Post 8 Month Miracle

More than two weeks ago Mia turned 8 months old. I didn't write a milestone post because we were having a hard time. She wasn't progressing at all. In fact, she was regressing. A lot.

It's hard to explain my feelings towards my daughter having Spina Bifida. Basically, I hate it, but I love her. My choices were,
1. Not having Mia at all
2. Having Mia with Spina Bifida and all the challenges that come with it

I am so glad I chose option 2. It can be so hard sometimes, but I would never give her up. She brightens up my day! I would do it all over again, even when it's hard.

My cute little Wonder Woman!

For the past month Mia has been regressing baaaad! She had the upper-body strength of a newborn or a 3 month old. She could not hold her head up for longer than a minute. Could not do tummy-time for a minute either and any position was just too uncomfortable and hard. 

Also, for the life of her, she could not eat solids. Any time we tried, she would throw up a ton! It wouldn't even go all the way in her mouth. As soon as it touched her tongue it was, see ya later food!

So, when 8 months came along, there was nothing good to report and I just wanted to enjoy her smiles, and giggles. Also, I was trying to come to terms with everything that is coming and I just couldn't bring myself to write about it. 

During Spina Bifida clinic, she was seen by the Neurologist, Neurosurgeon, Physical Therapist and Occupational Therapist. Like always, the Neurosurgeon acted like a robot and left. But everybody else was concerned with Mia's lack of movement in her upper body and lack of interest in eating solids. She also wouldn't put any toys in her mouth. When doctors get as concerned about something Mia has as I am, I get even more concerned because I knew something was wrong. 

They ordered a sleeping study, a swallow study and a sedated full-body MRI. These will be done in November and beginning of December and we'll get better results then. 

This past weekend though, we've been seeing miracle after miracle! I felt like I needed to write about it.

Friday November 4th: Mia played with a pretzel licked it with her tongue AND didn't throw up!!

Saturday November 5th: Mia put a toy in her mouth for the first time EVER!! She didn't touch it just with the tip of her tongue, NO! She full on put it in her mouth and played with it!

Monday November 7th: Our physical therapist came over to our house. Mia lasted the whole hour!! She didn't even cry! We worked on rolling, tummy time, and sitting! The therapist evaluated her and she is now at a 6 month level in upper body strength AND working on some 5 month motor skills!! 

I am SO happy! I mean, going from 3 month old strength to 6 month old strength in a few weeks, it's a big deal. She still can't hold her head for super long. But she can do it longer than before and that is fine by me! 

She is almost rolling over. She is getting better at grabbing toys! Her hands are opening up a little bit more, she's not as fisted as before. 

We also worked on a new move. Going from her side to sitting! The therapist led her through the entire thing. But, she loved that exercise. 

Also, her language is almost at 8 months! WAH-BAM!

Sometime this weekend, she started screaming! I feel like her personality is finally coming out! She now gets frustrated because she can't move how she wants to. So, if she's laying, sitting, or facing the same direction for longer than she wants, she complains and screams. It's hilarious and annoying. But I am so proud of her!! Is it weird that I like her screaming because it's annoying? That's a "regular baby" thing and I am so happy! 

Watch my sweet baby roll! Way to go Mia!!

Our Journey with Spina Bifida (FAQs and Facts)

Did you know, Spina Bifida is actually an umbrella term to define different neural tube defects?! Crazy huh?! So, no two Spina Bifida patients are actually alike, because they all have different "types" and the lesion or affected area is actually different on every person! 

Due to the fact that this month is Spina Bifida Awareness month, I will address a lot of the questions we get asked about Mia and tackle some myths about this birth defect. 

*This post was updated January 2019 because some medical diagnoses changed*

Our Journey with Spina Bifida (FAQs)

Mia looks so healthy! How does Spina Bifida Affect Mia? 

Just because Mia has this birth defect, it doesn't mean she is "sick" all the time! She is actually quite "healthy". She is more susceptible to allergies and UTI's and those are our main problems. I will explain the latter in questions below.  

Instead of Spina Bifida, let's call it by what Mia actually has: 

Myelomeningocele (pronounced my-e-lo-MENING-o-seal). Basically, before birth, (around 8 weeks of gestation) the baby's backbone, spinal cord and the structure they float in (spinal canal) did not close normally. A myelomeningocele is the most serious form of Spina Bifida. It also causes the baby to have a lot of fluid in the brain called, Hydrocephalus. (For more information click here)

I did it in black and white so people can stomach the image. But if you can't feel free to scroll down. 

