Hydrocephalus Awareness WALK

It's been a pretty intense week.

Quick Update:

We went to the pediatrician's office every day it felt like. Mia's results came back for her UTI sample and it turns out she had an infection called, pseudonomas aeruginosa on top of the ear infection. This type of UTI is very uncommon in babies, but really common in Spina Bifida babies. The bad thing about it is that it's pretty harmful and it's antibiotic resistant. There's only a couple antibiotics that can fight it, but even then the infection can fight the antibiotic half way through treatment and stop working.

Her pediatrician has amazed me, she has been on top of things calling Mia's Urologist and the nurse in charge of the Spina Bifida clinic. Everybody is in the loop and aware of Mia and her needs. They all agreed to get her on another antibiotic -- which took 2 hours to get and I had to go to Primary Children's to get it because no local pharmacy has the liquid form and Primary Children's didn't have the generic one so it took some time for the insurance to approve it.

I talked to Urology and we've increased the times we straight catheter Mia to 3 times a day instead of 2. That way, we can help her empty out her bladder and get rid of the infection faster.

She's doing better. We've finished the ear infection treatment. Her urine seems clearer and she seems to not be in pain anymore during cathing. Yay!

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In the blink of an eye, Saturday was here and it was time for,

THE HYDROCEPHALUS AWARENESS WALK!

Team Mia Grace. We are missing Mario and Dulce.

I am so grateful for everyone who joined us on this walk also for those of you who donated online. We have the best family and friends! It was so fun! It was really family friendly, they had face painting, and other games for the kids. They also had a fun raffle game. It was very comforting to see the community of hydrocephalus warriors and their families.

When Life Flight came, everyone was cheering and so excited. They made quite the cool entrance.
I said like 10 prayers inside of me that no one would need to use it. 

We took a walk on the trail of the park and it was a great time to learn more about Hydrocephalus and become aware of who, what, when it affects.

They had these signs posted along the walk with information about Hydrocephalus.

I'm so glad my friend and neighbor Yunuen took these pictures.
There we are, enjoying the walk with our families.

Bret won a cool shirt about Hydrocephalus, wish you could see the front.
 I got it a bit big for him so he could grow into it and use it a lot! 

Another good picture of part of the team. 

The walk lasted probably like 15 minutes, but we learned a lot with those signs. Afterwards, the kids went to the playground and had a good time there.

I am definitely going back next year and I invite anyone who has a child or knows of a child (or anyone) with hydrocephalus to go! You won't regret it! You and others will learn more about Hydrocephalus and have fun doing it at the same time. Did I also mention there was free food?! So, if you aren't sure, at least go for the food! Then, you'll leave with your mind and body fed!

Mia wasn't feeling super awesome. She wouldn't give us any of her signature smiles, but she gave us a bunch of these really gorgeous faces...

I feel like Mia has a lot of wisdom in her. You can see it in the way she looks at you. I bet God makes it so babies don't talk because if they did, our minds would be blown!

At the end though, she had some fun with grandpa as she imitated his funny sounds. We finally got a smile out of her.

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Finally, we're still watching Mia's shunt because her chances of a shunt infection have increased since she's had these two bad infections. I am so proud of Mia and how far she's come. Her shunt is swelling up again, but whatever the future brings... BRING IT ON! Meanwhile, I'm going to enjoy my baby girl and all that she does on a daily basis.

Thank you everyone who has been supporting us through this. Our Hydrocephalus FAQs post has reached 1000 views and I'm so glad we've been able to bring awareness about this condition to so many people. If you see or know someone with Hydrocephalus give them a hug!

Bret is really good at that

When Life Gives You Lemons...

I started writing this post yesterday, but I was too tired to finish it.

Dad, Mia, and Bret have been battling pretty bad colds for the past two weeks. Mia started it, then Bret got it, then dad. Mia went into surgery and dad got it BAD. He shared his drink with Bret then HE got it bad. Mia came home from the hospital, Bret coughed on her, then SHE got it bad.

It's been over two weeks though and the kids aren't getting better. Especially Mia. I called the pediatrician's office yesterday because her pee has been different since Friday (every time I straight catheter her), and she threw up her milk in the morning. She was too phlegmy to keep it down. They said that since she is "high risk" I needed to take her in so they could make sure everything was okay.

