Life Changed..

Brenden's story started June 29th, 2012 when I was 20 weeks. I had my ultrasound appointment at a different hospital for the anatomy scan. Why it was at a different place I don't know..  They had three different ultrasound techs come in and take the sonograms and we just assumed they just couldn't get really good pictures, so they may have just needed someone better at it. Two hours later, they gave me a disc and just told me to give to my doctor the next time I see her. Ok, sounds great! .. UM NO! NOT GREAT! When I got home, me being the nosey person that I am, I took out the disc and put into my computer to see what it was!

It was pictures of what they took at my appointment of course, but I also found the report from the doctor and I see this
 "FINDINGS COMPATIBLE WITH SPINA BIFIDA. RECOMMEND CORRELATION WITH

PERINATOLOGIST AND GENETIC COUNSELING. IN ADDITION, THE ORIENTATION OF THE

LATERAL VENTRICLES RAISES THE POSSIBILITY OF AGENESIS OF THE CORPUS CALLOSUM. "   

What?! What in the heck does all of that mean? I've never heard of Spina Bifida before, so I googled it. I still had no clue what it really was or why it was on the report. Just that I felt scared. I remember sitting on our bed, my husband was just getting out of the shower and he could tell something was wrong.. He asked and at first I just shrugged it off and said nothing, then I started sobbing. I told him and he was confused by it too. 

Let me just say I was pissed that not one of the doctors or ultrasound tech said anything to us. Not ONE THING. 

To see what spina bifida is, just click here to take you to the tab!

After finding all of that out, they transferred me down to be seen by Fetal Assessment Unit at the Naval Medical Center San Diego, or Balboa hospital. This hospital has all of the specialty clinics- ours doesn't. Balboa is about 40 minutes south from our home. At my first appointment, they made us meet up with a genetic counselor and she confirmed that our baby had spina bifida and just talked to us. (I'm not really sure I remember what she even said to us.. ) Once we met with my new doctor she told me about my options that I had.

1. Abort it and have nothing to worry about.
2. Fly to Texas and have them do the in utero surgery and stay there until I delivered. Remind you I would've had to stay there for the remaining 4 months (They told me this on a Thursday and said if I wanted to do this, I needed to be there by the following Monday) Seriously?
or
3. Wait until he was born and then have them do his surgery.

I'm definitely not going to abort although my doctor sounded like she was encouraging it, and there was no way in hell I could fly to Texas with a three day notice! I also didn't want to risk me getting hurt or something going wrong with Brenden while them doing surgery. STRESS ALERT!
So we decided we would just wait until Brenden was born and then they would do surgery on his back.

After talking with the only doctor who actually knew what they were talking about - a pediatric neurosurgeon (who is flipping awesome by the way!) we felt a little better and was more knowledgeable about it. He explained what he would do during the surgery and explained what a shunt is and what hydrocephalus is. So many things running through our minds at that point.
He told us the level of his lesion was very low..and that he may or may not be able to walk when he is older even if it's with a walker or braces, that he may need catheterized or need enemas, and more.


Pause..I would just like to say how I felt about all of this.

During my early stages of being pregnant we never even had that thought in our mind that something would be wrong. Not having enough folic acid, really? I blamed myself for a while but it wasn't my fault. Spina bifida forms before you can even try to stop it from happening. After hearing about everything that comes along with spina bifida was hard. May never walk, may need cathed, may need shunted, all of these worries that we would now have for the rest of his life. Our first child and he wouldn't be "normal" .. and I will be honest at first I was pissed. I didn't want to deal with a baby that has something wrong with it. I didn't think it was fair and asked "why us?" Why did it have to happen to us? We wanted a healthy baby. I had friends that found out they were pregnant and I hated seeing them post things about how healthy their baby was.  (I promise I'm not that cold hearted! Just keep reading below!)


After spending more time(the middle/end of pregnancy) with Brenden inside of me I realized I don't care about what's wrong with him. I loved him so much already. He's OUR child, we made him. Some people can't even have babies and I'm over here complaining about mine.. That was enough!
I want him to have the best life he can possibly have. My baby will be different from others, but not totally. He will still have his personality and he will be amazing whether or not he has those complications. The doctors and social workers told me about the support groups and I never wanted to be in them because I hate talking to people about things, I just like to keep to myself.

November 5th, 2012.

At 8lbs 6oz..
We welcomed our precious little Brenden into the world..

