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:

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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.

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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.

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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!

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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…

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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,

Leah

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.

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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.

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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.

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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:

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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.

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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:

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

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

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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.

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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.

Love,

Leah

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:

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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.

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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:

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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.

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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.

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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.

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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.

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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:

https://www.godtube.com/watch/?v=1FE9FMNU

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.

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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.

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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.

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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.

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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.

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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,

Leah

 

 

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.

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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.

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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.

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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:

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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.

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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,

Leah

 

 

 

 

 

 

 

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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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,

Leah

 

May The Lord Give You Peace

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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,

Leah

 

 

 

 

Be Still

It feels like ages since my last post as I think about all of the activity that has happened between then and now. First of all, let’s all take a second to enjoy this tube free picture of Levi:
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There are several noteworthy updates from our week, so we will start with the most recent one.

Stomach Update:

This morning Levi headed to the operating room for surgery on his stomach. Surprise! This issue was completely unrelated to his throat issues and blindsided us a bit. Last week we noticed that he was not tolerating his feeds well and throughout the week things got worse. They ended up stopping all feeds into his stomach and kept them going into his intestines, but last night he still threw up 10 times in just a few hours.

After doing several ultrasounds they discovered that Levi has something called pyloric stenosis. In basic terms, there is a channel at the bottom of the stomach that food has to pass through to get into the small intestine; this channel is called the pylorus. Sometimes the pylorus gets too long and thick to function properly and this develops usually between 3-5 weeks of life.

One of the biggest symptoms of pyloric stenosis is projectile vomiting, and sure enough that was exactly what Levi was doing. A normal pylorus is 14mm long and 2-3mm thick; Levi’s ultrasound showed that his pylorus was 21mm long and 5mm thick. In order to let food pass through this channel the surgeon had to make an incision through it. They were able to do this as laparoscopic procedure so his outside incisions are tiny…just two in his abdomen and one in his belly button.

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The surgeons wanted to get him in as quickly as possible and worked him into the schedule for Sunday morning. Levi recovered well and has only required one dose of morphine. He is still needing regular doses of Tylenol but overall he is doing great post-op. They have started him on feeds into his belly and so far so good! Only one spit up all day!

Here are a few silly pictures of Levi’s sleeping poses this week:

Airway Update:

Levi was also in the operating room this week for his follow up bronchoscopy. I am so thrilled to tell you that the airway has stayed open and didn’t require any further intervention! We have been cleared by ENT for 3-4 weeks so as soon as we conquer these feeds we can get back to some normalcy. We are hoping that today’s surprise surgery will help us get a few steps closer to that goal.

Here are two sweet videos for you of baby Levi; the first shows you how wiggly and active he is and the second captures a long and loud poop haha:

Not only are we rejoicing over progress via surgeries, but Levi has been a rockstar this week with his oxygen wean. He is no longer on any form of oxygen and is breathing just fine. He is still holding great oxygen numbers, even when he is mad. He will retract a bit when he is super angry but his oxygen saturation is still 97-100!
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Here is a video of his retractions when he is upset- they are still present but not as bad as pre-op:

The ENT surgeon is absolutely shocked at how well Levi is breathing after his cricoid split. She pointed out that he has had 2 tubes (NJ and NG) down his throat for the week and he is still having zero issues- she explained that most kids who have the split surgery have really struggled breathing with just one of those tubes down their throat. She was very encouraged by this, so we are too!

Brain Update:

This week I was able to meet with Cincinnati’s neurologists and discuss the brain damage that we found in Chattanooga. They went over the MRI with me and agreed that yes, there are a few spots of brain damage on the images. They assured me that the areas are very small and that the chances of this impacting him long term in physical and mental ways was about 25%.

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They said it would be a good idea to be followed by a neurologist (no worries- we know them all haha) but that the extent of the damage would not manifest for a little while. They also said just watch for missed milestones along the way.

