We Are HOME!

It seems almost unreal, but our family is finally home!



Yesterday morning an organization called Angel Flights flew Jake from Cleveland to Cincinnati and the four of us made the 5 hour drive home.

The drive itself was about as chaotic as we expected with lots of messes. I will allow you to use your imagination on that one haha. But coincidentally Levi got to have his first bath at home when we walked through the door!


The last 12 hours have been so surreal- almost like a figment of my imagination. Between the two boys we were up and down all night, but we are together! This morning all four of us laid in the king size bed and just soaked in our togetherness.

Malachi is a different kid with Levi around. He is very serious as he listens to his brother’s every move and is very concerned when Levi cries. Levi doesn’t quite share the same infatuation with Malachi but tolerates him well. 6955C58A-D7C0-4A74-8D72-802C1AFBD1DB

I took this video this week of Malachi playing his piano for Levi:

We are one happy family.

Yesterday on our drive we needed to feed Malachi (a 45 minute process) and Levi needed to get out of his car seat. We tried to find the emptiest parking lot we could find at lunchtime on a Sunday and ended up at a random Japanese steakhouse in the middle of Kentucky. Jake and I couldn’t help but laugh as we wheeled in Malachi with a dirty diaper, Levi covered in vomit in his car seat, a feeding pump, and a giant cart on wheels with two large tanks of oxygen.

They settled us in the corner of the restaurant and as we sat there, a conglomerate of choas, I started to tear up. When I looked over to Jake he was doing the same and together we both breathed a sigh of relief, joy, and victory. For months we have fought and fought for our son, for our family. And here we were, all together…granted we are literally a rolling circus, but we are together.

To be honest, I held my breathe most of the day yesterday. As much as the devil has been after our family I wasn’t so sure he would let us get home without a fight. But as we got closer and closer to home and I saw those Tennessee mountains that lead home I let my guard down and allowed reality to sink in. And I couldn’t stop smiling.

This week we will be finding our groove and cherishing every moment. Our church family has organized meals for our family, friends have cleaned the house, and we have zero plans other than sitting in our home as a family of four.

Now for some medical updates.

Levi had his MLB (throat scope) on Thursday afternoon and while it does look like the area is healing very well, there was some granulation tissue, which is basically tissue that forms on a healing wound. So instead of his airway being smooth, there are now some bumps which are catching some of his secretions instead of letting them smoothly go down his throat.

His airway has tightened a bit since the last scope. As it has healed it has pulled in and is more narrow then last week but it still seems open enough to allow him to breathe trach free.


Because of this, Levi will need to have another throat scope done in three weeks (April 11th). It will require us to stay at least one night, which I am not looking forward to one bit. But being able to go home now is a blessing!

Granulation tissue can also make his breathing louder. Right now he sounds like a goose and has a low pitch noise when he breathes. Aside from the noise, he is still doing very well with his breathing and is on 1/8 liter of oxygen, which is not much at all.


This week I was educated on Levi’s oxygen, feeding pump, g-tube, and pulse oximeter. We learned that Levi likes to swing and loves to be held. At all times.

We also learned that Malachi is one awesome big brother. He loved the opportunity to be near Levi every day and would get excited each morning when I told him where we were going. I continually talk to him about what a Big Brother is and how he has to share his toys, books, and his mommy. I also let him “hold” Levi and when I took him away Malachi signed “more” so I put Levi back on him again. Malachi even moved his arm around Levi and rested it on his belly. He is so excited to be able to interact with his brother.

I have been trying to involve Malachi as much as possible, just like you would a typical child. I will hold Malachi close to Levi’s swing to let him rock the baby. I even put him in the bed with Levi so he could grab his little feet, and Malachi thought is was hilarious that Levi was kicking him.

Things are about to get seriously crazy for our family. In the next month and half I will be cramming in all of Malachi’s specialist appointments that we have missed over the last four months, and adding in all of Levi’s specialists. Aside from his therapies we will have about 16 appointments to travel to…Nashville, Cincinnati, Chattanooga, and Cleveland.

That means I will need to figure out quickly how to cart a 5 year old immobile toddler, a 4 month old baby, oxygen tanks, pulse ox, feeding pump, and all the other gear that babies and kids need. I will also have to give 14 different doses of medications each days between the two boys.

