4 year anniversary of Levi's airway reconstructive surgery

Today is the 4 year anniversary of Levi having his airway reconstructive surgery. I have this app called Timehop, it sends me notifications of what I posted on social media on the same day of years past. So this month I’ve been getting little reminders of the emotions and feelings I was going through in those days. Last night I was quizzing Brian and the boys to see what they remembered about that day and season in general. Thankfully, Levi doesn’t remember anything! I remember they told me that some of the anesthesia that they used caused amnesia. So most likely he wouldn’t remember what went on. Surprisingly, Brian doesn’t remember either! Like anything… Once I started telling him, he sorta could… But most of the details he doesn’t remember at all. Jesse remembers what he ate on that day of the surgery, who he played with, prizes he got, people he was with, things he learned. I remember telling everyone that was helping us with him to not worry about correcting him, that spoiling him was just fine… Me? I remember it all. And it still makes me a little lightheaded and gives me the feeling of being out of breath. We had waited so long for this surgery, his whole life! He had prayed earnestly and fervently for healing, for God to miraculously intervene and make his airway whole, new. 

Some dear friends had gone through this surgery with their little boy and were ‘preparing’ us as much as they could and kinda let us know what to expect. Well, like most things in Levi and Jesse’s lives, nothing went as expected! 

The 5-6 hour surgery went very well, we had our people, you all praying! We felt it, we thanked God for it. I remember the people who sat with us in the waiting room, the messages we got throughout the day that encouraged us. The mini-meltdowns that I felt was entitled to… When surgery was over… well, nothing could have prepared me for the days that were ahead of us. 

I was expecting to find my baby sedated, yes with tubes and wires all over but sleeping peacefully. Instead I entered a horror scene. Too many Doctors, nurses and respiratory therapist all around him and messing with him, a bright huge light right over his bed and worst of all, my baby boy terrified, confused, in pain and unconsolable. Thank God for a dear friend that helped me through not passing out. All I wanted to do was close my eyes and be done with it all. But then there is that strength that takes over, unexplainable, supernatural power that takes over your body and autopilot kicks in. Thank God for HIs grace!  This was the beginning of yet another long road ahead of us. A different one. At times I couldn’t see light at the end of the tunnel. 

Before the surgery, Levi was so exited that he was going to be able to swim like Nemo. so after surgery we would remind him that soon, very soon he was going to be able to swimming. It would brake my heart that that was no longer a comfort to him. He didn’t care about swimming! In fact, nothing in the world was worth the price that he was having to pay. In his mind that is. God so clearly spoke to me how that is His heart towards us. See, I knew what the end result was going to be, I knew that the pain and discomfort were only temporary and that his whole life was going to change for the better. Not only was he going to be able to play in water, but every second of his life was not going to depend on a little trache accidentally coming out. It was what we had to go through to enjoy what we have now. And it was worth it… of course it was! But just like Levi, at that moment couldn’t imagine how it could be worth it, thats how I so often feel when going through struggles. And I can’t help but picture my Heavenly Father reminding me of His truth and all the glory that will come… If we’d given Levi the option, he would have chosen to not feel anymore pain and keep the trache. In fact, he told us this! So thank you Lord for not asking me what I want, but giving me what you know I need… 

Pictures from almost a year ago...

 Last year, we got to spend time with both of my grandmothers, it is always such a special time, I don't take it for granted and I savor the sweetness of it for a long time...

 This is the boys with my cousin's daughter Dariana. Her older brother, now in heaven was born with a heart condition. His life brought so much joy and love, can't wait to see him again!

 For their 5th birthday they wanted to be superhero's!

This little boy is David. His mom, aunts and uncles lived with us in the children's home for many, many years. I hadn't seen the girls since they left about 6 years ago. The boys realized that David does not know Jesus and doesn't follow God... it was very sad for them and for us. We pray that God will remind them of His goodness and unconditional LOVE...

