Little brother is going back into surgery

Struggle is an adventure. It is what makes our lives beautiful. Being able to say that we made it past the struggle; that we are so loved by an awesome God who held our hand every moment of it-- Sometimes we tend to forget that we are not alone and that no matter how impossible the day seems, we will get through whatever is in our paths. God made our journey worth it; He put the "love" in lovable, and the "heart" in heartache.

It's the day before my brother's surgery and I am feeling every emotion on the spectrum. Happy that he is finally getting the ng tube removed but sad because he never deserved any of this anyways. Not being able to be there for him is killing me so I'm doing what I know to do. I'm writing it out.

 It is not so much the surgery that we are holding our breaths for. It is the aftermath because that is what almost took his life a year and a half ago. Although there were other factors that played into the complications he had, any plastic tube placed in that general area is a scary thought. Basically, it is supposed to be a routine surgery. However, in my brother's case it will not be. With all of the complications we had last time, it adds a few additional risks.

As mentioned many posts back, when you open skin leading to the stomach, gastric secretions pour out and since the acidity is so high, it takes nothing to burn through the skin. I can honestly say that I do not know all of the effects, or the leading factor as to why this is such a significant surgery. I do know that once they put the new tube in, he may not tolerate feedings right away. But ask me why he wouldn't and I wouldn't know what to say. Bottom line, whether he can tolerate feedings or not and whether the old surgical site is bothered or not are all determining factors to the length of his hospital stay. I'd say worse case scenario, he doesn't tolerate the feedings at all and they are forced to either bring him back into surgery and/or put the ng tube back in. All which are very bad.

That said, I know extremely well it does no good to think about what could happen. My explanation above is indeed a moment of weakness. It is important to recognize the possibility of something going wrong so you aren't caught off guard. But that is as far as I know I should take it. I had a moment the other day where my faith and hope were getting a little shaky. So I did the only thing I knew I could do; I went straight to the bible. The one verse that stood out to me more than the others was this one:

Trials will show that your faith is genuine. It is being tested as fire tests and purifies gold-- though your faith is far more precious than mere gold. ~Peter 1:7

All I want is to trust fully in God. I love Him with everything in me and I want to look to Him; not the scientific statistics or the medical dictionaries. Of course more than anything, I want this surgery to go as well as it possibly can. But I trust my brother is in the best possible hands~ not the doctors and nurses but God.

Will all that said, right now, my brother is a happy and healthy 5 year old. That's how he sees himself and that is what I need to see. As adults we lose that innocence. We are bombarded with all of this information and reality hits hard. Realism is truth but not if it hasn't happened yet. Therefore, I tell myself this surgery hasn't happened yet. He still has a good 14 hours or so of freedom and in this moment, he is okay.

I have officially earned my ears!

There is a feeling in my soul; an illumination of free light and peace, that fills my heart with pure joy. It is that of a God-given passion, desire, and life purpose which requests fulfillment for each beautiful day that I'm given on this Earth. You know it is not your own human desire because all you wish is for God to be the center of your actions. For advancing the works of this passion of yours, you seek the guidance from the true one, the Lord. It is that big and powerful that you simply cannot ignore the source of its good nature. God's love is irreplaceable; an incomprehensible gift to us from Him; so strong that His love cannot be hidden nor can the desires He places in each of our hearts.

To place an extra smile on someone's face; whether they are having a good day or an outright terrible day is that of such strong drive and desire in my life, that ignoring it would not only be foolish but downright unacceptable. A simple act of kindness could be someone's last memory and I know better than to assume the next day is a given, because each moment is a Heaven-sent gift. So the fact that I am in Walt Disney World making that dream a reality every day I go to work, makes this my happily ever after story....

I've been here a little under a month and although not every day is perfectly flawless, there is indeed some good in part of those tougher days. Whether it be as simple as the bus driving by the sign at Vista Way (another apartment complex) that has a picture of the fab 6 (Mickey, Minnie, Goofy, Donald, Daisy, and Pluto) reading "Have a magical day." Or, a day at work where you get to be a part of creating a magical moment for someone; having a child who is so excited to share with you what they just bought; or sharing a laugh with a guest; the journey is nothing short of spectacular. 