The most interesting thing about our conversation is that they aged the spots of damage as being within a few days of the MRI. Levi was 2 weeks old when the MRI was taken and had spent the entire time in the NICU. They had trialed room air with him at exactly one week old (when they still thought the stridor was birth related and not congenital) but other than those few hours he has been on oxygen his whole life. They said it could take just a few minutes of oxygen deprivation or desaturations to cause a spot the size of Levi’s.

But the Cincinnati neurologists are confident that the damage was not caused at birth. They also encouraged me to pursue follow ups at 6 months with Levi’s hematologist to rule out clotting issues.

Our Family Update:

Everyone in the Carroll clan is finally healthy and functioning at 100%. A lot of people have been asking about my blood clot- there are no new updates there. I am just cautious and careful to make sure to continue doing my twice daily injections of blood thinners to prevent more clots from forming. I will go back in March for a follow up to see if the current clot is gone.

Jake was supposed to go back to work (in Tennessee) this past Wednesday afternoon but his school system closed for the remainder of the week due to the cold temperatures. We were thrilled to have him around for an extra few days!

Here is a video of Malachi laughing like a wild man. He has been laughing like this when he wakes up at 4am:

Jake will be in Tennessee until this weekend when he will come home for a few days. Life is now tricky as I am trying to manage time with Malachi (as well as feeds and medications), time with Levi, time for pumping, and time for sleeping and eating. Thankfully a friend from Tennessee drove up this weekend and is staying with me at the Ronald House to help out with Malachi. It has been a huge blessing to be able to still run across the street to visit with Levi whenever possible…especially on a day like this when I had a three minute heads up before they took him to surgery. Yikes!

Our needs are met for the time being. The Ronald House provides lunch and dinner every day and there are laundry rooms throughout the house. I made it to the store this afternoon to stock up on any other needs we forsee as I will lose my consistent help after this week.

We have had lots of people offer to help with Malachi and we will definitely be leaning on those generous folks next week! We are just taking it all day by day for now as we are still trying to get a good picture of what the next few weeks will hold.

I told the neonatologist this week that my goal was to get us home by February and she told me that was “an unreasonable and unrealistic goal”. I am not going to lie- I had to step into one of the pumping rooms to shed a few tears over that comment, but now I am just resolved to prove her wrong. Game on doc.

I have been back and forth trying to decide what route to take the devotional part of this post. As I have prayed and read through the Bible this week I have struggled feeling led in a certain direction, so I will take today’s post a slightly different direction.

Let me take some time to tell you about something I am struggling with- maybe someone else is also struggling with this too.  

I am never felt so alone in my entire life. And no, this has nothing to do with the number of people around me, or loneliness due to a lack of people reaching out but it has more to do with feeling alone in my struggles. Often this loneliness hits me like a hammer…

Today it hit me so incredibly hard as I sat in an empty waiting room. I had just handed off my 7 week old son to undergo his 2nd big surgery (15th surgery if you count Malachi’s). It was a Sunday morning- a day that they reserve the operating room for surgeries that can’t wait another day- and here I sat alone.

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As I looked around at all the empty seats I found myself thinking about the world that many of you live in…a world with weekends…an opportunity for life to stop momentarily and give you a break from the stresses of life.

A world that is free from medical needs, surgeries, Ronald McDonald Houses, insurance battles, and the list can go on and on. I found myself feeling so alone as my day to day struggles and sadness are so unique and different than yours.

And my heart aches in this battle, not for my loss of normal, but for my children. Any mom reading this will wholeheartedly agree that seeing your children suffer is absolutely heartbreaking.

As I sat in that empty room today I remembered a name that Hagar gave to God in Genesis: “El Roi” which means “the God who sees”. I caught myself wondering if God saw this broken, tired, and defeated momma sitting in the waiting room?

As I thought about this name for God it served as a much needed reminder to me that even in times when I feel alone, God is very present and near. My struggles are never hidden from Him, and He IS the God who sees.

He sees my heart break each and every time I hand off one of my children to a surgeon.

He sees me crying alone in the pumping room, then trying to put myself back together before I speak with my son’s doctors about the next steps in his care.

He sees me in the air ambulance, flying over Chattanooga at midnight and staring teary eyed at the lights below, wondering why it is MY son on the stretcher headed north for experimental surgeries.