Sovereign God

It's amazing to me how in the Bible, God started revealing Himself to humanity little by little. He is so gracious and realizes how small we are, how small are brains are and how we just can not get it all thrown at us at once. We would probably explode if He did.
So, in the beginning He reveals Himself to us as the Creator, MIGHTY, Strong GOD. In His name He adds that He is three in One. He shows Himself as EL ELYON, the Most High, Ruler, Sovereign God. El Roi, the GOD who sees (me). Adonai, Master... Lord. El Shaddai, GOD Almighty, all supplying, sustainer. Jehovah, the self existent One, the Most Holy, the Great I AM. Jehovah-Jireh, The Lord Savior, provider. Jehovah-Rapha, the Mender, the cure, the one who makes us whole, the Healer not only of sickness but of our souls....
We had the opportunity to share with the youth kids from Church two Sundays ago, that got me rethinking of a lot of stuff. Also, on Thursdays Im going to a Bible study that my mother in law is leading on the names of God, called 'Lord I want to know you'. It's the second time I have had the opportunity to study this book and it is just so amazing. When I look back at my younger years, I know that I loved God, that I knew Him well, I thought anyway. But I definitely had Faith in HIM. I could see Him as my provider, my sustainer, the One who Rules over all, my Master, my healer, etc. With the boys birth He tested it all. He had tested me before on a smaller scale, but He really tested me big time. It's crazy that almost 6 YEARS later, I am not even close to done processing it all. In a way I see this as Gods grace, not showing Himself to me in a way that I can't handle. I saw a dear sweet friend a couple of weeks ago, she was our connection to Baptist Hospital and the boys first nurse. She was telling me how some of her nurse friends get frustrated with parents, saying that they are so in denial. She tells them to leave them alone, to allow them to hold on to hope and not take that away. I can see how this happened in my life, God sheltered me from my own brain and little by little He has let me experience some of the emotions I could have had during to hardest part of the trial. Sometimes it makes me a little bitter, and I am ashamed to admit how long and slow this is all been for me to grasp, really to accept. I am a slow learner, I have so many questions and frustrations, I make myself feel overwhelmed and like I'm drowning! Thank God that He sustains me even in my hurt, anger and confusion. He slowly leads me into the deep.
God never makes mistakes, my name means 'little rock'. I know that my parents did not pick out that name for me because they just loved the meaning of it! I used to say that I could never survive another NICU experience, I said that if that's what God would give me, then I never want another child. Slowly, surely I can say that no matter what GOD, sovereign Ruler of all, who is ABOVE all and has POWER over all, if He always the trails in my life, then by His Grace I will survive them.
I've heard people say that because we live in a fallen world, bad things happen. That ALL evil comes from the evil one. And although this is true, it was a infuriating thing for my heart to hear. MY GOD is greater, MY GOD is bigger than the universe, NOTHING can happen without HIS permission, nothing can catch Him by surprise, we do have free will and I cant explain or understand fully how the two work together, but my heart knows they do. The conclusion that I come to is this. Everything, good or bad that God allows us to go through, weather its an attack of Satan, a 'natural' disaster or His doing, it all is filtered through His great and perfect Love for us. He is outside of time, He knows that pain will only last a moment, compared to eternity and the Glory that awaits us, it's but a blink of an eye. So yes, we live and operate in this 'fallen world' but GOD is over it all, above it all. Sovereign(possessing supreme and ultimate power, absolute, unlimited, unrestricted, boundless, total, unconditional power and authority).
I praise you Father, Ruler of All and I choose to rest in your great love for me today...

Going back in time...

Since I stopped posting here so long ago, and I always want to but I feel overwhelmed about how much there is to update on, I've decided to go ahead and 'go back'. I feel like I need to anyway to maybe process some of the 'stuff' that has happened. Please always feel free to leave a comment, even if you don't think it's something I want to hear, I need truth spoken into my life! Sometimes my emotions get in the way of growth...

One of my  dear cousin in law's twins is having his tonsils removed in the morning, she asked me to be there to 'keep things in perspective'. It's been such a mixture of emotions being a part of her twin experience. Her twins were born a little over a year after my boys were born. They were premature, 34 weeks I think. I've heard her tell people many times that her NICU experience felt like a breeze because she had just watched us go through ours. I always feel a little sad about the fact that she didn't really feel the right (maybe?) to let herself feel the typical things that one would feel having a preemie(or two) and leaving them in the hospital. And at the same time I get why she felt that way. But then I think if I put what i went through, what my babies went through up against other moms and babies, some of these being my friends, I can feel really bad about complaining! Our pain, whatever scale its on is still pain. We feel it, even if it's gratitude that we should be feeling... its real... it's validated.

All this got me thinking of Levi and his reconstructive airway surgery.  You know? Jesse can remember tons of little details surrounding the day of Levi's surgery. It blows my mind how he will, out of the blue start talking about it and things that happened that day even though it was over two years ago! Levi was given medicine that causes amnesia after every surgery... man, I wish I could have had some of that! He doesn't really remember anything about that horrific surgery. I am definitely thankful for that... if only I could forget.

