardest year of any of us (and it isn't over yet as he has a minor surgery scheduled December 31st to remove a cyst from his nose) and still remains the happiest, sweetest child. He willingly smiles at everyone, he laughs at pretty much anything his big brother does, loves to pet our dog, and is getting around by rolling all over the place. He is currently anywhere between 3-5 months delayed but is making incredible strides every day. His therapists are amazed at his successes. 

It was probably one of the hardest years of our lives for Mike and I. Between working opposite shifts, planning around hospital stays, fighting insurance, and buying a home, we've spent a significant portion of the year at stress level maximum. But we are so very lucky. We get these amazing examples of tiny people to love and raise. It's not an easy job, and with the independent streak running through all three of them, it will probably get harder but it's a pretty fantastic life. 

And I can't believe we will have TODDLERS in a week. 

The Night Before

Tomorrow I will go to my first Hydrocephalus Association WALK. This WALK is in South Florida and has been running for a significant amount of time and is a largely successful WALK (at this time of writing they are hovering near the $50,000 donation mark). 

A year ago we were about to meet the members of our family that would complete it. A year ago hydrocephalus was an abstract term to us. We knew our son had it but we didn't know what that meant. Would our son be able to function? Would he have any brain damage? What kind of future would he be looking at?

A year later hydrocephalus is integrated into our lives. When I initially reached out to the HA about a WALK in central Florida, I didn't really think about the logistics of actually running one and here I sit in south Florida getting ready to embark on this journey. It's an exciting precipice to stand on. This time next year I will very likely have my first WALK under my belt. What a difference a year makes. 

Pregnancy and Infant Loss Awareness Month

October has been designated as pregnancy and infant loss awareness month. One in four women will or has suffered a loss of some sort - whether that's a miscarriage, a baby born sleeping, or the loss of a child. Chances are that you or someone you know closely has gone through this. 

Achieving our family was not easy. It took six months of actively trying to get pregnant with our first child. And it took a month to lose that pregnancy. We were so innocent. We had no idea that when you get pregnant it doesn't automatically mean you take a baby home. I started bleeding very early into the pregnancy. The first ultrasound there was a heartbeat. That reassured us. We could sleep easy. When the bleeding got worse and I went back for another ultrasound the heartbeat was gone. We watched the ultrasound technician try several times to find the heartbeat. We saw our gummy bear shaped baby on the screen. And we never actually saw or heard the heartbeat. At the time I didn't think to ask for the ultrasound pictures. So the memory of that tiny gummy bear is all we have. 

I never really understood just how hard a miscarriage was until I had one. From the moment I saw those two lines on the pregnancy test, I was a mommy. So the weekend where I finally lost the pregnancy became the weekend where all those dreams of birth, holding our child in our arms, watching our child grown and learn and play and become an adult, those dreams were lost. 

We wouldn't have Zach now if that pregnancy would have gone to term. He's a blessing and he is supposed to be here. But it never stops you from wondering what might have been. 

Time has dulled the ache. But every August I stop and remember that there was a tiny being who might have been if a different story would have been told. 

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. 

Never Forget

I will never be able to know how terrifying it must have been to be in New York or Washington DC. I know half a country away it was terrifying, I can't even begin to imagine what it was like to be that close.

By the time I turned on the Today Show that morning to get ready for school (I was in college), the first plane had already hit. I tuned half an ear in while I curled my hair. I watched the second plane hit from the mirror. Then the Pentagon. I remember people being afraid that Colorado was a target. Because of Rocky Flats and NORAD. 

Mostly I remember no planes. I walked into the two classes I had before they closed the campus and nothing was taught that day. We watched the coverage in horror. The sadness we all felt when the towers collapsed. We knew this took so many innocent lives. The fear about what was next. The strange silence in the skies. It was all so surreal. And a day that has been forever burned into the memory of this country. 

Today, fourteen years later I say a prayer. For those who lost their lives, both on that day and in the days after to illnesses they wouldn't have but for being there that day. I pray for the heroes that were lost and that must live every day carrying what they saw and experienced there. For the families that have picked up the pieces and moved forward. And for the country that banded together. 

Hydrocephalus Awareness Month Post 5: It IS Brain Surgery

What happens when a shunt is placed?

Shunt placement surgery IS brain surgery. It is among the most common surgery that neurosurgeons perform - upwards of 40,000 surgeries annually. As I've talked about multiple times on this blog, Nicholas was 2 days old when he had his surgery. Because of his age when the surgery happened it was actually an easier surgery (the only time in his life he's had an easier road!). Typically the neurosurgeon has to drill through the patient's skull in order to place the shunt. Since Nicholas was so young, the neurosurgeon was able to go in through his soft spot and place it. As a result, his recovery was easier and the surgery was shorter than typical. 

Shunt placement surgery is typically around 90 minutes and is performed under general anesthesia. Because the surgery team has to go inside the head, the area where they will be placing the shunt is shaved.