He sees the lump form in my throat each time Malachi’s seizures overtake his body in such an unnatural yet unstoppable way.

He sees me in my pain…but He also meets me in it.

“For I have chosen you and will not throw you away. 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.” (Isaiah 41:9-10)

As I read this verse in the waiting room, that first sentence kept catching my eye. It was my much needed reminder that God has chosen me for this life. He has chosen me for these boys. And He is a loving God who does not find joy in seeing my pain…but He is a God who is able to see a bigger plan that I cannot yet see.

Today during Levi’s surgery I was reading through the story of the Children of Israel fleeing Egypt. I thought about them doing their victory walk away from Pharoh and the Egyptians, feeling like a million bucks as they knew God was on their side.

Then Moses walked them to the edge of the Red Sea- a literal and figurative barrier to the Promised Land they were hoping to reach. Ouch. In a single instant that confidence melted into panic as they looked at the barriers they faced.

WOW! I have totally 100% felt that way in the last few months. I feel so strongly that God has led our family to Cincinnati- then BAM- Red Sea moments everywhere. Transports gone wrong. Voice quality struggles for Levi. Sickness. Car troubles. Vomiting. Surprise surgeries. Red Sea moments left and right. And just like the Israelites did I too found myself panicking and questioning whether we made the right decision.

But God is “El Roi”. He sees. He saw the Israelites that day, and He sees us in our struggles too.

In Exodus 14:14 Moses tells the Israelites: “The Lord will fight for you; you need only to be still.”

So in those Red Sea moments, when I am feeling alone and unseen, I will be doing my best to simply be still and remember that God chose me for this mission. And I will continue to trust that each and every barrier we encounter can be overcome by a Lord that will fight for me.

When you choose to become a child of God you are never alone. He sees. And He cares. WAY more than we like to acknowledge.

But we also have to remember that unlike our human eyes, He can see what is on the other side of the Red Sea. And when the time is right He can and will part those waters and we will walk on dry land.

As I read these verses in the waiting room today I felt overcome by the presence of God. Sometimes it just takes us simply being still to help us focus on how near He truly is to the brokenhearted.

Much love,
Leah

Walls Of Jericho

Little Levi has had a great week and is absolutely thrilled to have that vent tube out of his throat. He has healed up nicely since it was removed on Wednesday and each day he gets more and more back to his normal, happy self.

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Time for the good news: as of now it looks as if the procedure (Stage 1 of this experimental surgery) was a success! Now I say that very hesitantly because there are many factors involved here…

This isn’t a “woohoo it worked, now check that issue off the list!” procedure. We will still be going back into the operating room on Thursday to check and see if his cricoid is trying to tighten back up. If it is they will put another balloon dilator in and try to pop the scar tissue wide open again. But if they go in on Thursday and everything looks to be holding its own then we will transition into Stage 2 of the process. Since this is still a very new experimental procedure they will be monitoring him extremely closely over the next several years (Stage 2).

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That means that every few weeks (starting out, every 3-4 weeks) we will be traveling back to Cincinnati to have his throat checked, each time hoping that it will have maintained its open airway. At any point we could see (or hear) signs that it is becoming less successful, like seeing him struggle to breathe when he gets agitated or starts to become more active as a toddler. If that happens we will have to look at further surgery options, but for now Stage 1 is almost complete and seems to be successful! The next big step is letting him grow and watching what happens to his throat in the process.

We are still hoping for a great report on Thursday! If we get that good report we will be cleared to safely go home from a breathing standpoint, but will then need to pass the NICU tests to get discharged. Levi still needs to master feeds before we can ever consider going home, and we have not been able to start that process quite yet. We are still at least a few weeks away from discharge papers.

 

Levi is down to 1 liter of oxygen…this is absolutely amazing!! Prior to surgery he was at 6 liters, then on the ventilator for 10 days. Within 4 days post op we have been able to safely take him down to 1 liter, with plans to let him breathe without oxygen support very soon! Before surgery when he would get angry he would drop his oxygen saturation down from 100 to the 70s, mainly because he couldn’t catch his breath from the paralyzed vocal cords. Now when he gets angry it drops from 100 to 95.