With you God, I'm ready for anything

It's here, it's finally here....that moment every one who has ever been to college talks about. That one moment that seems untouchable and impossible to experience. You've spent countless months  wondering if you've done something wrong; perhaps if you had taken opportunity A you would have opportunity B, the opportunity of a lifetime in your hand. But like everything else, good things take time. Lots and lots of time. Lets not forget about the patience, those days where you're so tired you feel nauseated, or the frustration of failure. In fact, I bet that those are the days you think about when you reflect on the journey. My mom always says "It's not the destination that matters, it's the journey that takes you to the destination that does."

Granted, I have my times where I become a whiney college student about the typical problems. Not finding my prince charming, being disappointed in a friend, a strict professor...you know the temporary problems of life. Things that won't last forever. Think where we would be if we spent that time thinking about the things that will last forever...God's love for us, our trust in Him, His forgiveness, the love of our family/friends, and joy.

Just because we aren't happy every moment of every day does not mean we will lose the ability to be happy forever. As long as our joy comes from the right source, the Lord, then we will always have it burning bright in our hearts and souls! I certainly have things I'd like to change...like family members to stay on this Earth longer and not be sick, the amount of children I see being neglected and abused, and being able to see every depressed person smile again. But that's just not how life works.

Life is a constant balancing act. You can't be too nice but you can't be too mean either. You're going to have your sad days but there needs to be joy and love in there as well. In addition, you can't be too focused on the future but you also can't put so much intensity on the moment that you miss out on an opportunity coming in the future. If you try to do everything 'in the moment' you'll drive yourself insane.
~Are you overwhelmed yet? I'm sure grateful we have our entire lives to strive to figure this out!

So why this random spurt of inspiration do you ask?

We need to remember that the Lord doesn't forget what we want more than anything. Maybe we've hit that point where we are in a routine and are waiting for that exciting, 'life can go on now' moment. But we can't have that moment if God is not at the center of our quest. If we are depending on some big opportunity to remind us why we are here and doing what we are doing then we have it all wrong. That big opportunity that eventually comes is a gift. It is something that we are able to receive because we are following the Lord and this is what His will is for us. So with that said, I wanted to share this song. Although I think this is more of a love song, I think it can be "we" as in God and you. Remember~ the most important and valuable thing you can do is pray!

http://www.youtube.com/watch?v=HYqJVEfrUdw

Short and Sweet Praise

Good evening Blogger readers, wherever you are in the world! I hope everyone is having a glorious week so far and continues to enjoy what's left. I wanted to write this now because I will be doing a lot of traveling throughout next week and know that I won't have time to write anything. So here are a few quick points/updates:

~This has been a tough week…though I must say, it's easier to enjoy these little troubles because they are not life or death situations.

~My health hasn't been up to par for the past few weeks and I will probably be going in for some scans when I return to school. I like to think of it as ruling out the worst case scenario to get to the root of the problem, which will be less serious. (I'm really leaning towards the idea that my Asthma probably isn't as controlled as it should be.)

~Just wanted to say a quick hello and praise God for another week. My brothers (all of them) are doing very well; happy and healthy like we like to hear!

**Also, if you need a little love and encouragement for music, I suggest you look up "No Other Name" by Big Daddy Weave. It's not on Youtube (at least that I've found) but you can hear it on Pandora, Spotify or iTunes.

So with that, have a blessed rest of the day and a fantastic weekend!

My Prayer For All

Today is just one of "those" days…so Hallelujah to our God!

No matter what happens on any given day, know that Jesus is right by your side and you will get through whatever trial has been placed in front of you. It could be something really simple like getting lost in a really bad section of the inner city, like I did today, or something more complex like a family/friend's health and maybe even our own health.

The point I'm trying to make is that I think we all need to remember who we are living for. I know I don't always show God's love and shame on me (much more evidently). But if we can wake up and give praise and glory to God, the one whose love is incomprehensible to us, then what a blessed day it will be! Truth be told, sometimes the littlest of trials are set up to prepare us for the much bigger ones to come.