Game on!

I have had a lot of God moments this week as I reflect on our nearly five month fight for Levi. I don’t know if you have ever been overwhelmed with the presence of God but it is an amazing feeling. I continually find myself speechless, only being able to utter the words “God, you are good.”

Last night as I laid awake and listened to Levi’s squeaky little breaths I thanked God. Although we have been through the ringer, I can’t help but feel that God’s hand of protection was on our family. The road was rough, but I still feel that we never left the palm of God’s hand and he softened some of the potholes in the road.

I started thinking about the story of Job and how when Satan decided to test Job, God put parameters on him. Even in times we are under attack if you are a child of God it doesn’t matter what the enemy has planned. God’s plan will always supersede the plans of the enemy.

Psalm 23:4 “Even though I walk through the darkest valley, I will fear no evil, for you are with me…”

I would love to write more but there is a really cute baby staring at me and I have spent too many days not being able to pick that boy up. Thank you for sticking with us through this journey and for praying without ceasing for our family. Please continue to lift us up in prayer as we navigate life at home with our unique and amazing little boys.

And don’t worry, I will continue to update the blog each Sunday! It wouldn’t feel right to leave you all hanging!

Plus these boys have more mountains to move!

Much love,



To Be Continued…

And exhale.

Have you ever been anxiously awaiting something? And the nerves from waiting are almost too much to bear as your stomach turns and twists?

This whole journey has been a series of those moments where we do a surgery then have to wait 1-2 weeks to see if it worked. It is kind of like a TV series that leaves you on a cliffhanger at the end of the show with a “To Be Continued…”

I am one of those people that reads the last chapter of a book first so I know how it is going to end. Otherwise I will drive myself crazy envisioning the what-ifs and not actually enjoy the process of reading the book. Movies like Beauty and the Beast made me a nervous wreck as a child. The stress of waiting these last 4 months has taken it’s toll on my spirit as I anxiously wait for good news only to then be hit with the bad news that it didn’t work.  It is hard to keep believing, hoping, and fighting when that devastation knocks you down like a tidal wave.

But this time was different…Levi’s most recent surgery looks like it was successful. Praise. The. Lord. We have to keep in mind that as he heals this could change, but initial thoughts are that it has worked.


Levi went in for his MLB (throat scope) on Monday and the surgeons were very pleased with how the rib graft looked. It stayed in place and has started to heal, solidifying it’s placement in his airway. We were able to extubate him (take him off the vent) on Tuesday afternoon and put him on just a tiny bit of oxygen. The following 48 hours were nerve wrecking as we watched to see how his body would do on it’s own without oxygen support. We weaned him down and he did great but got tired and had to be put back on .25 liters. We are going to continue trying to wean him off over the next several days, as we are thinking that his withdrawal from morphine may have contributed to his lack of endurance off oxygen.

But even at his “worst” without oxygen he was able to maintain an oxygen saturation in the low 90s! For those who don’t speak medical, 100 is as good as it gets and ideal is above 94.

The big negative from the surgery is that it does seem like Levi’s voice has been affected. His vocal cords aren’t coming together well anymore and so he is unable to produce many sounds. There are things we can do later in life to try to help give him a voice, but for now we will just pray that he will be able to speak. I did hear him cry for the first time this morning for about 2 seconds so that was exciting!

Levi will go back to the operating room on Thursday (unlike the original plan for scoping this Monday) for another throat scope to make sure everything still looks like it is holding well. But based on how he looks, it seems that this surgery did the trick.


So let’s talk about the future with Levi. This isn’t an issue that we can ever “check off the list”. So we may have succeeded at avoiding the trach for now, but he will have to be watched closely for many many many years- and possibly even the rest of his life. Hypothetical example here, but there may come a time when Levi is running on the playground and we notice he has a harder time catching his breath. Or we start to notice his breathing get a little louder than normal. When those things happen we will have to bring him back to his surgeons to have them make a plan for what they can do to help. That plan could likely involve more surgeries and his follow up care will include LOTS and LOTS of MLBs (throat scopes) as we watch for new issues.

