Spina Bifida Awareness, Day 19/20

Day 20: Surreal
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There are misconceptions about spina bifida, like that mobility is the only obstacle SB kids will face. Our number one worry before learning the reality about spina bifida was whether or not our daughter was going to walk.

How many kids did I know in school that were in wheel chairs? Or crutches? Not many, so it was hard for me to truly understand, to really be able to imagine the reality of a child who needs help getting around. And when you don’t understand something, it can be scary.

I’m just being honest. It was scary, especially the day we learned of her diagnosis, thinking about the potential struggles she would face if she could not walk. How could she mainstream in school? As far as I knew, they didn’t practice immersion with special needs children in schools. A lot of these thoughts, obviously, were result of a poor understanding and AWARENESS of any type of special need.

This is no insult to anyone. A lot of us just don’t know, we can’t relate. It’s hard for us to empathize with families and individuals who are faced with birth defects, cognitive delays, etc. That is one of the reasons I am writing these posts.

So what other obstacles are there, Priscila? Enlighten us! Well, okay. I’ve said it a thousand times, and I’ll emphasize it again – SB is different for every kid. There may be a child whose biggest battle is mobility, but more often than not, there are other issues thrown into the mix. There are two big ones that come to mind:

Bladder/bowel function

Hydrocephalus

We’ve already touched on hydrocephalus (hydro) a bit and you know that Eliora has had multiple surgeries because of it. To be a bit blunt – hydro can suck sometimes. You may only need shunt placement surgery, or you may need that plus a dozen shunt revision surgeries as well. Any given child can have a long battle with hydro, with their shunt, and be in and out of the hospital sporadically over the span of years.

Eliora has not had any other issues with her shunt since that last surgery, thank God.

Post 5th surgery… Her head looked so much better after they switched out the valve to a better, yet bulkier, one.

Bladder problems take things to a whole different level. There’s no real maintenance needed with shunts. You just basically keep an eye out for signs of a malfunction and you’re good to go. Bladder issues, on the other hand, can make an impact on your daily routine. An impact that everyone will adapt to and that will most certainly become your normal, but it’s still a change nonetheless.

Even at the lowest lesion level, the bladder and bowel muscles can be affected. The muscles may be too loose, resulting in leaking from both ends. Muscles may be frozen tight, so children need help peeing and pooping throughout the day. They may be totally fine, but have no feeling down there… it’s suprising the many different combinations of complications one child can have.

In Eliora’s case, she needed to be catheterized about 4 to 6 times a day because she wasn’t voiding all of her urine out on her own. However, everyone, even the urology docs, thought that she had some muscle control and could at least push most of it out. As far as pooping goes, she just leaked all day long.

This was all determined based on renal ultra sounds to the abdomen and a few MRI scans that were performed during her NICU stay.

BJ and Eliora at the zoo. After her surgery, she was required to stay as flat as possible until given the green light (about two weeks).

A concern that follows catheterizing is urinary tract infections (UTI). Think about it – a foreign object is being inserted multiple times a day into the body. I’m sure you can see why keeping everything sterile is of utmost importance. Washing hands, making sure the tip of catheter touches NOTHING, making sure the lube is sterile, and that Eliora is clean prior to being cathed. All of those things are essential in keeping her clear of UTIs.

I’m confident that many of you can attest to the fun involved in having a UTI… fevers, pain, blood in the urine. Fortunately, Eliora only experienced a couple. We were able to catch them early based on the color and consistency of her urine whenever we cathed her.

At some point early in the summer, Eliora had a urodynamics study done. This involved x-rays and tubes that actually measured the level of pressure in which her urine was released from her bladder. It was during this test that we learned that she actually could not void her urine AT ALL

She was having wet diapers because her bladder was getting so full, it was leaking from the build-up of pressure. The worst part of this was that her urine was refluxing back into her kidneys, which could lead to serious infections. I was extremely thankful that Eliora had not developed any serious infections due to this.

Eliora at SB clinic. Instead of having separate appointments to see all the different specialists, we go to “clinic” where we sit in one room and the doctors take turns coming to see us.

Up to this point, a lot of the “extra stuff” that comes with SB just seemed a bit surreal. It’s like we hadn’t mentally processed that certain things, like cathing, weren’t just temporary – it’s something she will have to do everyday for the rest of her life. Sure, when people asked and we talked about it, we would tell them that fact, but it wasn’t something we had fully acknowledged.

