Disfigured Yet Hopeful

This was a week of many firsts.

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Monday I tackled my first solo day of appointments with the boys. We had a 9:20 and an 11:20 for Levi an hour away in Chattanooga and a 2:30 for Malachi about 45 minutes away.

It took me about an hour and a half the night before to pack our bags, which truthfully could have lasted us for 4 days in the wilderness haha. But I wanted to make sure I thought of every potential situation we would encounter. When we arrived at the hospital I strapped each of them (and Grover of course) into the massive stroller we adapted for the boys and we were on our way!

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Appointment one was for Levi’s g-tube. We met with a surgeon who showed me how to change it out and replace it if it ever came out. The stomach heals impressively fast when the tube comes out- you have to get it back in within four hours or the hole closes up and requires another surgery to get the tube back in. He said that his g-tube site looks amazing and for every 100 he puts in, he is lucky if 10 of them look as good as Levi’s. I sheepishly smiled like it was something I had done, but the reality is that we are just blessed! Oh the things special needs moms take pride in…

This surgeon is the same one who has done nearly half of Malachi’s surgeries, including one life saving one when he was two weeks old. It was like an odd little reunion but for a different kid. While we love the man, I was very excited to hear that unless there is an emergency there is really no reason for us to keep seeing him on a regular basis. Specialist #1 checked off the list.

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Next we headed across the hospital to meet with Levi’s hematologist. Background info: shortly after Levi was born he had an MRI done on his brain to check for a malformation that would cause his vocal cords to be paralyzed. While we didn’t find the malformation we did discover two small areas of brain damage caused by a hypoxic ischemic event. That means either he went without oxygen for a period of time (highly unlikely as he was in the NICU and on oxygen support the whole time) or he had a blood clot that traveled to his brain.

Before we left for Cincinnati we had the hematologist check my blood to test for any clotting disorders. Levi is still too small to test so we thought we would rule out any issues on my end. I had been tested for these issues prior to pregnancy and everything came back clear, but the doctor wanted to spin them again to see if there was something they had missed.

At our appointment on Monday the doctor told me that everything came back clear again. Part of me is happy to have it verified that I do not have a clotting disorder (in spite of 3 blood clot issues), but the other part of me doesn’t like it that we don’t have a clear answer for Levi’s brain damage causes. But either way, unless another issue arises the hematologist decided that we do not need to be seen on a regular basis. Specialist #2 crossed off the list. BOOM!

We headed down to the cafeteria to get momma some much needed caffeine and to find a quiet place for me to feed Malachi. Once we were all recharged, we packed up the van and headed to Malachi’s therapy appointment across town. Malachi was a champ on his horse, in spite of not being 100% back to normal from his sickness last week.

Call me cocky but I was thrilled at how smooth our first big day went! We got allllll kinds of funny looks and barely fit into the elevator, but by golly we succeeded! I had one little old man literally circle the giant stroller multiple times as we waited for the elevator, fascinated by our set-up. He had a shocked look on his face and squatted down (yes, literally) to look under the stroller and said “Whew, I thought you had a third one under there too.” I didn’t quite know how to respond to that so I just smiled.

The rest of the week is a blur. Malachi went to school on Tuesday and Levi and I headed into town for our first big grocery trip- I hadn’t been to the grocery for 5 whole months and couldn’t wait to restock the fridge and actually cook. But shortly after we got there I got a call from the school that Malachi had already had a few big seizures that lasted longer than 2 minutes each. We quickly headed that way to pick him up.

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Malachi is feeling so much better but is having trouble with some lingering mucus. When you or I have mucus, we have the ability to cough it up and manage it well. Malachi doesn’t know how to do that so it sits in his throat and he panics. His brain tries hard to process what to do and when his body can’t do it the discomfort sets him into major seizures.

Wednesday his seizures were still going strong so I kept him home with me. Thursday he was ready to go but someone in his classroom went home with a tummy bug so he also missed Thursday and Friday in an effort to steer clear of those germs.

