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,


Preserving Normal

Last Sunday night was a reminder to me that it is never safe to relax when you have a son in the NICU. The internet connection at the Ronald McDonald House is painfully slow so I usually try to type the blog over at the hospital late on Sunday evenings. I spent some good quality time with Levi then found a quiet spot in the waiting room to type an update.

Honestly, it was the happiest I had felt in a long time. Levi seemed to be improving so well from his surgeries and he was sounding better than before with his breathing. He was down to a half a liter of oxygen (the cut off for what we could officially go home on per protocol) and aside from being whiny and wanting to be held, he was doing SO good. We were going to meet with his doctors the next day and I was just so confident that it was going to be a productive meeting.


I felt like so much weight was lifted off of my shoulders that night as I walked back over to the Ronald McDonald House at midnight. I was mentally preparing what I wanted to discuss at the care conference the next day; I was also looking forward to a full night’s rest- something that is only possible the nights Jake is here and can get up with nocturnal Malachi. I climbed into bed…then 30 minutes later the phone rang.

It was the hospital staff telling me that Levi was extremely agitated and didn’t want to be put down. He had been like this since his surgery so I wasn’t too alarmed, but they said that they didn’t have anyone there who could hold him continuously as they all had other babies they had to take care of. Levi was supposed to have a blood gas drawn at 4am to measure the carbon dioxide in his blood. If he cries that number goes up, and with such an important meeting on Monday I wanted to make sure that he had the best carbon dioxide level he could.

I got dressed again and headed back over to keep him calm. We rocked and played until he fell asleep, just in time for his blood gas. His level came back GREAT and he was sleeping so well that you couldn’t even hear his stridor. I felt like high fiving myself as I walked back across to the Ronald McDonald House. I climbed back into bed around 4:30 and fell back asleep.

Then the phone rang again. Ugh. There is nothing that makes your heart skip a beat more than those phone calls that show up as “Cincinnati Childrens”. We have had dozens in the short time we have been here. It was just after 7am so in my head I was thinking that surely nothing major could have gone wrong in the last 3 hours.

The resident told me that Levi’s heart rate had shot up to the 220s (his normal range is 130-160) and was working harder to breathe so they put him back on high flow oxygen at 4 liters. I kept asking “What happened? What was the trigger?” But no one seemed to have pinpointed it yet.

This is the 4th weekend in a row that this exact same sequence of events has happened. This time was no different as they cycled through the possible causes:

Chest x-ray- came back clear

Blood cultures- clear

CBC to check white blood cell count/possible infection- clear

Stop his feeds and start an IV (which took 3 tries)

Catheterize him to check for urinary tract infection (something I would not allow them to do this time because it always comes back clear)

We have watched the same exact sequence of events happen EVERY WEEKEND. Jake and I had even joked that we had made it through a Friday without the above sequence being done. We spoke too soon.

When they put Levi back on high flow oxygen it makes him even more agitated and increases his heart rate even more. And stopping his feeds makes him hungry and leads to more agitation. So the things that are meant to “help” actually make things worse. It makes it difficult to pinpoint the reason why he is so worked up.

BUT luckily this go around we were able to figure it out pretty quickly. Levi’s g-tube had key holed, meaning the extension tube had been taped too tight and pulled the button over, opening up his incision. Feeds and gastric juices were literally pouring out of his little body. He was in so much pain and his body had used up it’s reserve.

We started him back on pain meds and kept his belly empty until late Thursday to allow the incision to heal. It looks much better and he is acting more like himself now that he is getting a small amount of milk back in him, and we should be able to get back to full feeds by the middle of this week. We were able to wean his oxygen down to 1 liter and he has been doing well with his breathing.

That small setback was like a sucker punch to the gut for me. Every time we start getting some momentum BOOM. I was an emotional mess as I watched him yet again go through these interventions. I have zero desire to watch my 8 pound son attempt to get an IV placed. But I also feel like he needs me there to keep him calm and feel safe, so I hold the pacifier or I hold his little hands still as they poke him. And I watch his big, sweet eyes fill up with tears as the pain registers. And we do this over and over, because each time they get a vein it collapses. It never gets easier to watch your child go through painful things.

By lunchtime Monday Levi and I both were covered in his blood, vomit, tears, and stomach juices. I felt like I was going to pass out and needed to get ready for our important meeting. I was running on the 3 hours of sleep I had gotten the night before, and I was feeling so defeated. I shamelessly trudged through the hospital with my red, blotchy tear stained face and my bloody hands and went to my Ronald room to have a good cry and a shower. But even that couldn’t last as long as I wanted it to, as I needed to get back to the hospital within the hour for our patient care conference.

The care meeting went well. In addition to Jake, Malachi, and myself were Levi’s ENT surgeon, his neonatologist from the week before, his neonatologist who was taking over his case for the upcoming week, a fellow, a resident, and the social worker.

The first question we asked was to his ENT surgeon. I asked her if Levi was considered a success or a failure for the experimental procedure. She said that he is neither, but what she would call “marginal”. She explained that at baseline Levi would be considered a success. But he is walking a tight rope of success and tiny things bump him off quickly. For example: vaccinations, surgeries, pain (as we saw that morning). So the procedure was “successful” at opening his airway like we had hoped, but we are still trying to find out if it was enough to keep him completely safe. She reminded us that he was hands down the smallest to have this new procedure done, so we are all watching hopefully that it will work.

While we would like to pretend that we can keep him from any and all triggers, pain is the one that concerns us the most. What will happen when Levi starts teething and gets worked up? Will that tip him over the edge and cause him to work harder to breathe? What if he is learning to walk and falls hard? Will that moment of panic cause him to not be able to catch his breath? We have to make sure he is completely safe in order for us to bring him home trach free.

The ENT surgeon is still hopeful that he may be “safe enough”, especially if we bring him home on oxygen as a back up plan. He doesn’t need it when he is calm, but we like the idea of having the option to turn him up if he gets upset.

We then shifted the conversation to the NICU staff. We talked about how sometimes the interventions they do with him are necessary (like when he drops his oxygen), while other times they are not necessary (like when a nurse “thinks” he looks like he is breathing too hard when actually he is at his baseline). The only way we are going to be able to evaluate Levi’s safety is to let him show us what he can and can’t do. So instead of intervening so quickly and throwing him back on high flow, we need to do less invasive steps to see if we can keep him from escalating so quickly.

For example, at the first sign of any pain/agitation he needs to be given Tylenol. And maybe we will need to bump up his oxygen percentage slightly. Then if things continue to change negatively, bump him up a liter. But any and all interventions need to be slow as we are still evaluating what he can safely handle.

The NICU docs explained that while they would try hard to do that, we need to be patient with them as this is going to be very difficult to do. They said that in nursing school they are trained that if they hear stridor like Levi’s they are supposed to intubate immediately! So to hear his breathing and see him pull a little at his ribs and neck tends to cause them to want to intervene. But the ENT surgeon said it best: “We can’t strive for perfection with Levi. We are looking for him to be just safe enough to go home and grow.” The only thing that will help Levi’s airway now is for him to go home and get bigger as the airway will also get bigger and widen the gap between the vocal cords.

So the plan is to allow him to completely heal from his g-tube issue and get back to full feeds. Once that happens we will give him a few weeks to show us what he can do without any triggers messing with him. If he passes the test, we will talk about going home with some oxygen. If he doesn’t we will have to put in a trach for at least one year. At the one year mark he would require another surgery to put a bone graft from his rib in between his vocal cords. If that surgery worked he would then get the trach taken out.

We are also hoping that Levi is part of the 50% whose vocal cords “wake up” and suddenly start working again. What a blessing that would be!

Overall the meeting went very well and for the first time since we arrived, I felt like everyone was finally on the same page. While our plan is still ambiguous, at least we had one. Then this morning the tone seemed to change a bit…

This morning I was able to make it to rounds and the neonatologist told me that they (8 of the neonatologists) had a meeting on Friday where they discuss all their complicated kiddos. She said that Levi was discussed at length and they all agreed that he was not safe to go home without a trach. She didn’t even think that he could safely ride in the car home to Tennessee. I was a little disappointed to hear this, as I thought we were all going to keep an open mind while we watched him for a few weeks.

And this is where we are torn. The ENT surgeon who has done/witnessed this new procedure 21 times is telling us that she is feeling confident that he may be “safe enough” place to go home. But the NICU is telling me he is not even remotely safe. I do not want to trach Levi until I know it is absolutely the last option on the table. I definitely don’t want to trach him if it is not entirely necessary per ENT. But how in the world will we ever get discharged if the people who would make that decision feel so strongly he isn’t safe.

Levi is breathing the absolute BEST he has ever breathed! His stridor and retractions are still there, but they are expected to stick around for years. I video document Levi throughout the week so we can have comparisons. Here is one I took today while he was sleeping. If you have been following us for long, you will be shocked at the marked change in his breathing:

He only sounds this quiet when sleeping, but it is still a huge improvement!


During Monday’s meeting one of the doctors said a phrase we have heard so many times since we have been here… “It isn’t fair to you all to send him home with such high needs.”

