happy thanksgiving!!!

Four years ago tonight, I had traveled for two days; 2000 miles while in labor. When looking back, I remember not being scared. I’m not an anxious person, not usually anyway. I was calm, from looking at me you would have never guessed that anything was wrong. I didn’t want to lie at the airport, I didn’t even have to I was so calm! Crazy… actually it was more like I was naïve. And also, God only lets you see what you need to see at times, to be able to get through the storm. Today? I couldn’t do it, no way. My dad had taught me the night before how to give myself a shot… lol… for those of you who know me, like from before, you know that I don’t do well with any of that! But hey, they were to slow down my labor… of course I was going to do it, no problem! When we landed in Nashville, all I wanted to do was sleep. I was a little disappointed when everyone insisted I go to the hospital to get checked out. About 6 hours later I was in the operating room having an emergency C-section. It’s kinda strange looking back, because I felt relieved. I had been in so much pain and my contractions were just getting worse, I couldn’t imagine having to stay that way for weeks. Now, looking back I realize that that pain was NOTHING compared to what was coming. They told me to not expect any baby cries, that they were too little for that. But we did hear them, it sounded like a soft kitten cry. The Doctor that helped deliver them was very impressed with how strong they were, he’s from Mexico City so of course he said that they had good strong Mexican genes to thank for that. After that I just remember being very light headed all the time, close to fainting constantly. When my baby cousin was born, 4 years before that, my aunt sent me with him and a nurse that was going to poke his heal and have drops of blood for the newborn tests that they do and I barely made it without passing out… like BARELY. SO, seeing my very tiny babies with IV’s, tubes and wires everywhere was difficult to say the least. And for 113 days they literally had to fight for every breath they took, and so did we. I named my blog ‘113 days of praise’ hoping that one day I can look back on those days as something to greatly rejoice about, a trial that tested us and found us praising, honoring and glorifying God ( IN THIS YOU GREATLY REJOICE, THOUGH NOW FOR A LITTLE WHILE, IF NEED BE, YOU HAVE BEEN GRIEVED BY VARIOUS TRIALS, THAT THE GENUINENESS OF YOUR FAITH, BEING MUCH MORE PRECIOUS THAN GOLD THAT PERISHES, THOUGH IT IS TESTED BY FIRE, MAY BE FOUND TO PRAISE, HONOR, AND GLORY AT THE REVELATION OF JESUS CHRIST. 1PETER 1:6-7).
Those 113 days we did praise, we cried and begged like never before. Everyday brought new challenges, every brain scan that didn’t show damage was a victory. I feel like we did enjoy the victories but at the same time, things could and would change from one moment to another. It’s like we couldn’t take deep breaths. Looking back, mostly I feel pain, resentment. My sons birth day was the worst day of my life… I know it sounds terrible and I didn’t start feeling that way until close to their 1st birthday, when I started re-living those terrible days. I so long to see them as days of praise! But it was the day that my twins started suffering so very much… the day they were born 15 weeks early. Please, don’t get me wrong, it’s also the day that God showed his grace and protected us from death. I am thankful that I have two very happy, amazing, joyful, precious boys… if only they could have stayed in me longer.
It doesn’t help that things aren’t going well with Levi and the trach removal process. I just thought that by now, by their fourth birthday we would be so much further along. Expectations kill joy… for sure. In the last procedure, the one that Levi had on the 17th, the Doctor saw no improvement whatsoever. The section of the trachea is just not healing. He didn’t understand how after steroids and anti-inflammatory antibiotics, things could look so the same. He said it looked like he had just had surgery. He will be checked again the first week of December, after that, if things don’t look any different we aren’t sure what plan B will be.
For those of you who have faithfully prayed for the boys, I ask that you will continue to pray, please! For complete healing for Levi’s airway. That God will restore him. For wisdom for the Doctors and us, we don’t know what to do! We are so thankful for the hope that we have and that HE is in control. Levi has done so well going back to the hospital time after time, we are so thankful for that! Beyond thankful… we couldn’t have continued with this process if it wasn’t so. We hide surprises for him to find every time we take him back. He goes into the OR with a smile and excited to see what he will find. I need to learn from him!
Again, thank you all for your prayers. We love you all and could not have made it this far without your support. Happy thanksgiving!!!

