Be Brave Little One

I know how eager many of you are to hear about today’s procedure so I thought I would give you a very brief update.

Levi went to the operating room today for a follow up bronchoscopy to see how the airway was healing. Everything looked like it was healing as it should and he only had a small amount of granulation tissue (an ulcer on the healing surface of a wound) on his vocal cords; we are assuming it is from where the ventilator tube was rubbing.

They were also able to extubate him (take him off of the ventilator) down in the operating room and I was even able to snap a few pictures of him before they taped the nasal cannula on.

He is on high flow oxygen right now at 4 liters and we will be working on weaning him down over the next week or so. When he gets to 2 liters or less we can start thinking about trying to introduce the bottle.


Jake and I were absolutely thrilled to hear that everything looks as it should, but a little disappointed when we saw him post procedure today and still heard the stridor. We were assuming that the noisy breathing would be completely gone when the tube came out.


He is also breathing very aggressively and retracting his little stomach pretty hard when he breathes in. They are telling us that it is normal to have some noisy breathing since the airway is swollen from all the activity and the swelling should go down over the next few days. Here is a video of his breathing post-op:

We still don’t have an idea yet if we can deem this surgery “successful” but stage one is complete! He will go back to the operating room one week from today so they can monitor the progress and by then we will have a better idea of whether or not a trach is still needed.

Levi is so much happier off the ventilator! And we are thrilled to be able to hold him again without the constant fear of the vent coming out. Levi is so incredibly strong and the last 10 days have been so rough on him…he has done everything in his power to get the tube out. Last night I got a call at 2am that he successfully popped the ventilator tube out of his throat and I was devastated, worrying that it was going to jeopardize his surgery site. We are very grateful that it didn’t!

Today when the nurses weren’t looking he yanked the oxygen prongs out of his nose and pulled the tubing off his face. He is not a fan of oxygen support it seems. He was a ticking time bomb with the ventilator in his nose so we were always on edge worrying he was going to get it out. Simply having that mechanism removed is easing my mommy heart tremendously as it gives me less to worry about (as well as less 2am phone calls…those are the absolute worst).


I will do a big update on Sunday evening and ramble on like I usually do haha! Christmas Day updates and such. But I didn’t want to leave you all hanging in the meantime.

And as a little teaser, here is a video of Malachi’s favorite toy today…a grocery bag full of grocery bags…yep…a car full of Christmas gifts, but this is the current winner:

As far as specific prayers needs right now, Levi needs prayer for strength and endurance. His body gets so tired when it works so hard to breathe and we need for him to have some sudden bursts of strength to get over this hump. Levi also needs prayers for the airway to stay open and not start to close in on itself again. We also are requesting prayers for his ability to eat when we get the green light. If the surgery was successful, eating will be one of the bigger hurdles keeping us in the hospital.

And please continue to remember Jake and Malachi in your prayers as they are still struggling with getting back to 100%.

Thank you for your prayers and I am hoping to bring you an awesome and stridor free update on Sunday.

God bless,


The Year of the Lord’s Favor

“I just hope we are home by Christmas!”

I remember saying this sentence to people when Levi was in the NICU in Chattanooga and doctors were thinking his throat issues were simply from his rough intubation at birth. But here we are, Christmas Eve, and I am writing this entry from a hotel two states away with Levi nestled safely with strangers down the road.

I know many times I write the blog doing my very best to convey all positive emotions but I hope I never disillusion you into thinking that this journey is easy for our family. There are many times in our day that the frustrations and grief from our situation takes over bringing me to tears.

This week Jake made the mistake of commenting “Everyone else is falling apart and I am the only healthy one left.” I can almost picture the devil tapping his fingers together and saying “mwahaha challenge accepted” and hitting Jake with a nasty cold. At the same time, Malachi woke up with an extremely high temperature of 103 and what we thought was a sore throat.

One of the challenges of being a special needs parent is trying to isolate what we are dealing with when Malachi gets sick. He can’t verbally tell us, and he can’t physically show us like pulling at his ears for an ear infection. So we simply have to watch and wait, always hoping that the sickness will stay away from his lungs. Pneumonia is one of the biggest fatal challenges kids like Malachi face. The last time he had pneumonia we spent 2 weeks in the ICU.

The part of Malachi’s brain that controls temperature regulation is extremely damaged so fevers are a little dangerous for him too. By the end of the day his fever broke but his temperature continued to drop rapidly down to below 96. His body was warm but his extremities were ice cold. We usually have to go from stripped down and cool washcloths to sweatshirts and winter hats all in the same day. He has stayed fever and sickness free since that first day but his temperature is still wonky so we are watching him closely. We still can’t pinpoint exactly what the issue is.

With both Jake and Malachi feeling off we decided it was a good decision for us all to stay away from Levi and see where these sicknesses progressed. The last thing we want to do is bring something into the unit. The concept seemed good but by lunchtime I was so anxious about him thinking we had abandoned him and could feel the mommy emotions well up inside of me. That was a looooong 24 hours. Thankfully the NICU has webcams above each of the beds so I can peek in on him anytime throughout the day!

Jake is still down for the count so I make sure to shower and put on clean clothes before heading over to visit Levi. I am also obsessively Clorox wiping down the surfaces in our hotel room, secretly watching Jake to see what he touches so I can sanitize it when he isn’t looking. The unit will close to children on Wednesday so I am hoping Jake will be well enough for us to spend time together as a family of four before then.



I did get the chance to hold Levi for 2.5 hours on Friday and it was magical.

Tomorrow marks one week post op and on Wednesday Levi will go back to the operating room to see how his throat has healed. If we get the green light, the tube will be removed and we will start weaning his oxygen. The more we wean the better the snapshot of success will be. To say that we are excited, anxious, and incredibly hopeful would be an understatement! I get butterflies just thinking about the coming week.

Here is a video of the silent boy; it is still so eerie to not be able to hear him make any noises. The silence is pitiful.


Levi had a field trip yesterday as he managed to work his feeding tube out of his nose. He has had an NG tube (Nasogastric= goes through his nose and into his stomach). With his NG tube he has been vomiting several times a day so they decided it needed to go down a little deeper, bypassing his stomach. They ended up changing to an NJ tube (Nasojejunal= goes through the nose and into his jejunum/second portion of the small intestine). He has been doing better on this type of tube and is vomiting less.


In order to make sure the tube is in the right place they had to take him to the Fluorolab where they can take a moving x-ray while they place it. Such sophisticated technology.

Levi also had to get a PICC line in his arm since he still needs IV access but can’t seem to keep one for very long. They were able to do this as a bedside procedure, inserting a catheter into one of his veins. Once we are confident he is done with trips to the operating room we should be able to remove it.

Here is a close up of his sweet head so you can see how much his hair has grown. And a picture of his fat leg because I just can’t get over how thick his little body is.



He is still pretty miserable, but hasn’t needed morphine in over 24 hours. He is requiring some stronger pain meds to keep him calm, as he is not a fan of the ventilator and has been arching his head back very aggressively. Lots of angry eyebrows on this kid this week.


The hospital held an event for patient’s families and filled an auditorium with really nice Christmas gifts sorted by age group and cost (1 ticket, 2 tickets, or 3 tickets). They gave each set of parents 10 tickets to shop with and we were able to pick out some really nice gifts for both of the boys. We will have Malachi open them in the morning, which he will thoroughly love.

Speaking of Malachi, he is absolutely bored out of his mind. He and Jake have been trapped in the hotel room most of the week as we are trying not to share our germs with others. Saturday evening my family got together about 45 minutes away and I thought it might be nice to take Malachi for some brain stimulation. Jake stayed at the hotel in case of emergencies and to give me some peace of mind about leaving the hospital area. Malachi loved every minute of the gathering! He was exhausted by the time we left and actually managed to sleep through the night last night.

Jake and I have also been trying to do therapy exercises with him each day. I hate that he is missing so many appointments while we are here.


In my last entry I mentioned our need for help with Malachi starting January 3rd, as Jake will be heading back to Tennessee to go back to work. We have found a potential solution for a 3 hour daytime shift but will still need some help in the evenings. I am not picky about the time, but would love to be able to go sit with Levi for 2-3 hours each night. I had several people reach out saying they would be willing to help, so I am going to start a group email to anyone that might still be interested in helping during the evenings. If you would like to be added to that email just send a message to me at:

You don’t necessarily have to be a nurse to help, just an able-bodied and relatively strong person. You also have to have the ability to stay calm in stressful situations, like if Malachi has a seizure. I will make sure to talk you through the dos and don’ts before leaving you alone with him.

