Spina Bifida - A Blessing in Disguise

Getting an ultrasound of her kidneys

On Thursday Mia got her kidneys and bladder tests. Basically, because of her lesion, she has nerve damage in her bladder. So, they checked to see if her kidneys had any reflux from her bladder. First, the did an ultrasound of both her bladder and kidneys. Then, we went to a different room, where they put a catheter in her bladder, filled it up, and emptied it, then filled it up and emptied it again. Meanwhile, they took x-rays as they filled it and emptied it to make sure none of it was going up to her kidneys. Luckily, they found that she isn't having any reflux. She, however, doesn't empty completely, which means we still have to help her empty by cathing her twice a day.

Friday was Spina Bifida Clinic and we saw the team of doctors and specialists. Usually clinic is from 8am-1pm. This time it was only until 11am!! We were stoked!

Right after getting her blood drawn

At the end, she had to get her blood drawn to make sure her kidneys were really okay. We got word that all was good and we could go home. FINALLY! We don't have to go back for another 3 months!!
Which is GREAT because ever since we've been home from the NICU we've been back to Primary Children's or the pediatrician's office at least once a week.

 Bret likes dogs... from a distance. Irrelevant I realize, but he's just TOO cute!

As we were waiting to go in to clinic, I saw a lot of Spina Bifida kids come in, boys, girls, of different ages and different races. Some came in their wheelchairs, others in their walkers. Others had braces, or limps and some, you wouldn't even know they were born with SB. I was amazed at how healthy they all looked. How "normal' they all seemed. I noticed how no one looked at them with pity and how their parents enabled their independence. They talked, played and displayed curiosity just like any other child. I couldn't help but think how lucky we were to be able to interact and be part of this new circle of friends.

People with disability in the United States have a lot more opportunities and are more enabled than those I've seen in Mexico, for example. They are not shunned, or separated from society. However, if you don't have a person with disabilities in your family or close to you, they are still somewhat distant or part of another "world" that's unknown and at times, scary.

It's taken me some time to say it but, I am grateful for Spina Bifida. Because of it, we have the opportunity to interact face to face with people with disabilities. We are now in the same "world" and I cannot help but think how much Bret and Mia will benefit and grow from this experience as well.

Bret decided he likes splash pads after all

"What if trials of this life, are Your mercies in disguise" - Laura Story

Mia is 3 months

Mia is 3 months and life is good!

She has had quite the month. First with a trip to the E.R because of some swelling behind her ear and neck where  the shunt runs through. After a revision from the surgeon, he said that she needed surgery. So we showed up and were all ready for surgery. The neurosurgeon came in and he decided to give her another week to see if the swelling would go down on its own. I may or may not have been kind of annoyed at him. I knew there was something wrong, but he wanted Mia to show more serious symptoms of a shunt malfunction to actually perform surgery. These symptoms include, vomiting, extreme sleepiness, a bulging fontanel (soft spot), maybe a fever or seizures. The only things I noticed were different with Mia was that she was sleeping more than usual. Also, her fontanel wasn't bulging, but it wasn't soft either. It was hard.
We went back a week later and the swelling hadn't gone down. So, it was surgery time!

Mia's got this surgery thing DOWN! Turns out there was something wrong; the shunt was clogged. So they replaced it completely and now she has a brand new shunt. Yay!

 I have been thinking a lot about a scripture this past week,

"...men are that they might have joy." 2 Nephi 2:25

Here I am having a hard time seeing my baby girl go through surgery after surgery. These are serious surgeries that have to do with her spine and her brain! And yet here is Mia, smiling away after waking up from sedation and eating, with brand new stitches on her head and her belly.