I can’t help but laugh inside when I hear these words…especially when I am have a 40 pound 5 year old special needs son balanced on my lap. I shook my head when she said this and said, “It doesn’t matter what is fair or unfair. This life is no longer about us… it is about our boys. What you need to understand is that we chose this life, KNOWING that it would require sacrifice and selflessness. We had the opportunity to let Malachi pass away, but chose life for him, fully aware of what that could mean for us. And I know it may not make sense to you, but we are unbelievably content with this life we live- in spite of how miserable it can sometimes be. We don’t feel that our life will be cheapened in any way with adding Levi as he is into our routines, chaos, and uniqueness.”

I explained to them that we aren’t making these medical decisions based on a fear of trachs or a fear of our son looking different. If any family can handle the device management and the stares from strangers it is us. But this entire journey that we have chosen to go on is simply driven by our intense desire to preserve Levi’s “normal”.

We knew before Levi was even born and these issues were known that he was not going to have a normal life. No matter how hard we could try, Levi’s life will always be different than his friends because he has a brother like Malachi. While Malachi will bring SO many blessings into Levi’s life, he will also bring things that most siblings don’t have to deal with- surgeries, doctor appointments, diaper changes, hospital stays, wheelchairs, and the list can go on and on.

I get choked up even typing this, but we will have to have a conversation with Levi about how his brother might need to go be with Jesus before we want him to. In our world, this is a reality. One we often stifle and try to ignore, but one that is always present in our thinking.

While we will always teach Levi to embrace and take pride in Malachi’s differences, and while we will show and teach him about unconditional love and kindness, there is such a strong desire in Jake and I to preserve his normal. And if that means trying a surgery and staying in a hospital for several months then it is a gamble we are willing to take.

Let’s pause and watch this amazing video of Malachi playing with his car. Seriously y’all…look at the progress he has made with his fine motor abilities!!

I feel a little like I am in some weird parallel universe. I have these memories of a beautiful new house, a closet full of options, a fridge full of food just steps away, friends, routines, and…control. I remember bath robes that I bought for “breastfeeding after I had the baby”. I can picture the organized baskets of clothing in Levi’s room, and the baby swing washed and ready for him. We had it all planned out. Now I think about that basket of clothes and realize that I won’t be able to put him in most of them as they won’t accommodate his g-tube.

But the longer we are here the more those memories fade and are overtaken by the events of the last few months. When I think about home it feels more like a place I read about once. I can’t even imagine how it is going to feel to get all of us home to Tennessee and back into that world.

Being at the Ronald House has been such an interesting experience. This week the local zoo brought animals for the kids to see and touch. As the event started I looked around at the several families around us and couldn’t help but smile. In a world where we are a minority with Malachi, we were now the majority. No one stared, no one whispered, no one pitied us. It was so oddly refreshing. And everyone used hand sanitizer liberally haha- something we often get made fun of for. But to be fair we are a little crazy with it. We even have a bottle we leave in our church pew each week.

There was also an African drumming band! I wasn’t sure how Malachi would handle the stimulation of the drums, but I thought we would give it a try. His reaction was priceless! Here is a video for you:


Unfortunately we were only able to stay for a few minutes as it did set Malachi into a seizure.

Levi’s great grandmother was able to come for a visit this week, which was such a special experience for the both of them!


I have been thinking long and hard about what devotional thought to share this week, but I am a frantic mess right now…I am writing this entry in the lobby area of the NICU and the alarms just sounded for a baby who coded a few rooms down from Levi. Their rooms start with the same letter, and even though it wasn’t his I am literally shaking and nauseous.

But here is a verse that has been pricking my mind this week. I love the concept of godliness WITH contentment…it takes both for the recipe to work.

1 Timothy 6:6-8 But godliness with contentment is great gain. For we brought nothing into the world, and we can take nothing out of it. But if we have food and clothing, we will be content with that.

Alright, this momma has to go and check on her baby. Much love to you all!

God bless,




The Fiery Furnace

On Tuesday morning Levi went back to the operating room for a three-in-one as we tried to do as much as possible under one anesthesia. The first thing they did was another bronchoscopy to check his airway for any changes. It looks the exact same as the previous bronchoscope that was done 2 weeks ago, which is a good sign that his airway is maintaining the corrected shape.

The second thing they did was a circumcision….let’s all collectively cringe together as you read that one. And enough said about that…

The third and most important surgery that happened on Tuesday was the placement of his g-tube. So let’s all gather round and enter the medical world for just a minute.

Levi’s vocal cords don’t move, so it makes drinking liquids a little complicated. Fortunately he has passed the test that showed whether he was taking liquids down into his lungs (aspirating) so we are ready to continue to proceed with feeds! The team here has been very hesitant to keep attempting feeds based on his work of breathing- they don’t want to stress him out any further. In addition to their hesitancy, every time he is placed back on high flow oxygen all attempts to teach him to eat come to a halt per protocol.

After thinking long and hard about the pros and cons, Jake and I agreed to go ahead and place a g-tube in Levi in an attempt to get him home sooner. We would be here at least another 2 months trying to get him to full feeds by mouth otherwise.

Part of our reasoning: the tube can be a temporary thing. As soon as he starts drinking all of his feeds by bottle we can head to the doctor and pop that sucker out.

Now I am new to feeding tubes, so bear with me as I try to communicate what I have learned so far. I have a wonderful friend who has been guiding me a bit through this process and she will probably have a good laugh hearing my simplistic explanations haha, but here we go…

Levi has a low profile (meaning it doesn’t stick up much off his belly) mini button. Here is a great visual of how feeding tubes work:


I took some pictures of his button to help you understand it a bit more. The large part of this device is what sits on the outside of Levi’s belly. The stem is the part that is in Levi’s tummy. The picture on the left shows what it looks like when they initially put it in. After they put it into the hole in the stomach they fill the balloon on the end with water to keep it anchored in the tummy.

In both of these pictures, the cap is closed. When it is time for Levi to get a feed, you open the cap and clip on an extension that is attached to a bag of formula. Here is a picture of the extension tube.


So now that you have seen what all of the pieces look like, here is a picture of Levi with his new button. The cap is open and the extension is hooked up because he was being fed when I took the picture.


When Levi finishes a feed you can take the extension off, close the cap, and viola! No one would know he is a tubie kid.

When the feed is running, we will be hooked to a small backpack that has a pump inside. We can’t just pour the feeds in quickly as that is not how you and I eat, so instead the pump can be programmed for it to run over a certain amount of time. Ideally we want it to be 30 minutes, which is about the time it would take a typical kid to finish a bottle. Right now Levi’s is running over 2 hours, so we will be working hard to get that time down. He “eats” every three hours, so when it is running over two hours he would only have an hour of not being hooked to the machine. That sentence sounds confusing now that I read it back.

I am sure you are thinking what I was thinking…what if he pulls it out?!? It will have to be replaced quickly, as the hole can heal incredibly fast. They will be teaching us how to replace one but until then we are crossing our fingers and keeping a catheter close by just in case we need to put it in to keep the hole open. For the first six weeks (until we are taught how to change it out) we will have to run him straight to the ER if this happens.

Levi had a little trouble tolerating the pain of his big surgeries and required morphine for several days after. But now that the pain is gone he is tolerating everything very well and is only taking Tylenol every now and then when needed. In the last two days he has been vomiting an unusual amount but we are told that some kids do this after the g-tube surgery.

As you probably remember, one of the other HUGE draws to doing the g-tube was getting the NG tube out of his nose/airway to see if it would help him breathe. While it seems to have helped slightly and changed his stridor a bit, it hasn’t been an amazing transformation…but we are hoping it is just enough of a change in the right direction to think about sending us home soon. He is no longer having any drops in his oxygen or heart rate and he is able to recover (almost all the time) when he gets agitated without needing supplemental oxygen.

Here is a video so you can hear his stridor. There is a sneeze fake-out in there that is pretty cute too:

Tomorrow is a big day as we meet with Levi’s surgeons and NICU doctors in a patient care conference. We will be discussing the next steps in Levi’s care (trach or no trach) and talk about timelines for being discharged home. I almost hesitate posting that because I often get a barrage of texts after big events like these asking how things went, and often I am not ready to share our news with others that quickly. I am very open and public on the blog after several days of processing, but I am still very sensitive to talking about Levi these days. But I promise you will all get the full scoop on next week’s blog!

Levi’s hair has grown so much in the last week! It is a bright blonde with an orange undertone to it. Not quite sure how that will end up, but it is beautiful!


We are also watching his eye color change and making bets on which of us will win- Leah with her blue or Jake with his greenish blue…


We have also gotten some more beautiful smiles this week.

Speaking of smiles, Malachi has done so much better this week with his sadness. I made a conscious effort to be more present when I am with him and make sure we had fun and silly moments together. We danced, played airplane (which was a workout), and played silly imagination games. He was a different kid this week and didn’t cry once!

We also took him to a magic show at the Ronald McDonald House and he was enthralled…more with the other children than the magicians but they don’t need to know that. His laughter will be good for their self esteem.

I am officially living the mommy life. This week I have worn pee, poop, and vomit from both boys. They have managed to “mark” me from the top of my hair to the shoes on my feet, reminding me that I am special to them. And reminding me how thankful I am for more than one pair of jeans.

Many of you have asked about the Ronald House here in Cincinnati so I snapped a few pictures of our room today.