I have been back and forth with what to share with you this evening. God has been placing so many verses and thoughts on my heart these days, and none of them seemed to feel right for this entry.

But as I read Isaiah 61 this evening I couldn’t help but get goosebumps all over my body. Chapter 61 is captioned “The Year of the Lord’s Favor” which made me laugh out loud as I thought to myself “That is definitely not how I would title 2017 for us Carrolls!”

But oh how I will pray and hope that we will be able to title our 2018 with such powerful words!

Now before I start talking about this chapter, let me warn you that I am totally taking these scriptures out of their original context. Isaiah wrote this chapter to foreshadow Jesus (a Messianic prophecy). In fact, in Luke 4 Jesus is in his hometown of Nazareth and is handed a scroll to read in the synagogue..and it was this exact chapter from Isaiah. He reads these words that were written about him so many years ago and then says “Today this scripture is fulfilled.” It is his drop the mic moment and leaves everyone there furious at His claims to be the Messiah.

But when I read this chapter I can’t help but desire to apply it to our situation right now, and it brings me so much encouragement. Let me highlight the verses that spoke to my heart. These words are my prayer and hope for 2018 for our family.

“To proclaim the year of the Lord’s favor…to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

Their descendants will be known among the nations and their offspring among the peoples. All who see them will acknowledge that they are a people the Lord has blessed.”

Whew I just got goosebumps all over again. The two lines that get me the most are:

They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

The Lord has clearly planted us exactly where we are right now. We aren’t in Cincinnati by chance; we aren’t in this situation because of something we did or didn’t do. I am choosing to believe that we have been planted here so that the Lord can display His splendor through our situation. So far we have had many dark days, but there will be a day when that darkness will be overpowered by the bright light of God’s glory. My prayer is that everyone who looks at our trials and bumpy road will undeniably see the hand of God completely in control of every second, and that in the end His splendor will overshadow any dark moments we have experienced.

The second line that blows me away is:

All who see them will acknowledge that they are a people the Lord has blessed.

Oh how I pray that line over our 2018. I pray that every member of our family would reflect the goodness of our God. I pray that instead of looking at our family with eyes full of pity, instead we would be seen through a lens that reflects the AMAZING blessings that God has given to our family…as unique and different as they might seem.

Every time we take Malachi out in public we are stopped by well meaning people and they say things that reflect the pity they have for us. “Your life must be so hard.” “God must think a lot of you to give you such a challenging life.” The looks and comments we get are absolutely saturated with a tone of pity.

We usually just smile politely but everything inside of me wants these people to see how blessed we are. We have two beautiful gifts from God. Malachi’s joy is unparalleled and clearly comes from the Lord. Yes, our life has unique challenges but oh goodness does it also have its innumerable unique blessings!

I pray that those words are spoken about my little family and that others would see us and say “Those Carrolls, they are a people the Lord has blessed.” I pray that those eyes of pity would become eyes of amazement as you can’t help but see the hand of God in our lives.

May our 2018 be full of miracles for both of my boys.

Merry Christmas from the Carroll family!




Now We Wait…

While little Levi wasn’t quite able to get back to his baseline of normal after his rough transfer, ENT decided that the sooner we open his airway the better.

On Monday morning Levi went to the operating room for a bronchoscopy and the anterior posterior cricoid split (APCS). We were worked into the operating room schedule so Jake, Malachi, and I just waited by his bedside until an opening became available.

The surgeon came up to discuss the procedure with us and explained that it may not be possible to safely do the surgery due to his size. They have never done this procedure on a child as small or as young as Levi and she said if it wasn’t going to be safe to do we would have to trach and pursue other routes later. Jake and I were so worried that it may not happen and waited anxiously, hoping that every extra minute that we waited while he was in the operating room was a good sign that they were proceeding with the split.

We found ourselves yet again having to do the pre-surgery hand off…one of the worst feelings ever. This is now the 14th time I have had to place one of my sweet little boys in the hands of strangers and see them wheeled off to the operating room. That moment always breaks my momma heart and I always feel so empty as I sit in the waiting area. It never gets easier.

Pulmonology led the bronchoscope and came out to talk to us when their portion was complete. He explained that the airways below the trachea are a little floppy, a term called bronchomalacia. They collapse a bit when he breathes but we don’t know how opening the upper airway by the APCS procedure will affect this…our hope is that it improves it.

The ENT surgeon did the rest of the procedure. I will try to do my best to explain it in really basic terms…

The main issue is that Levi’s vocal cords are paralyzed (not moving) and stay closed when he tries to breathe in. Doctors have to find a way to open them enough to allow air to pass through.

There is a ring of cartilage in the middle of our necks called the cricoid. This cartilage is kind of a anchor for ligaments, muscles, and other cartilages that are involved in opening and closing the airway.  The cricoid looks like a giant ring:


So in an anterior posterior cricoid split procedure, the surgeon endoscopically cuts the front (anterior) and back (posterior) of this ring.  They then place a balloon into the cricoid and inflate it to break any leftover strands that may still be connected.

The balloon dilator is taken out and a larger than necessary breathing tube is placed in the throat to help hold that widened cricoid open. The goal is for the throat to heal around the tube and create some strong scar tissue to keep it wide.

Levi will be on the ventilator for 10 days then we will go back into the operating room to take a look and see if the scar tissue is formed enough to take the breathing tube out. When the tube comes out, the hope is that the gap between the vocal cords will be wide enough to allow air to pass through.

If he passes the test and gets the all clear for the tube to come out, we will then slowly start to wean his oxygen support and see how he does. We won’t know whether it is successful until we get him on low levels of oxygen and see if he can breathe on his own. So it will be several weeks before we feel confident that it did/didn’t work.

If it does work, we will then have to teach Levi how to drink and make sure that it is safe for him to do so. As you can imagine, when we widen that gap between the vocal cords there may be an increased risk that fluid could get through and into places they don’t belong (called aspiration). If that happens we may have to consider a feeding tube but our prayer is that he will be able to swallow perfectly fine.

So enough of the medical terms! Let’s move on to how he is doing…

Levi is miserable. But I think I would be too, so I am not shocked. He is on the ventilator, but it is down his nostril instead of in his mouth. With the large tube in his throat his vocal cords cannot come together at all and make sounds. So when he cries absolutely no sound comes out and you would have no idea that he was in distress unless you were looking at him. He is arching his neck back in discomfort and the nurse cannot re-position him without calling a respiratory therapist over to help guide the ventilator tubing.

He is getting morphine frequently in addition to a handful of other pain meds. He is still very swollen from the extra fluids in the operating room and just looks absolutely pitiful (as you can see from the pictures below). Today was the first day that he started to have a few glimpses of the “old Levi” and he even woke up for a few minutes and actively looked at mommy and daddy. We listened to some Christian music, which he loved. He has taken a liking to “Revelation Song” by Kari Jobe and always perks up when that one comes on.

The picture on the right was taken Saturday evening and the picture on the left was taken Wednesday. 

As hard as it is to see him in so much pain and discomfort I have to keep believing that we made the right decision in pursing this for him. Faith over fear. We are continuing to believe that this surgery will work. We are continuing to declare “Ephphatha” over his airways.

Malachi is still being such a good trooper these days. He gets a little silly when he is in the NICU as he listens to all of the fun and strange noises around him so we have to take him out frequently to let him get out all the giggles. They told us today that the NICU will close to children visitors on December 27th, which will definitely complicate things a bit. We are hoping to have a room in the Ronald McDonald House by then so we will have a place for one of us to stay with him aside from a tiny hotel room.


I just can’t get past how quickly he is changing these days. He will be 5 years old in February!

On that note, we do have a big need that is unfulfilled right now. Starting January 3rd Jake will be spending weekdays in Tennessee. We need to reserve the few sick days he has left for emergencies now that both of the boys are medically tricky. If you know of anyone in the Cincinnati area that is physically and logistically capable of lifting and caring for a 40 pound special needs child for a few hours each day at the Ronald House, we are going to need some help. We would prefer to be able to train a few people who can come consistently on weekdays as Malachi does have severe epilepsy and we get nervous leaving him for long periods of time with people who don’t know what to do. We are obviously ready and willing to pay as this will be a big commitment. If you know of anyone who seems like a good fit please email me at

Tomorrow was my projected due date for Levi. We always knew that I couldn’t safely carry him to his due date, but never did we imagine that we would have blazed this path before that due date hit.