Malachi has really enjoyed the extra time home with Levi and wants to be close to him at all times. He has been trying so hard to get his hands on him this week and after 25 failed attempts to grab his hand, Malachi finally succeeded. I saw it coming and grabbed my phone to take a quick picture. This moment lasted about three seconds but to Malachi it was glorious.

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We have had some beautiful weather lately so we took the boys on their first walk this week. We went up the road to see the coon dog and Hank the pig.

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This seems over dramatic but I have been overwhelmed by the beauty we live in, and particularly fascinated by the birds. In Cincinnati I didn’t get a chance to see nature so being reunited with it here has been refreshing. We have been watching the sunset from the back porch this week and it has taken my breath away.

We have also been cashing in on some of our LaundryDoo loads! Thank you to everyone who donated a load to our family. I leave these bins on the front porch for pickup and they are washed, folded, and back on the porch within 24 hours. Best invention ever! And what a blessing.

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We have also been extremely blessed by our community in the form of food. We have had several families drop off meals throughout the week. Even today we came home from church to find a bag of hot home cooked food on the front porch waiting for us.

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Nighttime has been interesting. During the weekdays I take night duty for both boys so Jake can get some rest. We have Malachi on a video monitor so I can watch him for seizures- he usually has one within two minutes of waking up (around 3am) so we try to get in there pretty quickly. I also have Levi’s pulse oximeter on so I can watch his heart  rate and oxygen saturation. Add onto that his feeding pump that alarms often and the fact that Levi’s breathing alone is a huge distraction. It is not quality sleep for momma but it is better than nothing. I am living on prayers and caffeine.

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There are nights we are up and down several times an hour, and usually by morning I find myself smashed in the middle of two boys in our king sized bed…too afraid to sleep for fear Malachi will have a seizure and smother himself on a pillow and too afraid of rolling over onto Levi; co-sleeping freaks me out. This week I laughed to myself as I felt like the icing in the middle of an oreo. But as long as they are each getting the rest they need, I am choosing to be content.

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We were all able to attend church this week, and it was just what I needed after a week being cooped up at home! There is always an element of chaos with every thing that we do, but some outings are worth the crazy.

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Of course all of those late nights in the middle of the oreo cookie have led to some pretty in depth conversations with God about my boys.

I have been thinking a lot about Malachi’s journey. I remember bringing him home from the NICU, confident that everything the doctors told us about his brain was going to be wrong. God was going to heal my son. He was going to defy the odds, and we would give God all the glory. Miracles for Malachi, right?

My boy would walk. My boy would talk. My boy would be a typical child with no signs of his rough start.

I can’t tell you the specific day that I realized that God had different plans for Malachi. But I can tell you that I have struggled immensely with disappointment that God didn’t completely heal my son like I expected him to. We have watched Malachi’s body become more disfigured over the years, as his brain tells it to do things it isn’t meant to do. We have watched his little brain be overwhelmed with seizures. We have watched a lot of the the things those doctors predicted come true.

The disappointment is there.

But in addition to that disappointment there is a level of excitement, curiosity, and wonder as we watch and wait. There is a reason that Malachi was born this way, and there is a reason that his healing has not happened yet. And Jake and I continue to expect God to heal him.

Acts 3 tells a story about Peter and John walking up to the temple and finding a man who was “lame from birth”. This man looked at the ground, humbled by his condition, as he did each and every day, holding out his hands expectantly at the disciples as he asked them for money. The Bible paints such a clear picture of the scene.

“Peter looked straight at him, as did John. Then Peter said, “Look at us!” So the man gave them his attention, expecting to get something from them. Then Peter said, “Silver or gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, walk.” Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.”

From here, the Bible tells us that Peter was able to tell the crowd about Christ and His power.

“By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus’ name and the faith that comes through him that has completely healed him, as you can all see.”

As I reflected on this story, I saw it with fresh eyes as I stared at my own sweet son as he slept. I looked at his disfigured legs and wondered if the man from the Bible had the same disfigurements.

 

It would be physically impossible for Malachi to walk. Literally impossible. His ankles and feet turn out and up, we aren’t sure he has kneecaps, and both of his hips are entirely out of their sockets. Because he has never put weight on his legs, the bones at his hips never formed the grooves like they should. Every part of Malachi’s legs are marred beyond repair.