It is essentially a glorified hotel room, which we are very grateful for. There are two beds, a small refrigerator for meds and drinks, and a bathroom. We were able to smuggle in a chair from one of the lobbies (with permission of course) to feed Malachi.

There is also a laundry room on our hall where we can wash our clothing and bedding for a small fee. They do not have housekeepers here, so we are asked to keep the room tidy and organized and we are absolutely not allowed to have food in the rooms. They are very strict with the rules and do room checks often.

Ronald McDonald Houses are amazing. They ask for a small donation for the room each night that you are there ($25) but will not turn you away if you can’t afford that. They provide a meal every day at 12:00 and 6:00 and the food here is actually pretty impressive. There is always a salad, two main dishes to choose from, and a few vegetable sides.

BOTH the Chattanooga and Cincinnati houses have been such a blessing to Jake and I over the last five years. We have spent nearly 160 nights in the Chattanooga location and over 50 nights here in Cincinnati.

I know that all sounded like a commercial, but I just want to help spread awareness for such an amazing facility. If you ever have the chance to volunteer or donate to one, please know that it holds a special place in our hearts as it has allowed us to be near both of our boys at their most vulnerable times. There are change bins on most McDonalds drive through lanes that you can toss some coins into if you ever run find yourselves there. They also accept canned drinks “tabs”.

I have been back and forth with what to share with you all this evening as I process a devotional thought. God has been burning a few things into my heart lately. And let me take a side step and thank you all for your prayers this week, as I know they are partially responsible for the better week I had emotionally.

The last few days I have been really processing the “why”. Not necessarily with our situation, but in many different scenarios. The one that caught my mind this week was the story of Shadrach, Meshach, and Abednego. Many of you already know the story of these three men and the fiery furnace, but if you aren’t familiar I want to challenge you take take a moment and read Daniel 3.

Cliff notes version- the king makes a giant statue and says that everyone must bow down at the cue of the music and worship it. He also says that anyone who doesn’t bow down will be thrown into a fiery furnace. Yikes.

There are three Jews in the group that make the decision to not bow down, as it goes against what God had commanded them. The tattletales of the group (let’s admit it, every group has them) run to the king and report what they had done. The king gives them a second chance, again citing the furnace as their punishment but still they refuse. Their reply to the king always gives me chills…

17 If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. 18 But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”

There are so many things that I love about these verses. Their faith that God can deliver them is so impressive. But what impresses me even more is verse 18…they look at the worst case scenario…God not delivering them…and they choose to stand firm.

I want to have a faith like that. A faith that declares the power of God, regardless of my circumstance. Too often we find ourselves thankful when God gives us what we want and bitter when we feel like He didn’t give us what we think we deserve.

But on to the “why” I mentioned earlier.

I have been analyzing this story in so many new ways. Why did God allow these faith filled men to be thrown into the furnace? Why didn’t he save them from even being tossed in? He could have prevented their near-death experience and still done so in a gloriously awesome way.

And that has led to the bigger question: Who was this situation for? Was it for the three men who were tested to stand in faith against the king, all while knowing the consequence was death? Was it for the king who, after they were delivered unharmed from the fire, realized his sin and changed his ways? Was it for a random man in the crowd that needed to be reminded what it means to stand up for your beliefs?

I am connecting with this story more than normal this week. I feel like Jake, Malachi, Levi, and I are inside of the fiery furnace right now. I am so in awe of the way in which God continues to protect us from the flames that surround us, but I can’t help but wonder who this experience is for. Is it meant to strengthen our faith, as we watch God’s providence unfold? Is it meant to be a grand display of God’s power for one of you in the crowd who may not know Him?  Is it meant for some of you who may know God, but are in a point in your faith where the ways of the world seem safer than standing tall?

This week as I processed this story and our furnace I came to the conclusion that although the temptation to be narcissistic and think that this trial we are in is all about me, maybe I need to be embracing the idea that God is simply using our shaky platform to bring others closer to Him. And if that means we have to hang out in this darn furnace for another few months, or even years so that more people can see the beautiful hand of God then so be it. And I say that through clenched teeth, because every bone in my body aches to be at home with my boys living a hospital and diagnosis free life.

I guess I need to be reminded every now and then that God’s picture is so much bigger than I can even imagine. Instead of making my trials all about me, I need to change my mindset and realize that maybe we are the Shadrach, Meshach, and Abednego…the faith filled men in the fire but still wrapped in the protective arms of God. So instead of being mad about the flames around me, I will choose to be grateful that they don’t sting. And in fact, the very flames that were meant to harm me have burned the ropes that were binding my arms. And I will choose to be grateful that our grand old bonfire has brought attention and glory to God.

In the end, if we are truly followers of God, this life isn’t about us anyway.

Please be in prayer for our big meeting and for my emotions to be able to receive any information that comes our way. I also need to ask that you all start praying for an intense amount of wisdom for Jake and I. Even after we leave the hospital, we will have two very medically fragile kids on our hands and we need a wisdom that can only come from God when making decisions for them. There is so much pressure on Jake and I and sometimes that weight causes me to be weary.

We love you all,


Expecting Manna

Levi had a week of rest as he recovered from last weekend’s setbacks. He had been weaned off of oxygen yet again and was acting like his normal, sweet self. Then Thursday night rolled around and Levi’s blood gas came back high, meaning he was retaining too much carbon dioxide (CO2).

Because of his high CO2 levels he was placed back on high flow oxygen at 4 liters. And we are yet again scratching our heads trying to figure this kid out. This is the first time since the first surgery that he has struggled regulating his blood gas.


I am at the point where all I can do is toss my arms up in the air in exasperation. If Levi continues to retain CO2 he is not safe to bring home. But we don’t have a clue as to why all of the sudden he has started with this change.

Each time Levi is placed back on high flow oxygen we start the cycle of setbacks. High flow makes him produce secretions like a wild man. He gags on those secretions and vomits frequently throughout the day, making it nearly impossible for him to gain weight. The high flow makes him extremely agitated (think of air blowing up your noise intensely 24/7) and his heart rate goes up. Because of his agitation he doesn’t sleep and his work of breathing increases because he is mad.

This is literally the exact same order of events for three weekends in a row. I have even passive aggressively made a poster and taped it up in his room so each new (to Levi) nurse will know to expect this reaction to the high flow.

The only solution to this cycle is weaning him off the high flow, and even then it takes several days for him to get back to normal. Instead during rounds they typically go the opposite direction and increase his high flow (what you would do for a typical child), which essentially increases the source of all these setbacks. I am doing a lot of throwing my hands up in frustration these days as the things they see are helping him are in fact causing him more distress.

He will be having surgery Tuesday morning at 7:45 to place a g-tube and they will be doing another MLB (throat scope) to see if there is any swelling or new issues. Post op we will be slowly introducing his feeds through the new tummy tube and the goal is to be able to take out the feeding tube in his nose (NG) within three days. This is kind of our “last ditch effort” meaning it is the last thing we can try to do to help his airway. The tube takes up space in his throat so we are hoping that removing it will give more room for air to pass.

If this doesn’t work we may have to revisit talk of a trach. I am so discouraged by this as it seems that we would be back at square one, but in reality the trach would be temporary until he grows and his airway gets larger. Had we not come to Cincinnati and attempted the experimental surgery there would have been a 50% chance he would have the trach for life (something we will now be able to avoid), so I am still glad we chose the route that we did. Even though this route is an awfully terrible and long one.

I tried to catch a cute picture of him in his swing, but he was not convinced it was an enjoyable experience. And yes, he is a naturally pale kid…something that is cited often when nurses are expressing their concerns about him.


Levi’s weight is up to 7 pounds 7 ounces and he definitely looks chubbier these days. His personality is also shining through and he loves to be silly. I took this sweet video this week of him playing with his tongue and smiling.

The smiling is a new thing, and oh my goodness I just can’t get enough!

He is also clearly expressing his annoyance to things these days- this week it was aimed towards his giraffe.


He is also absolutely fascinated by my hair. He loves to grab it and play with it, as you can see in this little video:

Malachi continues to be his sweet 5 year old self. He and I are connected in such a special way, and he tends to feel my emotions even when I don’t outwardly show them. Lately he has sensed my higher than normal stress levels and will cry at the drop of a hat. He won’t do it with anyone else but me, so I am trying really hard to not let the stress be felt by him, but apparently I am unsuccessful. He will burst out crying at least 4 times a day and it makes me feel so terrible!

The patented Carroll boy pout:


I have been trying to focus on Malachi more this week and make sure he feels loved and valued as much as baby brother. He has been able to go on several “adventures” this week and we find ways to celebrate him.

Here are some pictures from his birthday ice cream adventure last weekend:

And the celebrating continued with some mid week creme brulee; turns out he is a BIG fan!

My ability to function at 100% for both boys is dwindling by the day, and I am struggling with so much guilt that I can’t be there for each of them at all times. Malachi wants his mommy, present and actively showering him with love like I have always been able to do. And Levi smiles when I enter the room and wants to be held whenever I am there. Both of them need me, and I hourly have to choose one over the other. This just isn’t how parenting is supposed to be.