Jake and I find ourselves shaking our heads periodically throughout the day, trying to make sense of the route our life has taken. Sometimes we can’t help but laugh out loud, afraid if we don’t let out some explosion of emotion we will burst with the pain that our life can sometimes create. I think back to that dream we had….four rambunctious and wild boys and me as a stay at home mom, carting kids to and from school, and sports. Never did our visions involve wheelchairs, hospitals, surgeries, therapies, and suffering.

Today we had one of those laugh out loud moments as we came back into the NICU unit from lunch. As we walked towards his pod the intercom system came on and the woman stated “Emergency at C3, I repeat emergency at C3” and people from everywhere started running towards Pod C. I looked at Jake wide eyed, as C3 is Levi’s bed. I felt like I was going to pass out as I ran towards his bed only to find that someone had accidentally hit his emergency button. He was absolutely fine but the emotions that moment brought just about did me in. I sincerely felt like I was going to pass out and had to sit down for several minutes.

I know it sounds so cliche to compare our story to Job’s in the Bible, but I can’t help but read that story with a whole new set of glasses.

When you read the story of Job it is easy to focus on his sufferings and sadness. But when I read the story I find myself clinging to the details, desperate to find comfort in them.

One of the biggest things that has always stuck out to me is the way God spoke about Job.

Job 1:8 Then the Lord said to Satan, “Have you considered my servant Job? There is no one on earth like him; he is blameless and upright, a man who fears God and shuns evil.”

Wow what amazing compliments God had for Job! “No one on earth like him”, “blameless and upright”, “a man who fears God and shuns evil”. Those words alone are such compliments coming from anyone, but to hear them come from the mouth of God is so exceptional and special.

But beyond the words themselves, it is also sticks out to me that God not only noticed Job but bragged about him to the devil. And boy, did it irritate Satan. So much so that Satan decided to set Job in his sights for not only one, but two vicious attacks.

After the first attack Job responded in a way the devil never saw coming:

20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:

“Naked I came from my mother’s womb,
    and naked I will depart.[c]
The Lord gave and the Lord has taken away;
    may the name of the Lord be praised.”

22 In all this, Job did not sin by charging God with wrongdoing.

What an example for us to follow! He allowed himself to mourn, but he also worshiped God and praised His name through the storm.

I am not going to lie- praising God has not been my first instinct through all of this. But the more I look for God’s hand in our lives the more I find it, and boy is it blowing me away!

When you go through the dark stuff in life it is so incredibly easy to focus on the sadness and frustrations those dark moments bring. It is even more tempting to dwell on that darkness and allow it to become a part of you. But as I read stories like Job I am able to see flickers of light, and it is those flickers that we have to focus on.

I don’t have any idea what kinds of things God is saying about the Carroll family right now. But I have such a strong desire to live a life worthy of a call out from God. And in order to do so, I just have to remind myself to continually focus on the flickers of light.

God orchestrated and brought us to Cincinnati where Levi would have a chance for a normal life with effortless, device free breathing. And He has given Jake and I a supernatural peace about this decision.

God is continuing to provide for us emotionally, physically, and financially. He has blessed us more than we deserve.

God has already used Levi’s story to bring others (including Jake and I) closer to Him.

The God moments have been pouring in over these last few weeks, each serving as a gentle reminder that God is still very much in control of our situation.

Faith over Fear.

This week we had to lay our finances at the feet of God and release our grasp on it. Bringing Levi to Cincinnati was a big step of faith as it is “out of network”. While we have backup savings for Malachi emergencies we never expected to deplete it with Levi’s arrival. In addition to November and December costs for Levi’s ICU stay we are looking at starting all of the deductibles and out of pocket max amounts over in 11 days.

Thinking about these massive numbers was keeping me up at night, and I had to make the decision to lay our need at the feet of God. Over the last week we have been so generously supported by our family, friends, community, and complete strangers. We have received gift bags of snacks, donations, encouraging cards and messages, and have had so many offers of support. The Lord has used many of you to build a camp around us, and we are so speechless with gratitude.

Tonight is one of those nights that I am going a little cross eyed and not making much sense, so that is my cue to wrap it up! The rest of this week we are focusing on Levi healing and trying to keep him as calm as possible. Please pray with us that his airway is opened next week and that he is able to move on to focusing on regular baby tasks, like drinking a bottle. Pray that God continues to strengthen our family, both physically and emotionally. And pray that God sends so many flickers of light in our direction that we can’t help but fall to our knees and worship Him.

Thank you for believing in miracles for both of our special and unique boys. They are precious in His sight.

God bless,


The Oil Jar

These last few days have brought a whirlwind of emotions for our little family. There is so much to say in this update. We ARE in Cincinnati, and Levi is stable again but it has not been as easy and smooth as we had hoped. And no surgery has happened.

I also need to mention that I try very hard to not use the blog to vent frustrations or focus on negativity. But unfortunately this post will reflect some of those emotions.

Our air ambulance flight was delayed on Thursday so we didn’t end up leaving the NICU in Chattanooga until around 10pm. The unit let the four of us spend some time together before we had to part ways- Jake and Malachi stayed in Tennessee with the plans to head up the following day. Here are a few pics from our time together Thursday night.


We went by ambulance to the airport and loaded a straight winged, small plane and took off around 11pm. There were two captains, a respiratory therapist, a nurse, and Levi and I. This was NOT Cincinnati Children’s transport crew…they offered but insurance insisted we use one of their preferred providers (aka the cheaper option).

Levi did not seem to like the ambulance ride, nor did he enjoy the flight. He screamed through most of the adventure and I did my best to calm him down but couldn’t. I could tell that he was sweating very badly through his blankets and clothes but there wasn’t much we could do about it as we were mid air. I was very surprised that he wasn’t being transported in a NICU isolette, and questioned them about it in the ambulance but they said they don’t always use them for the little ones.

We landed in chilly Ohio and got on another ambulance to head to the NICU in Cincinnati. I could tell Levi was tuckered out, and his color was a little paler but I just assumed he was tired from so much activity. I was so eager to get him to the unit and get him unwrapped and calm!


There was a little bit of a mix up when we arrived and we were directed to take Levi into the Children’s Emergency Department where we were shown a room. Before I realized what was going on, they had wheeled my premature, NICU worthy son into an exam area with several very sick, coughing, and puking children walking through the hallways and into the rooms next to his. Once I realized what was happening I started being vocal about my concerns but was continually told that this was how they had to admit children…it was “protocol”. I grew more and more frustrated and asked them if the NICU realized that the NICU transfers were being exposed to all of these sicknesses and they assured me that yes, they did in fact and that was acceptable. Obviously later we discussed this with the NICU staff and they were very apologetic and explained that is most definitely not how it should have happened.

**Let me note here that other than this single mix up, our experience at Cincinnati Children’s has been amazing! I would hate to give off any other impression.**

By the time we left the ER department to head up the stairs I was an emotional mess, crying uncontrollably. I couldn’t believe that I had just allowed my son to be exposed to so much sickness without advocating more. We made it up to his new pod and the transport crew moved him into his bed and left.

When they unwrapped Levi they found him drenched with sweat…you could wring out his clothing and blankets. He was completely white and pale and was breathing so hard that his little ribs pulled painfully with each breath. They listened to his lungs and the nurse practitioner heard fluid in his lungs and worried that one had collapsed. She ordered a chest x-ray and the rest of the team worked to get him stable, which he clearly was not.

When we left Chattanooga Levi was very stable. He had been on 4 liters of high flow oxygen- something that was communicated to the transport team twice verbally before we left and also written down.

Cincinnati looked at the transport crew’s report and it noted that Levi had been on 1 liter of oxygen for nearly the entire transport (10pm-2am).  Putting him at 1 liter was absolutely dangerous for him. It was a decision that the transport crew should never taken liberty to decide on such a small and fragile NICU child whom they had just met…especially one who was being taken from a quiet NICU unit and placed on two ambulances and an airplane. And he literally screamed and cried for at least 75% of the time. Transport never once unwrapped him enough to see his body color or retractions and made this decision solely based on his numbers.

It was very clearly that Levi had been under-supported on the transport and his little body was just so exhausted from trying to work so hard to breath that it was starting to shut down.