Getting a kidney and bladder ultrasound on Friday before SB clinic. Everything seemed fine then

At the pediatrician's office, we cathed her again to check for a UTI and the doctor told me she had an ear infection in both ears. My heart dropped, skipped a beat, stopped beating and I cried a little. If Mia has ANY type of infection, especially so close to her shunt surgery, it can cause a shunt infection. That is one of my worst fears. It means a two plus week stay in the hospital, another  brain surgery, and some permanent damage to parts of her brain. NO!

But, I try to stay positive and think of the best case scenario (after my brain has gone through all THE WORST case scenarios). We were given antibiotic and sent home.

Meanwhile, Bret went to work with dad. They got two lawns mowed and trimmed while Mia and I were at the pediatrician's office and getting her medicine.

Bret has been feeling crabby as well. Crying a lot and wanting to be held all the time, but not, but yes, but not. So, we've watched Ice Age, Tarzan, Brother Bear, cuddled, cried and slept. The kids took a LOOOOONG nap that day. Several actually.

Bret and his bear, Oso Moreno, are inseparable

They told me to take him to the pediatrician's office too to check for an ear infection as well. So, Grandpa came over to watch Mia and I took Bret to the pediatrician's office. We joked about me getting a "frequent customer" card. Then maybe after 10 visits, I can get a pedicure or something!

Besides a bad cough, he's doing great!

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Today, Mia woke up and drank her morning bottle then, she went to sleep. She slept from 8:30 am-1:00 pm. I was concerned about how long her nap was. Then, when she woke up, I noticed some swelling behind her ear along her shunt. My heart dropped. I had called the Spina Bifida clinic yesterday and the nurse in charge of the clinic told me she was concerned about her ear infection and how that might affect her shunt. She was already red flagged because of her ear infection, now the swelling? The pediatrician, Spina Bifida Clinic, and neurosurgery were all informed. I was advised to take her in to the E.R. to be evaluated.

The swelling went down while we were there, but it keeps swelling and shrinking, then swelling and shrinking. So, we have to watch it and watch out for symptoms of a shunt malfunction or an infection then follow up with neurosurgery next week. 

Heath took Bret with him to class, then grandma and grandpa picked him up until I was done so Heath could go to his evening class. 

I worry about Mia a lot. I don't want to lose her brain. All the progress that we've made. There's a lot of things in her future that are so uncertain and I worry about. So, making sure I catch a malfunction or an infection in time, makes me feel like I can save her. Save her brain. All the E.R trips and phone calls are worth it, as long as I can see her eyes look at me, and her hands reach up to grab my face. As long as she can laugh, recognize those around her and not worry about seizures and other things. 

Our family, friends, neighbors, church members, and team of doctors have helped SO much! I am so grateful for all the people we're surrounded with who have helped and ARE helping us. Thank you for watching Bret with such short notice and for long periods of time, for coming over, keeping me company, letting me vent. Doing fun things as moms. For loving our family, especially my kids. For killing spiders for me when Heath's not home. For all the dinners that have been brought (I'll give you back your dishes I promise!). For your texts and calls. For those who live far away, your support and words of encouragement mean the world to us. To me. I love each an every single one of you. Thank you!!

So I guess, when life gives you lemons, 

Thank the high heavens there are people around you who bring water and sugar. Then you can actually make a pretty descent lemonade. 

My current favorite song. Besides being great for the Olympics, it makes me want to try harder at life!

Nuestra Batalla con Hidrocefalia (Preguntas Frecuentes) *SPANISH VERSION OF FAQs*

En primer lugar, permítanme decir que esta es nuestra experiencia personal con hidrocefalia. Si desean obtener más información general sobre el tema, no dude en visitar los sitios de web que aparecen al final de este post.

¡Gracias!


Preguntas Frecuentes

Las siguientes preguntas no están en ningún orden en particular. Son sólo preguntas que las personas nos han preguntado en los últimos meses.

1. ¿Qué es la hidrocefalia?
Se nos explicó al estar embarazada con Mia, que debido que la espalda de Mia no se formó por completo, se creó un saco de líquido en su la espalda.