So while we have found a solution, it is essentially a temporary one while we wait and see. Jake and I have learned through life with Malachi that you will make yourself sick trying to envision the future. Sometimes it is best to look at the successes from just today and not let worry rob you of that joy.


What next? Thursday’s throat scope will determine the next step. If it looks good, we will talk about discharge. If it looks decent but they will want to look again we will have to stick around a few more weeks…possibly staying at the hospital but possibly staying at Ronald House with Levi.

Our plan now is to bring Levi home on a small amount of oxygen. It will make me feel better to have it on hand in case of an emergency. If Levi gets sick and his airway swells at all we could be in serious trouble. I like the idea of having a support option available instead of having to rush him to the ER.

He will also be coming home on continuous feeds through his g-tube; that means basically that he is being fed a small amount every second of the day. Obviously this is not ideal as he will be hooked to a feeding pump all day, so we will be working hard to consolidate his feeds a bit more once we are home. I would love to get him down to getting fed every three hours.

We need to be very cautious about trying to get Levi to take a bottle. We widened the gap to his airway significantly and will need to run tests to see if it is safe for him to swallow liquids without that liquid going into his lungs (called aspiration). We are getting dangerously close to the time frame in which babies can no longer learn how to drink a bottle but we will see.

On to the good news from today…Levi has been moved out of the NICU and onto the Complex Airway floor! While this may seem insignificant to you, this is huge to us. We are now able to spend time with Levi as a family, Malachi included. Today as all four of us sat in Levi’s room together I couldn’t help but feel overwhelmed with happiness and encouragement that we can make this chaos work. This week will be the true mom test as Jake heads back to Tennessee and I have both of the boys in the hospital room with me. It will be good to figure out how to manage medications and feeds for Malachi while also caring for Levi as much as possible. My plan is to take Malachi over by 9am when the doctors make rounds and stay until 6-7pm. We will see how all that works out!


Levi is still on a 10 day weaning protocol to help him get off the morphine he was on after his procedure. He has tolerated it well and today was the first time I noticed him having tremors and being agitated- a sign that he may need a little more medicine in him to help with those symptoms.



Malachi is having a much better week, particularly with his seizures. He has not had another large one since his random one last week, and is back to having his normal amount which is about 12 a day. When he is able to be with me all the time we can keep that number down to 4-6 a day so I am really hoping this week will be a good one.

Here is a silly video of him playing with my half brother and half sister!

We are blessed beyond measure. I can’t even put into words how blessed we are. In the weeks following Levi’s birth Jake and I would just sit and stare at each other shaking our heads in disbelief. How in the world could this happen to us…again? After such a watched pregnancy we never saw this coming. This was supposed to be the easy child I prayed to God for. This was supposed to be the one out of my two children that I could drop off at a friend’s house on days of Malachi’s appointments. This was supposed to be the brother to Malachi that could yell from the other room “Mom, Malachi is having another seizure.” and help him through those moments because he would be a rock star little brother.

This was supposed to be the one we took home from the hospital days after his birth. This was supposed to be the one to breast feed and to get to wear all those cute newborn outfits. Selfishly, this was supposed to be my chance to experience normal.

With Malachi’s early birth we didn’t have time to really mourn, and we didn’t know any different. But with Levi’s complex airway issues we feel like we just got hit with a wrecking ball that no one saw coming. We had so many hopes and goals this time around.

But in those moments that brought us to our knees with disappointment, grief, and questioning, God brought so many of you to strengthen us. We have felt so much love poured out for our family over the last several years, and it has been intensified over the last 4 months as we face yet another battle.

We have had people fly in and drive in from Tennessee to help with Malachi. We have had family and complete strangers here in Cincinnati give up time to come sit with him for an hour to let me go be a mom to Levi. We have had churches and individuals bless us beyond what we deserve with encouragement, financial gifts, gas cards, and prayers. Sports teams in our hometown put out donation jars. Jake’s high school decided this week to sell a product that had created and give all the proceeds to Levi’s medical bills. We have even been contacted by Angel Flights offering Jake a free flight to Cincinnati when Levi gets ready to be discharged so we can all ride home together in the same car.

Jake and I continually talk about how humbled we are by our community of support. We didn’t deserve it the first go around, and we haven’t deserved it this time either…but God is teaching us so much through each and every step.