In Mia's case, she was born with a sack. This sack had her spinal cord floating around in spinal cerebral fluid. The doctors had to dissect it, take the spinal cord out and put it in place, then stretch the muscles, and skin over it so she would be able to lay flat on her back without causing a major infection. This surgery was done the day after she was born and is now all healed up! 

Her lesion, or affected area is in the L4-S2 region. Which means, the bottom part of the spine. She has some weakness from the knees down, but a few months after turning two and a half, she started walking!

haha! Her cute face!! 

She also has nerve damage that affects her bladder (called, Neurogenic Bladder) and her bowels. So we have to straight catheter her. You've seen me post about me having to "cath" Mia in the morning or if we hang out in person you've heard me say things like, "I have to go! Gotta go cath Mia."  A lot of you are probably like,

Yeah, I know. I'm probably using it wrong. HECK probably all SB parents use it wrong. But it's easier than saying "I have to straight catheter her" every time!

What do you mean by that? How long will you have to do it for?

We currently cath Mia every day every 3 hours. This makes it more likely for her to get a UTI. Last time she was hospitalized in 2018 was due to a pretty nasty kidney infection. And it just comes on. We try to do it super clean, but the catheter introduces bacteria regardless. 

To cath Mia we need: The catheter, swabsticks (to disinfect the area)
and lubricant, to put on the catheter so it can go in easily.
Then, we insert the catheter in the urethra and empty the pee out in a sample cup or diaper (not pictured). 

Does it hurt her?
According to what the doctors have said, and how she acts, she can't feel it because she doesn't have feeling there. It doesn't bother her one bit. Except when she has a UTI, then it bothers her when I press on her bladder.

This is how she's going to learn to potty train! So, she might not be potty trained for a while.

As for her bowels: She also has neurogenic bowels, which means, the whole process of emptying for a b.m is quite difficult for her body. As of the summer of 2018, we started her on something called, The Enema Program. I will go into more detail on another post that I will tag here. 

She will always have bladder and bowel incontinence.


Finally, myelomeningocele caused her to have a Chiari II malformation.

Normal Brain (I got this from the Internet by the way)

Mia's last MRI scan

A Chirari II malformation means that the cerebellum part of the brain, got sucked in to the spinal cord during gestation when the spinal cord didn't finish forming. In other words, she has some part of her brain in the spinal cord.
This causes problems when the shunt isn't working, and pressure builds up in her brain, it squeezes the malformation more into her spinal cord, causing muscle weakness or loss of movement in the upper body. She has dysphagia and hypotonia due to this malformation.

In conclusion, hydrocephalus and the neurogenic bladder is what causes most of the "health issues" and hospital stays. If we don't treat the hydrocephalus, she gets brain damage. If we don't take care of the cathing, she gets kidney damage. The "extra" things we do for Mia are so that she can have the best quality of life possible.

2. Well, did you take Folic Acid while you were pregnant?
A lot of people asked me this question when I was pregnant with Mia and they learned she had Spina Bifida. Some still ask me now.
Let me tell you what my doctor told me, "It IS NOT your fault!" It hurts when people tell me how I "could've prevented" it. Trust me, I couldn't.
I took folic acid religiously, but I was also really sick during my first trimester. Turns out, doctors don't even really know why people are born with Spina Bifida. They think it might be for these reasons. But since it's not in my husband's family or mine, and I always took my folic acid, then it was just how it was meant to be.
Mia is perfect in every way! It's not something we need to point fingers at and assign "blame" to. It's just the life she was given and we are going to make the best out of it.
So, if you ever meet someone who is expecting a baby with Spina Bifida, hug them, be kind, and don't look for a culprit. Then, tell them to contact me because I'd love to become friends with them.

3. Will her brain get better and nerve damage "heal" as she grows?
Nope. There's no cure. There's no special pill to make it "go away". She will have it for the rest of her life and it will affect her differently as she grows. However, she can grow up and have quite a normal life!
Isn't that great?!

That's it!
Three major questions with a lot of information!

I'm so grateful for modern medicine! Her chances of living and succeeding in life have grown exponentially because of it.
If you have any more questions, please feel free to ask. Hope I was able to tackle some myths and answer your questions.

If you want to learn more you can visit:
http://spinabifidaassociation.org/
or
join the group: Redifining Spina Bifida on Facebook, it truly gives a new outlook and it has given me a lot of hope.

Please feel free to share this post so we can raise awareness about Spina Bifida.

Thank you for reading and praying, for us and Mia! We really appreciate it!

Mia is 4 months!

Yesterday was Mia's 4 month mark. 

We went to her 4 month check up and she is 15 lbs and 23 inches long. She is cooing a lot and she is as smiley as they come! 