I can’t help but think that the man at the gate that day was the same way. His legs were atrophied from never being used. His ankles and muscles were weak and non existent. He was likely a mangled mess…just like my sweet boy.

But God chose to heal him that day. And I fully believe that God will heal Malachi too. One day Malachi will run. One day he will run so hard that his little cheeks turn red, and he will ask “Did you see how fast I was mom?”

And while each day that this doesn’t happen I experience a tinge of disappointment, there is also a level of excitement as I wait in anticipation for that moment to come.

Malachi’s “day at the gate” may not happen here on earth, but I have faith that it can. If God can heal this grown man in an instant, I am confident he can heal my 5 year old son. And I am confident that Malachi will be running laps on the streets of gold in heaven. His ankles will be straight, his knees will bend, and he will be walking and leaping and praising God.

As a Christian we are called to have faith. But it has to be a faith that stays strong, even through disappointment. Because of that faith, we are able to experience hope.

And it is that hope that keeps me smiling. Expecting, anticipating, and smiling. I can’t imagine going through our lives without the hope that Christ gives us. It brings me a peace that I cannot explain.

Tonight I am thanking God for fearfully and wonderfully making Malachi, as it says in Palm 139.

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

One more side note- I took the youth group to the movies tonight to watch “I Can Only Imagine” and it is an excellent movie! It has great lessons on forgiveness, even when it is difficult and how God can change a dark person into a completely new being. It captivated 22 teenagers this evening, so I think it is safe to say it was a hit for their age group too. If you are looking for something to do this week you should check it out.

Pray for our family this week as we raise the bar to 3 appointment days! This could get interesting!

Have a blessed week!

Leah

 

 

 

 

 

 

I’ve Been Thinking

Let’s start with the worst news- the Carroll family is sick. Ughhhh. But let’s brag on God for a bit because the only one who has avoided this nasty cold is Levi. There is literally no way that God isn’t involved in that. Seriously. Malachi spreads germs like a maniac…just this morning while we were sleeping nose to nose (the only way he will rest when he is sick…yep…it is disgusting) he coughed so hard his mucus nailed me in the eyelid. He has impressive trajectory for germ flinging. And sorry for that visual.

Even through the sickness Malachi is being his silly sweet self, laughing over the tiny things in life like chicken:

Here is a sweet little video clip of the boys playing together a.k.a. unknowingly sharing germs before mommy realized Malachi was sick.

We have been changing shirts between holding kids several times each day, using hand sanitizer, and trying to tolerate masks. All the while being pretty down for the count ourselves. I have been bathing the boys as much as possible since neither can really wash their hands at this point.

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But let’s back up to the middle of the week when Levi and I made the journey to Cincinnati for his throat scope. He very generously gave me a whole 3.5 hours of sleep the night before we left. I prayed most of the drive there, asking God to give me energy and He absolutely did. Levi slept most of the drive there and when he was awake played contentedly in his seat. We made it there in about 6 hours and checked in right on time.

I bought some new sock puppets for Levi’s feet and he is so entertained by them. I thought you might like to see a video of him playing with his new friends:

The drive itself set me on edge the closer we got to Cincinnati. I tried to eat something on the road but was so nauseous from the thought that I was taking my son somewhere where I knew they would inflict pain on him. I tried to reassure myself that it was for his own good, but my mind kept saying “but is it necessary?”

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Returning to Cincinnati after being inpatient for so long was a very different experience. In some ways it was much easier and in others in proved to be a challenge emotionally. When he was in the NICU these procedures were done quickly and he was taken back to his room to recover. This time around we waited in a tiny pre-op room for a few hours before he went back and then I met up with him in recovery.

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There were a few barriers for me this go around that I didn’t anticipate. I saw a few faces that I have unconsciously paired with bad things. Like times he was intubated and I didn’t believe he needed to be. I would pass these faces and so much bitterness would well up inside of me and I wanted to tell them to not go near my son. One of the other unexpected hard parts for me was pushing his empty stroller into the OR waiting area. Yikes.