When we made the decision to bring Levi to Cincinnati we did so with a huge question mark about how we were going to possibly fund such a huge venture as it was “out of network”. His bills are now up to $1.8 million dollars (before insurance payments of course). Not to mention the looming hundreds of thousands of dollars required for Malachi’s regular care and necessary therapies each year. We tried to listen to God and determine if this step was in His will and we felt so strongly that it was. We tried to make this decision taking the financial aspect out of the equation.

We started talking about fundraising and asking for financial help, but both felt an intense conviction from God about doing so. I heard Him say “Are you not trusting that I will provide?” We made the decision to give our stress and fear to God, trusting that He would provide a way.

Little did we know that God would provide for us exceedingly and abundantly more than we could have ever imagined. We humbly read each note and message that talked about how “God had laid it on my heart to give…” We have experienced and witnessed the provision of God and watching it unfold has strengthened Jake and I’s faith in so many amazing ways. Just last week I got a call from our insurance company letting us know that they re-evaluated Levi’s case and determined that his Cincinnati trip was an “emergency” and that they are covering his NICU stay at the “in-network” rate! WOW!!!

I think many times we overlook the way in which God works behind the scenes. And we forget that our God is in the details. We like to look to Him for the BIG things, when in reality He is working in all aspects- no matter how minute they may be.

You may not have financial needs. Maybe your needs are emotional, relational, health related. But I want to encourage you to give those needs to God then simply sit back and EXPECT God to act. Look for Him in the small things. Look for the ways in which He is aligning things for you.

And to everyone who has allowed themselves to be used by God to meet our needs, we want to say thank you. I started a list early on with all the names of people I needed to write thank you notes to. That list is now three full pages and while I desire to reach out to each of you individually with a thank you, the odds of that happening before Levi’s 10th birthday are slim haha! Please know that we are praying blessings over each and every one of you, and we are absolutely overwhelmed with gratitude.

Please pray for Thursday’s procedure. This will be THE ONE that determines his readiness to go home! We are believing in and praying for a good report.

Much love,





Buckets of Water

And now we wait.

Monday’s procedure ended close to 7pm and we were a ball of anxious nerves as we waited for the surgeons to report how things went. When you have complex kiddos you learn to read doctor’s faces and body language, hoping for some cue so you can brace yourself for bad news before the words actually hit. Three of the surgeons came in, and each of them had relieved looks on their faces.

“It went surprisingly well!”

And I exhaled for the first time all day.

There are several reasons why this surgery is not attempted on babies Levi’s size, but the biggest hesitation is that it is an extremely difficult surgery to do on such a small airway. We all collectively seemed thrilled that it went as well as it did. One of the risks associated with the graft portion is the possibility of collapsing a lung while cutting the rib cartilage. The graft harvest went great and they were able to get away with only grafting the posterior side of his airway which means no stitches inside his airway. The body should “accept” the new graft and start to heal around it, locking it in.

The two outside incisions are healing very well;  he will have one large scar across his abdomen on his rib cage and one medium sized one on his neck. He had drains placed in both to help with the healing process but both have already been removed.



So did this surgery successfully open Levi’s airway enough to avoid a trach? We still don’t know, but by the end of this week we should have an inclination.

Levi will be going back to the operating room on Monday for another MLB (throat scope #9) where they will see how the graft is healing. He will stay on the ventilator until Tuesday morning when we will try to extubate him, and it will take several days for the swelling to go down. We will also be weaning him off of sedation and pain meds during that time. Near the end of the week we should be able to see how well Levi can breathe on his own. He will have another MLB (#10) the following Monday.

You may be a visual person like me so let me show you a few images to help you understand our goal with his airway.



Starting from left to right: the first image is his airway at birth. It is a normal sized airway but the vocal cords don’t move, so when he tries to breathe in the vocal cords collapse and block it. The airway is very small and there is not a lot of room for air to pass through. The middle image shows his airway after the first experimental surgery (the anterior posterior cricoid split). As you can see, it is definitely larger but still just wasn’t quite large enough for him. The last image is from Monday and you can see at the bottom of his airway they have propped his airway open with a rib graft.