Just think about it….hallelujah is such a beautiful word…

Correction on the Medical Study

Sunday….my favorite day of the week! There are two quick things I want to share:

To start out, I made a mistake when explaining the procedure Jacob is having this month. It is NOT a bronch study, it is a modified barium swallow study. I was totally off haha. I heard "bronch" on the phone…I'm not sure how. Anyways, that's what it is. Food is coated with barium and is swallowed. Then a special team or radiologists observe the x ray or fluoroscopy (whichever is used) while Jacob is swallowing. Hopefully this will offer his doctors insight as to why he has an asthma attack every time he swallows. This study will be performed Wednesday….we are all hoping and praying for the best.

So on to more exciting news….JACOB'S 5TH BIRTHDAY IS THIS SATURDAY!!!!!
It's crazy to think that we are approaching February 15th so soon! There were multiple days over the summer and even this past fall where we weren't sure he was going to see his next birthday. There are truly no words to describe how thankful I am for the gift of my brother's life. He brings this family nothing but love and joy~ as do all of my brothers.

"Expect the Unexpected" as they say...

I think this counts as my first car accident. That is, if you can really call it that.

Early Monday morning, I was coming off of the highway onto an unfamiliar road and it happened to be raining really hard. I was turning and I had to stomp on my breaks for something happening ahead, and all of a sudden my car lost its grip on the road and spun out of control. They say you're supposed to turn with it so I thought I did but I wound up spinning in the other direction.

It's unexpected events like this that make me stop and look at everything around me. Last Sunday I was sitting in church listening to the pastor read Ephesians, came home and made cookies, watched movies and was thinking about how joyous the day was. Needless to say, I didn't see this coming. I imagine nobody ever does.

When I looked to my left and saw 4 lanes of oncoming traffic and looked to my right and saw cars speeding off the highway towards my out of control car, a question crossed my mind that on any other day would be so far fetched: "Am I going to die?" I really thought I was. I couldn't find a way to avoid the oncoming cars but I still did (I'm sure I had an angel's help) and my car and I came out untouched….even though I landed in a ditch.

Though that ditch that God directed my car into evidently saved my life. So I'm just really happy to be here! It makes those feelings of annoyance and anger, that can surface throughout the week from petty things, as significant as a grain of rice.

Attention All Blog Readers!

I think it is about time that I start acknowledging the readers of this blog. As a personal note from me to you, I want this blog's purpose to serve as a place for giving glory and thanks to God. No matter what happens in a given week, with trust in God, you and I will always be okay.

 If you're reading this blog, and you feel bad for my family then I am not doing this correctly. I don't want you to feel sadness, I want you to feel joy for the life you have and know that I praise the Lord for the life I have. Preserving Life started out as something I shared with my Facebook friends and family. But it has grown much bigger. For me, being only a college student who has no idea where she's going in life…to have 13 countries regularly view this blog is amazing to me. This is not a blog to share my struggles and highlight my strengths. Nor is it a place to put forth my faults. It is to inspire you to have hope and faith in Jesus Christ. For life is a glorious journey when you walk with the Lord…

Ephesians 2:8~ http://www.biblegateway.com/passage/?search=Ephesians+2%3A8&version=NIV

With that, I hope everyone has a richly blessed and joyous week!

A Little Bit of Everything

Today is a wonderful day! Saturday is always a cleaning and grocery shopping day for me. The apartment is clean, some of my grocery shopping is done, and dinner is in the crockpot. I am going at my own pace today without any schedule or anyone to tell me what I have to do.

I also wanted to share this: I have no problem being single, I like it. But for the past 2 weeks (especially this week) I have had an extremely hard time with it and a hard time acknowledging it. It's just, with the next moment being knowingly unpredictable for my brother I don't want to waste it thinking about loneliness. That's no fun! Once I did though, I felt so sad inside it was unreal.

Long story short, I had been praying for a break in this sadness and boy did I get it and I never expected it! This guy (whom I've never met) approached me from behind, asked me for the time (didn't know guys still did that haha) and started talking to me. But the questions he asked were not all of the typical ice breaker questions.  I then learned his name, shook his hand and went off to class. I didn't have one of those gut-wrenching feelings that tells me he's dangerous (power of a girl's intuition). I had an overwhelming feeling of peace~ God's grace. It just felt like that was God saying 'I know you feel sad and I know who is on your heart. It is okay and I am here for you child. Don't be sad for great things are coming soon.' It was exactly what I needed at that moment and I didn't even know it. I see it as nothing less than one of those random but beautiful gifts from God.