November 2 procedure

Ah, a long and overdo update… so sorry! I know a lot of you are on facebook and so you know how things are going. But for those of you who are not, I apologize. Levi had his surgical procedure on November 2, they went in and removed the stent that had been there for 6 weeks. It was completely covered in scar tissue, to the point where the doctor couldn’t even see it. Removing it did a lot of damage to his airway, it was very painful for him. I’m afraid that Doctors and nurses are now back to being evil people who just want to hurt him (in Levi’s eyes anyway). We were at Costco yesterday and a lady came up to us and Levi had a big smile on his face until she said she was a nurse… I couldn’t even get him to look up after that! Anyway, his airway was very irritated, very inflamed and just really torn up after the procedure. He did a round of steroids and two antibiotics hoping to help things calm down.
We have our next two scopes already scheduled. The first one is this Wednesday and then on the 30th. He wants to do another one two weeks after that and then take a long brake. After that he will check his airway again and maybe talk about removing the trach. The reason why we are going to have to wait so much longer is because of how bad his airway looked.
I’ve been meaning to write this update since our last appointment but it’s just been really hard to process all this information. This is just all very discouraging for me and I just feel like this is never going to end… the words that I’ve been hearing for almost 4 years now are really dragging me down.
On the other hand, Levi and Jesse are doing great! They are happy and active, smart and joyful. They are both super excited about turning 4, they talk about it all the time!
Please keep the prayers coming, we need healing… it makes me sick having to watch him go through all this and being put under so often… I wish there was a way around it…

Learning to let go

Yesterday's procedure went very well, thank you all for your prayers! Levi could not have done better! He was actually waving at medical people as he was being carried away to the OR. When we first got there he was saying that Doctors and nurses were bad people and they would hurt him, but as we were leaving he said that he met the good nurses and Doctors today... this was all thanks to prayer and a really good idea that I think was heaven sent. Every time that I would start to detect fear in Levi's eyes, he would find a small prize! And we would remind him that special things happen at the hospital, and even though a really, really bad thing happened to him(in his mind surgery was a terrible thing!) we now look for special things and surprises. SO, in the OR there was a superman waiting for him. By the way, he is really hard to find! My poor mother in law went to 8 different stores looking for him, I had already gone to a couple and finally it was Mister who found him. Unfortunately it had to be him since Levi had been talking about wanting one 'weelly bad'... I think we would all agree that it was worth it! The anesthesiologist told me that he fell asleep happy watching spiderman on youtube.
So, the Doctor saw healing around the graft. He isn't sure if the graft itself is healing but if everything around it heals, it could hold it up and be an okay airway. We go back in 4 weeks to remove the stent, a few weeks after that will be the real test to see if everything stays in place...
His airway in general was very swollen, so I am putting him back on all his supplements and going back on a very strict anti-inflammatory diet. Hopefully it will help.
This is all taking so much longer than we thought, we were wanting to take him to the ocean to celebrate this month. Also, there are two spots for them at mustard seed preschool. They can not wait to start! We are now considering not waiting till Levi gets his trach out for them to start.
I know that I just need to let go and be okay with Gods path and timing, fighting it all along the way does me NO good whatsoever. But my goodness it's been hard! It goes against my personality big time. Our lives are up in the way with all these unknowns...
Thank you all so much for your prayers!