Our marker of success will be his ease of breathing at his baseline of normal. We expect him to pull at his ribs and neck a little when he is upset, but we have to make sure he is not going to drop his oxygen saturation during those moments of anger. He will likely still have stridor (squeak when he breathes) but that is something we are hoping he will outgrow in the next few months/years as his airway grows with him.

Right now our goal is to keep him calm so he does not knock his tube out. This is proving to be a challenging task as Levi is not a fan of having a breathing tube shoved down his nose/throat. He has been a little more squirmy and alert as we would like, so this week has been a dance to find a healthy and safe middle ground with his medications. Right now he is on a morphine drip and getting another sedative several times throughout the day.

It has been incredibly difficult to be in Levi’s room this week. There is one side of me that wants to talk to him and engage with him so he knows he isn’t alone. But there is another side of me that wants him to think he is alone so he will close his eyes and rest/heal. It is a battle of me trying to decide if my actions are driven by what he needs versus what my mommy heart needs. But he did give me a few smiles this week which refreshed my soul.


When Levi cries all I long to do is pick him up and comfort him but instead I have to pin down his arms, legs, and head to keep him from pulling his tube out. It has been a difficult week as I fight all my innate desires as his mom to try to do what is in his best interest.



He has gone through 5 IVs (11 attempts) since Monday. We also had to run an NJ feeding tube down his nostril and into his intestines to try to prevent him from throwing up his feeds and moving his graft.

Levi has officially surpassed big brother Malachi’s record for most consecutive days in the hospital/ICU. Malachi’s record is 112 days and Levi is at 117 and counting. He also tied big brother Malachi’s operating room record this week with both boys reaching 13 surgeries/procedures (26 total).

Speaking of Malachi, his seizures have been significantly worse over the last 24 hours so we are keeping a close watch. He also had some trouble last week with his body temperature and was dangerously close to being hypothermic at 95 degrees. We were able to bring him back up over the course of a few days but are still monitoring him closely. The temperature issues we are attributing to the cold Ohio weather and his quirky brain but I don’t quite know yet what is triggering his big seizures.


Malachi brings us so much joy. While we waited during Levi’s surgery he had me smiling at his silliness… I took a video so you could share in his joy:



Today the Ronald McDonald House had some furry visitors and Malachi got to meet all three of them. We have a dog at home named Boomer and he has missed petting Boomer so much. He was pretty excited to find some dogs to pet.


This is his concentration face- I love how expressive he is!



Malachi also got to try a dum-dum sucker this week with help from momma of course. I told him his tongue was blue and that we should send a picture to daddy. This was his reaction when I pulled the camera out. He is such a smart little boy.


God has been working with me a lot this week in many different ways. Earlier on in the week I got a text from a woman whom I had never met. She introduced herself and told me that her mother was in a prayer group that has been following Malachi’s story since he was born and faithfully praying for him ever since. She told me that her daughter was in Cincinnati Children’s Hospital and would be for the next several weeks and asked if we could meet up.

Time these days is a precious commodity as I want to spend as much time as I can with both boys. I feel selfish and guilty even taking time out of my day to eat lunch alone in the cafeteria in between visits. While I did desire to meet this mom and dad, my heart was telling me there would be no time to do so. I replied to the text with an “Absolutely, yes let’s meet up!”, but in my mind I decided there would be no time and it probably wouldn’t happen.

Fast forward to later in the week. This mom texted me again telling me her daughter was going to be in surgery for several hours and she and her husband were waiting downstairs if I had time to stop by. As luck would have it, they just happened to be waiting in the hallway where I walk into the hospital so I was able to track her down.

We exchanged names and she started asking about the boys. My heart felt so heavy as I told her about Malachi’s special needs and Levi’s airway issues and surgeries. She had so much compassion in her eyes as she listened. Realizing I had spent the conversation talking mostly about my children I directed the conversation back to her.

I asked about her daughter and she filled me in on her medical conditions. I then asked her how many children she had. Her reply blew me away…

17. Yes, seventeen children. Eleven of those children have been adopted, and several of them have special needs. And you could just feel the love they had for each and every one of them.