A few weeks after the urodynamics study, we met with her urologist. Dr. Smith is wonderful, but he certainly values his time. Maybe a little too much. He’s very thorough, asking questions, jotting down notes while adjusting his glasses every few seconds. He quickly covers the results of the study, informs us that Eliora is refluxing into her kidneys, needs to be put on daily doses of prophylactic medications, and needs to be cathed more frequently, about 8 times a day. Any questions?

Well, yes. What on Earth is prophylactic medication?! It’s just a fancy word for medicine that is used as a preventative rather than a treatment. Eliora was put on an antibiotic to help prevent infections and a drug that technically numbs the nerves in her bladder allowing it to expand further than normal as it fills with urine. Septra supression, a once-per-day antibiotic, and Ditropan, the 3x per day drug.

On a bad day, I will tell you that Ditropan is our foe. One of Ditropan’s side effects is overheating, something that is not fun to deal with over the summer. Let’s just say we were homebodies on super hot days because Eliora would reach over 101 degrees in a snap. On a usual day, however, I am thankful that she has been infection free since the start of her new cathing regimen and medication.

The benefits of her medications certainly outweigh the side effects. Soon enough (not too soon, though), we will begin to consider surgical options that will allow Eliora to cath through her belly button, but she will still have to take the meds.

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For the many:

Got a kid that doesn’t like being cathed? There’s a surgical option for you! It’s temporary, but a help: urethral dilation.

For those who are wondering why on earth we would want Eliora to have surgery (mitrofanoff) that would allow her to be cathed through her tummy, here’s why:

1. We would hope it would make it easier for her to self-cath when at school.

2. In the event she were to need help cathing, we don’t want creepers having access to her privates. Enough said.

Spina Bifida Awareness, Day 18

Day 18: Reality
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I’m going to back track a bit today to touch on something that I feel called to talk about.

Here’s the thing… I genuinely believe, with every ounce of my soul, that I was handpicked by God to be Eliora’s mother. We, BJ and I, were chosen. I may have just lost some readers with that statement, but today I’m only going to speak with honesty and authenticity.

It was scary. Nerve-racking. Stressful. It was down-right overwhelming when we learned Eliora had spina bifida. When soon-to-be parents are asked if they’re hoping for a boy or a girl, 95% answer with “we don’t care as long as it’s healthy”. I was one of those people. That was my go-to answer whenever I was asked that question, though I was secretly hoping for a little lady. So the day we were in the room with the perinatal specialist, the day we learned that our daughter was not “healthy”, we were floored.

Yes, life had slapped us in the face, challenging us, asking us “now what?” Yes, now what? We told everyone we didn’t care about anything as long as it’s healthy, and she’s not. NOW WHAT?

As I stated before, abortion was not an option for us. I’m about to get real, folks… Though many people believe that by terminating the pregnancy you are saving the child from a life-time of suffering, I sincerely want to say that is incorrect. Instead, you are keeping a human being from living what could be a very fulfilling, wonderful, amazing life full of everything but suffering.

{OMG Priscila, are we really going to talk about killing babies?} Uhm, yes and no.

Last night I was speaking to a couple of family members that were extremely encouraging about my writing. They mentioned perhaps pursuing it further, contacting SBA, getting my stuff out there. I had mentioned that many of those organizations probably want to stay PC about everything and most likely steer clear of writing that touches on controversial subjects like religion and human rights. They reassured me that I hadn’t delved into those topics too much, that my writing could potentially be openly accepted by those organizations. Hooray!

But, wait. Why hadn’t I talked about these things? These things are clearly an important aspect of Eliora’s story. Honestly, I was afraid. Afraid of losing readers, of losing the respect of friends, of not being liked, whatever. But enough is enough, I need to start writing from the heart.

Right now, I can only speak about spina bifida. I cannot speak for the masses, just what I know, what I have experienced.

As I’ve mentioned before, spina bifida is unique to every child. The specialists will throw words like paralysis, brain damage, feeding tube, and deformity without even knowing what the reality of your situation will be. You will not know what your child will be able to do until they are brought into this world. Even then, you still won’t know until you begin living the life you were meant to live with your SB baby.