not what we were expecting

Well, this time it is just taking me longer to process the information that we got at the last procedure. I decided to go ahead and let you all know since I still haven’t been able to accept it completely!
First of all, thank you all for your prayers! Levi did incredible… I got this idea to hide dinosaurs for him to find and I would tell him that the hospital could be a special place. He had so much fear and terror last time and when I would even mention the word hospital or doctor, he would almost start to cry! So, the dinosaurs were perfect. The anesthesiologist that carried him to the OR could not have done a better job, it was liked we had practiced it all! It was a night and day difference from last time. BUT, the other thing that was night and day difference was what the Doctor saw.
The part that had already started to heal at the last procedure looked good. But the other part of the graft had collapsed. This means his airway is half the size that it should be. If all this is is a major setback, then we are very disappointed. The Doctor was so shocked! He said that he was already getting excited about getting to tell us that the next procedure would be the beginning of the end and that we could start capping the trach(plugging it so he could use his mouth and nose to breathe… the last step). But instead he had to put back another stent in to try and save the graft, so that it can heal in the shape of an airway. When he first came back to tell us this, I wanted to just have a meltdown. The thought about having a stent in for 4-6 weeks was terrible. Remember, with this he could barely swallow his own saliva! But thankfully the Doctor thought of a different type of stent, it’s a hallow tube instead of a plug so it hasn’t bothered Levi. It was a big relief when we came home that night and Levi was able to eat.
So, we wait two more weeks and have to go back again to see if things are healing properly. The stent is somewhat see through. Unfortunately this is going to be a lot longer than we expected and hoped for. And of course, there is a possibility that he will need a second major surgery. Honestly I can’t even imagine having to go through with it.
It’s so hard to not be able to see light at the end of the tunnel, but for me it’s even harder to see light and have it taken away. I know that God wants me to rely on Him and to trust that He is in control. Of course I had all kinds of plans in my mind and I needed the timing to be perfect with no setbacks. Levi and Jesse have been talking about going to the ocean when Levi could swim like a fish, like nemo. We were hoping that we would all get to go before it got to cold. Mexico is ALWAYS on my heart. I try not to talk about it too much, and I never want to sound ungrateful for TN and what God has done here. We really want to go again for Christmas and ‘the plan’ had been to stay a little longer this time. Again, God is continuously teaching me not to make my own plans… a hard lesson.
Please do pray for healing for Levi’s airway… for God to show us his hand in all of this. Thank you

The next step

Thank you all so much for your prayers for Levi and our family! Those of you that are on facebook know that Wednesday’s procedure went well. We got there and Levi started getting a little nervous and was just uneasy. He was doing pretty good really until the moment I started taking his shoes off…. My poor baby was terrified! I have never seen him so hysterical, but really, if I thought that I was getting ready to go through the same thing again, I would have been doing the same thing! There is this miracle drug that they always have offered but that we had never needed. We had to wait to give it to him about 15 minutes before they took him back. Thankfully, everyone was not only on time but actually ahead of time! There was no calming him down but once he got that medicine… well… he was pretty happy! He did get a little nervous when he looked up and there were 10 medical people surrounding him. He was scheduled to go back at 3:15 but by 3:00 we were done! It was amazing. The doctor said everything looked great and even better than he expected. He wanted to see the rib graft still be white, because the stent was there there was really no room for it to heal. A yellow color would have been really bad, it would have meant that the graft was ‘dead’. But instead, he saw a little bit of red going through the back, and that meant that blood was starting to flow through it! The other one was nice and white. It felt so good to see the Doctor walking in the waiting room with a big smile! He did really well waking up and by 4:20 we were on our way home!
Immediately after surgery we noticed an enormous difference with his swallowing. He has been doing incredible! He was only a couple ounces lighter when they weighed him at the hospital(that was an answer to prayer and the only way I was going to keep the nutritionist off my back!), but these last couple of days he was been eating better than he ever has before! He also has started talking again, although he will only whisper. I don’t know if he doesn’t realize that he can talk louder, or if the fact that he’d been unable to make any sounds for three weeks made him forget how to speak in more than just a whisper. Anyway, it’s good that he’s talking and maybe once we start speech therapy he will start speaking up!
We already have our next two procedures scheduled, this Thursday at 4 pm and then the 28th at the same time. The Doctor wants to see continued healing and make sure that everything is moving in the right direction. And they will be removing the new scar tissue that shows up. They use a laser to remove it and it’s not very invasive.
Thank you all so much for your prayers! It’s hard to believe that we are so close to being free from the trach!!!