I immediately felt something stirring in my heart- almost as if God was using that exact moment to put my trials into perspective. As I listened to her tell me about her children I couldn’t help but feel a weight being lifted as God reminded me that every family in this building is fighting a battle…some may be bigger than mine and some may be more unique…but I am not alone in my heartache as a parent.

As those thoughts were settling over me my new friend motioned behind me to another mom that she knew that happened to be walking by. She came over and started talking about her daughters medical condition and joined our little circle of conversation. And yet again, another mom joined our group with her young daughter in a wheelchair. Here we were in the lobby of the children’s hospital, all with children fighting battles much bigger than they ever should have to face.

But in that little circle I saw strength. I saw hope. I saw the same things I see when I look in the mirror each morning…determination, endurance beyond belief, and most importantly a love for our children that drives us.

As I listened to this casual conversation about CT scans, surgeries, shunts, hospitals around the country, procedures, I couldn’t help but smile and thank God that he sent these men and women into my path. They reminded me that sometimes the devil can trick us into thoughts of despair.

“Your life is so much harder than everyone else’s.”

“You are too tired to continue clinging to hope like this.”

“You are weak. Just give up and give in already.”

And as I sat in that circle of warrior moms and dads I mentally wrapped up my pity party and chose to focus on the love that was in every mentally and physically exhausted, blood shot, but hopeful face. I dwelt on the thought that if I had to do this all over again, I would do so in a heartbeat to give my son the best life I possibly can.

As I processed those faces later that evening 1 Corinthians 13 came to mind. It tells us what true biblical love is meant to look like. If you have never read it before, I encourage you to google it now and strap yourself in as it will blow you away.

But I want to focus on the part that burned inside of me as I recited it in my head:

“It (love) always protects, always trusts, always hopes, always perseveres. Love never fails.”

This entire four month battle has been done entirely out of an unconditional, inexplicable love that I have for my son…this precious gift from God. As with all of God’s children, Levi has a purpose on this earth and I can’t help but imagine what that special God given task may be.

I found myself overwhelmed with love showered down from God himself as He reminded me that the same love that burns inside of me for each of my boys is just a fraction of the love He has for me. God wants to give me the desires of my heart…He wants me to smile as I listen to Levi’s effortless breaths, and He wants to me cheer as I watch Malachi boldly run across the room…and I firmly believe that one day I will see those desires fulfilled.

But I also hear Him tell me “My daughter, my plan and MY desires are so much bigger…just you wait and see what I am about to do.”

This week I was reminded of the miracle God performed through Elijah on Mount Caramel from 1 Kings 18. The prophets of Baal and Elijah had a contest. They would each prepare a sacrifice and pray to their god(s). The god who would answer with fire on the sacrifice was the one true God.

The men who worshiped Baal went first. They prayed, chanted, cut themselves trying to get the attention of their false god. No fire came.

When it was Elijah’s turn he had the men pour four large jars of water on the sacrifice and the wood underneath it. Then he had them fill up the jars and do it a second time. Then he had them do it a third.

Here is what happened:

36 At the time of sacrifice, the prophet Elijah stepped forward and prayed: “Lord, the God of Abraham, Isaac and Israel, let it be knowntoday that you are God in Israel and that I am your servant and have done all these things at your command. 37 Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”

38 Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.

39 When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”

As I read this story I couldn’t help but marvel at the ways of God. He could have easily sent fire down to burn up the sacrifice right away. But He took a situation that- by itself- would have been miraculous and He made it even more magnificent.

Each bucket of water tossed on that bull made it more and more unlikely that the fire would consume it. Each bucket created more doubt in the eyes of the unbelievers. Each bucket gave them confidence that the miracle would never happen.

And it was after He drew the attention of a crowd of unbelieving, doubting men that He sent his power to do the unthinkable.

As I look at our life I can’t help but feel that these trials we are going through now are the buckets of water. We were drenched with Malachi’s untimely birth. We are sopping wet with his physical limitations and hurdles in life. Then more rounds of the buckets came with Levi’s birth. Each time we are doused with water our miracles seem less likely to ever take place.

But oh how I long for the day that God decides it is time for His power to be made known through the miracles He performs in my boys. And may He choose to do so in such a way that it brings the unbelieving to their knees in worship to Him.