Visibly he is also in such a better place. Before surgery he would retract his ribs so aggressively as he tried to suck in air to breathe. Now he has typical baby retractions. I took a video today so you could get a visual:

Audibly Levi does still have a stridor when he gets worked up. This devastated me as I saw this as a sign the surgery did not work, but the surgeon spoke with me today and reassured me that almost all of the kids who have this procedure done go home with some level of stridor. She said that as long as it does not impact his oxygen levels or make him retract when he breathes that the stridor is okay. That was a huge relief to hear.

Now on to the one big negative…

We knew there was a risk going into this that we would potentially be messing with Levi’s ability to produce sounds. Logically speaking it makes sense, so see if you can follow my explanation. When your vocal cords come together you produce sound. Levi’s vocal cords were always together because they were paralyzed, so before surgery he actually had a pretty loud cry. When we surgically widened the airway, creating a gap between his vocal cords, we made it harder for them to meet together again to produce sound.

It looks like Levi’s voice has been affected more than we had hoped, but as he grows this may change. For now he has a very soft and quiet cry. It is actually a mixture of sweetness and pitiful. Here is a video:

It is things like this that make me question whether or not we made the right decision for him. I am so curious what Levi will say when he is older- if he will be thankful that he was able to live trach free with a softer voice or if he will mourn over this decision we made for him.

Levi is also still coughing and it is an extremely hoarse noise, which the surgeon explained was normal as the throat area has been insulted significantly.

You would never know that this boy has been through so much by the way he acts. He is the most curious and bright eyed kid in the NICU and even the nurses talk about his disposition and how unique it is. He is such a content and sweet spirit and tries his hardest to see everyone and everything going on around him.

And he might possibly have the most expressive eyes and eyebrows in the world.

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His weight is up and down these days as we are struggling a little bit with his tube feedings, but today he weighs 5 pounds 8 ounces. His stomach is not tolerating feeds and he has been vomiting anything we put into it. So to keep him fed and content he is getting his feeds by a tube in his nose directly into his intestines, but this obviously isn’t the permanent solution we want for him. We have been x-raying his belly to try to figure out why he isn’t tolerating the food in his belly and the answer isn’t quite clear yet.

Jake, Malachi, and I got the call Christmas night that a room was opening up in the Ronald McDonald House! We packed up our things in the hotel room and made the move the day after Christmas and are so much more comfortable. The house is large with 78 guest rooms and serves a lunch and dinner each day. It takes under two minutes to walk  from the house to the door of the hospital so life just got so much easier for our family.

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It is insanely cold here in Cincinnati. INSANE. The high tomorrow is 12 degrees with a low of -3. And yes, that was a negative sign. We found a store close by and loaded up on some hats and gloves to help preserve our weak, southern skin.

Thanksgiving, Christmas, and now New Years 2017 have been spent in hotel room and Ronald McDonald Houses. For Christmas dinner we feasted on peanut butter and crackers, milky ways, and some snacks that we had been gifted a few days before from family. Jake and I aren’t big holiday people but this was definitely what we had in mind when we pictured our first holiday season as a family of four.

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But Malachi loved opening his presents and spent the day playing with all of his new toys.

I have transitioned into a very anxious momma mode. All I can think about now is getting my family back to Tennessee. And each day that ticks by makes me more and more anxious. I have not been back to my house since a few days after Levi’s November 14th birthday and my desire to be back in my home is now trumping any thread of patience I had left.

We are now at the point where we are cleared to focus on feedings with Levi and the therapists needed to do this are off for the weekend and holidays. I know it isn’t fair to aim my anger towards them for simply celebrating a holiday, but we have now wasted three more precious days. We will try to pick up the process again when they return on Tuesday but we will also have to bring things to an abrupt halt on Thursday for the procedure and Friday while he heals. Then we sit for another whole weekend.

As I sat and stewed tonight about my very intense level of impatience a certain Bible story came to mind. I looked it up and saw it with fresh eyes as I related it to my situation. It’s funny how God can give you new lenses to see old things in a different way.