I have this picture in my head of God sitting with a little Roladex-like archive of cute little babies waiting to be born. He picks up Eliora’s card, reads a little note he wrote himself that says “spina bifida”. He ponders for a moment about who will be the best parents for this baby girl, then says to himself “ah-ha!” and writes down Priscila and BJ Benson.

No joke, that may be how I tell the story to my kids.

I’m writing all of this in prelude to a confession. The reason that the last time I boo-hoo cried about Eliora having SB was the day we found out, the reason that I was more than okay with not having fetal surgery, the reason that I could enjoy my pregnancy is because I thought to myself “I was chosen to be the mother of this little girl. God saw something in me, knows something about me, that proves I will be the best parent possible to my children.” I had faith, a lot of faith, that everything was happening exactly how it was always intended to happen. That is the truth.

THE CONFESSION:

I lack any type of “normal”emotion when it comes to Eliora needing some type of drastic treatment, whether it be surgery or medication.

When Dr. Brahma tells me she needs to go under the knife again, I look at the situation as if I were just told my child was getting vaccines that day. I view it as a normal part of Eliora’s life. I’m not afraid for her, I don’t fret about the risk of her bleeding out, dying during the procedure. I mean, is there something wrong with me? Shouldn’t I be freaking out that my daughter needs to be put under anesthesia AGAIN, that her shunt incision needs to be opened AGAIN, that something is wrong with her shunt AGAIN? I sometimes try to feel these things. I make an honest effort, I do. But I just don’t have it in me.

I don’t think this is the norm. It’s absolutely normal to worry about the technical aspect of your child’s treatments, to feel nervous, upset, angry, that your child will have another procedure. You never know, I might be humming a different tune if Eliora ever needs a ridiculous amount of surgeries (like some SB children do).

Now that I’ve painted you a picture of a cold-hearted Priscila, I would like you to know that I am most certainly not made of ice.

When I was told that Eliora’s shunt valve needed to be replaced because it just wasn’t compatible with the amount of fluid she was producing, my primary concern was about Eliora’s comfort level. Mainly, how she would feel AFTER the surgery. My ultimate goal with Eliora is to comfort her, soothe her, and give her what she needs to overcome any obstacle that is placed before, to give her the strength she needs to battle anything that comes her way. I want to be a rock to her, though I have my moments where I can’t help but feel bad for the little girl attached to a bazillion monitors, tangled in cords.

However, it is in those moments that she radiates her strength, her bravery, and that resonates within my soul. It shows me what I have within me, the reason that God chose me to be her mother.

I am by no means a very stable rock. I have more than my fair share of emotional breakdowns, witnessed by BJ, but those are the moments when I let worldly thoughts consume me. When I forget that I have faith, that I have an all-mighty someone looking out for me, for my family.

We all are human, though, and I don’t want to devalue those sometimes necessary cry-fests where you can’t blubber out a single word. All you do is cry. You’re overwhelmed, you’re stressed, you’re drowning in medical discharge papers and prescriptions. Totally normal. Completely acceptable. I’ve been there.

But please (insert For the many: here) remember that you were CHOSEN. You were hand selected because you have it in you to be the most wonderful parent to your child. God looked at your baby and said “I have the perfect set of parents for you! They will love you unconditionally, they will tear down walls for you, they will be everything you need to make you the most amazing person.” Special needs or not, he says this to all babies.

And that, my friends, is the honest truth.

Spina Bifida Awareness, Day 17

Day 17: Normal
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“Poor baby” is what parents of SB babies typically hear or read across the faces of those who are told that the little one needs to be catheterized, needs a g-tube (feeding tube), or needs daily doses of prophylactic medication in addition to physical therapy, speech therapy, occupational therapy, etcetera, etcetera.

But, please, before you begin to feel sorry for our children, remember that this is something that will become or already is our “normal”. It’ll become so routine, such a basic part of our daily life, they’ll never know any different. The same can be said of a child with food allergies, diabetes, and the like. Insulin injections, peanut-free diets, all of those things that may be difficult initially, but will just become such a minuscule aspect of life.

Eliora after a very relaxing baby massage by her physical therapist.

At this point in the story, Eliora has just a couple of things that are a part of our daily norm: cathertizing and physical therapy. We had to cath her every 4 to 5 hours or so to get the rest of the urine she was unable to void herself. The physical therapy is something that all SB babies have and it’s a beneficial tool in promoting healthy physical development.