Jake’s school closed Friday and Monday due to a staggering amount of illness. What a blessing in disguise for the four of us! Facebook has a feature called “On This Day” when it pops up memories from the past that happened on the same date. WHAM those memories have been hitting like a ton of bricks…as I clicked through them this week I was reminded that this is the 3rd year that we will spend Valentine’s Day in an ICU.

Malachi was in the NICU in February 2013 when he was born; I remember very cautiously posting this picture as we were still unsure as to whether or not he was going to live:


Then back to the Pediatric ICU we went the following year when Malachi developed a scary influenza pneumonia in February 2014:


And here we are, February 2018 with our little Levi in the NICU:


Even through all of Malachi’s many, many hospital stays and surgeries I have never been as emotionally fragile as I am with this round with Levi. With Malachi there was always a plan in place and goals/milestones to meet. Yes, we had small and big steps backwards with him but even those somewhat followed the typical NICU route. With Levi there is just a laundry list of unknowns that grows instead of shrinking. I am so incredibly desperate to see a finish line, even if it is still miles away. I just want a glimpse of it so I can be assured that we are heading in the right direction.

When Jake came up this weekend he brought the mail for me to start going through. I haven’t been home since November 16th so the stack had reached monumental proportions.


I sat down on the bed last night and started chipping away at the stack. As I organized the giant pile into smaller piles I could feel so much stress welling up inside of me. I opened up bill after bill, many of which were already past due. We have well surpassed the million dollar mark with Levi’s bills ($1,129,658.75 to be exact) and still don’t have any idea when we will be able to go home. My shoulders grew heavy with the weight this has taken on us in so many ways…

Then I got to the cards. I spent over an hour opening up cards from many of you and read each encouraging note. I was awestruck at the kindness and support that has been sent our way. One of the most heartwarming parts for me was seeing that many of the notes were from people I have never even met! It was a much needed reminder to me that “…your Father knows exactly what you need even before you ask him!” (Matthew 6:8)

I think about the Israelites as they wandered around the wilderness, simply being guided by God. They started to complain about their basic needs not being met and the Lord heard their complaints. He made sure to meet their physical needs each day with manna (bread) in the morning and quail (meat) every night.

Exodus 16 tells us:

Then the Lord said to Moses, “Look, I’m going to rain down food from heaven for you. Each day the people can go out and pick up as much food as they need for that day.

17 So the people of Israel did as they were told. Some gathered a lot, some only a little. 18 But when they measured it out, everyone had just enough. Those who gathered a lot had nothing left over, and those who gathered only a little had enough. Each family had just what it needed.

As I read these verses, the last words seem to stick out to me the most…

“Each family had just what it needed.”

They didn’t have what they needed for weeks, months, years, or 13 weeks in the NICU unit. They had just what they needed for THAT DAY.

I don’t think I have ever been able to relate to the whiny and annoying Israelites as they wandered around the wilderness- that is, until now.

Let me tell you…I am absolutely wandering in a wilderness these days. I am whiny, I am annoyed, and I am wondering why in the world God led us here. Why are we aimlessly wandering? Where is this promised land we have been told so much about? I am THAT annoying Israelite.

But yet God continues to provide…despite all of my annoying attitudes and complaints. Each day I look to Him for my manna and my quail, and each day He makes it rain with His provisions. Even when I don’t deserve even a crumb.

He gives strength to the weary. That Bible verse plays on repeat in my mind as I walk 4 miles a day back and forth from the hospital to spend time with my son. It plays when I race back over to the Ronald House after getting a text that Malachi has had yet another large seizure. It plays when I walk into Levi’s room and find the medical team making more changes in the negative direction. It plays when Malachi wakes up at 3am, ready to play with mommy. It plays as I watch them wheel my son into the operating room for the 7th, 8th, 9th time. Boy, does that verse play on repeat.

He gives strength to the weary.

I don’t know what your week may entail. Maybe you too will be in the group with me as I wander through the wilderness. But let us all CHOOSE to lean on God for His amazing and supernatural provision. Let us be thankful for the strength that He gives, even when we don’t deserve it.

May our faith allow us to continue to look to the heavens and EXPECT our manna and quail, knowing that our needs are being met by a Father who loves us.

May we continually be reminded that it is in our moments of weakness that our faith has an opportunity to grow beyond what we ever thought possible. And may we embrace that growth with open arms and hands.

Please remember Levi this week as we put him back into the hands of the surgeons. Pray that this step will be the one he needs to overcome. And pray that our hearts are ready for the winding ways this week may take us.



On The Night You Were Born

This week took some unexpected turns for our little Levi. Monday morning he had a procedure called a supraglottoplasty. They were able to trim the swollen and floppy area to keep it from covering the airway when he gets upset and breathes in hard. I made this visual for you so you could have an idea of the progression his laryngomalacia has taken since his birth. The open slit is his airway and vocal cords; take note of the area underneath the vocal cords (arytenoids) that grows larger in each photo:


In order to determine the surgery’s success we had to watch and wait to see what would happen when he got angry. The first few days were not an accurate snapshot as the area was still very swollen, but by mid week we were feeling pretty confident that it had done what it should do! PHEW!! We have been letting him get pretty worked up this week and watching his stats to make sure he is able to keep himself in a “safe” place with his oxygen.


Here is an updated video of his stridor post-op…not much change in the noise, but that wasn’t necessarily the goal of the surgery:

On Thursday he was almost entirely healed up and acting like himself again. We went down to the basement of the hospital for an upper GI study- a step needed in order to proceed with his g-tube surgery. In this study they put some barium down his NG tube and watch it on the screen to see what happens. He handled the field trip well and they did not see anything concerning in his GI tract.

Levi also got his first few vaccinations that morning and was noticeably fussy and agitated after. He started throwing up the barium that he had been given earlier that day. He was one angry little boy who did not want to be put down for any reason. He has just about mastered the pout face, just like big brother Malachi:


As we progressed into Friday Levi started to act differently. His heart rate began to rise up to 200 and he was acting very off. As he continued to progress in a negative direction we all started to worry that maybe he was developing an infection or sickness.

By the end of the day he was back on oxygen at 6 liters of high flow and they were discussing re-intubating him to place him back on the ventilator. They also ordered a full sepsis work up to see if he was brewing any bacterial or viral infections, had any urinary tract infections, or anything else of the sort. They even started him on antibiotics, sure that they were going to find something.


But everything came back clear. Part of me is thrilled that everything was clear, but the other part of me is scratching my head with the rest of the team wondering what happened.

Saturday was a very bad day for our little guy as he was poked, prodded, catheterized, scanned, and so much more. Today he has started to act a little more like himself but is still having moments where he is clearly in pain.

Jake was able to come visit this weekend and I don’t even know how to describe the sweet connection between the two of them. Levi is smitten with his daddy, he literally cannot take his eyes off of him when he comes into the room.



Here is a video for you of his intense Jake stares:

We are waiting for his cultures to come back clear before we will stop the antibiotics. They have started him back on his feeds very slowly today with hopes of being able to increase them tomorrow. Once we can do that he will no longer need an IV, which will be wonderful as they have had to stick him 6 times just for IV access this weekend. We are also hoping to start weaning him off of oxygen tomorrow to see if he can tolerate it.

So this little hiccup has left us all very confused and a little unsure where to go from here. Something very clearly has aggravated his system and since we can’t pinpoint it exactly we can’t be reassured that something like this won’t happen when we get him home. We want to make sure he is completely safe before we leave here, and his incident this weekend was most definitely not a safe one. I personally want to point my fingers at the vaccines he received but the doctors are telling me that this was most likely a combination of multiple issues, including the vaccines but not limited to them.

Levi was scheduled to have surgery tomorrow at noon to get a g-tube and have another MLB but we just don’t feel that he is strong enough to withstand surgery right now. We may try again later in the week but we aren’t eager to rush something that his body might not tolerate well.

I am disappointed in our set back. We had even talked about the “D” word (discharge) this week during rounds and we were within a two week time frame for going home!! But now we have more mysteries and confusion.

On to other things…

What a special day today is for our family! Today our little Malachi turns 5 years old. All week long I have been mentally preparing what I wanted to say about our Malachi in this entry. I had come up with beautiful analogies and stories to share- but after this weekend my mind is not functioning like it should. I am so disappointed I won’t be able to coherently write a tribute to my 5 year old warrior like I wanted to, so bear with me in my ramblings.

The night that Malachi was born, our world changed in an instant. Never did we ever predict that God would place our little family on such a unique path; a path full of unimaginable twists and turns.

In the early morning of February 4th, 2013 just past midnight we raced to the operating room. It has always intrigued me what pieces of that night my mind has clung to over the years. I remember the face of the doctor as she said “Give it one more try” as they moved the ultrasound wand over my stomach, looking for his heartbeat which had just been present but now was mysteriously missing. My mind can still picture the clock that my eye caught as we left the room…12:04am. I can still see the ceiling tiles racing over my head as they wheeled me in a sprint to the operating room. I can smell that operating room…a smell that I can only describe as “clean and cold”.

I can remember being in so much pain. crawling desperately over from my hospital bed to the operating room table and following every instruction they yelled as they scrambled to get things ready for surgery. I watched the surgeon pick up the scalpel and eye my stomach, deciding where to cut. I so vividly remember her lifting the scalpel and saying “ready?” to the room, and me responding with a shaky voice “Do what you need to do, but I want you to know I am still awake. I will try my best not to move.”