We had waited for it for so many years... we thought he would be able to have it before age two. The time had finally come and although I knew(or I thought I knew!) it would be hard, I was so excited that it was finally happening. I so wasn't prepared for the process, but then I think nothing really could have prepared me. It was something we had to go through to obtain the amazing goal of being trach free. Such a valuable prize on so many different levels!

The process... oh the process... After the 7 hour surgery, in witch they cut part of his rib out(he has a big ole 2 inch scar there), cut his throat open(one inch scar), cut away part of the scar tissue inside his airway and used part of his rib as grafting. Then they put a tube in his airway to keep it all from collapsing, the surgeon described it as feeling like a 'lipstick tube' stuck in his airway.   That was a lot to handle. We were told that they would keep him sedated for at least 24 hours after the surgery, that sounded great to me! But instead, when surgery is over and they have taken him to the pediatric intensive care unit where he would spend a week at, we find him half awake, confused, angry, in pain. There are about 5 medical people messing with him, he's trying to fight them of! There is a bright spotlight right above him. He wanted me to hold him but I couldn't, the surgery was so fragile and moving him was to painful and dangerous. He had two IVs in him, a feeding tube in his nose. It was worse than when he was in NICU because when he was there, he was a little innocent baby unaware of everything. This time, he was aware and it was so painful and confusing. He would sign that he wanted water, couldn't have any, he would sign that he was hurting, that he wanted to be held, that he wanted his bottle! Oh it was torture.... Lucky for me, a friend was there with me and she helped me breathe through the initial shock and kept me from fainting.

I realize that most likely nobody will benefit from reading this, it's really just me that needs to get it out! We all want the prize, the end result, the benefits of our situations! I knew that all the pain was going to be worth it when we reached our goal. I got a glimpse of our Fathers heart towards us, his little children. Levi absolutely could not understand what was going on, why we were allowing it. I know that he felt that NOTHING could be worth that amount of pain and discomfort. And had he had the choice, he would have said that he would rather keep the trach and not go through the process! But we knew, we understood that it would all be worth it, that the pain would go away and the benefits would be so amazingly wonderful, and we were right! It was all worth it. And like I said before, he doesn't even remember any of it!

Whatever painful circumstance that you find yourself in, even if it's on a smaller scale, remember there is purpose in it. Anything that our Heavenly Father allows us to go through has a purpose, otherwise he would spare us the pain! But HE knows what we need to go through in order to grow, to be whole, to obtain the prize and reach the goal. This summer that Levi got to swim was so incredible! He loved it so much and was so proud of himself for jumping in the water a million times. We are so thankful for what He's done and the gifts that He has given us...

So, please pray for little Peyton's surgery tomorrow, that all will go well and that his family will have peace through it all...

Last Monday

SO, last Monday went really well! I’m sure many of you know all this by now, especially if you’re on facebook. We got there at 2pm and actually got to back into the O.R. a little early, that’s always a good thing! By 4:00 the doctor was done and came to talk to us (we weren’t even scheduled to start until 4:15). The first thing he said was “I like Mexico. Mexico was good for Levi.” Things looked so much better, good enough to start ‘capping’ the trache and downsizing from a size 4.0 to a 2.5! We started out with a 2.5 when he was two pounds! We ended up staying overnight to make sure that Levi could breathe with his trache capped(it’s literally a little cap that goes over the opening of the trache tube so that it’s not being used but still available in case he needs it). Unfortunately Levi took a really long time to wake up and even longer to settle down. He. Was. Furious. I think that the latter in the day the procedure is, the worse he does waking up. He’s gone all day with no food, no nap and it’s just not a pretty picture. We needed him calm before he could have the cap. They moved us upstairs to a room and by this time it was after 6. I started asking for the cap a little after that and no one knew what I was talking about :S That was frustrating! Finally they realized that that was the whole point of us staying over night, it was so that they could monitor his breathing while capped… at around 10:30 pm they realized that they could get a cap because they were locked away at the clinic. They ended up using a passy murry valve instead (it goes in the opening of the trache and lets you breathe in but closes so that you breathe out through your mouth or nose, it’s used to speak). Levi didn’t get much sleep and I didn’t get any at all, but we had to stay all day the next day to make sure that he was okay with the cap. He did great and has been using it ever since! He loves it, to say the least… he is talking non-stop and is constantly making sound effects for everything he does, it’s pretty amazing! Several people of commented on how much clearer he sounds and how easy it is to understand him. The funny thing is that I don’t notice that as much. But he definitely is louder! When we finally made it home after being at the hospital so long, Levi grabbed Jesse’s face and said “Jesse… Shut up…” We have NEVER told them to shut up before! Now, those of you who know Jesse, know just how much he talks… really it is non-stop and Levi believes it’s his turn now! They got a CD for Christmas from an aunt and uncle and he is singing the songs at the top of his lungs, it’s amazing…
We will be going back to Vanderbilt in three weeks. The Doctor will check his airway again, if things still look good the trache will come out… Wow… I can’t believe this is happening! Thank you Lord for bringing us this far, and thank you all for your prayers!