I can’t imagine what it would have been like to have a baby with spina bifida many years ago. There are so many resources available to families these days, so many levels of support provided by hospitals, local Spina Bifida Association groups, and community support groups. The doctors that handle your pregnancy case may not always tell you about all the information and help there is available to you, which honestly makes me sad. They focus so much on the worst case scenario, on telling you all of the things your baby will not be able to do, that they forget to mention all of the assistance you’ll receive once baby arrives – from the specialists working directly with your little one all the way to the therapists, nurses, and social workers.

Before leaving the NICU,  we met with a social worker who helped us get all of our ducks in a row before leaving with Eliora. Ducks meaning catheter supply orders and a referral to Babies Can’t Wait.

Babies Can’t Wait (BCW) is a pretty fitting name for the Georgia early intervention program, a program that focuses on assisting families with getting all the help they need for their children, because honestly – babies really can’t wait. What happens to a baby with low muscle tone that doesn’t receive the necessary therapy treatment for a year? Well, it might take them so much longer to hit developmental milestones and work out all the “kinks” to properly hit those milestones. What the heck to do you mean, Priscila? During that year the baby misses out on therapy, they may learn to bear weight on their fists while doing tummy time instead of opening their hands. Sure, at least they’re looking up while on their tummy, but this will adversely affect their ability to crawl. Crawling with closed fists is a difficult thing to do.

Many families work closely with BCW to help them get all of their evaluations done, which is exactly what we did. At this time we only needed physical therapy, but an entourage of people showed up in our home to evaluate Eliora. Our service coordinator along with the physical therapist and a few trainees were ready to do a complete run down of Eliora’s physical capabilities.

But, Eliora was so teeny at the time, still a sleepy baby, so it was difficult to see what she could really do.

Two things stood out:

1. She couldn’t open her left hand

2. She couldn’t move her left arm

At some point during her NICU stay, Eliora’s left arm lost all of its mobility. We have no idea why, some of the nurses said it could be birth trauma, but there was no way to really know.

During her eval, the physical therapist, Sharon, tried to open Eliora’s hand and she would just cry out in pain. In addition to mobility issues with her left arm and hand, her hips turned outward too far, she had low muscle tone, and her head favored a side (meaning she couldn’t easily turn her head completely from left to right or vice versa). Sharon assured us that each baby is different, that she would do her best to teach us exercises we could do with Eliora, and that Eliora would progress in a way that is unique to her. This in no way meant she would never reach milestones, it just meant we had to focus on very specific things to help her accomplish goals.

We were set to meet with Sharon every first and third Friday of the month in our home. She told us that it wasn’t necessary to meet more often, especially since she would focus on parent education and giving us daily tasks.

Yet, it’s difficult to do anything beyond baby massages when Eliora is too worn out from surgery. Especially since she had to go through ANOTHER shunt revision…

My nephew David holding Eliora a day before her 5th surgery, 3rd shunt revision. Can you just see how big her head is???

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For the many:

If you know someone who is in the midst of processing the news that their baby has special needs, please let them know that there are resources out there for them. I want to shout this to the world! I want everyone to know that there are people out there, not just doctors, that can provide invaluable information and support. Invaluable! Yes, it may take some effort in finding these groups and individuals, but sometimes it’s as easy as reaching out to medical professionals.

Shoot, just try Google-searching support groups, forums, and what not.

Spina Bifida Awareness, Day 16

Day 16: Malfunction
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It’s always stressful and worrisome thinking about an itty-bitty baby needing some type of surgical procedure. We view these wee creatures as fragile beings that deserve nothing less than endless love and affection. Yes – that statement is correct, but we tend to forget how resilient babies really are.

While I was off being a hot mess over Eliora needing yet another surgery (#4), Eliora could not have cared less over what was happening. Just another day in the life, right?

A couple of weeks had passed since Eliora’s emergency room visit – weeks of frustration. The bubble that had begun at her shunt incision site, behind her ear, kept getting bigger and spreading down the side of her neck, following the internal catheter that eventually ends at her tummy.

Feeding her was a nightmare as it usually ended with me in tears, Eliora gagging, and having to do anything and everything possible to get her to breathe and stop turning purple. This happened every single time she ate, at least 5 times each feeding. Nightmare.

But she is a ray of sunshine, and usually after a purple-faced episode, she would just look up and smile at me. A big gummy smile. As if we just played some fun game called “hold your breath and make Mommy panic”.