A tiny incision is made in the head (older patients get a hole drilled into their skull at this point also), and a catheter is threaded into the brain. The other end of the catheter is then snaked under the skin around the ear, down the neck, and into the area that it's being placed in (most commonly the abdominal cavity). An incision is also made in the abdomen to guide the catheter to the right place (such as not behind the bowels or taking up space the stomach needs). The neurosurgeon then attaches the pump or valve to the catheter to tell the shunt when to drain the CSF from the ventricles. We were warned that a third incision may be needed behind the ear to help guide the catheter around that curve but Nicholas's surgery team ended up being able to guide it without another incision. 

Once the surgery is done, the patient remains in the hospital for recovery. Children are usually required to lay flat for 24 hours after the surgery. Older children and adults may be ready for discharge as early as the day after surgery if there are no complications. Nicholas's neurosurgeon felt comfortable with him being cleared from a neurosurgery standpoint 7 days after his surgery. His extended NICU stint was a result of his feeding issues, not his brain surgery ironically. 

Because the shunt is a mechanical object it is not only common for it to fail, it is pretty much expected to. We were warned of symptoms of shunt failure because leaving a shunt failure untreated can lead to brain damage and even death. Shunts fail more frequently in infants and children than adults. The current average lifespan for an infant's shunt is two years. Older children and adults have a current average lifespan of 8 years. That's a new brain surgery called a revision. Every time a shunt fails.

Hydrocephalus Awareness Month Post 4: What does a shunt feel like?

The other day I read a post in one of my hydrocephalus Facebook groups that made me sad and also made me wonder. It was posted, "Does anyone wonder what it's like to not have a device in your head and tubing running down your neck and into your abdomen?" It made me sad because it makes me wonder if Nicholas will feel that way one day (maybe a cure will come in his lifetime!), but it also made me wonder what it actually feels like to have a shunt.

Obviously I can't ask Nicholas yet what it feels like to live with a shunt on a daily basis so I turned to the hydrocephalus community to ask them what it's like to have a shunt. I have a small community of people I know in real life with shunts but am a member of several hydrocephalus groups on Facebook and on Babycenter and they provided me with some insight.

The first thing I was told was that the side effects of having a shunt were far preferable to living with the pressure in your head from having untreated hydrocephalus. That having excess CSF was painful, caused nausea and also made you dizzy. That you experienced things like double vision and just overall felt terrible. Obviously left untreated, hydrocephalus can also lead to brain damage and death, so having a shunt is preferable to that.

Also, I heard very different things from people I asked. Some experienced nothing out of the ordinary that they were aware of and some experienced all of these things - so like hydrocephalus itself, having a shunt feels different for each individual person who has one.

The main things I heard were being able to "hear" the shunt. When a shunt turns on, most people say that they are aware. They can hear it buzzing, clicking, popping, or gurgling inside their heads. This depends on the placement of the shunt (the closer it is to the ear canal the easier it is to hear) and it appears to also depend on the type of shunt (programmable, non-programmable, maker, etc.). Shunts are not always on, they turn on when the pressure in the head indicates they should be. The newer
programmable shunts detect the level of pressure in the head and turn on when the pressure exceeds what the shunt has been programmed to maintain. Older, non-programmable shunts, were on levels of high, medium, or low pressure and would detect when the brain reached the threshold that each shunt was set for. The bad news with non-programmable shunts is that if the shunt is over or under draining, the shunt must be replaced with surgery. Nicholas has a programmable shunt which means if we determine (and we have, several times) that his shunt is under draining, it's an office visit and a strong magnet is used to reset the shunt to a better level.

Another complaint is that when the shunt is draining, if the tubing is placed close enough to the ear, it can mess with a person's equilibrium. Because there is fluid running through a tube near the eustachian tube it can make people feel dizzy. This doesn't appear to be a common side effect, but has been mentioned in the community.

Most neurosurgeons leave a large amount of tubing curled up in the abdomen when treating children (Nicholas's did for this exact reason) so that as the child grows, the tubing can stretch and revisions (more brain surgery) are not necessary as long as the shunt continues to function properly. I have been told that as the child grows, it is typical to feel some tightening or tugging as the shunt tubing breaks loose of adhesions under the skin that were formerly created and lengthen under the skin. I imagine that must be fairly uncomfortable.

Weather is a big one. Most surgeons will tell you that weather has very little to do with the pressure inside the head, but almost every single person I've talked to who has hydrocephalus and is treated with a shunt has said that when the weather changes, they get headaches. It's apparently a big debate within the hydrocephalus community. We have seen it first hand with Nicholas. If a big storm is rolling in, he becomes very uncomfortable and cries. If we give him Tylenol, it seems to relieve and relax him. I've been told by my co-worker with hydro that if it's very hot, she gets headaches. She has found that wearing hats helps to reduce the headaches.


Abdominal discomfort is another common complaint. It seems that the CSF draining into the abdominal cavity creates acid reflux in a significant number of hydrocephalus patients.

While not every person who has a shunt experiences all of these, these complaints come up time and again. And again, every person I talked to said that this is clearly preferable to living with hydrocephalus untreated and obviously better than facing death so they take their side effects with a grain of salt, some ibuprofen, and maybe some Tums.