Mia is 7 months!

Photo Credit: Jhonattan Villalobos

Is this year flying by or what?! My baby girl is 7 months!! She's a warrior.

I want to title this month, "The Fight of the Infections". She had an ear infection in both ears and she had a Urinary Tract Infection (UTI) called, pseudomonas aeruginosa. It's a pretty bad UTI and we had to start straight cathing her 4 times a day, instead of 2 because she wasn't peeing on her own anymore. Thankfully she started peeing on her own and we're down to just 3 times a day. This type of UTI is not very common in regular babies, but it's pretty common in Spina Bifida babies because they have to be cathed daily and that introduces bacteria (no matter how clean or sterile you do it).

After she got over that, the swelling alongside the shunt started going down and we were able to breathe for like, two days. She then started throwing up at least once a day. When I felt along the shunt, I felt a really hard ball right behind her ear next to the shunt. It almost fell like a bone growth. I called neurosurgery and they got me in to clinic the next day. When they saw her, they told me she had two lymph nodes that were swollen. 

Yes. I totally made a cartoon of what's going on inside of Mia

Basically, the lymph nodes next to the shunt became swollen because they are fighting off an infection. Since she was better from the UTI and from the infection in her ears I asked the Neurosurgeon, what infection are the lymph nodes fighting? He said that they weren't sure, but that they were pretty certain it was the shunt. 

A shunt infection is probably the worst thing that could happen to her because it could cause some permanent brain damage and we won't know exactly what part of the brain it affected until she's older. 

Her body however, is trying so hard to fight the infection, so she hasn't gotten super sick yet. We're still on surgery watch with Mia. If her body is able to fight off the infection, great! If not, she'll be in the hospital for a couple of weeks and they'll go in, take out the shunt, then have the fluid drain outside of her body until the infection clears. Then, they'll go back in and put the shunt in. 

When I asked if we could check to see for sure if she has a shunt infection, they told me that they couldn't do that. They can and there is a way to know, but it's too risky and it can introduce infection and make things worse. So, we'll just let her fight it off on her own. 

So while we wait for the infection to take its course, we celebrate other things:

Mia now JUMPS!! I am so proud of her! She loves bouncing up and down and loves doing it to the rhythm of music. This is great because it means her legs are getting stronger. She's working hard on her lower body strength and doing amazing!

She can sit without help for about 10 seconds! She either falls over to the side or she folds in like a sandwich (hahaha). But, she's using her hands for support so much more and her glutes are getting stronger! 

We have come so far mobility wise. I can't believe how much she can do! She is kicking hydrocephalus' butt! Telling it who's boss! 

She grabs her feet! She was first doing it only with her left hand, but now her right hand realized there's also a right foot she can grab! So, she's opening up her right hand more than before and grabbing her feet!

They love watching "Brother Bear" and "Kung Fu Panda"

She loves her brother and when he plays with her

My #1 companions

They even came to my mission reunion with me

All in all, I'm so grateful for my baby girl and the strength she has. I love her so much!

Happy 7 months Mia Grace!

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.

-----

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!

-------

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.

Mia gets an MRI

Sometimes I wish I could be like Bret. I wish I could throw myself on the floor, kick and scream for a good hour. Let some frustration out, then re-group and continue with life like it's a bowl of cherries.
Instead, I find myself reaching my breaking point and producing shoulder-trembling sobs over the phone with a friend, or with a nurse I've never met, or one I've met too many times. It's a short lived tantrum as my mind tries to come to terms with my daughter's brain condition, my lack of knowledge, and all the new information I have to learn and cope with. Sometimes I need to cry for a good minute or two before composing myself in order to get the strength I need to do and learn what I need to do to help Mia.  I think if maybe I just stood outside the E.R and yelled,

THIS FREAKIN' SUUUUUUCKS!!!!

I would save myself the embarrassment of breaking down as often and in front of so many people.

Anyhow, enough about me. This post was about Mia's MRI anyway.

Yesterday we could NOT get Mia's pain under control. Being held hurt, touching her hurt. If I just laid her down and left her there, it hurt. Whenever I tried giving her some Tylenol, she would gag and throw up the medicine and her entire bottle.
She had a rough day yesterday too. I shaved her hair off in order to "even out" the bald spots created by the neurosurgeons. But there's no even-ing it out. It looks awful and I mourn the loss of Mia's hair, but I look forward to 2 weeks from now when it's grown out.

She still looks so pretty! Look at that face! 

Then, we went to the pediatrician's office for her 6 month check up and shots, where I had one of those breakdowns I mentioned above. Everyone loves Mia at her pediatrician's office.
So, after a 5 hour nap and taking an hour and a half to drink her bottle, then throwing it up... Again. I called neurosurgery. They told us to take her to the E.R. again.
I was going to have Heath stay with Bret, while I went with Mia to the E.R. but if I had to go to that place by myself again, I was going to do more than just sob for a minute or two. So, Bret's grandparents took him and I left (he gave me the tightest hug and broke my heart some more because I wasn't sure if we were going to go home that night or spend another night at the hospital).
While at the E.R. you have to tell like 10 different people the same information over and over again. I was so glad to have Heath there for moral support and to keep me from breaking down. Especially when they told us that there might be something wrong with her shunt. Again.