Tomorrow is a big, we have to be at Vanderbilt children's at 1:15. Its the next step to getting the trach out. They will be removing the stent that is in his upper airway. This is when we find out if the surgery was a success. Hopefully after that, he will be able to eat a lot better and we will start hearing his voice again. I have missed it so, so much! They will also be able to check and see how everything is healing. It most likely will still be a while before the actual trach comes out, but after this waiting wont be as bad!
Thank you all so much for your prayers and encouragement, we have also been so blessed by the meals that we've been getting! These last two weeks have been tiring, it's so great to have so many amazing people lifting us up!
Please be praying for peace over Levi, every time we even mention the hospital or doctors he gets very scared and sad.
Love you all!

Hey Everyone, I know I left you all hanging after the last update, sorry! We went to the pediatrician on Monday morning and it could not have gone better! Thank you all so much for your prayers and for your encouraging comments. Monday morning I had such a peace, I was prepared with a really good case but I didn’t even really need it! I had felt so attacked the days before and was really exhausted. We were there for less than an hour and the Pediatrician pretty much just said that she knew that I would take care of Levi and that I would do what was best for him. She said that she totally trusted my judgment and she had told that to the Doctor on call that was so rude. So, she agreed that there was no point in putting Levi through any more than is necessary. He was eating a little bit then and drinking very well. Every day he improves a little, he’s not eating much, but enough to keep him very active. He also has a little cold so that doesn’t help. This all reminds me of the days when we first left the hospital. Not much sleep do to needing to suction very often, difficulty getting enough food in the boys… although one major difference and what makes all this really hard is the fact that it now involves are whole family. The boys felt a lot of pain the first months of their lives. It was an incredible battle. But they didn't understand what was going on. They could be comforted with a good swaddling blanket and their pacifiers. They didn't know any different. We are so blessed that the boys are not used to pain and fear and that they have been so healthy and happy and active. So having to go through this now has been really hard on both of them. We know it’s only for a season and once this season is over, our lives are going to be so incredibly blessed, even more so than it already has been!!! I cannot wait…
Next week, on the 7th at 3:15 pm Levi will be getting the stent out. After this, things should improve a ton! Right now this is blocking his airway and touching his vocal cords, which is why he can’t speak or even make any noise, it’s also why he is having so much difficulty eating. Every time he swallows he can feel the stent stuck in his throat. Also, when the stent is removed we will know whether the surgery was a success or not. After that I’m not really sure what’s next. It seems like with my friends son who had this same surgery, it was a couple of procedures later that he actually got the trach out completely. With a couple of weeks in between each procedure. I haven’t really asked the Doctor because I know that every case is different. I’m going to be so excited when he says it’s time to pull it out!!!
Today I was listening to the boys play… well, it was more like Jesse talking nonstop asking and answering his own questions. But he would say something and then interpret what Levi was signing… for himself! it was really cute! I miss hearing Levi’s voice so, so much. We have been so blessed and have never taken it for granted. The fact that he has been communicating so well for so long is such a miracle!
The cut in his chest and above his trach are healing very well. He doesn’t complain about pain anymore ether, it’s made life a lot easier on both the boys since they are able to play a little rougher. The risk of aspirating food and liquids into Levi’s lungs will increase every day. Because the swelling is going down and the way the stent is in the way of the vocal cords. But we are trusting that everything will be fine and we are counting down the days for this next big step. Thank you all so much for being a part of this journey. We are blessed…