I woke up that night to an empty belly that had so recently been the safe haven for my sweet Malachi. They brought Jake into the room and I will never forget his body language. He had his hands in his pockets and wouldn’t look at me as he walked past me to come to my side. I asked the question that still makes that lump in my throat come back all these years later…. “Is he alive?” And Jake simply nodded his chin indicating yes, but I knew in my heart that it wasn’t safe to ask any more questions.

Malachi was born without a heartbeat that night. After 15 minutes of CPR, our little 24 week miracle came to life. He weighed 1 pound 12 ounces and we spent the first 4 months of his life in the NICU. His brain hemorrhaged at three days old and we were told that life was going to be different and challenging for our little boy.  We prayed for miracles, begged God for healings, fought with every ounce of our beings to give our little blessing a running start at life.


After Malachi’s birth, someone gave me a very special book titled “On The Night You Were Born” by Nancy Tillman. I got cold chills the first time I read it’s beautiful words, and it has since been dubbed as “Malachi’s story”. It truly sounds like it was written just for him. I have included a few excerpts from this book, which will be bolded and italicized.

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, ‘Life will never be the same.’ Because there had never been anyone like you ever in the world.


Boy, is that first line oh so true. Here is a photo of our sweet boy when he was several weeks old. His little arms were the width of my pinky and his head could fit comfortably in the palm of my hand.

So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name. It sailed through the farmland high on the breeze. Over the ocean and through the trees, until everyone heard it and everyone knew of the one and only ever you.

In this past year this line has taken on new meaning with his viral Facebook post. Jake and I watched in amazement as Malachi’s picture and name spread all over the world like wildfire. Even today his story continues to be shared weekly! I am so humbled by the number of people whose viewpoints about differences may have been changed through Malachi’s story. And I am so honored that we have been able to help the world see that life with a disabled child isn’t a bad thing!! We live a life of contentment with our special boy and feel so blessed to be chosen to raise him.

If you haven’t gotten the chance to watch the video, here is the link:

For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again…

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Every child on this earth is unique and special. Malachi’s uniqueness is visibly highlighted more than others, but what an amazing kid he is.


In the last year we have started to see just how intelligent Malachi really is. He listens and understands so much more than people give him credit for. He has developed his own sign language to communicate with us, and can use his eyes to indicate what he wants.


Malachi loves adventure! He also loves routines and finds comfort in knowing where we are going before we get there. We talk to him throughout the day and always make sure to verbally tell him where we are going and what we are doing so he will have something to look forward to.


Lately he has started to develop an imagination! He likes to pretend that we are dinosaurs, lions, dogs, or monsters and will yell, pretending to be scared. But most of the time his acting skills make him laugh so he ends up out of character quickly.


His memory is impressive and he will verbally act out scenes from his car DVDs before the scene even comes on. He will yell like Super Grover on Sesame Street 30 seconds before Grover does so on the DVD.

Lately he is exploring his emotions and has been fascinated by the concept of “mad”. He will pretend to be angry at me and contort his eyebrows to show me he is angry, which usually makes him laugh hysterically.

But Malachi also loves to hug and cuddle. He gives kisses freely and has a special spot in his heart for his baby brother. He loves to talk about Levi; having them in the same room together again will be such a joy to all of us.


Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.

That night truly was terrifying, life changing, and full of sadness for our family. But it was also the night that a beautiful soul was entrusted into our care and I thank God every day for such an honor.


There is not a doubt in my mind that God is using Malachi in ways that we have yet to even see. So many times people look at him as broken. They see his value diminished by his physical limitations. But God continues to show me what He has told us in scripture:

“For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things He planned for us long ago.” Ephesians 2:10

So happy 5th birthday to our masterpiece. May God continue to unfold your beautiful story, one page at a time, with each page more powerful than the last. And may he continue to use your beautiful soul as a mouthpiece for Him.

I want to end with a poem I wrote for Malachi several years ago:

It was a breathtaking day in heaven as the Father summoned the Son.
He wanted to tell him firsthand about something wonderful He had done.
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth.
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways.
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord.
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind.
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace.
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.


Please, please, please continue to pray for our family. I have been under attack this week in so many ways and I am so worn. Pray that we make some major steps of progress this week and Levi is made whole in a supernatural way.

Much love,




Broken Arrows

As I sit by Levi’s bedside typing this update, two words keep coming to mind in regards to my emotions: weary and fragile. I am feeling so incredibly defeated this week as we continue to process Levi’s complicated road.

This week as I left the hospital I noticed that there was something salty on my lips. I couldn’t figure out what it could have been since I hadn’t eaten anything that day. Then it finally hit me…I had kissed little Levi’s forehead…a forehead that at some point during the night had beaded up with salty sweat as he cried.

Babies are meant to be held, loved, comforted, and consoled. They are supposed to wake up and find a face they know smiling brightly at them and telling them how much they are loved. They are supposed to be picked up and played with, allowing their little brains to grow that much wiser and more aware. They are supposed to be showered generously with kisses.

The fact that I can’t tell you when he got so upset that sweat poured from his brow, or why, or how long he stayed like that before someone went to comfort him just breaks my heart.


An incredibly brief summary of our road so far: Levi was born at 34 weeks and we found out he had congenital bilateral vocal cord paralysis. We were told that he would need a trach and most likely a g-tube and there would be a 50% chance he would require the trach for the rest of his life. We chose to bring him to Cincinnati to try an experimental procedure to avoid a trach, and he is the smallest and youngest to have this done EVER.

Our original plan was that we were going to come to Cincinnati (after spending a month in Chattanooga), have the procedure done, heal within two weeks, conquer feeds, and go home after about a month.

After a few weeks the experimental procedure was finally declared “successful”! We were thrilled and ready to work on feeds and get this beautiful boy home.

Then he started vomiting frequently and we discovered a new tummy issue called pyloric stenosis that required surgery. It has also been declared “successful” and we were back on route to conquering feeds.

Cincinnati Children’s Hospital is a GREAT hospital. We are so impressed by the way things are so efficiently run and the state of the art technology. We have been inpatient in 4 different children’s hospitals between both boys and this one has blown us away. But the larger the hospital the less continuity of care.

Let me explain that a bit…

There are so many different neonatologists, residents, fellows, nurse practitioners, nurses, etc at Cincinnati Childrens. For a typical patient I think this is a good thing…fresh eyes and fresh ideas. But for Levi this has become our nightmare. Levi still has his stridor (and is expected to for several months/years) and each new set of eyes and ears that sees and hears him reacts in a panicky way. I can’t tell you how many times I have heard “Does he always sound like THAT?!?” He even brings in nurses from the hallway that are simply walking by, concerned enough to stop and ask if he is okay and if we need help.

Here is a video from this week:

This is where I come in. Each day I try to sit by his bedside as often as possible to help care for him and teach each new person about Levi. I have put up signs in his room to help them understand him a bit better. I call frequently during the times I am with Malachi and try to keep connected enough that everyone feels comfortable caring for my son, noisy breathing and all.

We have been very blessed to have three amazing “primaries”, who are nurses that have signed up for Levi’s care team. Anytime any of them are on duty they are assigned to Levi and having one of them there brings me so much peace! Those are the days I allow myself to be more present with Malachi, something he also needs from his mommy.


Unfortunately on Thursday night a wrench was thrown into the plans when I got food poisoning from some chicken. Aside from being nauseous from that, I was so incredibly sick to my stomach about the thought of having to stay away from Levi for at least 24 hours (to rule out any other flu/stomach bug). I was even more nervous when I heard that he had a daytime nurse that had never had him before. I just knew in my gut something bad was going to happen.

Then the call came. The new-to-Levi nurse had decided that he was working too hard to breathe and the team decided to not only put him back on oxygen but that he needed to be sedated around the clock because he was “working so hard”. It wasn’t a discussion, but rather a decision that was made by a team that didn’t know him well.

And this is where the “weary and tired” words come in. Sigh.

I am feeling defeated these days, not only as Malachi and Levi’s mommy but as Levi’s advocate. Had I been present and able to show the nurse baseline videos then maybe these steps backwards wouldn’t have happened. Maybe I wouldn’t have had to sit by a sedated child today instead of my full of life sweet little boy who loves to play when mommy visits.


Let’s switch to medical updates.

Levi had another procedure on Tuesday to look at his airway. The good news is the first surgery seems to still be successful. His airway still looked nice and wide, and only had one small area of narrowing in the back. They went ahead and did a balloon dilation to pop open that scar tissue but she said it wasn’t really even bad enough to require it- they just figured they would do that while they were in there.

Here is a visual for you from before the dilation and after:


The bad news is that she discovered a brand new airway issue that Levi has recently developed called laryngomalacia. It is another congenital issue that usually appears by 5 weeks old (Levi’s corrected age right now). This is a very common issue in children and is actually the number 1 cause of stridor in kids. Most times you can leave it alone and it will self resolve within the first two years. But unfortunately Levi’s is already a “moderate to severe” case and on top of his paralyzed vocal cords issue something has to be done.


Tomorrow morning at 8:15 Levi will be having yet another procedure called a supraglottoplasty. They will be trimming part of his epiglottis so it cant flop over onto his airway and block it. This won’t completely eliminate the stridor but it may lessen it a bit. It will also keep him from completely collapsing over his airway when he gets super agitated.