I now see that the wording on that scripture is might have instead of will feel. To have something means we can "posses, own, or hold". Might is a possibility. In other words, we have the possibility to posses joy! Which leads me to this scripture:

"For it is expedient that an atonement should be made; for according to the great plan of the Eternal God there must be an atonement made, or else all mankind must unavoidably perish; yea, all are hardened; yea, all are fallen and are lost, and must perish except it be through the atonement which it is expedient should be made." Alma 34:9

Sometimes life can be really tough! We may feel like we can't do it anymore, or like it's unfair. All of these things can make our hearts harden a little at a time. Without the atonement, trials and unfairness in this world would make our hearts hard as rocks! Making us angry, sad, hopeless and all those negative feelings. Always! That's why the atonement is SO important or as the scripture says, expedient!
God made it possible for us to overcome our sorrows and the unfairness of this life. Through the atonement of Jesus Christ we can have the possibility of feeling joy! That doesn't mean we will be happy go lucky all the time. But it does mean that there's hope. Because even during the most trying times, we can feel happy and experience joy in this life.

Mia is a great example to me of being happy amidst hard times. Her and Bret bring me so much joy!

So yes, after everything, life IS good.

Happy 3 months baby girl. You are our little fighter and we love you dearly.


ESPAÑOL

Ella ha pasado por mucho este mes. Primero con un viaje a la E.R debido a una hinchazón detrás de la oreja y el cuello, donde la derivación atraviesa. Después de una revisión por parte del cirujano, dijo que necesitaba cirugía. Llego el dia y estábamos todos listos para la cirugía. El neurocirujano entró y decidió darle otra semana para ver si la inflamación se reduciría por sí sola. Puede que si o puede que no estaba un poco molesta con él. Yo sabía que había algo malo, pero él quería que Mia mostrara los síntomas más graves de un problema de la derivación para llevar a cabo la cirugía. Estos síntomas incluyen, vómitos, dormir mucho, una fontanela abultada (parte blanda), tal vez una fiebre o convulsiones. Las únicas cosas que noté eran diferentes con Mia fue que ella estaba durmiendo más de lo normal. Además, su fontanela no estaba abultada, pero no era suave tampoco. Estaba dura.Volvimos una semana más tarde y la hinchazón no había bajado. Por lo tanto, era el momento de la cirugía!

Mia es una experta en cirugias! Resulta que SI había algo mal; la derivación estaba tapada. Así que lo reemplazaron por completo y ahora tiene una nueva derivación. ¡Yey!

Esta semana he estado pensando mucho acerca de una escritura,

"... existen los hombres para que tengan gozo." 2 Nefi 2:25

Aquí estoy yo teniendo un tiempo difícil al ver a mi niña pasar por la cirugía tras cirugía. Estas son cirugías intensas que tienen que ver con su columna vertebral y el cerebro! Y sin embargo, aquí esta Mia, sonriendo después de despertar de la sedación y ser alimentada, con nuevos puntos de sutura en la cabeza y el vientre.

Ahora veo que la fraseología en que la escritura es poder TENER gozo en lugar de SENTIR gozo. Tener algo significa "poseer". En otras palabras, tenemos la posibilidad de poseer gozo! Lo que me lleva a esta escritura:

"Porque es necesario que se realice una expiación; pues según el gran plan del Dios Eterno, debe efectuarse una expiación, o de lo contrario, todo el género humano inevitablemente debe perecer; sí, todos se han endurecido; sí, todos han caído y están perdidos, y, de no ser por la expiación que es necesario que se haga, deben perecer.". Alma 34: 9

A veces la vida puede ser muy dura! Podemos sentir que ya no podemos hacerlo más, o que la vida es super injusta. Todas estas cosas pueden hacer que nuestros corazones se endurezcan un poco a la vez. Sin la expiación, los desafios y la injusticia en este mundo harían nuestros corazones duros como piedras! Haciéndonos sentir enojados, tristes, sin esperanza y todos esos sentimientos negativos. ¡Siempre! Es por eso que la expiación es TAN importante o como dice la escritura, necesaria!