I read through the classic story of Joshua and the Battle of Jericho. The Lord told Joshua that He was delivering the city of Jericho into Joshua’s hands, and that he was to march around the city with all of his armed men and the ark of the covenant ONE TIME every day for 6 days. Then on the 7th day the army should march around the city 7 times and at the blast of the trumpet the army was to shout.

In Joshua 5:10 we read: “But Joshua had commanded the army, “Do not give a war cry, do not raise your voices, do not say a word until the day I tell you to shout. Then shout!”

As I read this story I found myself relating so much with the men in the army. I picture them gearing up each day for their march around the city. Historians tell us that the city of Jericho was only about 6 acres total, but adding in the giant walls made it more like 9-10 acres. That distance couldn’t have taken the men much time to walk around.

So day after day, it was the same routine…get up, put on your armor and gear, get in formation, and march one lap. Then back to camp they went.

I can imagine some of the eye rolls and conversations that went on within that camp at night as the men grew more and more frustrated in the lack of progress. And for six days it was the same old routine.

But then that 7th day came. The men started the routine, but I can picture their excitement and enthusiasm as they realized that this was THE day. They marched their 7 laps and then the moment came…

Joshua 5:16 The seventh time around, when the priests sounded the trumpet blast, Joshua commanded the army, ‘Shout! For the Lord has given you the city!’ ”

And we all know the end of the story- those walls came tumbling down.

Jake and I were talking this week about how unexpected this new challenge was. We talked about how we have seen the hand of God in the last few weeks, but we have also seen the devil hard at work against our family. We have watched him with his brick and mortar, building walls in our lives that need to be torn down.

The stress and tension in our family on a daily basis right now is almost too much to bear. Malachi’s severe needs, Levi’s physical needs, financial needs, logistical needs, and the list goes on and on. The devil is taking these things, brick by brick, and using them to build walls in our family and in our marriage. We have encountered walls before, but none of this magnitude and strength.

As I read this story I couldn’t help but ask the question that I am sure many of the men asked…why did they have to wait?

Here is where a Bible scholar would wow you with some awesome answer about Biblical numbers and their significance. But since I am not a scholar, I will give you the less profound reply of: they chose to walk in faith.

To me right now, the number 7 does not matter. What matters is that they trusted God to do what He promised He would do. They got up each day and prepared to walk in faith…as ridiculous as they may have felt…and how impatient they must have been.

As much as I like to pretend that I am alone in my suffering, the reality is that many of you are facing your own walls that need to come crashing down. They may be tiny walls that the devil has just started foundations on, or massive walls that he has been constructing for years. And there is no denying how discouraging each day can be when you look at the size and magnitude of these battles we are facing.

A friend sent me a verse this week; Habakkuk 2:3 says “For the vision is yet for the appointed time; it hastens towards the goal and it will not fail. Though it tarries, wait for it; it will certainly come and not delay.”

I am going to do my best to focus on is that 7th day for the Israelites…the day when Joshua led them in a shout of victory as God gave them the city and allowed those walls to crumble.

I sincerely wish that God had sent an angel to me to tell me what day we would be our “7th”. But since that didn’t happen, I will have to make the decision to walk blindly in faith. To get up every day, gear up for my battle, and walk boldly into the NICU knowing that soon God will give me the command to shout in victory.

There is a reason we are still here. It is in God’s plan- a plan He has chosen to not reveal to me quite yet. So like the Israelites and Joshua did, I will do my best to trust that God’s timing, as annoying as it sometimes might feel to an impatient Leah, is perfect.

But oh how you will hear us shout in victory when the time does come. We may not fully understand why God is continuing to allow those walls to stand, but we will trust that when the time comes, not one brick will be left on another.

Watch out walls of Satan, because the Carrolls are circling.

Much love,

Leah

 

 

 

 

 

 

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.

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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.

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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).

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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,

Leah

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.

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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.

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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.

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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.

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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.

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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: jacobandleah@gmail.com

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!

Love,

Leah