But unfortunately it doesn’t stop there.

We are also told that this procedure will set him back even more with his oral feeds. He did go down on Friday for the much anticipated swallow study and he wouldn’t drink the barium from the bottle. I don’t blame him- most people say it tastes like chalk! They then mixed in a little formula but by then he was suspicious and did not want anything to do with the bottle.

They are telling me that it will be several months before Levi will be able to get to full feeds by bottle, and at least 4-6 weeks before they would do another swallow study. Jake and I have made the decision to put a g-tube in Levi so we can get him home and thriving. We will work on feeds from there with the goal being to get the g-tube out within a year.

I spoke with the surgeon this evening and they are planning to schedule the surgery for this week. So two big surgeries for little Levi this week, but hoping to see some major changes in him. Maybe even major enough that ALL of the personnel working with Levi will feel more comfortable with caring for him.

Jake ended up with a head cold this week and wasn’t able to make the trip up to visit us this weekend. I have been trying to FaceTime with him and the boys as much as possible and snapped these pictures of Levi when he was listening to daddy on the phone. The quality is poor but look at that sweet, excited face!

This week I had something very strange happen in my spiritual life; it was the first time it had ever happened and the devil almost got away with it.

In the New Testament we read about the temptation of Jesus in the desert. It says that after 40 days and nights of fasting he was hungry, and it was THEN that the devil came to tempt Jesus.

This fact alone is a profound reminder to me the devil is one smart character and will wait until our moments of weakness to strike. He waited until Christ was feeling the pain of hunger to come and tempt him with food.

But that isn’t the part of the story that gets me…

One of the most fascinating things about the temptation of Christ in the desert is the way in which the devil chose to try and tempt Jesus. He used scripture!

This week I had my desert moment. All week long I couldn’t get this scripture out of my mind:

Psalm 127:3-5

Children are a gift from the Lord;
    they are a reward from him.
Children born to a young man
    are like arrows in a warrior’s hands.
How joyful is the man whose quiver is full of them!
    He will not be put to shame when he confronts his accusers at the city gates.

A quick note: a “quiver” is a container that an archer wears on his back to store his arrows.

Before I go on I need to warn you that you are about to see the dark side of my mind- something I often try to drown out and not focus on. And I am actually embarrassed to share this with you. But I feel so strongly that my moments of weakness can serve as encouragement in your Christian walk.

Chunks of these verses played over and over again in my mind and I finally had a chance to pull it up and read it. As I read the verses I scoffed to myself at the words. I caught myself saying how is THIS a ‘reward’ from the Lord?

I have spent the last five years watching not just one child but now TWO suffer more than any child should have to. I have held the hands of two frightened and traumatized little boys as they have more and more tests, blood draws, IVs, procedures. I have told them that everything will be okay, when the truth is I too am dreading what is about to happen to them.

How is this a reward? To watch so much suffering and see so much pain and not be able to take it from them?

And then as I continued to read I came to the part that said “How joyful is the man whose quiver is full of them.”

As I read that I couldn’t help but picture that family Jake and I always imagined we would have. Those four boys, all close in age. Those four healthy, crazy boys who were going to make our quiver full. Daughter-in-laws. Grandkids. A legacy.

I have typed this next paragraph a few times because it sounds so terrible each time I read it aloud. But I guess I will keep going with my honesty here…as I thought about our quiver I couldn’t help but wonder why the arrows that God placed in it were so damaged. Why were they so broken? Why aren’t our arrows like all the other warrior’s arrows, ready to be sent out flying into the world?

I dwelt on this concept for a few days, mourning our sad, roomy, and less than perfect quiver. And then I realized that Satan had used his crafty technique yet again and tested me with the words of God and I immediately felt foolish.

With my new, corrected lenses I started to look again at the scripture and apply it in my life. And I came to the realization that it is not my job to evaluate the arrows in my quiver and ask why. It is not my job to question why there are only two arrows in there. It is not my job to determine whether those arrows are ready to fly and pierce.

But it IS my job to protect the arrows in my quiver and to wear them proudly on my back. It IS my job to keep them safely tucked into the quiver until God decides they are ready to be sent out into the world. It IS my job to talk to you about these precious, beautifully unique arrows and allow the power of their testimonies to do the piercing.

So my focus this week is admiring and reveling in the uniqueness of my arrows. What some may see as “broken” I will choose to see as “still being crafted to perfection”.

Please remember our family in your prayers this week as we deal with some big days ahead. Pray that Levi has a week of continuity in his care and that the nurses assigned to him are all comfortable and familiar enough to be his advocate. Please continue to pray for wisdom as Jake and I make life altering decisions for both of our boys.

Next week is Malachi’s 5th birthday, so let me forewarn you to expect some emotional ramblings on the blog about his beautiful little soul. It is inevitable.

God bless,









Thankful For the Fleas

This week will mark our 10th week in the NICU with Levi. Just for a little bit of perspective, Malachi was born at 24 weeks and had a 16 week stay. Little Levi was born at 34 weeks and is creeping up on big brother’s record. At the rate we are moving, we are expecting to be here several more weeks.


After Levi’s last throat procedure, the ENT surgeon gushed about how good his airway looked. She explained that even though he still had a stridor (noisy breathing) and some retractions (his belly pulls in when he breathes) that he looked exactly how they expected him to. She said from an airway standpoint he was cleared to go home and simply work on growing.


Obviously we couldn’t go home yet from a NICU view because little Levi still needs to learn how to eat, gain some weight, and be completely stable. He had never been given the chance to take a bottle because it wasn’t safe to have him try to breath and eat at the same time.

As we focus on reaching these goals we are hitting a little bit of resistance with the NICU as they are all extremely concerned about his airway; they are uncomfortable with feeding him based on his breathing status (the stridor and retractions). So we seem to now be in a washing machine cycle and not really making any progress.


This has been an emotionally exhausting week for me as I try to convince each team working with Levi that he has been deemed “safe” by the ENT surgeons as well as formal tests (like his FEES from last week). I have explained to them that if they wait to progress until he is no longer stridoring that we will be here for months, and if that is their intention then we need to discuss feeding tube options. Being in the NICU an unnecessary amount of time while we wait for him to grow is not in Levi’s best interest. Period.

At the request of the NICU, the ENT surgeons are going to do another bronchoscopy procedure on Tuesday to take another look at the airway. I have requested a patient care conference so the surgeons can tell the NICU team exactly how they feel about what they see.

BUT let me focus on the progress we HAVE made this week…

Levi has been allowed to try the bottle with therapists throughout the week with very small amounts of milk (5mls which equals 1 teaspoon). He is catching on very quickly and his trial amount was bumped up to 10mls yesterday and tonight he blew me away by taking all 10mls (bottle fed by mommy) in under 10 minutes. He was ferociously wanting more but we aren’t allowed to yet. I am hoping tomorrow will be just as successful so the team may be able to do a swallow study before Tuesday’s procedure.

The switch to formula and change in reflux meds seems to have been the missing piece and I am so happy to tell you that Levi is throwing up only 1-2 times a day! And since he has been holding his feeds down he is gaining some serious weight. He is up to 6 pounds 9 ounces, which is two pounds more than his birth weight.


I have officially stopped pumping and am now trying to decide where to donate my Ohio milk. Last night they told me I have 14,000 mls (just under 500 ounces) in storage! Our Tennessee stockpile is nearly twice that amount! But I can’t be upset about it; I am just happy we found something that works for little Levi’s belly. There are several online sites where I can find people that need donated milk, and I can also possibly donate it to the NICU but will have to go through many steps (interviews, physicals, bloodwork, etc) before doing so.

He did throw a bit of a curveball at us this week as he is starting to have more bradycardia episodes, which we call bradys. This means that randomly when Levi is falling asleep or sound asleep his heart rate will drop below 100. What is odd about Levi’s spells is that he will dip down and come right back up and repeat this cycle several times in just a few minutes. His oxygen level doesn’t change, just his heart rate. And he recovers completely on his own without a nurse having to wake him up or stimulate him. I am posting this video below in the off chance that any nurse friends reading this have any ideas:

I am hoping it is something easy like silent reflux and maybe us thickening his food will help eliminate these bradys. They will not discharge us as long as this continues to happen.

Other than that nonsense, he is having a great week. Jake’s school was closed every day this week due to the winter weather which was such a blessing! I had lined up babysitters for Malachi expecting that he would have to drive back to Tennessee so we took the opportunity to go and visit Levi together, something we have not been able to do since Christmas. Our first visit together this week Levi was sound asleep and we hovered over him like weirdos until he woke up. He looked at me, then looked at Jake, then back at me and back at Jake and then grinned the biggest smile we have ever seen. Talk about a heart melting moment.


Side note- this was so special to us on many levels. Malachi is legally blind and has a hard time seeing and focusing on things. So to have Levi look us directly in the eye and study our faces is a first for us as parents. It makes me want to cry just thinking about it!

Thank you to the special people this week that volunteered their time to help watch Malachi and make these moments happen. Here is a sweet video of Levi studying Jake’s face:

We were also both able to be there for his first big boy bath! When his butt hit the warm water, the absolute funniest look came over his face as he processed. But he did end up loving it! Not a single whine or tear.


