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

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

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

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

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

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

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

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

Chest x-ray- came back clear

Blood cultures- clear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1 Timothy 6:6-8 ⁶ But godliness with contentment is great gain. ⁷ For we brought nothing into the world, and we can take nothing out of it. ⁸ But if we have food and clothing, we will be content with that.

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

God bless,

Leah

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We have also gotten some more beautiful smiles this week.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But on to the “why” I mentioned earlier.

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

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

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

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

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

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

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

We love you all,

Leah

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The patented Carroll boy pout:

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

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

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

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

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

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

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

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

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

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

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

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

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

Exodus 16 tells us:

⁴ 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On to other things…

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

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

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

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

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

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

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

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

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

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

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

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

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…

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

 

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