As they worked on him things started to improve slightly…his color started to come back a bit and he wasn’t screaming anymore.

Then his little body had just had enough and he stopped breathing.

Yes, you read that right. Levi stopped breathing and they immediately started to bag him (manually breathe for him). This child was absolutely considered stable when we left Chattanooga and within hours didn’t even have the energy or ability to continue breathing due to poor care on the transport.

Levi was placed back on a ventilator. The last time he required the vent was at his birth. He stayed pretty lifeless for the first night and rode the vent (meaning he didn’t make many efforts to breathe). I haven’t been that emotionally devastated since Malachi’s days in the NICU four years ago. Watching the team huddled around him and attempt to keep him alive was something I NEVER expected to see with Levi. He has always been considered stable and seeing things change so suddenly made me want to vomit and pass out…I was devastated.

Thursday night was a rough one as they worked to find the perfect balance of oxygen support for him. He clearly needed the help breathing but his carbon dioxide output was all over the place.

Levi started to act a little more like himself Friday afternoon but still was very much not at the same level as he was in Chattanooga. He still seemed very tired and worn out. He has had a few brady’s (where his heart rate drops….something that was not an issue in Chattanooga prior to transport). Obviously our plans for surgery were postponed as we know have to focus on getting him strong again.

We worked Saturday on getting him off the ventilator, and extubated him around lunchtime. He is on 6 liters of high flow oxygen/helium combination and still not completely comfortable on it. He is still working pretty hard to breathe.


The other boys and I checked into a hotel today a half mile from the hospital so we can be close. They have allowed Malachi to come into the unit with us which has been a huge blessing.

Malachi did, however, have a pretty big seizure while in the unit today which led to a post-seizure nap on momma…which I did not object to…I miss snuggling him so much.


I tried to hold Levi Saturday for the first time since Wednesday and he started retracting so much we had to quickly put him back.


We have applied to stay at the Cincinnati Ronald McDonald House but they are a popular place with a 16 day waiting list. Hopefully it will open up sooner!


So no exciting updates for you- just lots of frustrations at how things played out. I am still confident that Cincinnati is exactly where Levi needs to be as he needs this surgery but am so sad that he had to endure so much pain and suffering in the transport process. It could have been completely avoided had the team that transported him been more qualified to deal with NICU babies.


The breath has simply been knocked out of the Carroll Family. The excitement of winning the battle with insurance so we could get him to Cincinnati was fueling me and in an instant we felt sucker punched in the gut as we watched him decline and become critical.


On Thursday before we left for Cincinnati I was running around the Ronald McDonald House gathering our things when I came across the shampoo bottle I spoke about last week. I somehow managed to squirt out every last drop and finished it off Thursday morning.

As I thought about that stupid bottle of shampoo that had made me so emotional the week before a Bible story about Elijah and the widow’s jar of oil came to mind. And as it did I heard  message very clearly from the Lord…

1 Kings 17:7-16 tells the story about Elijah coming into a city and came across a widow who was gathering sticks. The Bible tells us that Elijah asked her for some bread and the woman replied: “12 But she said, “As the Lord your God lives, I have no bread, only a handful of flour in the bowl and a little oil in the jar; and behold, I am gathering a few sticks that I may go in and prepare for me and my son, that we may eat it and die.”

WOW what a sad reality this woman was facing. Her situation was so bad that she was actually having to plan a final meal for her son, expecting them both to die of starvation shortly after. She had exhausted all other options. Spoiler alert- in the end she made Elijah some bread and because of her obedience God allowed the flour to never empty and the jar of oil to never run dry.

As I thought about this story I couldn’t help but focus on that jar of oil. It never said that God filled the jar of oil to the brim…it simply says the jar of oil never ran dry.

I laughed to myself when I thought about this and thought about Jake and I. We have been at that point so many times of feeling utterly and completely defeated by life and the challenges we face…but God, in His love for us, never lets that jar of oil run out. He continues to provide for us day after day… in the form of energy, strength, guidance….and each day we find just enough oil in the bottom of that jar to make it through another day. There is never a surplus of that oil- just simply enough.

And we try to live each day trusting that God will replenish that oil as He sees fit. This week has already been a challenge as we stare at the jar wondering if we will have enough, but we thank God for His omniscience and His desire to share His strength in times that we are helpless and weak.

I am hoping to have a good report for you in the next several days, but Levi needs your prayers right now. He is trying hard to build his strength back but needs some time and a touch from God.

And pray for our strength as a family.

With love,

Jake, Leah, Malachi, and mighty Levi



Cincinnati, little Levi is headed your way!


I have spent the last 48 hours on the phone and in meetings with doctors…let me do my best to catch you up on everything we have learned. Let’s start at the beginning….some of this information may be a repeat but it is important that you get the whole picture.

Levi was born at 34 weeks gestation and in the delivery room they noticed the had a stridor (noisy breathing) indicating something was blocking his upper airway. On the first bronchoscope to check out his throat it was just thought that there was some irritation from the oxygen tube going in, then out, then back in again in short amount of time. The doctors said he just needed some time to heal so we tried steroids and rest. But Levi’s stridor stayed strong so after a few weeks we did a second bronchoscope.

With all the swelling gone from his airway the pulmonologist was able to really see what was going on. He noted that Levi had paradoxical vocal cord movement. Basically, when Levi breathes in his vocal cords shut tight instead of opening. He has been diagnosed with bilateral vocal cord paralysis (BVCP).

Here is a visual but Levi’s never really open all the way; in fact his close tightly like the bottom picture when he is upset and tries to breathe in:


There are two groups of BVCP- for the first group there is a known cause for the issue, like a specific brain malformation. We were able to rule out the brain malformation through an MRI telling us that Levi’s BVCP falls into the second category: congenital (from birth) idiopathic (unexplained).

BVCP is a very tricky diagnosis. So for kids in Levi’s group, if you do absolutely nothing 50% of them spontaneously get better (the nerve “wakes up”) within two to four years and 50% never get better and have to have a trach for life. But for Levi we don’t have the option to do nothing and wait and see, as he has a “critical airway”- he is a danger to himself because when he gets upset and cries his airway closes tighter and he can’t catch his breath.

The only option we have in Chattanooga is to make his “critical airway” safe with a tracheostomy and hope that he is part of the 50% of kids whose nerve wakes up after a few years. It would also not be safe to try eating so we would have a trach, a g-tube, and would simply be waiting, hoping, and going in every few months to see if he is ready to have the devices removed. But no guarantee that that day would ever come.

Last week I called around to some nationally known hospitals that deal specifically with airway issues. I spoke with Children’s Hospital of Philadelphia (CHOP) and learned about a new surgery they had learned from Cincinnati. They have been in communication with me all week and have been VERY eager to get their eyes on Levi’s bronchoscopy videos. They even called yesterday and gave me the head surgeons HOME ADDRESS for me to send the video to!! That is wild!


I presented this new procedure to the team here in Chattanooga and they had never heard of it, but were very intrigued by it. In fact, they are so interested in it they have ordered the equipment needed to start trying to complete it here (after more training and research of course). One of the pulmonologists said he knew the head airway surgeon at Cincinnati Children’s Hospital and wanted to reach out to him before following up with CHOP. We were thrilled by that as Cincinnati has more experience with this procedure so we gave him the green light to send the video to Cincinnati.

A whole week went by and nothing was sent. Finally last night the video was sent to the Cincinnati surgeon and he called me this morning. He said that based on the video it seemed that Levi was a perfect candidate for this procedure. Let me summarize our conversation…

The new procedure is called an Anterior Posterior Cricoid Split (APCS) and has only been done on a handful of babies. This particular surgeon has done 12 over the last 5 years, and between him and his colleagues they have done 20. He said their success rate is now at 80-90%, and we learned from CHOP that they had completed 3 over the last year with 2 successes. “Success” in this situation is being able to avoid the trach.

Now here is where things get tricky….

This is considered an “experimental procedure” so we don’t have any long term studies on the outcome. There is one other experimental procedure with a shorter recovery time that can also be tried but he has only done 3 of those, so we are leaning towards the APCS.

The surgery is done endoscopically  and in really basic terms, they would surgically put a tube into his airway on the inside that would hold open the incisions they make in the cricoid. It would require him to be intubated (on a ventilator) and relatively sedated for 10-12 days while the throat heals around the tube and when they remove the tube the hope is that the airway gap that was created will allow him to breathe freely. This procedure has to be done in the first 9 months of life as the airway is still pliable at that young an age.