Dios hizo posible que superemos nuestros desafios y la injusticia de esta vida. A través de la expiación de Jesucristo podemos tener la posibilidad de sentir la alegría y tener gozo! Eso no significa que estaremos super felices todo el tiempo. Pero sí significa que podemos tener la esperanza de que aun en los tiempos dificiles podemos sentirnos feliz y tener gozo.

Mia es un gran ejemplo para mí de ser feliz aun durante los tiempos difíciles. Ella y Bret me traen gozo.

Y sí, después de todo, la vida es buena.
Feliz 3 meses mi nena hermosa. Eres nuestra pequeña guerrera y te queremos mucho.

Getting to know them: Mia Grace

"...and my grace is sufficient for all men; ...for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them." Ether 12:27

Getting to know Mia Grace at this point is more about her needs as a baby and what I can do to meet those needs.

When I found out she had Spina Bifida, I thought she was at a disadvantage. I thought, why would God give her this?! Life is already hard as it is! Mia Grace is a great reminder to me of the promises given in the scripture mentioned above. She is such a strong little person. Spina Bifida isn't a disadvantage and it doesn't define her. When she was born, I realized that she was born to conquer. She has been so strong and resilient. There is nothing she can't do. 

I realized then that this scripture is more for me than for her. It was me who was weak. In other words, I was scared. I knew nothing of the medical world. The things I did know about her diagnosis and the care and warning signs we had to look for where too scary for me to think about. I felt like I wouldn’t be able to do any of those things.

Now that she’s been home for over a month, I feel like I’m getting to know her better as well as how Spina Bifida affects her. For example, Mia has hydrocephalus and had to get a shunt put in. The shunt helps all the extra liquid in her brain drain properly and it helps her so that she doesn't get symptoms from the Chirari II Malformation she has as well. So, if Mia throws up, I now think okay, is it her shunt? (I then touch her soft spot to make sure it's still soft). Then I think, she also has nerve damage somewhere in between her stomach and rectum...was she not able to digest the food correctly because she hasn't been able to poop? or is it the Chiari II making it hard for her to swallow? 
There's also the straight catheterization twice a day due to some nerve damage in her bladder. I remember I was really scared to do this one at first, but then when it came time to do it, I know God gave me the strength to be able to do it. 

Check out those curls!!!!

We have been able to go to what’s called, Spina Bifida Clinic. This is where all of the specialists come and see Mia. It usually takes half a day. I never thought I would love it so much. They answer all of my questions and I learn a lot! They calm my worries and help me help Mia. At the clinic we see the neurologist, neurosurgery, plastic surgery, urology, occupational therapy, physical therapy, her nurse, and nutrition. My favorite specialist out of all of them (and the most relevant at this point) is neurology. That doctor is so good at teaching us about Mia’s brain. Learning more about how her brain works and how hydrocephalus affects it and how the shunt helps it, allows me to prepare and understand when things don’t work correctly, or why they do work!

This doesn't mean I'm never afraid. HA! If I think about it too much or start thinking about what could go wrong and the unknown, I freak myself out and I just want to put both of my kids in a bubble where I can keep them safe and sound. But alas, that cannot be... That's when I have to stop myself and enjoy my baby NOW and the accomplishments of every day, as minuscule as they may seem. Like, all of her wet diapers make me go into my happy dance! It helps me know that her bladder is emptying and she'll be less likely to have kidney damage. She also hasn't had a UTI which is awwwwsome!! So far, we haven’t had the need to go to the E.R for a shunt malfunction or infection and I hope it stays that way. Her back is finally healing up nicely and she can lay on it. There's a lot of things to be thankful for and a lot of things to be happy about.

Mia has shown me strength, patience, and faith. I know God sent her to me so that I could work on trusting Him a little more. 

These two are magnificent!!  