At the appointment we talked about her muscle tone. Her muscles are kind of weak just about everywhere. Her left side is stronger than her right. The doctor told me that she was going to take longer than most kids to do everything like, roll over, crawl, and walk. I'm not going to lie, it made me sad. Again, I was reminded of the lasting effects of the Spina Bifida. We will continue helping her as much as we can, but nerve damage is nerve damage and there's nothing I can do about that.

That smile though...

Mia loves taking baths in the bathroom sink. She especially likes her hair being washed and brushed. She gets really excited when she sees me, her dad or Bret walk in after she's taken a nap.
Her left arm is really strong and she actually reaches out to play with her toys and grabs a hold of them for a few seconds! She always brings up her right hand to her mouth and sucks on her fist. We're working on getting her right arm past her mouth and up over her head a bit.

Mia loves story time at night when we read a fun book and the kids version of the Book of Mormon. I put both kids on our bed and then I lay right in between them and read to them. Mia really likes it and squeals in delight when I read and when her brother jumps around on the bed.

Talking about Bret, yesterday they both got shots. Bret got his first. He has really intense eyes and he never took his eyes off of the nurse. She cleaned his leg with the alcohol pads, and then took out the syringes. Bret stared at her through the whole process, not smiling or moving one inch. When she inserted the first syringe, he took a deep breath and his brows furrowed in anger, then, she stuck the second syringe in... this one was the tetanus one... there was fire in his eyes as he looked at the nurse and he started crying. I picked him up to comfort him, then I told him that it was Mia's turn. She gave Mia both of her shots and of course Mia started crying right away. The nurse handed her to me and I was holding Bret and Mia. Bret stopped crying when he heard his sister cry, and when the nurse handed her to me, Bret put his arm around Mia and gave her a kiss. The look he gave the nurse was hilarious, it was like, "you hurt my sister again and I'll cut you!" Both the nurse and I thought Bret had been so sweet to his sister after she got her shots, completely forgetting his own pain, he  comforted his sister.

Happy 4 months baby girl. You have a good brother. And you are such an easy baby. Serioiusly! Thank you for sleeping through the night, even if you do wake up at 6 or 5:30 am, I'll take that over 4:00 or 3:00 am.

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.

JUST. KEEP. SWIMMING

*The alarm goes off

It's 5:00 am on a weekday. I don't want to get up. I don't want to leave the comfort of my warm bed. 

I'm 15 years old and my ride is here. Groggily I put on my pants over my swimsuit, a coat, and I head out the door to meet my friends out in the car. 

Less than five minutes later we get to the pool. 

It's 5:15 am and it's time for practice. Gotta take off the towel and stretch. The coach is talking now telling us what our warm up is going to be. 

Okay. I have to jump in now. But I don't want to. I know the water will be cold. I'm still sleepy, I'm still warm. I don't want to jump in and be cold! 

I close my eyes. *SPLASH*

Eeek! It's cold! "It's okay", I tell myself "just keep swimming". The more I swim, the better I feel. I do a flip turn. One more lap and I can feel it's getting easier. Easier to breathe, easier to stretch my body, easier to move faster. Suddenly, I loose myself in the water. I feel like I'm gliding and honestly being woken up at 5 in the morning is not so bad now. 
My body tells me, "this is good for me! Keep going!" 

It's the end of the work out. My body worked hard. I'm wide awake now and I love how my body feels as I cool down. I feel stronger. 
I feel ready to conquer the day. 

----

It's 1:00 am now on a rainy Monday. More than 10 years have passed since my swim team days. My motherly worries now keep me awake.
I see my baby girl snuggled warm in her pack and play. I know that in about 30 hours, she must go in for surgery.

But she's only a baby! Babies shouldn't have to get surgeries. Surgeries are for when you're older and you've used your body more. Not for when your body is brand new!

As the clock keeps ticking, I can feel it approaching.

-I don't want to jump in! I don't want to be cold!-

I look at her peaceful frame asleep in her bed and can feel her say, "It's okay mom. We can do this! We have done it twice before, we can do it again!" 

"This is good for my body."

I tell myself to keep going. Eventually, it will get easier to breathe. As time goes by my brain will stretch with knowledge and understanding. My heart, though it aches at times, will continue to grow with love and patience. I will be able to learn faster and loose myself in the care of my daughter so she can have THE BEST chance at a good quality of life. Then, spina bifida won't feel so bad anymore.
Just. Keep. Swimming.


---
In my head it's post-op and my baby is in her hospital crib. I know she's sedated and still asleep. In an attempt to comfort her as she starts to wake up, I put my finger in her little hand. She moves a little and gives me a sleepy smile,

"See mom? It all worked out. I feel stronger now. I am now ready to conquer life"

*Sigh*

I love my baby girl. We can do this! We WILL kick spina bifida's butt!