So on to more serious news: 
In order for you to understand what has happened you need a little background information first. Jacob spent a lot of time in the PICU, his first two and a half years of life. This particular unit did not enforce eating by mouth and so Jacob developed what they call an aversion. He never had anything going into his mouth so he was never able to experience different flavors/textures of foods. When this happens, you develop a resistance towards any food. It is a critical skill that babies need to learn and use. Learning it when older is significantly more challenging. That being said, we need to get him to eat so his NJ tube can come out. Currently, he's not eating enough by mouth to suffice for a daily intake of nutrients. But f he could eat on his own (by mouth) there would be no such thing as a feeding tube anymore!

But there's a problem…kind of a big one really.

Every time Jacob takes food into his mouth nowadays, he has an asthma attack. I know that sounds questioning, as it does to all of us but let me try to explain. Again, when he was younger he had a condition known as tracheomalasia. This is when a person has a floppy airway; it's not stable. Back when this was a problem, we had to change his trach within about 5 seconds (roughly) or his airway would close off. Once that airway closes off, the piece of skin that is "floppy" blocks any entrance into the trachea. It has happened before and it is very scary. So when he eats and it causes him to have difficulty breathing, that's a huge cause for concern. Structurally, something is I suppose you could say, not right. There is a chance that it could be a bout of pneumonia. However, he is not acting sick. Apparently, he's very happy, active, and mischievous as all 4 year olds are.

So, in February he will go for a bronch study. If you do not know what that is, it is a tube with a camera, that goes down the trachea and into the lungs. It will give the doctor a good look at everything structurally/internally.

We will have to wait and see what happens with that…

Clarification

Explaining the surgery; attempt 2:

When someone has a mic-key button or a g tube that goes into the stomach directly, a type of cone-shaped device is placed with it. Since the tube is being placed into the stomach to feed, there has to be a way to block the tube feeding/nutrients from going into the intestines. If anything were to leak, it would cause a life threatening infection.

In relevant terms, the stomach and the abdominal  wall is what was fused together. Not the stomach and the abdominal cavity. The normalcy for you and I would be to have the stomach and abdominal wall separated. Since his is not, the surgeon went in and stapled his actual stomach by folding it over to create a definite division between the stomach and the abdominal wall. Then the surgeon went ahead and stapled the actual hole closed. As the picture below shows, there is still a definitive abdominal wall. As well as, the lining of the stomach. It's clear to see the separation. With Jacob, those became one.

photo credit: http://www.hopkinscf.org/living-with-cf/managing-treatments/nutrition/tube-feeding/

From My Heart to His

~A few nights ago while I was praying, I started writing and this was the result:

My Dear Little Brother

My dear little brother,

How do we even compare?

You were born with a love of God,

So whole-hearted and true

It’s a faith you keep to yourself

But spreads to the many souls who think of you

To me I’d think

This is no life for a boy

Though you assure me,

You are full of joy.

You show me never to question,

The work of our great God

So here I am

My dear little brother

Loving you a thousand miles away

Knowing that the God above,

Is watching out for you everyday

It gives me great comfort

For your surgery day

You’ve taught me well

My dear little brother

That this love He has

Will never go away

Post Surgery

Let me start out with the positives:

1. My brother is home and not stuck in the hospital.
2. His hole is closed.

The surgery he had today was much more complicated than everyone ((including the surgeon) had anticipated. It took longer than expected because they did more than they had originally planned on. Since I am not home and I received the "short" explanation I don't really understand what they did. My parents tried to explain over the phone but something this complicated makes very little sense. So I am going to try my best to make this make sense.

Basically, instead of stitching the hole closed, they had to staple it closed. Not only did they staple the skin layers together, but the surgeon stapled the inside of his body. Now this is were it gets tricky to explain. The reasoning for this is because my brother apparently has no separation between his stomach and abdomen. I always thought when referencing the abdomen that it was just a general name for the abdominal cavity…apparently not?  All I can say is that his stomach was attached to *something* which is what caused this hole….again I'm lost so I'm sure the rest of you are as well. Deepest apologies, really. I will be sure to clarify this whenever I am able to talk to my family again.