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The surgeons came into the pre-op room before taking him back and Levi was having a meltdown. During these episodes he sounds terrible with his breathing so I was a little curious how they would feel. They looked at his retractions and work of breathing and said “He sounds bad but looks so much better breathing than before the last surgery!”

The procedure went well and they didn’t have to do any dilations. His airway has maintained its openness which was great to hear. They think that his epiglottis might be growing back up again- if you remembered we trimmed that down a few surgeries back- and we might need to trim again next scope. But overall a great report and we don’t have to go back for 6 weeks!

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We made it up to our room on the complex airway floor by dinnertime and Levi was not a happy boy most of the evening. I was still running on my 3.5 hours of sleep and hadn’t been able to eat anything all day; my strength was fading as I rocked him for hours and hours. I pleaded with God for a night of rest for him and I and by 11pm he was sound asleep. We managed to piece together a 7 hour night which is more sleep than I have gotten in weeks!

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The drive back took about 8 hours due to some accidents along the way, but Levi again did wonderfully. When I stopped for gas I noticed something…let’s see if you can spot the issue.

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Little stinker. I don’t know how long he stayed like that, but his oxygen saturation was at 100 the whole time.

I tried to keep my mind active for the 14 hours in the car and did a whole lot of thinking. A whole lot!

Before I dig into the deep stuff I do want to share a praise with you. One of the things we have been concerned about is Levi’s voice. The more we widened the vocal cords the less likely it is that he will speak. But this week he has been trying to vocalize and we are thrilled. Here is a video clip:

Okay back to my train of thought. As we expected, the comments have been rolling in from well meaning people…

“I don’t know how you do it!”

“You have so much patience!” (side note- I absolutely do not. If walls could talk they would have some stories to say about my lack of patience and my potty mouth during those times. This is something I have to pray for DAILY.)

“You have your hands full!”

As I drove I thought a lot about our current situation. And as I processed these comments I realized that at some point, maybe even from the beginning, people looking in started to see our life as a disaster. Those poor Carrolls.

And as I processed that I had this strong desire to change the way that people look at our family. Instead of pity and sadness, my desire is that people look at our family and see the hand of God. And they see how many ways we have been blessed!

One of our family catchphrases is: Uniquely Blessed.

What the world looks in and sees as broken and not ideal, we choose to see as a unique blessing.

We feel so extremely blessed that both of our children were born in a country that could give them lifesaving care. And even an age when those measures were attempted. If either boy was born even 50 years ago there is a very high chance that Malachi, Levi, and myself would not have lived.

We feel so blessed that God has given us the opportunity to be His hands and feet to both boys as we meet their daily needs. We are given the unique chance to practice loving others more than ourselves and allowing their needs to supersede our own.

We feel so blessed to be living a life that REQUIRES us to daily rely on God. I have to daily ask Him for wisdom, strength, and patience to get through each and every day. Sometimes that happens in a quiet, prayerful tone but more often than not it comes as a loud and exasperated scream in moments when I need it most. My prayer time before children used to be so generic, and now I am able to make firm requests of God and watch Him provide those needs.

I saw this funny little picture this week and have laughed and laughed at its accuracy for my family:

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We feel so blessed that God has equipped us to be parents to such special children. God didn’t give us children we were prepared for, but He has given us the tools we have needed to raise and care for them.

What exactly is the definition of a blessing? Any guesses?

It is actually defined as “God’s favor and protection”. Is the Carroll family “blessed” according to this definition? UNDENIABLY SO!

The Hebrew word used in the Bible for blessing is “esher” which translates to “happiness”. Process that for a minute. Is the Carroll family “blessed” according to this definition? ABSOLUTELY!

While it is so easy to look in on our lives and focus on the negative, Jake and I desire for you to peer in and spot all of the ways we are uniquely blessed.

God has shown us His favor. God has shown us His protection. And oh my, are we saturated in happiness.

There is a verse that played in my head over and over while I drove. I have said it to myself hundreds of times this week as I cling to its words.

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I can’t seem to get my mind off of the first line.