There are pros and cons to the APCS. The wider airway will allow him to breathe better but also put him at a higher risk for aspiration (liquids like milk, saliva, etc getting into his lungs). He also could end up with a raspier voice as his vocal cords won’t close as tightly after the surgery, and once you widen you can’t undo it. There are also no long term studies to look at and rule out any unknown future issues.

So basically here are our two options:

Option 1: Stay in Chattanooga and put a trach and g-tube in Levi, hoping that we would be able to remove them in a few years.

Option 2: Transfer to Cincinnati and do this experimental procedure. Once the airway is open we can tackle feeding by mouth, and if that goes well then we will go home device free. If the APCS fails, he will leave Cincinnati with a trach and a g-tube.

Jake and I both agree that option 2 is worth attempting…in our opinion it can’t necessarily hurt anything to try. Almost all of the children who are considered “successes” who have had this done are still problem free at 4-5 years old (the first APCS is 5 years old right now), with one of the 4 year olds showing signs of airway issues again when he runs around for long periods, but it is not bad enough to do anything at this point.

We are working with insurance right now to arrange the transfer. An ambulance will take Levi and I to the Chattanooga airport where we will meet an air ambulance and continue to journey by plane to Cincinnati. We are told that once we are there the surgeons would like to move quickly and within a day or two get him into the operating room. He will be intubated for 10-12 days, then weaned for a week from pain/sedation meds and they will then look at his airway. They will look again at the two week post intubation mark and if all looks good we will be discharged and sent home to Tennessee. So it looks like best case scenario is a 4 week stay.

We would obviously then make several follow up visits to Cincinnati over the next several years to keep a close watch on the airway and make sure we remain problem free.


We should hear from insurance tomorrow and make the trip in the next few days!

I have no new updates to share with you about his brain damage, and won’t really have many until he gets older and we see the extent of the damage manifest.

Here is a sweet video of Levi:

I was tested today by Levi’s hematologist for some autoimmune disorders as we are hoping to find the reason for the brain damage and we can’t test him at this age. They were able to send off 7 vials to Memphis and even though I have already tested negative for these disorders, there is a special way this particular lab can spin them again to see if there is a small factor that has been missed. We are hoping to find some answers so we can be assured that the brain damage event won’t happen again.

Levi has been so sweet the last few days. He has officially hit the 5 pound mark and is officially 4 weeks old today! He has been VERY intrigued by his aquarium these days and loves to listen to worship music with mommy.


I had a friend send me a text with a Bible verse in it, and I got chills when I read it…

Psalm 27:14 “Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.”

I have been SO FRUSTRATED for the last week as we have simply sat and waited for others to follow through with their promises. We have been praying that all of this be done in God’s timing, but the earthly side of me couldn’t stand the lack of follow through as I sat by my son’s bedside each day watching him struggle to breathe! My anger yesterday was at an all time high as we were told that the video still had not been sent.

But as I read this verse it just seemed to speak directly to me. WAIT FOR THE LORD. We have asked God to open doors that are meant to be opened and close those meant to be closed. We have put this into the hands of God and asked for His wisdom to guide us in the direction we are meant to go. Now our job is to be strong, take courage, and wait on God to do what we have asked him to do.

I have SO MANY things that I want to share with you all that God has been speaking to me, but I truthfully can’t even formulate thoughts into sentences right now! My brain is absolutely fried, but expect some deeper thoughts in future posts haha!

We are still very much in need of your prayers. Obviously a transfer adds a whole new level of complications to our family situation. Jake and I are going to have to part ways for a bit and each focus on one kid, with the goal of getting all four of us to Cincinnati soon.

We also need prayers for health for all four of us, and strength as we navigate through the transfer process. And most importantly, it looks like Levi might be having his big surgery within the week and we need prayers that it is completely successful and problem free.

Thank you all for following our journey, and I hope that have some good updates for you soon.

God bless,










I hesitated even doing another blog post tonight as not much has changed since Thursday’s post, but it just felt too unnatural to not do one as I have done one every Sunday night for the last 4.5 years!


Here are the updates I do have…

Levi’s stridor and airway issue are unchanged, and will stay pretty much the same until we surgically intervene (whether we do the new surgery or the tracheostomy) or God gives us our miracle. He squeaks when he breathes in, and when he gets worked up during diaper changes or anything painful like IV sticks he gets hysterical. When this happens he becomes a danger to himself as he can’t catch his breath. He has a desat about once a day or every other day where he drops his oxygen level down and needs to be turned up a bit until he calms down. But he is still on 21% (which is room air) on the nasal cannula. We are just attempting to keep him as calm and happy as possible until a decision is made on the next step.


We had one small scare this week as one of the nurses gave his some new medication to help him calm down and it relaxed him just a little too much to the point where he forgot to breath. We had to turn up his oxygen liters for several hours and it is now in his chart to steer clear from that medication from here on out as he had such a negative reaction.

As far as the MRV (to check veins) and the MRA (to check arteries), both came back clear. These tests were done as they suspected clotting may have caused his brain injury. They came in and said “Great news, the tests were negative for any clotting issues!” And while I was thrilled, it still doesn’t answer where the brain damage came from. When I asked them about the hypoxic ischemic event they concluded that it simply must have happened at his birth. This still didn’t make sense to me as the delivery went about as seamlessly as a semi-emergency c section can go.

I was able to get copies of his birth records and even spoke to the nurses and doctors in the room that night. Every single one of them said the same thing: there was no opportunity that night for him to be without oxygen for long enough to sustain “extensive” brain damage.

Since the MRV and the MRA came back clear hematology decided they didn’t need to pursue anything further, which is a totally logical and rational thing to say. But I just feel like there is something we are missing, so I asked the doctor if I could still meet with the hematologist to discuss Levi’s case.

Here is the problem for me…if I accept that his HIE happened at birth even though that doesn’t add up, we could be missing a MAJOR problem that could possibly happen again to Levi. Without concrete answers he still has potential to have another event and sustain more damage. I just can’t let this drop that easily as I want to be assured that he isn’t going to have the problem again.


Yesterday that meeting happened and I started from the top explaining Malachi’s birth history (placental abruption with a clot), my miscarriage, and Levi’s birth history (placental abruption). The more I mentioned the more this man’s mental wheels started to turn and I could see him processing through each detail. He said “There are red flags all over the place. There is clearly something going on here.” It was so refreshing to hear some validation from the hematologist and have him curious enough to help figure out the answer.

He said the tests he wanted to run on Levi for a possible autoimmune disorder he could not safely do until he is 6 months of age as the blood draw is a large amount. I asked if he could do the draws on me (as the issue is possibly hereditary) and he said that would be a great idea. He wrote down the tests for me to request from my hematologist and said he would contact him and go from there.

Today he came back and said he had gone home that evening and remembered a specific placental issue that can happen that can cause babies to suffer HIE events in utero. This issue is not detectable by tests and ultrasounds during pregnancy, but can be linked with abruptions. He said he would be very surprised if it was not this issue and asked if I would be willing to come to his office to draw up some bloodwork. He said he would have it sent to Memphis and checked and was very interested in the outcome. His office will be calling me in the morning and hopefully we will get the process for that started tomorrow.

This is the most important part to me…he said if it IS this issue that he is thinking of, that Levi is no longer in jeopardy of having another event since he is now out of my body. That is exactly the reassurance I need to hear.


We are prepping for Tuesdays meeting with the intent of settling on a game plan. Jake and I are at the point where just waiting and watching is no longer an option, as it is not in Levi’s best interest. I just hope that the specialists have followed through with contacting Cincinnati as they promised they would. Step one is seeing if he is even a candidate for their new procedure and simply knowing that fact will help us plan the next steps.

Those are the medical updates! Not much, but at least we are on the route to some answers.

I have been struggling a bit this week with feeling alone. It has nothing to do with physically being alone (well, with Levi) most of the day, but more to do with the burden of big decisions on my shoulders. I just feel so mentally alone, if that even remotely makes sense.

As the weeks roll by I find myself having to research and fight very hard for Levi, and unfortunately I am routinely met with opposition. With Malachi, his care plan was in the hands of professionals and we didn’t ever feel the need to question or advocate. But Levi’s journey is different.