This wouldn't have caused the issues he has been having for the past year and a half but it should solve problems that would've occurred in the future. Again, as I always mention, there are no guarantees for the success of this surgery. It is truly a day by day process. That of course means that there is always a chance for the surgery not to be successful. And it saddens me greatly that there is nothing more that can be done if this surgery doesn't work. Sometimes that happens….a wound won't heal; despite all effort and that is just God-given. Though right now, the focus is that the hole is closed and he is smiling like he always does. Our surgeon went above and beyond to help this little boy so all we can do is pray that her efforts were meant to be successful.

My Fault! Sorry Everyone

To avoid any confusion, I want to tell you all that there was a post that was put up last night. However, I decided to take it down. It was a poem for my brother, as he is going back into surgery tomorrow (Tuesday). My apologies for the confusion. Any questions or concerns, feel free to email me.
Hope everyone is having a wonderful Monday and enjoys the week! 

~Celeste Anne

Stop Looking and Just Enjoy. You're Awesome.

I wish people would stop looking and just enjoy. In other terms, stop looking for the "one" and enjoy the life around them. Do you really think that someone who is meant to come into your life won't come into your life because you weren't looking for them? You have to trust that if God wants it to happen, then it will happen! I'm not exactly sure if this is correct or not but it's how I see it. If you imagined looking from God's perspective (which we really can't do) and you see yourself looking in every direction but His….how would that make Him feel? And how would that hinder your trust in Him? There you are, looking for that special someone and here's God handing you SO MUCH MORE plus that special someone (in good time). I mean really, is there really any comparison there?

We are all very small in the grand scheme of things. We individually, cannot find the cure for cancer, we cannot save a falling government, we cannot stop war, hurricanes, earthquakes, tsunamis, you get the idea. We have very little control over events that happen in our lives. So why not heavily focus on the things we do have control over? How about, how we choose to live our day-to-day lives.

These are choices we make every day:
~ Who we want to love
~ Who we want to turn our backs to
~How much we want to involve God in our life that day
~ How we want to feel; happy, enraged, hopeful, depressed…
~What we want to accomplish

If you feel satisfied constantly focusing on something you're not in arms reach of, then by all means, continue. But I imagine that the bulk of people are not. I know I'm not. So don't spend all of your time looking for someone to date just for the sake of dating. You have a lot more to contribute to this world and much more self worth than to wrap your mind around those consuming thoughts of loneliness. It makes me incredibly sad to see people out there, who feel they are less because they don't have a significant other by their side.

Disappointed

Everyone is talking about the new year and rightfully so because it is New Years Day. But what gets me, and I know it's because of what happened last year, is that people are entirely focused on what is going to happen in 2014. The unexpected can happen any moment of any day and you're only the first day into it. Though, that's not to be confused with New Years resolutions, I have several myself. But I'm not looking to the new year. As far as I'm concerned, it's just a year. People have enough to figure out today. They shouldn't even be worrying about tomorrow yet. So why would they worry about the coming year? From my perspective, there are 364 days left. If anyone thinks they can control all 364 days, they are dead wrong. Make goals but don't let them overtake what truly matters in life. And I say this for the reason I always say it….

Jacob had a very severe Asthma attack the night before New Years Eve. It came on suddenly and nobody expected it. He hasn't had respiratory difficulties like this for a very long time. Even with his BiPAP machine and his oxygen levels turned to the highest setting on his concentrator, he still could not breathe well on his own. As I've mentioned, typically stable oxygen saturation is 92-100. He was barely holding 87. And that was with help from his machines.

In addition, with the previous post, I talked about infection. After his respiratory infection was gone, his incision site became infected. He was put on an antibiotic but my parents didn't think it was working. They took him back to the hospital yesterday and a different doctor (his main one is on vacation)  said it looked great. Today, he has an open hole on his incision site no bigger than a pencil eraser. But a hole, nonetheless and it will not heal by itself. That said, the concept of the new year really doesn't mean much to me; the next hour, yes. As long as I have God by my side, I should not fear anything coming my way. Which is why I really haven't given a whole lot of thought to 2014. I'm just looking to get through today.