Family members would ask us about the “swelling” (though it wasn’t swollen, just fluid-filled) and we would tell them that Dr. Brahma said it would eventually vanish. It was a gradual swelling, so nothing was really alarming and we just kept brushing it off. It didn’t seem dire at the moment.

Until one day, my sister brought to my attention the fact that Eliora’s neck was insanely large – from the her incision site down to her chest.

It was at that moment I just wanted to slap myself in the face for not realizing how bad it was getting.

By then, I had acquired Annie’s email address. Oh, Annie… While I was positive she was sick of my emails asking “is this normal? What about that? And this?”, she always reassured me that she preferred parents like me over ones that didn’t say a word. It made them feel better about Eliora getting the care she needed. Well, here I was, feeling a little less than the primo care taker I led Annie to believe I was. But I digress, I was trying to d0 my best.

After emails were sent with pictures attached, they determined that Eliora needed to be seen right away. During our appointment, they told us we wouldn’t be going home. Eliora was going to be admitted and surgery would take place the following morning. I probably should have seen this coming, but I didn’t. I’m not sure what I thought they would tell me.

They determined that Eliora’s shunt valve had backed up some how, so none of the fluid was able to pass through the catheter. Instead, it was overflowing and pushing itself out of the hole in her skull.

Dr. Brahma and his skillfull team took care of this in less than an hour in the OR. When she came out, she looked amazingly better. Most of the swelling had gone down and the rest was expected to disappear quickly.

And by looking at Eliora, aside from the bandage around her head, you would have no idea she just underwent her fourth surgery.

Yes, I know that is the cutest picture you have ever seen.

As if she weren’t already adorable, they topped it off by adding a head wrap. You best believe I went out and bought some hats knowing how ridiculously cute she would look in them.

The bandage was there to add some pressure to the surgery site and prevent any fluid from escaping while everything healed. They only required her to wear it for a few days. And, for now, everything was better.

Okay, so this story was much less dramatic than what I perhaps led you to believe in my previous post. But I guess that’s the point. Sure, it sucked that there was another surgery, more time in the hospital, more time hooked up to monitors and IVs, but Eliora handled it much better than us grown-ups would have.

I had spent so much time feeling bad for my little squish that I didn’t give her enough credit for being so strong. She bounced back at the speed of light, ready to smile and spread more sunshine into the lives of everyone around her.

Nothing can hold this little girl back.
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For the many:

For those of you who are dealing with a little baby who needs surgery, I just want you to know that now really is the best time.

I had a friend tell me that it was a bit difficult having her 6 month old undergo shunt placement surgery because at that point he was already becoming mobile. He was starting to sit up, move around, and making more grandiose attempts at exploring his environment. Itty-bitties spend their days eating and sleeping, so recovery from surgery is much easier on them.

So, don’t worry if your little one has to face multiple procedures at such a young age. Even if they’re well into toddler-hood, they’ll surprise you with how strong and brave they are, and how quickly they’ll bounce back.

Spina Bifida Awareness, Day 15

Day 15: Leak
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“Does this look normal?” I asked BJ.

“Hmm. I don’t know.” The usual response from my dearest husband. I would have normally just shrugged his response off, but I was growing increasingly uncomfortable with what I was looking at.

It had been a couple of weeks since we brought Eliora home. We had been spending our days catching up on everything – life, laundry, cleaning, cuddling. Cuddling was my favorite, especially since I could snuggle with both my little ones at the same time.

I don’t recall what we had been doing that day, but I remember it was late at night. I had just finished nursing Eliora, a fluffy little squish that spent her days eating and sleeping. I had just sat her up to burp her when I saw it.

A little bubble had formed right by her shunt incision site, behind her ear.

Fluid-filled bubbles under the skin was not on the list of “things to look out for”. I had been making sure she wasn’t sleeping too much, spitting up, crying more than usual, keeping a constant downward gaze, or that her fontanel (the soft spot on her head) wasn’t feeling firm or full. All of those were on the list of signs of a possible shunt malfunction, but not this.

What should we do? If I had Dr. Brahma’s or his nurse’s email, I would send one right away. But they wouldn’t get it until morning. Is this serious? Should we go to the ER? Hmm. What should we do with Asher?