Mia is 2 months!

My sweet Mia is 2 months old today! I can't believe how fast time has flown by. First, let's talk about how well her back has healed! You can't even really tell that the scar goes up to almost the middle of her back. The body is amazing isn't it? The way it repairs itself is quite a miracle.

Snuggles with daddy are the best

This month has been tough for Mia in a different way. She got sick with the cold. Let me tell you, having a baby this young get sick with the cold is NO JOKE. We have been either in the doctor's office, the E.R or the Respiratory Clinic, almost every day for the past week.

On Sunday (our actual anniversary date), I stayed home with Mia while Heath and Bret went to church. Well, Mia kept coughing and coughing and it was hard for her to breathe. Then she started foaming at the mouth. My initial thought was that it was just phlegm, but I got on the internet and it scared me. So, I called the physician on call and he told me to go to Instacare, but it was closed, so I ended up going to Urgent Care in Centerville. They checked us in, asked me what was going on and then had me wait for the physician just for her to look at this picture, and tell me that they didn't deal with babies, "especially babies with a cold that have Spina Bifida".

Let me go off on a rant here for a second...
This is not the first time we've been sent to Primary Children's E.R because Mia has Spina Bifida and the doctors don't know what to do with her, despite the fact that what she has doesn't have anything to do with Spina Bifida. IT'S A COLD PEOPLE! Just suck out her boogers and stop wasting our time! How do they not have the equipment to care for babies? Why do they always use her Spina Bifida as an excuse?
Did you know I went to 3 different pediatricians when she came out of the NICU and called 3 other ones before I found one that was "comfortable" caring for Mia?! She's a BABY!! 
I realize that her Spina Bifida does make her a bit different because she has more "needs", but honestly, sometimes it makes me think that the doctors out there don't know what they're talking about. What did they do at Med school?!
Some of my annoyance towards all these doctors that have turned us away because Mia has SB has almost disappeared after talking to a resident during Mia's clinic last month, he said that maybe the reason why they are that way is that they don't get a lot of babies like mine and so they aren't as comfortable with that because they haven't had practice treating them. Well, that kind of made me feel better...But this urgent care visit made me feel annoyed again.
Ok. Rant over.

So, I go get Heath, and Bret's grandpa comes over to pick Bret up, and Heath, Mia and I head over to Primary Children's E.R.
On our way there Heath said, "You know, if we have to come here any more times, we're going to start making friends there."

and guess what?!

WE DID!!!

As we were checking Mia in, I saw another couple that had a car-bed just like the one Mia went home with. I though, I bet their baby has Spina Bifida. When the nurse asked me if Mia had Spina Bifida I said, yes and the couple overheard and they turned and looked at me. I KNEW IT! Heath took over talking to the check-in nurse and I headed over to talk to that couple.

Me: Does your baby have Spina Bifida?!
Them: YES! Yours does too right?!
Me: YEAH!! Oh my gosh! Can I give you a hug?!*

*I know that's weird, but it just felt so good to see another couple with a baby like ours. I felt like we were kindred spirits. We understood one another and I understood the worries they were going through. It just feels good to know --in the flesh-- that there are more of us out there.

Their daughter has a lesion similar to Mia's and they had just gone home. Their daughter was 10 days old and she started leaking spinal fluid from her back. That's why they were back. I felt for them. Honestly, the healing process is really stressful. We exchanged phone numbers and I gave them the links to the facebook support groups (because you really do need support in times like these) and we parted ways. It was really nice to meet them. Oh and she did let me give her a hug :)

The rest of the E.R visit went like this,
-Nurse comes in, takes vitals and asks us what's going on (10 min)
-Wait (30 minutes)
-Repeat the same information to 10 different people (1+ hours)
- I was right, the foam was just phlegm. So, they suction her out (less than 5 minutes)
-Getting discharged (30 minutes)

RIDICOULOUS! Right?! 

I want one of those suction machines at home so I can just do it and we don't have to waste time driving, or at the doctor's for her to be able to breathe properly.

We got a prescription to the respiratory clinic. On Monday we went to her pediatrician to be suctioned and then at 2 in the morning, she couldn't breathe super well so I went to the Primary Children's respiratory clinic for her to be suctioned. She's doing a TON better! She can actually cough without throwing up, or turning super purple. YAY!

Okay, now here's what you've been waiting for, pictures of my baby girl!

Right here she's resting, but she lifts her head and looks around. She's so strong!

Also, did I mention my mom left? We love and miss her! She's so pretty and she looks great with her grand kids. 

See how cute she is?!! Nothing scary about her. I love my baby girl.

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.