We’re back! And I realize I was supposed to update while in Mexico… but who was I kidding? There’s no time to sit at the computer while in Mexico! The time there just goes by way to fast and at the same time it felt like we were there for forever… it was pretty awesome. We got to see most of our relatives and a lot of friends. I finally got to meet my best friends little girl… we celebrated my grandparents 60th wedding anniversary, that was pretty amazing. We had 15 of their great-grandchildren there, only three were missing… two on the way (like this month!) Most of my cousins were there (I think there’s like 30 of us). It was so encouraging to re-hear my grandparent’s story, how God brought them out of where they lived, the place where my grandpa’s mom had been born and buried and that was his intention too… God did some miraculous things to bring them to Alamos, my hometown. Anyway, it was really fun.
The boys were very busy getting very dirty, playing with their cousins Aaliyah and Obed every chance they got! We made cheese at grandma’s house; they loved spending time with their sister Josie and all the other girls there. We had fun at the communities although we didn’t go that often. There where tons of relatives staying at the ranch the first two weeks, that was fun and chaotic! Lot’s and lot’s of celebrations for sure. On our way back, we stayed at in San Carlos (beach town) for three nights. That was incredible! It was my sister’s, sister in law, brother and niece and nephew. The water was too cold to get in, so it was perfect because that way Levi didn’t feel left out. They played in the sand for hours and hours.
Being there was such a blessing, yet bitter sweet. Leaving was also bitter sweet… it’s hard to visit the place that I love and miss so much, there isn’t enough time to do everything and just catching up with people makes me sad… I miss being a part of their everyday lives. Also, it was more noticeable this year how American the boys really are… they missed their home a lot and there are just so many things about Mexico that they just don’t get… the language for one!
The minute we were back in the US I realized that I hadn’t thought about Levi’s next scope and that is something that is happening tomorrow at 4:15! I have such mixed feeling about… it could be really, really good, or really bad… I’m pretty sure that the waiting time is over. We will know if Levi is going to need another major surgery or not (makes me nauseous just thinking about it) or if we can go ahead and start working on getting his trach out (that is like a dream!)
The other night I was watching decannulation videos on youtube (when kids get their trach out) and it really feels like a dream that is was too good to come true… we are hoping and praying for that!
Thank you all for your continued prayers, we love you all!

This is the first time in quite a while that I’m actually excited to write an update! Monday’s procedure went very well. We got there at 9am but unfortunately didn’t get started until 12! One of the Doctors has called to the ER so we waited for him. Levi, thankfully was very patient and entertained.
Dr. Acra, the gastro-intestinal Doctor was there with Dr. Wootten(ENT). Dr. Acra hadn’t seen Levi since April, when he said that we could go ahead and do the trache surgery. Anyway, he said that to the naked eye, Levi’s esophagus looked good. We will have the biopsy results next week to confirm. After that Dr. Wootten came out and said that things looked a little better but he wasn’t too sure yet how much better- he paused and said “why am I down playing this? It looked way better and I am very encouraged!” Of course things can change, but for now we are celebrating! Plus, he said we could take a two month brake and then check, if things still look really good then maybe we will start talking about getting the trache out… We need a two month brake!
So it was great! Things looked better and we get to go to Mexico for 6 weeks! Unfortunately Brian can’t be there for that long. We will leave on Monday and then he will leave a week after that and hopefully get to stay for three weeks. The boys and I will stay two extra weeks after he leaves. That’s the plan anyway! Like I said in my last update, we NEED this brake! I feel like I’ve been under water for months having to hold my breath (okay, maybe that’s a little exaggerated)….
Hopefully the next update will be from Mexico! Love you all and Merry Christmas!!!