They had to put the plastic bag looking thing over him because of the open area. He looks so chunky!! He wasn't THAT chunky ... not in the beginning at least..

Not being able to hold your own child after birth is horrible.. It sucks not being able to cuddle with them..

Holding him for the first time was so amazing. 

Look at him.. so peaceful in mommas arms!

Brenden was such a happy baby for what he was going through.. and that wasn't even half of what he had to go through..
His neurosurgeon told us his lesion is L5 S1 and that he was surprised that he can feel his feet and was shocked at how much he was kicking them!

Here's a picture that shows the levels of what they can feel..

I will mention that his back closure surgery, the doctor did it different than usual.. This is what it looked like after the first surgery.

The purple part is where the closure was.. but the doctor didn't think he would have enough extra skin, that it would be too tight so that's what he did and it worked for now...

Let me just say it's very nerve-wrecking not knowing how to hold your child. All the cords you need to keep in mind and try not to pull. The nurse helped us position him and make it easier. She was awesome too! He had many different nurses during our 57 day stay at he NICU but there was one nurse we requested because we really liked her with Brenden! He had an IV, foley catheter and a monitor. He couldn't be on his back and he had a large bandage covering his incision. I tried decorating his area..

One day while we were in the NICU we got to hold him and he started crying and screaming and we thought he was hungry but he would not take a bottle. He would not stop screaming for almost an hour and then it was just to the point where something wasn't right. This was the first time he had ever acted like that. Well the doctor told us it could be a few different things..1. He could have an infection, 2, something in his head could be happening and he mentioned one other thing that I can't think of at the moment.. -_- ..
Turns out, everything he said.. had happened. He had E coli from his poop getting up in his back wound and he had an infection in his spinal fluid (that was in his head-what the shunt was helping drain). His ventricles were also enlarged again.. He needed to be on 3 different antibiotics for 21 days straight.
Just great..
That's not it.. on top of all of that.. his back decided to split back open... Yes I said SPLIT. You could see the stitches stretched out. I do have a picture of it but it is very very gross looking. Looking back at all of these pictures gives me the shivers.. at those times it did not seem as bad as it looks, even though it was.

Poor little guy right? They tried everything to get it back together.. They tried putting honey strips on it to heal and hope skin would grow.. That didn't work.
They tried stitching it back together... that didn't work.
Nothing worked so they called the plastic surgery team and they came down and looked at it and talked with his neurosurgeon. They decided to put cadaver skin on it.

Cadaver skin acted as real skin so it would grow with Brenden's skin and then they had a wound vac on it. It was completely sealed.

If you're wondering why he has the IV in his head.. it's because, as you can see, his arm is a little occupied.. and his other veins were very hard to find. Even though he looks rough.. he never seemed to be in pain and at this point, he wasn't on any pain medications. This boy is the toughest baby! They did wound vac changes like 4 or 5 different times. To check on it.

Guess what? He ended up getting a skin graft done and after all of that.. he was cleared of infections and this is what his back looked like!

Looks awesome right? We were so happy to see this and to hear that his infection was gone!

FINALLY good news started to happen! We were able to start putting clothes on him, was able to bathe him, and he got moved into a regular crib instead of being in the incubator!

Something I forgot to mention. He had to have a reservoir put into the top of his head because when he had the infection.. they said it was meningitis but then they didn't think it was.. but on his discharge papers it says meningitis.. so that's what I am going with.. but anyway they put in the reservoir so it was easier to "tap" and get fluid out of his ventricles to see if it was clear or not.. Clear means good. He ended up keeping that in until after we got to take him home.

The little bump on the top is the reservoir

Today, we were blessed in different ways. Yes Brenden had to stay in the NICU longer, yes he had complications with his back surgery and yes he had infections.. but when the doctor told us that he thinks that he will walk even if it is with a walker, he is confident he will walk. Do you know how awesome that is to hear?! AND to know we didn't need to cath him (for now, that could always change) because he could pee fine on his own! Those things were so good to hear. 




December 28th 2012 is the day we got to finally take Brenden home!!

We were soooooo excited and happy to be home together!!

 Brenden and Arty are BFF's!!
Both dogs love Brenden.. they are gentle and protective around him!

Brenden is the best thing that has ever happened to me. I don't care that he has a disability. He is still his own person. He has the funniest personality, is already so tough, and stubborn (eh..) but he is the most precious thing and we are so blessed to have such a happy, baby boy.