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!!!

Update

Hey everyone, thank you so much for the prayers for Jesse… he is totally fine now! We did end up staying in the hospital for 5 days. It took him a long time to get off of the extra oxygen, but the day I took Levi with me to Vandy and stayed all day, is the day that Jesse went from having to have the oxygen at all times (like it would come off for a few seconds and he would start going down!) to being totally fine without it. We came home on asthma medicine to prevent incidents like that one in the future. We really don’t like having him on it but until we can find a better alternative, we will continue to give it to him…
We left the hospital on Tuesday and then had to go to the pediatrician the very next day to make sure Jesse’s lungs still sounded good, thankfully they did and his ear infections were gone as well. Levi’s ear looked much better but not 100% just yet.
We are needing wisdom and prayer to decide if we want to stay with our pediatrician or find a new one. Do you remember when we first came home from the hospital after Levi’s big surgery in August? The Pediatrician on call was freaking out because his feeding tube had come out and I didn’t let the ER people re-admit him to try to put it back in after two failed attempts? Well, the same lady came and did rounds at Vanderbilt and after listening to him once decided that nobody there could wean him off of the oxygen or space out his breathing treatments for two days. I. Was. Furious. We couldn’t go home until he was off the oxygen and on every 4 hours of breathing treatments. We had already been there for 4 days and he was doing so great. Everyone disagreed with her(respiratory therapist, nurses, resident and fellow), but she made it clear that she had the authority to decide. After talking to our pediatrician we did get that resolved and left the next morning. This Doctor is the owner of the practice and I’m sure she is a smart women. I read her profile and it sounds like she is a great Christian as well. But we have just had the worst experiences with her! The two times that we have had to deal with her… well… they have just been horrible experiences. SO, if the boys ever get sick on a holiday or if they are at Vanderbilt on a Monday, she will be there… Anyway, please pray for God to give us wisdom on whether to stay there or find someplace else, Brian and I love the boys pediatrician but don’t know if we love her enough to risk having to deal with the other Doctor again.
So, tomorrow Levi his having yet another scope. Gosh, I don’t even know how many he’s had since his big surgery! Too many for sure. We are hoping and praying for a miracle, that his airway will look clear and not irritated, the swelling completely gone and that the Doctor will see a nice sturdy and strong structure so that he can take his trache out with confidence and his airway will never collapse. Not too much to ask right?
One week after tomorrow we leave for Mexico. To say that I am excited would be an understatement! This has all been very exhausting and I just need to breathe in air from my beautiful ranch… no doctor appointments, no phone, no crazy holiday traffic… just surrounded by my crazy amazing family. Enjoying the different community Bible studies and delicious food… right now it sounds like a dream!
Love you all and will let you know how Levi’s airway and esophagus look…

Please pray for Jesse

Prayers please! This time they are mostly needed for Jesse. We took him to the pediatrician this morning after about 5 days of having a cold/cough. He was actually doing better but thank God the pediatrician said to bring him in anyway. He has a double ear infection and his oxygen levels were so low, we almost had to go to the Children’s Hospital by ambulance! They thought it could be pneumonia and haven’t ruled that out yet, but are thinking its asthma. We were at the ER for about 6 hours and they couldn’t get him breathing well enough so tonight he is in the ICU. I’m so thankful that this is all so very new to Jesse; this is his first time back to the hospital since he left as a 3 month old -5 ½ pound baby. Although it is super hard on him and he doesn’t get why he has to have ‘strings on his wittle hand’(IV), the pulse oxymiter is driving him crazy and he insists that he feels better and wants to be all done… all I can think about is how awesome it is that he hadn’t had to go through this before, and I know that this could have been a normal thing for him but it’s not.
Also please keep Levi in your prayers. Yesterday he started acting a little sick, he too has an ear infection and a cold. If what Jesse has is viral, it’s very contagious and Levi has been around him all along. He is coughing pretty badly tonight.
Thank you all so much for praying!

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…