I believe with all of my heart that Levi will verbally share with others the goodness of our God. And to see Satan trying to steal his voice affirms that in my heart even more.


So as we continue this fight we will strap on some goggles and brace for the buckets, believing that through our story others will undeniably cry “The Lord—he is God! The Lord—he is God!”

And with help from God I will strive to continue to protect, trust, hope, and persevere.



Much love,





I wish I could start this blog by telling you about our amazingly wonderful week, but unfortunately things have become a little more complicated for our boy. Levi is back on the ventilator. It is a long story, but also one I don’t have to go into too much detail on as it is the same occurrence that has happened every weekend for the last 5 weeks.


This was not an emergency situation, just a decision made by a team that felt like it was “best” for Levi. I took this picture of him right before they put him back on the ventilator. He was one high flow oxygen and almost back to his baseline. I try my hardest to be his voice and prevent unnecessary interventions, but I failed him on this one.


Levi is now back on the ventilator and being sedated around the clock so he won’t pull his tube out or move his head. When he is like this I am not allowed to pick him up or hold him without a team of people assisting getting him onto me. When he is placed on me, I can’t move and have to keep him from moving his head as it could dislodge his breathing tube. Levi is too strong for me to risk trying to hold him and keep his tube in place…it is just not in his best interest.

All I can safely do is sit by his bed and stare at him. When he gets upset he can’t audibly cry because of the tube and starts to panic. I can pat his butt and put my hands firmly on his body but that is all that I am permitted to do. Here is a video from today…no need to turn on the volume as he is not able to produce sounds while on the vent. Every ounce of me wants to scoop him up or even fix his little head and neck so he isn’t arched to much, but in order to even do that I would have to have the nurse call a member of the respiratory team to do it for me. NICU life has become synonymous with being stripped of my abilities to truly be a mother to Levi.

Saturday was a devastating day. I find myself again and again feeling like I need to be an advocate for Levi, but not really knowing how to best do that. I am so incredibly discouraged. Overwhelmingly discouraged.


This NICU has attendings (change every 7-14 days), nurse practitioners (change every 2-3 days), fellows (change every 3 weeks but have days off), residents (change every month but have days off). This is the group that makes the decisions for Levi’s care with input from his nurses of course. Every time I feel like we are finally seeing eye to eye his team changes and we are back at square one.

Before this setback, Levi has had a wonderful week. He was back at full feeds and growing again. He is such a long legged kid.


He was breathing better than ever before. One of his night nurses who is on his “team” and has him often commented on how he was a different kid this week. Every morning when I come into his room he smiles so big, overjoyed to see me. I got my camera ready one morning this week so I could share his smiles with you.



And one silly little video for you:



But this was also a week for some big decisions. Let’s get to the meat and potatoes of this post.

Let me present you with a “What would you do” scenario. You just had a relatively healthy baby boy, but after his birth you find out he has an airway issue that will require a trach. Here is a flow chart of your options:


Let’s be honest…every single one of these options are miserable for a parent to have to choose from. Every single one of them brings pain to your child. Every single one involves some extent of a hospital stay. Every single one requires surgery. Every single option will change your child’s life and normalcy in one way or another. So what route do you take? How do you even begin to make such an important decision?

We spoke with one of the head ENT surgeons here in Cincinnati this week. This is the man who “created and adapted” the first procedure we tried for Levi’s vocal cords called the Anterior Posterior Cricoid Split. This experimental procedure had been done on 20 babies with the success rate being 80%-90%. He explained that while we are incredibly close (1mm away) from it being successful, it just didn’t open his vocal cords quite enough to send him home safely. Levi is officially part of the 10%-20% failure rate.


Ouch. Failure is such a strong word, and hearing it used in regards to my son after a 4 month fight is extra painful.

So where do we go from here? There are just a handful of desperate options left to try for our little Levi, all of them except for one involve putting in a trach. Jake and I saw this conversation coming and had resoluted prior to the meeting with the head surgeon to give consent to put it in- much to our disappointment.

But as we talked to the doctor our plans changed as I sensed a glimmer of hope illuminating off of his words. He said that taking our family situation into consideration (aka Malachi’s medical needs) that we needed to do everything we could to avoid the complicated life that a trach would bring. While trachs are wonderful, life saving devices they bring about a host of potential emergency situations that require lots of training, equipment, night nursing staff, and alertness at all times.