Levi loves to play games, especially with his feet. He smiles with his eyes often, but has recently started smiling more with his sweet little mouth. He pierces us with his looks and watches our every movement. We found a Target and bought him a few crinkly toys to try to break up the monotony in his day. We have also strapped his crib down with every noisy, bright, and exciting mobile and crib toy we can find.


Jake is officially back in Tennessee for the week and we have flown my mother up to sit with Malachi on and off throughout the day. Malachi has been extra goofy these days and makes himself laugh often. We try to Facetime with Levi every other day so they can get some brother time.

So 68 days have gone by…68 very long and daunting days. That is approximately 1,632 hours since we welcomed this sweet baby boy into the world.


As we prepped for Levi’s birth, Jake and I continually talked about how wonderful this time around would be. We talked about how refreshing it would be to have “typical” moments and “typical” baby issues. We talked about how weird it would feel to drive our baby home just days after his birth. I talked about how wonderful it would feel to meet my child the same day he was born…to lay eyes on him for the first time in person instead of on a camera. We talked about how we would each take a child and just live in survival mode for the first few weeks until I could get back to physically being allowed to take care of Malachi.

We did not talk about flying our newborn several states away. We did not talk about paralyzed vocal cords, experimental surgeries, pyloric stenosis, vomiting, bradys, and Ronald McDonald Houses. We didn’t come up with a plan B because we just so desperately wanted our plan A to work like it was supposed to.

I find myself battling some pretty severe emotions these days. It seems that every thought that passes through my brain is dripping with negativity and frustration. Every being of me wants to spend the next several minutes complaining to you about my current situation.

But I just can’t bring myself to do that with a clear conscience.

I started thinking about the concept of complaining…why we do it…what purpose it serves. The more I thought about it the more I realized that it can be a slippery slope when you are a Christian. It can even easily trick us into thinking that this life is all about us.

While sitting here and telling you how frustrating life is right now may make me feel better and solicit prayers, in the end it ultimately does not bring glory to God. It actually steals the spotlight from God and places it on my worries and woes.

The Bible says in Philippians 4:8 “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy–think about such things.”

Paul also lets us in on a little secret to happiness in Philippians when he says: “I have learned in whatever situation I am to be content.”

Here is something you may not know about me…I am a VERY cynical person. And I am an extremely cautious person when it comes to choosing people I admire. Not super proud of that fact, but alas there you have it.

One of the people that has impacted my faith greatly through her testimony is Corrie Ten Boom. If you have not read Corrie’s book “The Hiding Place” I strongly recommend it. There are so many moments in that book that have challenged me in my walk with God.

She says: “This is what the past is for! Every experience God gives us, every person he puts in our lives is the perfect preparation for the future that only He can see.”

I want to end this journal with a story from her book about finding things to be thankful for, even in the darkest of circumstances. It is something I needed to be reminded of this evening, and I am hoping that it will speak to you as well. Corrie and her sister had been taken to a concentration camp after it was discovered they had been hiding Jews in their family’s shop. Here is an excerpt:

It grew harder and harder. Even within these four walls there was too much misery, too much seemingly pointless suffering. Every day something else failed to make sense, something else grew too heavy.

Then as our eyes adjusted to the gloom we saw that there were no individual beds at all, but great square tiers stacked three high, and wedged side by side and end to end with only an occasional narrow aisle slicing through.

We followed our guide single file–the aisle was not wide enough for two–fighting back the claustrophobia of these platforms rising everywhere above us…At last she pointed to a second tier in the center of a large block.

To reach it, we had to stand on the bottom level, haul ourselves up, and then crawl across three other straw-covered platforms to reach the one that we would share with–how many?

The deck above us was too close to let us sit up. We lay back, struggling against the nausea that swept over us from the reeking straw…Suddenly I sat up, striking my head on the cross-slats above. Something had pinched my leg.

‘Fleas!’ I cried. ‘Betsie, the place is swarming with them!’

We scrambled across the intervening platforms, heads low to avoid another bump, dropped down to the aisle and hedged our way to a patch of light.

‘Here! And here another one!’ I wailed. ‘Betsie, how can we live in such a place!’

‘Show us. Show us how.’ It was said so matter of factly it took me a second to realize she was praying. More and more the distinction between prayer and the rest of life seemed to be vanishing for Betsie.

‘Corrie!’ she said excitedly. ‘He’s given us the answer! Before we asked, as He always does! In the Bible this morning. Where was it? Read that part again!’

I glanced down the long dim aisle to make sure no guard was in sight, then drew the Bible from its pouch. ‘It was in First Thessalonians,’ I said. We were on our third complete reading of the New Testament since leaving Scheveningen.

In the feeble light I turned the pages. ‘Here it is: “Comfort the frightened, help the weak, be patient with everyone. See that none of you repays evil for evil, but always seek to do good to one another and to all…'” It seemed written expressly to Ravensbruck.

‘Go on,’ said Betsie. ‘That wasn’t all.’

‘Oh yes:’…“Rejoice always, pray constantly, give thanks in all circumstances; for this is the will of God in Christ Jesus.'”

‘That’s it, Corrie! That’s His answer. “Give thanks in all circumstances!” That’s what we can do. We can start right now to thank God for every single thing about this new barracks!’ I stared at her; then around me at the dark, foul-aired room.

‘Such as?’ I said.

‘Such as being assigned here together.’

I bit my lip. ‘Oh yes, Lord Jesus!’

‘Such as what you’re holding in your hands.’ I looked down at the Bible.

‘Yes! Thank You, dear Lord, that there was no inspection when we entered here! Thank You for all these women, here in this room, who will meet You in these pages.’

‘Yes,’ said Betsie, ‘Thank You for the very crowding here. Since we’re packed so close, that many more will hear!’ She looked at me expectantly. ‘Corrie!’ she prodded.

‘Oh, all right. Thank You for the jammed, crammed, stuffed, packed suffocating crowds.’

‘Thank You,’ Betsie went on serenely, ‘for the fleas and for–‘

The fleas! This was too much. ‘Betsie, there’s no way even God can make me grateful for a flea.’

‘Give thanks in all circumstances,’ she quoted. It doesn’t say, ‘in pleasant circumstances.’ Fleas are part of this place where God has put us.

And so we stood between tiers of bunks and gave thanks for fleas. But this time I was sure Betsie was wrong.

While the Ten Boom sisters were in this barracks they held church services with the other women. The were awestruck that the guards never caught on and many women came to know Christ through these services. Here is one more excerpt from her book:

One evening I got back to the barracks late from a wood-gathering foray outside the walls. A light snow lay on the ground and it was hard to find the sticks and twigs with which a small stove was kept going in each room. Betsie was waiting for me, as always, so that we could wait through the food line together. Her eyes were twinkling.

‘You’re looking extraordinarily pleased with yourself,’ I told her.

‘You know, we’ve never understood why we had so much freedom in the big room,’ she said. ‘Well–I’ve found out.’

That afternoon, she said, there’d been confusion in her knitting group about sock sizes and they’d asked the supervisor to come and settle it.

But she wouldn’t. She wouldn’t step through the door and neither would the guards. And you know why?”

Betsie could not keep the triumph from her voice: ‘Because of the fleas! That’s what she said, “That place is crawling with fleas!'”

My mind rushed back to our first hour in this place. I remembered Betsie’s bowed head, remembered her thanks to God for creatures I could see no use for.

Even as I read these words that I have read dozens of times, I can’t help but get covered in chills. The faith of these women in a circumstance massively worse than my own is startlingly amazing to see. So this week, I am challenging myself to thank God for the many “fleas” in my day.

Please pray for a good report from Levi’s bronchoscopy and huge gains with his feeds. Please also prat that he stops having brady episodes and regulates his heart rate. Pray that we can leap over the many hurdles that are currently in our path. And pray that my faith is strengthened during the many times I am under attack throughout the week.

God bless,



May The Lord Give You Peace

Levi is 2 months old today! What a journey these two months have been.


This week was a mixture of highs and lows. I have been overcome with joy some days and heartbroken others. We have made baby steps of progress yet somehow managed to take big leaps backwards. Oh the emotions a NICU road can bring.

Let’s talk about some of the highs. Levi had a special test called a FEES (Fiberoptic Endoscopic Evaluation of Swallowing) done this week. They send a camera down his nose and watch as he tries to swallow some food.

So rewind for a second…one of the big concerns we had when we considered doing this experimental surgery was aspiration. If they widen the vocal cord gap there is a chance that fluid could go into his lungs (aspiration). If that happened he would require a feeding tube surgery to keep his airways safe.

So back to the study. Levi passed with no aspiration! He is able to manage small amounts of liquid and his secretions very well. The next big study will be a swallow study where they will see on x-ray how he does with larger volumes of fluid. So we can’t mark the g-tube surgery off the list quite yet but passing the FEES was a great sign.

After the test showed he could handle small amounts of liquid we were able to give him a try at bottle feeding. He is very intrigued by the bottle and interested in the process. He is consistently taking about 5 mls (1 teaspoon) by bottle each time we try. Once he makes it to 10mls we will be able to do the swallow study.