Este saco estaba lleno de líquido cerebroespinal (LCE). Mientras aún estaba dentro de mí, el fluido se escapaba de este saco en el líquido amniótico. Una vez que ella nació y se realizó la cirugía para cerrar su espalda, el fluido no tenía ningún otro lugar a donde ir. Por lo que comenzó a acumularse en su cabeza. En promedio, la cabeza de un bebé recién nacido se supone que crecen 1 cm a la semana. En el caso de Mia, después de su cirugía de la espalda, comenzó a crecer desde 1 cm - 2 cm cada día. Así que ella recibió su primera derivación a los 10 días de edad.

La hidrocefalia es la acumulación de líquido cerebroespinal en el cerebro.


2. Oh, pero esto es sólo una cosa temporal verdad? Ella se va a curar y no va a necesitar uno más?
No. Es una cosa de para siempre. Ella siempre va a necesitar una derivación a fin de que su cerebro tenga la cantidad adecuada de líquido cerebroespinal.


3. ¿Cómo saben cuando una derivación no está funcionando? No es como si ella te pudiera decir lo que está mal.
Esto es realmente una pregunta que preguntan todo el tiempo. De acuerdo con el neurocirujano de Mia, ella tiene síntomas atípicos de un mal funcionamiento de la derivación.
Los síntomas de una disfunción de la derivación en un bebé:
         1. Vómito
         2. Dormir demasiado
         3. No comer lo suficiente
         4. Irritabilidad
         5. (El que me da más miedo a mi)

         Convulsiones
         6. Su mollera está abultada y llena.
         7. Su cabeza aumenta de tamaño.

Si esta imagen fuera 3D, se vería más como una salchicha

Los síntomas de Mia de una disfunción de la derivación
         1. Recolección de LCE a lo largo de la

         derivación (especialmente en el cuello)
         2. La mollera está abultada y llena
         3. Vómitos
         4. Regresión en hitos o no cumplirlos

         para nada
         5. Siempre le miden la circunferencia de la cabeza a Mia, pero ya no crece de un lado a otro. Su cabeza crece hacia arriba.

Sin embargo, a medida que ella crezca, y su cráneo se selle, cuando la derivación deje de funcionar los síntomas se presentarán más rápido y con más fuerza. Yey...

4. ¿Es mortal? ¿Cuánto daño hace realmente?
Si no se trata, sí. Puede ser mortal. Temo que sería una muerte muy lenta llena de presión.
Imagínese, si ella no tuviese el cuidado que necesita, el fluido continuará acumularndose y su cabeza se inflaeía como un globo. Los posibles problemas que puede causar son,
 1. Ceguera
 2. Convulsiones
 3. DAÑO CEREBRAL (ésto también es algo muy aterrador para mí)

Así que me preocupo. Me preocupo en cuanto su derivación comienza a hincharse. Inmediatamente estoy en la constante vigilancia para los síntomas de un fracaso. La mayoría de las veces es bastante alegre y come mucho! Pero, cuando comienzo a notar la regresión en el desarrollo o retrasos, me pongo en pánico y las visitas al cuarto de emergencias comienzan a ser más frecuentes. La cosa es que no sé cuando estoy "justo a tiempo" o "demasiado tarde" cuando se trata de un mal funcionamiento de la derivación. Amo a Mia y lo alerta que ella es, ella es un bebé bastante normal. Sin embargo, esto puede cambiar si hay una infección o un mal funcionamiento. Esta vez fue mucho más rápido. Sólo tomó una semana para que el LCE se juntara alrededor de su derivación en su cuello y comenzara a crecer. Sólo tomó una semana para que su mollera se llenara.
Puede causar daños graves y no volverá a ser la misma. Tengo miedo de eso. Así que, lo siento si a veces no te he dejado cargarla , ni que le toques la cabeza, o no te he permitido que le des vueltas, o he hecho algún comentario de la  posición en que la cargas. Sobre todo después de la cirugía, sólo quiero que ella este bien. Quiero que la derivación funcione para que su cerebro haga todo lo que un cerebro normal hace. Siempre.

5. Entonces, puedo cargarla?
¡SÍ! Sí puedes. Eso sí, no le toques la cabeza, beses la cabeza, o darle vueltas! (Esto es sobre todo después de cirugía). Dale tiempo, hasta que todos sus puntos se disuelvan, y luego puedes darle besos. ¿De acuerdo? ;) Eso si, lo de la vueltas, nunca esta bien. Su cerebro procesa la presión un poco diferente al tuyo. Y cuando le dan vueltas, se le hace todo vueltas adentro y es muy incómodo para ella.
Sí puedes abrazarla y amarla y besar los dedos de los pies! Y jugar con ella! Ella ama a la gente y le encanta la atención. Y me encanta cuando otros ven lo increíble y divertida que es.