There is one more surgical intervention we can try, but it is a pretty big surgery and would be an open airway procedure (the work is done through a 1 inch incision in his neck). After lots of consideration, pros and cons lists, and prayer Jake and I have agreed to attempt the surgery for Levi.


On Monday Levi will be going back to the operating room for a 4 hour procedure called Single Stage Laryngotracheal Reconstruction (SSLTR). In airway terms, this one is very complicated and requires 3-4 surgeons to complete. They will be making an incision in Levi’s side where they take a piece of his rib cartilage and carve it into a graft to place between his vocal cords. The graft would be 2mm-3mm, which should be more than enough for the needed 1mm gap that yet remains to be achieved. Think of a top hat shape that fits like a puzzle piece in between a V making the base a bit wider. Over time the body should “accept” the graft and grow around it- it will never need to be removed.

Our goal is to only have to place a graft between the back of his vocal cords (the posterior side). If for some reason they decide that is not enough they will carve another graft and sew it into the anterior side.

If we had decided to trach Levi, this is the exact procedure we would have attempted at the 1 year mark. The only difference is that he is too small to have it done endoscopically like he would at 1 year old. We are incredibly anxious about opening his airway in this way, but also have to keep reminding ourselves that a trach would have opened it similarly and more permanently.

Okay, so on to the best and worse case scenarios…

Best case scenario is this graft works at opening his vocal cords and allow him to breathe without any issues. This procedure has an 80%-90% success rate and the surgeons have based that number on many many many kids who have had this done (some even smaller than Levi). This best case scenario would have us home in about a month.

The worst case scenario is the graft does not open his airway enough; this won’t be able to be determined until the 2-3 week mark post op. There is also a risk that the graft could fall out. If his happens we will put in a trach and try it again in a few years in an attempt to get the trach out. This route would have us home in about 2 months.

Levi will be intubated for 5-7 days after the procedure while his airway heals. He will have a chest drain and a neck drain and will likely be highly sedated to keep him from pulling his breathing tube out- something he has done several times since birth.

After 110 days of praying without ceasing, nurturing a faith that can move mountains, and believing that this time would be different for our little family it seems that we once again struggling with disappointment.

Matthew 17:20   “Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

Our faith is a whole KFC bucket of mustard seeds right now, but that darn mountain just won’t move. Not even an inch…or 1mm in Levi’s case.

We have been making decrees over Levi’s airway. We have been speaking wholeness over him in the name of Jesus. Thousands of people have been praying alongside of us. I have begged, pleaded, tried to reason with God to heal our son(s). But the mountains in his life remain, and they seem to be getting more jagged and threatening.

So what do you do as a Christian when the mountains don’t budge?

You trust God. You continue to pray without ceasing. You continue to plead, believe, decree, and pray. You continue to praise him in the storm. You continue to trust that His ways are greater than our own. You continue to EXPECT a miracle.

There is a man named Nick Vujicic that was born without arms or legs. Something he said has always stuck with me: “I have a pair of shoes in my closet just in case He decides to give me limbs, yet I have peace knowing that He may choose to heal me not here on earth, but in heaven.”

We should always make our desires known to God and expect Him to give us those miracles we plead for, as unfathomable as they may seem.

So as we go into surgery tomorrow I am going to ask all of you to pray for Levi’s miracle once again. Before they will start cutting into him they will be scoping his throat to see if everything has remained unchanged from the last scope.

How wonderfully amazing it will be to hear that they don’t need to continue with the surgery as they have seen his vocal cords COME TO LIFE! I absolutely believe that God is able, and I choose to expect a miracle tomorrow.

And what if yet again we command this mountain to move and it only grows taller and more daunting than before? My prayer is that God will give us the grace to continue to stand in faith, even though our knees may shake with weariness. We will pray that God strengthens our voice to be able to command those mountains to move as many times as needed. We will pray that God continues to lift our arms when I can’t lift them any higher so that you all may hear us praise Him through our pain.

A friend this week sent me this song and it captivated my thoughts as it sounded so much like my heart these days. I hope this blesses you:


Much love,