Feedings are the final step keeping us here! So now on to a low…

Levi continues to throw up his feeds more frequently than we would like. Because of this he is not gaining weight, which is another thing that would keep us here. We have been trying subtle changes throughout the week with no success. Two days ago I asked them to put him on a stronger reflux med and we are also trying him on a mild formula to rule out any milk protein issues. We are desperately hoping these changes will help.


I walked into the unit this week and passed Levi in the hallway. Yes, you read that sentence right! They decided he was stable enough to move to an overflow unit on another floor! He was taken up to his own private room and I was working with social work to allow Malachi to come in with me during the week, thus eliminating my need for childcare. I felt like we had won the lottery!

Levi also got a big boy bed.


And now on to the next (and biggest) low…

He got demoted again back down to the regular NICU unit after an episode today. He got very upset and they said his lips turned blue and he went pale. We will be talking with his ENT surgeon about how to handle this after we go home as it sounds like we will need to have the option for some supplemental oxygen for times when he just can’t calm down while we wait on his airway to grow a little wider. Levi has a BIG temper- when he is in any sort of pain he panics and gets incredibly mad. If you don’t address it quickly he gets past the point of no return and will start retracting pretty hard when he breathes.

I felt like we were doing a walk of shame today as we transported him back down to the NICU. And my heart ached oh so much as we walked away from the “step before home” pod he was in.

It is more and more unlikely that we will be home anytime soon. We still have some big hurdles to jump.

Thankfully they did manage to get him into a private room in the unit; he is just so alert and aware that he never could seem to rest in the pod with 5 other babies.


He is starting to get eyelashes!

Levi is one funny kid. He watches everyone so intently. I can’t even count the number of times in a day that a staff members comments on how aware and alert he is. He loves to meet new people and has even been tossing out a few smiles this week. He gave me one tonight that just about did me in.

This was my first week without Jake and while I managed to take care of both boy’s needs (with the help of my Tennessee friend), it was so much harder emotionally than I ever expected it to be.

If you are new to the blog let me take a minute to tell you a little about our oldest son Malachi. He was born at 24 weeks without a heartbeat and has severe brain damage as a result. He is truly a miracle child and will bless you in so many special ways simply by seeing him smile, but his life does have many challenges. He is physically affected with severe cerebral palsy and does not verbally communicate but has his own signs for “yes”, “no”, and “more”. He is also very good at expressing himself using his body language.


Believe it or not, Malachi will be turning 5 years old 3 weeks from today!

Malachi has severe and uncontrolled epilepsy and has around 6-8 seizures each day. The interesting thing with him is that they are triggered by pain or discomfort, mainly tummy pain. So if he has a burp in his belly he can’t get it out himself and will have a seizure from the pressure. We still have to burp him like a baby. If we don’t get the burp out right away he will continue to have seizures until we do- and boy is he a hard burp. I can count on one hand the people who have successfully learned to burp Malachi to help prevent him from continuing to seize.

Malachi’s seizures range from small to large and the longer you leave a burp unattended the larger the seizures become. So Jake or I always have to be close by to make sure we can attend to him before it turns into a large seizure event.

Everything was working out great at the start of the week. I would leave Malachi with my friend for 1.5-2.5 hours at a time while visiting Levi then run back to the Ronald McDonald House to feed and burp Malachi. I would pump by Levi’s bedside when he went to sleep and hold him when he was awake.

We found a nice rhythm for each day but then one night the plan unraveled. Levi was inconsolably crying and I just couldn’t leave him in that state. So I stayed but it was 9pm- time for Malachi’s vital seizure and tummy medications, feeding, and burping. I rocked little Levi, sang to him, gave him his pacifier, but nothing worked. 9:30 came and I had to make the decision to leave Levi and go medicate Malachi. I had to choose one sons needs over the others.

And I felt like a horrible, horrible mother as I went down the elevator. I pulled up Levi’s NICU camera down in the hospital lobby, hoping to find that he had self soothed and drifted off to sleep but instead I saw him screaming and no one coming in to help him. I started uncontrollably crying as I debated going back up to rescue him. But Malachi’s need for seizure medications is a life or death thing and so back to the Ronald room I went, sick to my stomach and feeling like a failure.

On the walk back to the room I said to myself “It will all get better when I get them both home and in the same room.” And then I started processing this and realized that while it may be better to have them in close proximity to each other, our lives are going to be insanely crazy when we get home.

I started to do the math…Malachi has so many specialist appointments…orthopedic, neurology, neurosurgery, eyes, teeth, GI, AFO fittings, hippotherapy, occupational therapy, physical therapy, feeding therapy…and the list goes on.

Now with little Levi we will be adding in early intervention, physical therapy, occupational therapy, GI, ENT, Neurology, and the list is continuing to grow.

I know every mom that adds one to the mix has to process how to multiply her love and time to flood all the children with it. I am just praying that God gives me the strength, endurance, and grace to be able to manage such a task.

Isaiah 40:29-31 “He gives strength to the weary and increases the power of the weak. But those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint.”

This verse has been running through my mind all week.

While we have only gotten to know Levi for nearly 9 weeks, I can already tell you that these boys are alike and different in so many ways. They are both incredibly nosy kids driven by any audible stimulation in the room. In fact, as I am typing this blog now by Levi’s bedside I can see his half asleep eyes peeking trying to find the source of the click clack typing. I see so many similarities in their personalities.

But they are also very, very different. And my prayers for them are also so different.

Nearly 5 years ago, when Malachi was born, I so vividly remember watching the ceiling tiles pass over my head as we raced to the operating room. Malachi’s heart had stopped inside of me. I thought to myself “I need to pray” and as my already frantic mind tried to form a prayer, the verse from Job kept popping into my mouth “The Lord giveth and the Lord taketh away. Blessed be the name of the Lord.”

I knew that there was a very high chance that I would never get to meet my son on this side of Heaven. While my heart was breaking at this very thought, I wanted to verbalize to God that regardless of the outcome I would glorify His name. God spared my son that night, and has thereby given me a bigger blessing than I could ever have imagined in Malachi. We don’t know how long our time on earth with Malachi will be- something we have to choose not to focus on- but we continue to speak that verse over his life and his health. In all situations, whether good or bad, blessed be the name of the Lord.

The night Levi was born I was fighting very hard against all of the flashbacks I was having. I saw those ceiling tiles again and grew sick to my stomach, overwhelmed with fear as I thought back to the night of Malachi’s birth. I shut my eyes tight as I tried to formulate a prayer. Instantly I thought of the words from Job, but in my heart they just didn’t seem right. As I continued to try to overcome that fear with the word of God my mouth started reciting a verse from Numbers:

Numbers 6:24-26 “The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.”

As those words came out of my mouth I was instantly comforted by God through them. I began to pray over Levi’s life, that God would shine His face on Him. I prayed that God would “turn His face” towards Levi and that Levi would reflect God to those he comes in contact with.


As I reflect back onto that verse, I knew deep down in my heart a few months ago that it was to be “Levi’s”.

Jake and I started building a house for Malachi’s needs almost exactly one year ago. As they prepared to lay the foundation we decided that we would pray and choose a verse for each room of the house. We didn’t know about Levi yet, but knew that we always wanted to try for another child. As I prayed over the children’s bedrooms this verse was laid on my heart, and we buried it under each of their rooms.


As we decorated our new house I felt led to cover our walls in scripture. I just feel so strongly that we are to hide God’s word in our hearts, and I want my boys to be exposed to it daily. I went to Hobby Lobby and the very first sign I bought for the walls had this very verse on it.

We moved into our new home on October 1st and I had Jake put it up in the hallway by the boy’s rooms; each night as I carried Malachi to bed I passed this verse. And each night my eyes and heart were drawn to it in a way I can’t describe. I truly felt the Lord tugging my heart towards that scripture each and every night before Levi’s birth.

Over these last few weeks I have watched Levi grow, and there is just something so different and unique about him. His eyes are uncharacteristically piercing and his demeanor is so unusual and special. I know every momma says this, but there is truly something so special about him.


As I look at his sweet face and I think back to my prayer over him I get a flutter in my heart…I know that the Lord has turned His face towards Levi. Already his life story reflects God and His unlimited power and guidance. God is writing a powerful testimony for him, and I cannot wait to see how God will continue to use him in mighty ways.

Each night when I have to walk away from Levi- a moment I have come to dread- I find myself reciting this verse again over him. Praying that God will give him peace.

I filmed this video tonight of Levi. We spend a lot of time singing praise and worship songs, and this one is hands down his favorite. His little eyes are so expressive as he listens:

So not really a devotional for you all tonight, but a reminder to me that God is still writing a beautiful and powerful testimony for my son. And I need to choose to give Him all the time He needs to make each chapter point others towards Him.

Please continue to pray for Levi and that his tummy issues are quickly resolved. Pray that God sends him just the right nurses to keep him calm and comfortable and that God sends the right doctors to make the right decisions regarding his care.

Selfishly, pray for me as I battle daily with discouragement and mommy guilt. Pray that God gives me the ability to meet the needs of both of my children each day. And pray for the protection and health of all four of us as we navigate a very germy world right now.

And pray for PROGRESS! Not lateral movement, but forward movement this week for Levi’s health.

Thank you for checking in, and I am hoping to be able to bring a great report next Sunday.

God bless,