6. ¿Cómo se ve como una derivación? ¿Es realmente una cirugía cerebral?
SÍ, ES UNA CIRUGÍA CEREBRAL!! Y lo más que aprendo sobre ello, lo menos me gusta. Lo menos cómoda estoy con ella tener que haber recibido 3 de estas cirugías! Y lo menos cómoda que estoy con el hecho de que esta es la única solución a este problema ahora, y si ella no tiene uno, ella muere. 😢

Tah-dah! Una foto de como es la derivacion. 

¿No tiene el cráneo más bonito que has visto en tu vida?! Mira esos dientecitos esperando para salir!

Luego, le abren detrás de la oreja, y toman un instrumento plano para abrir su piel y guiar la derivación hacia abajo en la cavidad abdominal, donde se enrosca alrededor y alrededor. De esta manera, a medida que crece, se desenrolla y crece con ella. Eso le duele a Mia también. Esta última cirugía, ni siquiera me dejó tocarla.

7. ¿Cuántas de éstas derivaciones tendrá ella?
¡Quién sabe! Esperemos que esta última derivación que le pusieron dure mucho tiempo. El radiólogo me dijo el otro día que el tiempo más corto que ha visto que una derivación dure  es, un fin de semana (el niño tuvo que obtener 3 derivaciones diferentes en un fin de semana!). No me gustaría eso! Entonces, dijo que el tiempo más largo que ha visto una derivación permanecer en alguien, es 14 años! ¡Que padre no!  Deseo que esta nueva derivación de Mia le dura la verdad.

Así que mientras tanto, disfrutamos los tiempos buenos.  Disfrutamos todas las sonrisas y la totalidad de la salud que tiene. Celebramos cada hito y cada pequeña cosa que logra porque oigan, EL CEREBRO ES INCREÍBLE!



Para obtener información más general por favor haga clic aquí

Si tiene cualquier otra pregunta, no duden en preguntar! Damos la bienvenida a todas las preguntas en respecto a nuestra experiencia con hidrocefalia y espina bífida.

Recuerden, que este mes es para traer conciencia de la hidrocefalia! Unanse a nuestro equipo y caminen con nosotros el 17 de Septiembre y visiten este sitio web para unirse a nuestro equipo o para donar! Tenemos un objetivo del equipo de $500. Todas las donaciones van a la dotación de más investigación para encontrar una cura para la hidrocefalia! En otras palabras, haciendo que la vida de Mia sea mejor en el futuro! Mi objetivo este año no es muy alto, porque ya casi es el 17 y porque me acabo de enterar de esta caminata la semana pasada (después de la cirugía). Sin embargo, no duden en donar lo que puedan o no donar para nada, pero compartir nuestra historia.  

GRACIAS POR LEER, POR SU AMOR Y APOYO, Y POR TODAS SUS ORACIONES! 

Our Battle with Hydrocephalus FAQs

First, let me just say that this is our personal experience with hydrocephalus. If you want more general information about it, feel free to visit the websites listed at the end of this post.

Thank you!

FAQs

The following questions are not in any particular order. They're just questions people have asked us over the past few months.

1. What is hydrocephalus?
It was explained to us, that because Mia's back didn't form completely, it created a sack on her back.

That sack was full of spinal fluid. While she was still inside of me, the fluid would escape out of this sac into the amniotic fluid. Once she was born and performed the surgery to close her back, the fluid didn't have anywhere else to go. So it started collecting in her head. On average, a baby's head is supposed to grow 1 cm a week. In Mia's case, after her back surgery, it started growing from 1 cm - 2 cm every day. So she received her first shunt at 10 days old.

Hydrocephalus is the accumulation of cerebral spinal fluid in the brain.

2. Oh, but this is just a temporal thing right? She'll heal and won't need one anymore?
Nope. It's a forever thing. She'll always need a shunt in order for her brain to have the right amount of cerebral spinal fluid (CSF).