My mind spins every day with the new information we are given as I try to unfold the mystery around this situation. Unfortunately Jake is not around for most of the conversations I have with the doctors and specialists so even he is not able to help bear some of the mental burden with me. He is my sounding board and my affirmation when I need it, but isn’t able to be by my side for the talks.

This is one of the first times I have ever felt weary. Truly weary. I am mentally exhausted by the decisions we are facing and the new information we are continually receiving, and as I look at this sweet little boy with *JUST* an upper airway issue I can’t help but desire to fight avidly to preserve his normalcy as much as possible. Yes, there is brain damage involved but we don’t waste our time and energy focusing on that right now as the effects will not manifest for quite some time.

As I have processed these emotions over the last few days, the Lord laid this verse on my heart:

Isaiah 41:10 “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.”

I don’t think I could find a more perfect Bible verse that speaks directly to my weary heart right now. I am so thankful for the word of God. And I am incredibly thankful that I have such a mighty presence by my side each and every second of the day. Sometimes I forget that fact.

And I am thankful for this sweet little gift from God.


Please continue to lift up Levi in your prayers. Please pray that God orchestrates the details of our upcoming meeting and we feel peace about the decisions we will make. And please continue to expect a miracle for Levi. May he be completely healed and restored.

God bless,




This has been an overwhelming week for me so bear with me as I try to gather my thoughts well enough to communicate them.


Right after Levi’s birth we were told that he simply had a stridor and that lots of kids outgrow those. After about two weeks we learned that his stridor did not exactly fit into that category of a “typical child” and learned that he had something called paradoxical vocal cord movement meaning his vocal cords shut every time he tries to take a breath. The only treatment option we were given was a tracheostomy.

Jake and I have just felt so unsettled about agreeing to do the tracheostomy without first exhausting ALL other options. If our research led to dead ends, we would readily put a trach in Levi as he needs some form of intervention for him to live and breathe.


So Monday was phone call day as I called some nationally known hospitals with amazing technology for airway issues. My first call was to Children’s Hospital of Philadelphia (CHOP) and I explained our situation. Within three minutes they connected me with the nurse practitioner of the head surgeon…this alone had to have been a God thing. If you know anything about the medical world, opportunities like this one are uncommon and rare. She and I talked for nearly an hour about Levi’s case and she said he sounded like a candidate for a new procedure they are doing called an Anterior Posterior Cricoid Split. Now before you google that term you need to know that this is a surgery that is done for a completely different purpose in adults and has been adapted to help with bilateral vocal cord paralysis issues like Levi’s.

When I say “new procedure” I mean new. CHOP has done 3 of them and were successful in avoiding a trach in two of the cases. They learned the method from Cincinnati Children’s Hospital who has only done 10 of these with 6 being successful.

She told me that they would be more than willing to look at Levi’s medical records and bronchoscope videos and decide if he was a candidate. If he is a candidate, they will arrange for a NICU to NICU transfer and send a straight winged airplane down to pick him up. Needless to say, I was VERY encouraged when we ended the phone call.

While we had a great lead with CHOP, I decided to do another phone call to the second hospital on my list and called Cincinnati. I was taken straight to voicemail only to have the secretary call me back a few hours later and explain that they wouldn’t discuss the case with me and would have to have our NICU team call theirs. I saw that as my closed door and decided that CHOP was the route we would attempt.

My plan was to work on gathering the medical files needed and sending them to CHOP immediately, but knew it would take a few days and thought it would be worth asking the NICU team about to see if they could help expedite the process. On Monday morning during rounds I explained our findings and they agreed to help. I was ecstatic with hope!


The head of pulmonology came up to see us later that afternoon and asked about the procedure. I pulled up a few medical articles explaining it and he was intrigued. When I mentioned Cincinnati he told me that he had contacts there in the ENT department and would contact them to see if they would consider taking on Levi’s case.

We would personally prefer Cincinnati, as they have more experience with this particular surgery and Jake and I are both from that area making the housing situation a bit easier.

Monday evening I was overwhelmed with joy that we may have found a solution for Levi!

On Tuesday things got a little more complicated. Last week Levi had an MRI and an EEG to check his brain and both showed cerebral abnormalities. On Tuesday the neurologist came by to discuss what was happening with his brain.

The imaging shows that there are several areas of brain damage on both the left and right side of his brain. Some of the brain damage is old and some of it was newer (1-5 days). Levi has been diagnosed with Hypoxic Ischemic Encephalopathy (HIE). If you have heard this term before it is probably because Malachi has been diagnosed with the same exact thing…and it isn’t a good diagnose to receive AT ALL.

Hypoxic means inadequate oxygen, Ischemic means inadequate blood supply, and Encephalopathy means the brain has been affected. So HIE essentially means that at some point Levi lacked oxygen or bloodflow and his brain was damaged. We are relatively confident that he never had a Hypoxic event as we have been in the NICU and would have noticed that on his SATs and intervened. So they are leaning towards thinking he has had some blood supply issues, like maybe clots that have caused two different waves of brain damage.

We absolutely did not see this coming. At all.

I talked with the neurologist about what to expect with the location and extent of the damage. He said we should expect some form of cerebral palsy in Levi, although not as severe as Malachi’s. He also said while seizures are not as likely, we need to watch him closely. He also said that he does not feel that the brain damage and the throat issue are related in any way.

He ordered an MRA (to look at arteries) and an MRV (to look at veins) as well as an echocardiogram to check his heart. The echo came back clear, and we should know the results of the other two tests tomorrow. They are looking for any areas of blood flow issues that would explain the ischemic event we are seeing the results of.

Once those test results come back they want to do a consult with hematology to have them try to find the blood issue we are dealing with. Since we don’t know where the problem is there is a chance that it could happen again, leading to more brain damage.

Things just got more complicated.

I know this sounds crazy, but the news of Levi’s brain damage didn’t necessarily devastate me. Now don’t get me wrong- I cried uncontrollably in anger at the situation that evening but even now my heart feels at peace about it. We have learned through Malachi that the brain is an amazing thing and can rewire itself. So even predictions from a neurologist can be wrong. And let’s say he is spot on with his predictions and Levi does have CP, our family is no stranger to the challenges that diagnosis can bring. God has been equipping up for four years with Malachi, and I am confident he will do the same for Levi’s unique needs.

And just to clarify, we know that Malachi was born without a heartbeat and required 15 minutes of CPR, causing his HIE event. There is not a genetic link that caused them both to be diagnosed with HIE.

We had a Patient Care meeting today with about 10 of us in the conference room. I wanted to see where everyone was at with the phone calls and file transfers that we had requested earlier on in the week. Unfortunately we learned that no files have been sent and no contacts have been made with CHOP or Cincinnati. We were told that they would like to gather as much information about the new neurology issues before they will make contact. I explained to them that the neurologist is confident that the two issues are unrelated and we would like to proceed with reaching out to other resources to just see if he is a candidate for the new procedure. We were told that when they receive the results from today’s MRA and MRV they will send an email to Cincinnati and start there.

The more we dig the more we find, and the mystery just gets bigger. Levi’s pregnancy was monitored so closely by so many different doctors. Appointments every Monday, Wednesday, and Friday. Shots every day. Ultrasounds once a week. Yet we find ourselves surprised…and so very confused.

And as we spend time doing all this research and testing, Levi is simply just living in the NICU. No progress is being made in any shape or form. Just a life of IVs, tests, and mommy trying to get as many snuggles as she can. We have been here for three weeks and he is in the exact same situation as he was at birth.

I am emotionally exhausted. I don’t even know how to describe it. Every day I go to war against my emotions, because when I start to lose control of them it sucks every bit of my energy out. I get overwhelmed by anxiety, anger, and a deep sadness from a mommy heart that just wants to be with my children together, in the same room, wire and machine free.

I can’t describe to you the overwhelming sadness of having to leave your child each night. It is just so unnatural to have to walk away from him. He is a piece of my heart and I feel so much guilt when I am away from him. With Malachi’s NICU stay it felt different because most of the time he was on medicines that kept him from being fully aware of our presence. But I am confident Levi knows when I am by his side, so that makes me confident that he knows when I am not.

Oh how I love that boy so much. There is something so special and unique about him. His eyes are more beautiful that words can describe and his personality starting to come out. He melts my heart every single day.