Mia had her very first MRI. She's so brave, that thing is loud and scary. I personally hate getting MRI's, but like everything, she took it like a champ. I have never seen a more beautiful brain. I know I'm biased and Mia's brain is the only one I've ever seen consistently, but I was proud of myself for being able to detect the ventricles in those scans and notice an improvement from last week. Still, when the neurosurgery resident came to our room to explain the shunt to us, I realized that we've just begun scratching the surface in our knowledge of the brain and all its intricacies.
This is how I can best explain it...
The brain has a bunch of freeways and highways where fluid travels. A shunt provides another way for it to travel. However, when there's scar tissue (from a shunt placement or a revision), sometimes it can block that exit way. That blocks the shunt and keeps it from working. That's what happened to Mia's shunt this last time and why they had to put it in the other side. LAST time, the shunt wasn't "shunting" enough, and THIS time it's shunting just right. So, her head had to get used to the new pressure of fluid.
Is your mind blown yet?
Mine was.
That's why Mia was so irritated changing from a sitting position to a laying position, to ANY position. The pressure in your head changes every time you do that. But our brains regulate it faster and get used to it faster than a person with hydrocephalus who's just had their shunt changed.

Look! Mia's x-ray! That's her shunt right there, that staw-like thing that goes pretty far into her brain. Then it comes out to her skull and wraps around her ear and down into her abdominal cavity. 

You get extra points if you can spot her shunt in this x-ray and tell me how it wraps around. It's pretty long huh? That's because she's going to grow and it needs to be able to stretch with her.

They gave us new pain medication in the form of a supossitory (mind blown again) and we were sent home.
Total time at the E.R: 5 hours

I am happy to report Mia is doing better today. She has smiled a lot more and we try not to move her as much or as fast. At least until she is for sure out of the "pain" stage. In a few more days.

Thanks for all the prayers! They're working!

Mia's 6 moths

Hey Mia!

First I just want to say, I wish we had better lighting in our apartment, and that I was a professional photographer. My pictures don't do you justice.
Now that THAT'S out of the way, let me just tell you, HAPPY SIX MONTHS!!

What a night huh? You'd make friends and then they'd poke you and make you sad. Also, all those machines beeping (especially the IV fluid)! People coming in and out of the room, poking you, listening to your heart beat, taking blood pressure. You handled it a lot better than I would have, that's for sure. You were probably too exhausted to notice, but I felt bad for the babies around us and how much they were hurting and crying.

I betcha you weren't planning on going under the knife (again), at your sixth month mark. Yeah. Me neither. I was actually planning on celebrating both your and your brother's half way mark by taking you to Sandy to see the release of the butterflies. I thought since we had been home for 2 days, because of your cold and shunt malfunction symptoms, you guys would enjoy some fresh air and watch butterflies fly away! Instead, we have other things to celebrate and we are celebrating in a different way.

The hospital gave you a nice blankie for your half birthday huh?!

Today we celebrate the easy access we have to medical care. I know you've heard me complain about the Emergency Room because it turns into the Long-Waiting Room. But I am quite grateful for the care they've given to you, and all the other kids around us. I see other parents walking the hallways worn out, tired, worried, and I just feel for them you know? Their baby is sick or hurting, and so is mine. How wonderful it is to live in a time when medicine has evolved so much and they can help you with your hydrocephalus. We live so close too!

Next, we can celebrate that you have a new shunt! You're probably going to have more stitches than last time, once you get out of surgery. For that, I'm sorry. It hurts me to see you hurt. They'll take out the old one and then open you up on your other side and put in a brand new one! They'll probably shave more of your hair off too. That makes me sad too because your curls are my favorite. But, it's okay! They'll grow back! Just think of how much more comfortable you'll be without that lump on your neck and the pressure in your head!

Then, once it's all over, we'll get to take you home! Bret misses you already. When I went home to get my stuff, he kept looking for you everywhere! Even in the diaper bag! He kept saying, "Me?! Me?!" Daddy and I explained where you were at, and he held me tight. He's going to be so excited when you get home and he can give you kisses again. I know you'll love it too because honestly, you guys are ridiculous in how much you love each other. Bret makes you laugh when no one else can.

You are my sunshine. Everyone who meets you, loves you instantly. You make everyone feel special with that smile of yours! Even the I.V nurses today, they felt so bad they had to poke you so many times, and with that grace you have, you just smiled at them and loved them instead. How do you do it? I'm falling apart over here, and yet, you remain strong. So, because you're strong, I know I can be strong too.

I love how attentive you are during our bedtime routine. We read all of Bret's favorite books and you sit there on my lap, enjoying them just as much as your brother. Then, you squeal in delight when we sing primary songs before we say our prayers.
l have felt so worried about you this week. Dragging my feet to the E.R because as good as it is, it's just not a place I've missed. Then, when we pray, when I sing to you and your brother, I can feel God's love for us. I don't feel so worried. I don't feel so anxious. I feel like, maybe I can do this. I see your dad working so hard for us and then coming home in between jobs just to give you a blessing and bring us all hope and peace. And you know what I think?  I AM SO GRATEFUL FOR OUR FAMILY!

So let's celebrate all of those wonderful things on your 6 month mark!
1.Modern Medicine
2.A new shunt
3. Coming home
4. Our family

Love you baby girl!

Just in case anyone wanted to know what song I belt out to my kids every morning, because I have found it so relevant to my life lately, here it is!

"He's the God of every story
He sees each tear that falls.
We may not understand, but one thing is certain,
He is faithful, He's a faithful God.

His ways are holier.
Than we could ever comprehend.
When our world is shaking, 
He hold us in the palm of His hand.

He's the God of every story.
No matter what I'm going through.
I may not understand, You are God and I am just a man.
Yeah I'm forever trusting in Your plan.
One thing is certain
You are faithful, You're faithful God."

          -Laura Story (God Of Every Story)