3. How do you know when a shunt isn't working? It's not like she can tell you what's wrong. 
This is actually a question we get asked ALL the time. According to Mia's neurosurgeon, she has atypical symptoms of a shunt malfunction.
Symptoms of a shunt malfunction in a baby:
          1. Vomiting
          2. Sleeping too much
          3. Not eating enough
          4. Irritable
          5. (The most scary to me) Seizures
          6. The soft spot is bulgy and full.
          7, Increased head size

If this picture were 3D, it would look more like a sausage

MIA'S Symptoms of a shunt malfunction
          1. Collection of CSF along the shunt (especially on her neck)
          2. A full, bulgy fontanel (soft spot)
          3. Vomiting
          4. Regression in milestones or not meeting a milestone
          5. They always measure Mia's head circumference, but it doesn't grow from side to side anymore.  He head grows up.
As she grows though, and her skull fuses, when she has a malfunction, it will present itself faster and with more force. Yipee...

4. Is it fatal? How harmful is it?
If mistreated, yes. It can be fatal. It would be a very slow pressure-filled death. 😩
Just imagine, if she didn't get the care she needed, the fluid would continue to build up and her head would inflate like a balloon. Possible problems it can cause are,
  1. Blindness
  2. Seizures
  3. BRAIN DAMAGE (this one is also very scary to me)

So I worry. I worry as soon as her shunt starts to swell up. Immediately I'm in the constant look out for symptoms of a failure. Most of the time she's pretty cheery and eats a lot! But, when I start noticing the developmental regression or delays, I go on panic mode and the E.R visits start becoming more frequent.
See, the thing is, I don't know when I'm "just in time" or "too late" when it comes to a shunt malfunction. I love Mia and how alert she is, she is a pretty normal baby. However, this can change if there's an infection or a malfunction. This time around it was so much faster. It only took a week for the CSF to collect around her shunt in her neck and start growing. It only took a week for her soft spot to be bulgy.
 It can cause serious damage and she won't ever be the same. I'm scared out of my mind of that. So, sorry if sometimes I haven't let you hold her, or touch her head, or let you swing her around or made any comments towards the position she is in. Especially after surgery, I just want her to be okay. I want her shunt to work and her brain to do everything a normal brain does. Always.

5. Soooooo, can I hold her?
YES! Yes you can. Just don't touch her head, kiss her head, or swing her around! (THIS IS MOSTLY AFTER SURGERY). Give it time, until all her stitches dissolve, then you can kiss her head. Deal? ;)
Yes you can hold her and love her and kiss her toes! And play with her! She loves people and she LOVES getting attention. And I love it when others see how amazing and fun she is.

6. What does a shunt look like? Is it really brain surgery?
Well no. It's not. I just want you to feel bad for us and Mia...

NOT!

haha (sorry, that was rude).

YES IT IS BRAIN SURGERY!!! And the more I learn about it, the less I like it. The less comfortable I am with her having had to have had 3 of these surgeries! And the less comfortable I am with the fact that this is the only solution to this problem as of now, and if she doesn't have one, she dies. *Insert a grunt right here.*

Tah-dah! The actual device!

Doesn't she have the coolest cranium you've ever seen?! Look at those teefies waiting to come in!

Then, they open up behind her ear as well and take a flat instrument to open up her skin and guide the shunt down into her abdominal cavity where it coils around and around. That way, as she grows, it uncoils and grows with her. Then Mia is sore from that too. This time around, she wouldn't even let me touch her.

7. How many of these will she have? 
Who knows! Hopefully this last shunt they put in lasts us a while. The radiologist told me the other day that the shortest time he's seen a shunt work is, a weekend (the kid had to get 3 different shunts in ONE WEEKEND!). I would hate that! Then, he said the longest time he's seen a shunt stay in, is 14 years! Heck! I wish Mia's new shunt lasts her, honestly.

So meanwhile, we enjoy the ups! We enjoy all the smiles and all of the health she has. We celebrate every milestone and every little thing accomplished because people, THE BRAIN IS AMAZING!

For more general information please  go here

If you have any other questions, feel free to ask! We welcome ALL questions in regards to our experience with Hydrocephalus and Spina Bifida.


THANK YOU FOR READING, FOR YOUR LOVE AND SUPPORT, AND FOR ALL OF YOUR PRAYERS!

*Update 2019: She's been surgery free for 2 years! Still I worry whenever she starts vomiting or if she falls and hits her head. So far, the surgeries haven't affected her intellect. She talks in English and Spanish and understands both languages very well. She loves drawing and telling jokes! She's a character.