I’m not sure what the exact sequence of events that followed were… I may have called/texted people to see what they thought, I may have Google-searched “signs of shunt malfunction”. At some point, BJ and I determined it would be best if we took her straight to CHOA, just in case. Better safe than sorry, yes?

I called my mother asking if she could meet us at the hospital to take Asher. “Por supeusto, Mamita” was her response. I didn’t think she would say no, but I was relieved that she didn’t skip a beat in saying yes.

I was nervous. Scared. Anxious. I was hoping the medical staff wouldn’t think I’m a paranoid mother bringing her daughter to the hospital for some silly reason. What if the bubble disappeared by the time we got there? Let me check if it’s still there…

We arrived at the hospital, transferred Asher to my mother’s car, and headed straight to the ER. I got asked a million-and-one questions – when was she born, what surgeries has she had, when did she have to surgeries, does she have any allergies, yaddy-yaddy-ya. Weren’t we just here? Can’t they just look it up?

After getting her vitals, taking us to a room, and asking us more questions, I was told not to feed her just in case she were to need immediate surgery. I hoped and prayed she wouldn’t get hungry. It’s hard for a mother to deny her baby food, especially if said baby is crying.

The ER doctor came in, who is not a specialist or very well educated on spina bifida. In fact, none of the staff knew a whole lot about spina bifida. They were all wondering how my baby got it, if surgery had “fixed” it, why she needed to be cathed, etc. The doc asked me more questions, reprimanded me for letting Eliora sleep on her tummy, and then ordered a head CT scan and shunt series. None of Eliora’s doctors were available and the on-call neurosurgeon was actually in the middle of surgery.

We waited until we were finally led to room where the scan and x-rays would occur. Sweet Eliora was well-behaved during the entire process – just staring, taking in her environment, listening to Mommy’s voice. We wouldn’t know the results right away since the doctor’s were too busy at the moment. After all was said and done, we went straight back to the room to do more waiting.

Then the crying started. She was hungry and I wasn’t allowed to feed her. They said she could have Pedialyte, but it never came. I was given a paci and some sugary water to squirt onto the tip to get her interested in the unsatisfying silicone piece of nonsense. BJ and I took turns trying to comfort her, hunched over the side of the bed, stroking her arms, whispering to her, singing songs, doing everything and anything we could.

A nurse walks in, IV supplies in hand. They needed to go ahead and stick her in preparation for the possible surgery.

I would have done anything (ANYTHING) to have switched places with Eliora. I desperately wanted to take her place, to be the one who was stuck with a needle 6 times because 4 (FOUR!) nurses couldn’t get the job done. Arms and legs. If they had not succeeded by the 6th try, they were going to try her head. I wished I could nurse her, at least just to provide some comfort.

We were finally admitted. Still no eating allowed, Eliora had tired herself out into a restless sleep.

It was morning by the time Dr. Boydston, another neurosurgeon, and his nurse came in to let us know surgery wouldn’t be necessary. The scans and x-rays looked perfectly normal, everything seemed to be working. But why the bubble? The neurosurgeons would be changing shifts soon, and Dr. Brahma would be there to take a deeper look.

Though I was glad to finally be able to nurse Eliora because there would be no surgery, I was a little frustrated that everything seemed normal. A bubble does not look normal to me.

When I began feeding Eliora, she was choking a little bit every few sucks. This was something that had been happening on-and-off, but I thought it was because I was producing enough milk to feed a small village, therefore overwhelming Eliora with too much milk at once.

Dr. Brahma and Annie, his nurse, arrived. He was in one of his usual sweater vest-shirt-tie combos and she looked exceptionally well-dressed for the occasion. In his calming voice, he explained that fluid was leaking from the hole in her skull where the catheter enters her brain. Hopefully her body would absorb this soon, therefore making the bubble disappear.

Annie patted my shoulder and reassured me that we did the right thing by bringing her. I explained how Eliora occasionally chokes when she eats, so they ordered a swallow study – where feeding specialists (speech therapists) watch Eliora eat through an x-ray machine. They determined she just needed to be paced and taught how to suck, swallow, then breathe. Apparently she was forgetting the breathing part.

After another day at the hospital, we were discharged.