Here is a video of him interacting with daddy, whom he dearly loves:


I am basically a ticking time bomb when it comes to emotion these days, and the different things that spiral me out of control are so random. This morning I started crying in the shower as I picked up the bottle of shampoo only to find it nearly empty. Before Levi was born I stocked up on all household goods so we would be set after his birth. I remember stopping by the house on the way to the Ronald McDonald House two days after his birth and picking up that shampoo bottle, saying to myself “This should be plenty since we will be home within two weeks.” But here we are, one bottle of shampoo down and no sign of home anytime soon.

If we hypothetically did the tracheostomy tomorrow, we would still be here for another month. This NICU journey is far from over, which is something I am having a hard time coping with.

Changing gears now…

Malachi has had a fun week with a few fun visits with friends. On Tuesday his teacher from school took the day off and took Malachi to the aquarium with her son. What a blessing that was to us as Jake and I were able to visit with Levi together, and Malachi loved the adventure.




He even got to sneak into the NICU again to visit with his baby brother. He was absolutely smitten as you can see from these photos:


And here is a sweet video:


Levi now has a private room in the back of one of the pods.


I am healing well enough to start sitting Malachi on my lap for short spells. Here is a video of him being super silly and snuggly. We miss playing together so much:


I am sure you are wondering why I chose such a random title for this post. But that word is so special to me right now and I declare it over my son.

In Mark 7 the Bible tells a story about Jesus healing a deaf man with a speech impediment. It says “and looking up to heaven with a deep sigh, He said to him “Ephphatha!” that is, “Be opened!”

I have always had an imaginative mind, and when I read this verse I can’t help but picture the scene. I love words- and I love the picture the author paints….Christ looking up to heaven and sighing deeply before making his healing declaration.

Ephphatha- Be opened!

That is my declaration over Levi’s body- over his blood vessels, over his throat. My prayer is that God miraculously heals him and opens up his airway in a complete and inexplicable way. And when I speak this over him I find myself, like Christ, looking to heaven and sighing the word with every ounce of strength and faith I can muster.

A friend came up with an idea to have everyone that is willing set their phone alarm to 5:57 EST (the time of Levi’s birth) and pray for him at the same time each day. Let’s pray together for his healing. Let’s declare Ephphatha (Ehf-uh-thuh) over his little body and ask that God heals him completely.

And finally on to one final note…

Many people have been messaging me asking what they can do to help. Honestly, there isn’t much that anyone (ourselves included) can do right now aside from pray. We don’t have a Gofund me account set up as we want to reserve that for a time when our family is absolutely financially desperate for help and have no other options but to ask for assistance from friends and family. But many people have asked about contributing financially to the cost of medical bills, and we are very touched by the request. Our church has offered to collect any encouraging notes, donations, gas cards, etc and get them to our family. If you feel led to give, please see the information below.

First Baptist Church

ATTN: Levi Carroll

PO Box 326

Benton, TN 37307

Thank you for continuing to pray with our family for another miracle. God is able. And please continue to pray for wisdom for our family as we prep for another patient care meeting next week.

And let me end this entry with Levi’s angry face, because it is just too cute not to share…


God bless,


Pieces of the Puzzle

This has been a whirlwind week as we are trying to process all of the new information we have been given. I don’t have any answers quite yet, but I will walk you through the rabbit trails we have been on.


If you haven’t already read my last post “Miracles For Levi” you may want to take a minute to read that one before continuing on with this post.

So after the latest bronchoscope and news about a tracheostomy from the pulmonologist Jake and I asked for a second opinion from a pediatric ear-nose-throat doctor (ENT). One has been consulted and has evaluated Levi but we haven’t been able to speak with him directly yet. We are hoping that we will get to talk with him tomorrow and see what he is thinking. But the ENT and the pulmonologist have spoken and in the pulmonology report he did say that after speaking with the ENT, the need for a trach is still highly likely. It doesn’t sound like we will learn anything earth shattering from the ENT.

There is a certain brain malformation that can sometimes be linked to vocal cord dysfunction so another rabbit trail we have been on is evaluating Levi’s brain. Step one was an MRI to rule out the malformation. It took two attempts to succeed with the MRI- Levi had to be completely still for the procedure and was hysterically crying the first attempt (not shocking as they strapped him in a baby straightjacket) so he had to be sedated for his second attempt. The radiologist who read the report noted a few suspicious things that needed to be investigated further so now a neurologist is involved. We were able to rule out the malformation associated with his vocal cord issues.

The second step of the brain investigation was having an EEG done on Levi. Unfortunately those results came back abnormal as well, but we are waiting to speak with the neurologist to see exactly what we are dealing with. Luckily there was no seizure activity during the EEG. But it is a little alarming that they have found some “cerebral dysfunction” as the report stated. Hopefully he will come and speak with us tomorrow. We are very curious to find out if his brain is causing any of these throat issues.


This week will be a big week for our family. We will likely be speaking with multiple medical professionals at this hospital and trying to establish a game plan for Levi. I have been researching several big hospitals nationally that are doing ground breaking procedures on paralyzed vocal cords and I will be contacting them over the next few days to see if Levi would be a candidate for surgery at each location. These places typically do these big surgeries to help remove trachs, but we would really like to see if any of them would consider doing the surgery before the trach is ever put in. It would have to involve a transfer from one NICU to another, which will be very complicated for our family, but there is no question in our minds that every avenue needs to be explored.

So essentially everything is still a big giant mystery. I am hoping to have some more answers this week so that Jake and I can start to come up with the best possible solution for our boy.


Levi is starting to gain weight, which is a blessing. He is up to 4 pounds 10 ounces and we were able to put clothes on him this week. He has had a busy week with all of his tests and procedures, and because of that we weren’t able to hold him as much this week.

He is an absolutely precious little boy. He will randomly wake up and look around quietly for up to an hour, just soaking it all in. He is fascinated by Jake and I and will actively listen to every word we tell him. There is just something so unique and special about his demeanor and when I see him listening so intently and showing so much curiosity I can’t help but think he is one special little guy. He does not act like a newborn! He also has a pretty big temper for such a little guy and DOES NOT like when they wake him up for diaper changes or procedures.


Here is a sweet little video of him listening to his sound machine:

I hate taking up blog space for Leah updates, but so many of you have been messaging me showing concern so here is a quick update…

I met with my OB on Tuesday morning and we ran some tests to check the levels of my medication. My hope was that we would be able to reduce the amount of blood thinners I am on as my injection sites were not handling it well and continuing to bleed. It isn’t necessarily painful when they break open but more of a nuisance as I am doing two injections a day (so 14 holes in the last week that are randomly bleeding). Friday I was able to meet with the hematologist and he reduced my medication slightly which seems to have helped a bit. I will stay on the injections for 3 months and follow up with hematology to make sure things are working like they should. The actual pain from the DVT (blood clot) is starting to disappear, which is a nice change.

Emotionally I am doing much better than mid week as I have been able to process things a bit. There is literally no time in the day to spend dwelling on the bad news and it exhausts me so much to do so. Instead I have to invest that energy into making the most informed and best decision for Levi.

In a day I am trying to stay by Levi’s bedside at least 8 hours (the Ronald McDonald House Rule in order to keep your room), pump for 4 hours, and sleep for at least 8 hours as recommended by my doctors. That leaves me with 4 hours throughout the day to eat, stay hydrated, get to my appointments, be a mom to Malachi, do laundry, wash bottles, shower, and research care for Levi. Juggling all of these things has been utterly exhausting, and all at a time when I am supposed to be resting and healing from my C-section. We are running on fumes. Many of you have been messaging and calling me and I hope no offense is taken when you don’t hear back from me.

We really need prayers for a burst of strength this week. Jake and I both need to be on our game for the new challenges we are facing. And we truly need prayers for wisdom and guidance from God. Please pray with us that God opens doors that need to be opened and slams shut the routes He doesn’t want us to pursue. It is SO DIFFICULT to make medical decisions for your child, and the potential for guilt down the road is monumental. So much pressure. I pray that our decision making will be black and white with no regrets and orchestrated by God.

It is in situations like these that faith becomes a tricky and difficult thing. I can remember so vividly times with Malachi where I prayed with every fiber of my being for healing…and the day after I would walk into the NICU with confidence that God had healed my son overnight, only to find out that his brain bleeds had gotten worse. As a child of God, these moments were so hard for me to process. So what do you do in those situations? What do you do when you don’t get your miracle?