Mia's 1st month

My baby girl is 1 month today! I can't believe how fast  time has gone by. It seems like it was just yesterday that I found out she had spina bifida. I was 20 weeks pregnant. At 22 weeks we went to the specialist and he did an ultrasound. Mia has shown us since then how much of a fighter she is. There she was kicking and moving around like crazy. I told the doctor, "she'll walk right?". He said, " we're optimistic but we won't know for sure until after her surgery when we close the spine". He then have us different options, we could have the spinal closure surgery while she was still in the womb but there were too many risks involved with her and with me. He then said that we could also terminate the pregnancy. I couldn't even believe he gave us that as an option. I know he was just doing his job as a doctor but it hurt so bad. I felt so much guilt from her diagnosis and that just made it worse. Also the thought that somebody might not want a baby like mine made me so sad. The following weeks were full of worry, uncertainty, miracles, and eventually peace.
Mia was born in the University of Utah hospital, conveniently next door to primary children's, where she could receive all the care she needed. She almost came early at 32 weeks but we were able to keep her in until week 37 when she made a speedy entrance into the world. We hadn't been in the hospital 30 minutes and she was already born! I didn't even have time to have an epidural and when she came out I felt like she was so close I could touch her. I remember I noticed right away she had curly hair. She was beautiful. They quickly took her away and I saw the lesion on her back. It was bigger than I thought it'd be. The guilt I felt at my 22 week appointment came back and I started to cry. They wheeled me out and I couldn't hold her close and welcome her into the world how I wanted to.

Mia's type of Spina Bifida- Myelomeningocele

  At 7lbs 3oz and 19 inches long, her lungs were strong enough for surgery. She went through surgery the next day and was such a trooper. Amidst the worry, there were so many people praying for her and our family, I could feel so much peace and that she was going to be okay. Bret kept us sane during her time at the NICU. He would smile at us and give us hugs. I'm so glad he's Mia's older brother and my baby boy. When the doctors came to assess her after her surgery they said the words I've been wanting to hear for 20+weeks, "She'll walk. Her ankles are a bit weak and she might need braces, but she'll walk". I was so happy. I could tell another miracle had been granted. Mia continued to show her strength as she would almost crawl out of her crib with those strong legs due to the prolonged time on her belly. She endured another surgery for the hydrocephalus that developed and is now home with us.

She got a shunt put in for the hydrocephalus. She has two incisions in her head and one on her belly.

She has gone through so much in this month and I am so glad she is here with us. I can't imagine having it another way. She has other nerve damage in her organs and we'll have to keep a close eye on her, but I could have never given that up. We only have to straight catheter her twice a day! She is beautiful, strong, smart, and oh so brave.
Right now Mia loves to hear mommy's voice and daddy's voice! (I think she loves how deep it is). She loves it when Bret's around ( and let's face it, who doesn't). She loves, " be still my soul " and Adele and Katy Perry (but only at 2am). She's a great eater. She drinks 4oz every feeding. She'll be able to turn on her back sometime next month. So far she's doing a great job at healing from her back. She finally got all her stitches out last week!
So here's to Mia Grace's first month of life. Her name is still a great reminder to me that the Lord's grace is sufficient. I'm so grateful for all the people that pray for her and our family. Most of all I am grateful for my Savior Jesus Christ who conquered death. I am grateful for his atonement and the healing it brings into my life. During a weak moment of mine, I questioned why Mia hadn't been healed. Heath and I prayed for it, other prayed that she would be completely healed before being born. I asked Heath one day  if maybe I hadn't had enough faith and that's why she wasn't healed. He thought about this for the rest of the day and then he said, "Lizzie, I think it takes as much faith to be healed as it does to not be healed". I have thought about those words since then and I know it's true. Sometimes the Lord knows why He gives us the trials He gives us and I know He doesn't leave us alone while we're going through them. I know that my redeemer lives. And it is truly comforting.
Happy Easter everyone.

We had Mia's blessing today. I'm so grateful for our families.

I'm glad my sister was able to be here for the blessing and that my dad, baby sister and brother-in-law joined through Skype.

Bret had fun at his great-grandma's house Easter egg hunt.

I love my sweet, curious, happy baby boy.