But the bubble didn’t disappear, it got bigger. And she wasn’t just choking anymore while she ate, she was gagging and turning every shade of purple.
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For the many:

It’s difficult to know when a symptom should be taken seriously or if we should just wait things out. Many of the symptoms of a shunt malfunction can be easily mistaken for something less serious…

http://hydrocephalus.allanach.dk/complications

Spina Bifida Awareness, Day 9

Day 9: Ventriculoperitoneal Shunting
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Don’t be fooled into thinking that I actually remember Eliora’s NICU stay well. As I write these posts, I’m constantly checking Facebook and the pictures I have saved on the computer. I’m checking dates, trying to remember what happened and when.

Thanks to modern technology, I now remember that Asher went to the Atlanta Zoo while I was at Kennestone.

I hope this is encouraging for parents that are expecting an SB baby. I hope it shows you that while things may be rough at first, the next thing you know, you’re baby will be 7 months old and you will have been out of the hospital longer than you have been in. Of course, that isn’t always the case, some children end up requiring more, needing a higher level of attention. And for the parents whose baby falls into that category, remember that God chose you because He knew you were the one for the job.

Anyway, back to the story….
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Before Eliora was born, we had met with a neurosurgeon at Children’s Healthcare of Atlanta at Emory. If anyone has ever driven in Atlanta, you know that you’d rather peel your skin off with a spoon than sit in the rush hour traffic (that seems to start before and last well after “rush hour”). For this reason, and the fact that Emory was a bit too far of a drive for nearby family, we decided to have Eliora treated at Children’s at Scottish Rite. Because of this change, we did not know who Eliora’s neurosurgeon would be. I didn’t meet the man until my first visit to CHOA.

Dr. Brahma – a man with gentle eyes, a firm handshake, and a subtle hint of charm in every word he speaks. He probably picks out his sweater vest/dress shirt/tie combo every night before bed. I’ve never seen his socks, but I’m sure the argyle print matches the the same shade of purple in the pin stripe found on his shirt. He has this calming effect when he breaks the news of yet another surgery, making you feel like it’s not a big deal, he’s got it. Oh, and I forgot to mention that he looks no older than 25. If I could find his source for eternal youth, I bet I could sell it for millions just by plastering his face on the packaging material. Eliora has one good looking neurology team comprised of a beautiful blonde nurse and a charming doctor who gels his hair.

I had heard many wonderful things about Dr. Brahma prior to having Eliora, so I was more than relieved when I learned he was going to be her neurosurgeon.

During one of our first meetings, he broke the news to us that our daughter had hydrocephalus. We weren’t surprised. During all of the sonogram sessions with Dr. Allen, he had always mentioned that Eliora’s ventricles (think of little fluid-filled sacs in the brain) were enlarged.

So… what is hydrocephalus? Excellent question. In a nutshell:

There’s a whole lot of cerebrospinal fluid (CSF) filling up the ventricles in your brain. Why? Maybe your brain never learned to absorb it, maybe your body is creating CSF faster than it is absorbing it, maybe there is something obstructing the flow. Bottom line is that your ventricles are getting big and that is a problem. Why is it a problem? Well, untreated, hydrocephalus can cause:

-Intellectual, developmental, physical disabilities!

-Blindness!

-Brain damage!

-Death!

Okay, I’m done trying to scare you. None of those sound like a lot of fun, so the solution is to place a Ventriculoperitoneal (VP) Shunt. What did you just call me, Priscila? No, no, I would never say that to your face. The shunt is placed under the skin and it sucks the CSF out of your brain, sends it through a catheter that will permanently be in your body, and dumps it in your abdominal cavity to be absorbed by other organs.

This is a VP shunt.

Woo-hoo!  A solution, it sounds so easy, why was I even worried about a shunt to begin with? Well, we definitely wanted Eliora to have a shunt if she needed one, but there are a lot of complications that could occur, more surgeries that could result from having a shunt. Some kids have back-to-back-to-back-to-back surgeries because their shunt and body can’t come to terms, others have their shunt placed and that’s it.

So the little miss had her shunt placement surgery at just a few days old. An incision on her head, one on her tummy.

The incision on her head. The skillful Dr. Brahma didn’t even have to shave her hair off.

I wish I could say that was it. That it was smooth sailing from there, that we just had to get her nice and plump by drinking hoards of milk per day before we could bring her home.

But you can’t appreciate things that are too easy, right?
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For the many:

Wanna see something gross? Me, too!

http://www.youtube.com/watch?v=A2E8xFQ3aQY