Jake and I are choosing to believe 100% that God can heal Levi…in fact we declare these healings over his little body. But as we have fought beside Malachi for the last four years we have learned that sometimes God’s timing for a healing is different than our own desired timeline. Maybe it will happen tonight, maybe it will happen in several years, or maybe his complete and total healing will happen when he gets to heaven…but until that healing comes we will choose to trust in God’s plan for Levi’s life.

Romans 15:13 says “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

There truly is a joy and peace that overwhelms you when you place your trust in the Lord.  

I don’t know why God chose to not give us the exact miracles we were praying for with Malachi. And I don’t know why God hasn’t given us our miracle for Levi, but I HAVE learned that God’s plan for my boys is bigger than anything I could ever imagine. I think about all of the people that have touched by Malachi’s life and how it has given us an opportunity to share Christ through his story.

Maybe God has something SO BIG in store for Levi’s story, and getting a trach is the first big step in his testimony. Every fiber of my being prays against the complicated life the trach would bring for Levi, and we will continue to believe in and pray for his miracle. But while we wait patiently for that miracle we will continue to trust that God’s ways are greater than our own.

The week before Levi was born I sang a special at church and the words were so powerful to me…they brought out such big emotions in me and I would cry in the car when I practiced it and focused on the message. Little did I know that these words would be even more powerful as we walk this new path the Lord has placed us on. I have been singing this song to Levi in the NICU and he listens so intently to the words.

So please continue to pray with us for a complete and total healing. And for a peace that can only come from God as we make big decisions for our son. Please pray against any and all attacks the devil may try to make on our family, and for a strength to carry these heavy things we have been given.

We will try to do a mid week update this week, and we are hoping that we will have some great news to share with you.

God bless,




Miracles For Levi

There is an old phrase “Lightning never strikes the same place twice”. While I would like to find comfort in that old myth unfortunately life is showing us that the statement is not an accurate one.

Let me flashback for a second with Malachi’s story. Malachi was born very suddenly at 24 weeks and had a long and complicated 4 month NICU journey. We battled brain hemorrhages, heart conditions, brain surgeries, eye surgeries, stomach surgeries…then we came home. And since then we have endured even more specialists, complications, diagnoses, and rough patches. We love Malachi with every bit of our beings and have never regretted fighting this battle for him and with him…but my heart breaks often and hard for him. He has the joy of the Lord shining through him but sometimes his earthly battles are hard to watch him endure.


With Levi we prayed fervently for no complications. We prayed that, while Malachi’s story is absolutely beautiful, that the story that God would write for Levi’s life would be different and unique from Malachi’s. We prayed for a smooth and easy road for him. We prayed that his bond with Malachi would be unbreakable and Levi would have a heart that beat in tune with his brother’s. We prayed that living with a beautiful and wonderful brother like Malachi would mold Levi into a very special man of God….one filled with compassion for differences. We prayed that one day Levi would boldly be able to share his brother’s testimony and how it impacted his reliance on and walk with God.


But as this week has progressed it seems that God has chosen to write Levi a testimony all of his own.

As you know from previous blogs, Levi has had a stridor since birth. The thought was that when he was born and intubated (a tube put down his throat to administer medicine in his lungs) that it caused major irritation and swelling, and in turn caused him to wheeze when he breathed. We have waited for two weeks and tried steroids, hoping that the stridor would heal and disappear. But each day he has sounded the same as the last so we did another bronchoscope procedure yesterday to see if there was something we were missing.


The pulmonologist figured out that Levi has something called paradoxical vocal cord movement with abduction paralysis. Essentially his vocal cords aren’t paralyzed, but they are functioning opposite of how they should be. When you or I take a deep breath the vocal cords open up wide allowing the air through. When Levi takes a deep breath the vocal cords snap closed keeping the air from getting to his lungs. As you can imagine this is a very potentially dangerous situation and can’t be left untreated. It is especially dangerous when he gets worked up and cries.

We are being told that the only treatment is to do a tracheostomy. This is a surgery where they put a hole in the front of his throat and insert a device that allows air to go into his lungs. He would have to keep this device until his airways are safe, which may never happen. BEST case scenario he would have a trach for several years, worst case scenario he would have one for the rest of his life.

Here is a Google images picture of a baby with a trach:


In addition to needing a trach, there is a potential that he will also need a g-tube as it may not be safe for him to send liquids down his throat. It is unsure right now as to whether he will be able to physically speak.

Lightning struck. Again.

My mommy heart is broken. I hope you know me well enough to understand that I will always love my children, regardless of any devices, diagnoses, or issues. But my heart wants to mourn for my children and their loss of normal. I want to fix it and make their paths so smooth and easy, and all I am able to do is sit on the sidelines and cheer them on as they attempt to move mountains…and every bit of my being wants to shove those mountains out of their paths entirely.


I have shed many tears in the last 24 hours. I am still unable to verbally speak to people about our new findings, and have zero desire to do so. It is almost as if speaking it concretes it into our life and I want to believe that this will not have to happen to Levi.

But there is just no time to mourn. And to take time to do so isn’t fair to my boys, who need a strong momma right now. So I am doing my best to dry up my tears and accept our new diagnosis and find the best possible route to take treatment. I have asked for a pediatric ENT to look at his test results and see if he knows of any other method to avoid a trach. We are also waiting on an MRI to rule out any neurological reasons why this might be happening.

The Carrolls simply need another miracle. A miracle for baby Levi, that his airways open up and function as they should. Will you commit this week to praying with us for a miracle?

It looks like we can expect at least another 5 weeks in the NICU, and that is if everything goes as planned. That is much longer than we anticipated so we are working at figuring out how to make this work for our family/taking care of Malachi.

Malachi is still doing well with all of the changes and he and daddy spend most of their time at the Ronald McDonald House (which is such a blessing). I am missing snuggling with him so we have a scheduled “date” each night where we sit in a chair together and play while listening to Jeopardy. He absolutely loves that show and will shout out answers after each question…and he happy dances when someone finds a daily double question.

A quick mom update- my doctors are working hard to figure out how best to treat the blood clot in my leg. I have met with my OB who has been consulting with my high risk OBs to form a plan. I will also meet with a hematologist/oncologist tomorrow morning to investigate my clotting issues as they think we have missed a rare underlying clotting disorder. Right now I am on blood thinning injections twice a day in my stomach since I am unable to take the oral pills while breastfeeding, but the injections sites are having a hard time clotting which isn’t easy to deal with on top of our other priorities right now. Hopefully my team of docs will be able to come up with a reasonable plan by the end of the week. Please continue to pray against any complications and pulmonary embolisms.

So back up to my original quote “Lightning never strikes the same place twice”…

As I looked up this question earlier I couldn’t help but think of the irony of our situation. Malachi was SUCH a complicated NICU case. But the two things we were able to avoid with him were a trach and a g-tube. We always talked about how blessed we were to not have to deal with being dependent on medical devices (aside from his shunt). And here we are 4 years later being faced with those very two things on a child that statistically should have been healthy and problem free.

As Jake and I have talked about this fact we can’t help but see that the devil is attacking our family. In addition to the attacks on my children, he is now targeting me with his fiery darts in the form of a blood clot.


As I looked at articles talking about lightning strikes, one of them said that if you want to see lightning strike the same place twice go look at a nearby tall tower during a storm. Lightning is drawn to tall things and will often strike the towers repeatedly. As I read that statement I couldn’t help but see such spiritual significance.

When lightning struck our family in 2013 with Malachi it strengthened our faith more than I ever thought possible. Malachi’s life has taught us the meaning of reliance on God, as our human hands can only do so much. It was AND IS a struggle, but through it all we have tried to stand tall. So it is surprising that lightning has found us again? Should I be mourning the fact that the devil sees the Carroll family as a threat?

Jake and I have been talking over the last few weeks about the term “righteousness”. So many sets of parents in the Bible have been given that adjective, and we talked about how we hoped that God would be able to use that word for us when we meet Him. Now hear me when I say that righteousness isn’t something that we work to “earn”, but it is a heart condition you develop when you live a life of dependence on God and follow His leading.

I want to end with this scripture as its words have brought me so much comfort today. It has reminded me that even when the lightning strikes, repeatedly, we are not to fear for we are being guided by a Shepherd who is bursting with love for my family.

Psalm 23

 The Lord is my shepherd,
I [shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.

Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
6 Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever.


Please pray with us for a miraculous healing for Levi.