No disaster can overtake you

As I said this line over and over this week I felt the presence of God, as though He was speaking this directly to me. I have had so many Holy Spirit moments this week where I feel the presence of God so incredibly strong. It has brought me to tears.

“Leah, no disaster will overtake you. I have ordered my angels to guard you wherever you and your sweet boys go. You have no reason to fear. Walk with confidence in me.”

God doesn’t promise us a disaster free life. We have been ransacked with disasters. But like He says, not one of those can overtake us.

2 Corinthians 4 says this:

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 

WOW. The Carroll family has been pressed on every side, perplexed, persecuted, struck down. Life has been disastrous.

BUT GOD.

Through all of our disaster, God has rescued us from getting crushed, kept us from despair, not abandoned us, and kept us from being destroyed. My God has done that for me.

I can’t think of anything more encouraging and beautiful than knowing He loves me that much. And while the disasters come, and boy do they find their way to our family, I find comfort in knowing that no disaster will overtake us.

Oh goodness I have so many other things just bursting inside of me to tell you but I will save them for another day. I pray that this week you will be able to look at your disasters and be able to see the destruction, but also see those blessings, knowing that God protected you.

And I pray that you are able to find all the ways in your life that you are uniquely blessed.

Much love,

Leah

 

Road Trip

On Monday we tackled the boy’s pediatrician visits like a bull in a china shop. We tried to prepare for every worst case scenario with extra food for each boy, extra tanks for oxygen, plenty of outfits for both boys and parents. In the hour and a half appointment poor Jake had to run out to the car at least 6 times to grab something we had forgotten to bring in. But WE DID IT! Small successes.

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One of the things I have always dreaded the most is filling out paperwork at doctor’s offices for Malachi. They give you one page and expect it to be suffice for the answers to the 25 questions they ask…previous hospitalizations, previous surgeries, specialists, current medications, etc. It takes tiny handwriting and at least 30 minutes to fill them out for Malachi so several years ago I started printing out a summary of this information on one sheet. When we go to appointments I simply hand them an updated copy and they put it in his file.

I took the time to go ahead and create one for Levi as well, and boy am I glad I did! The chaos of managing both children in a public waiting area is enough stress, let alone having to remember and record 28 procedures, numerous hospitals stays, and 14 medications between the two of them.

The visit went decently. Levi weighed in at 10 pounds 2 ounces and Malachi at 25 pounds 8 ounces. Malachi has significantly lost weight over the last several months, something that I am really feeling guilty about. The GI doctor is the one who calls the shots on his weight and feeding goals, so I didn’t get lectured at the pediatrician but am expecting to at the end of the month with GI.

 

We have officially been approved for nursing hours for Levi! This is huge news as they have allotted us the maximum amount (500 hours a year). We are working to find an agency that will come out to our area and help, and we are thinking through how to best make that work for our family.

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Based on this week it seems that having the nurse come at night would be the biggest help! Jake went back to work and I started the midnight tango with the two boys. When one would go to bed the other would be wide awake. The few times I could get both of them to sleep at the same time would last about 20 minutes. Most nights I couldn’t help but laugh out loud and the chaos. Malachi would be seizing, Levi would be screaming. Or Levi would be throwing up and Malachi would be having a full fledged meltdown. Or we would all three just be wide awake in the bed, laughing and smiling…the boy’s realizing that together they had conquered this whole bedtime plan mom had sheepishly thought she could pull off.

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Each morning around 9:30 I would have both boys fed, ready, and out the door to take Malachi to school. That process went oddly smooth, a small victory for mom! Malachi has been SO THRILLED to be back at school with his friends and teachers. It is all he wants to talk about at home. And it makes me feel better to know he is back in his therapies and routines. He also got to ride his horse again this week while little brother watched! We also got him fitted for some much needed equipment, like a new bath chair and special needs car seat.

Levi is still a wild man who loves to move. If you watch this video you will see exactly what I am talking about haha:

Malachi picked out a dinosaur for Levi in Ohio and he has been snuggling it all week. He especially likes to rub his eyes against it when he is sleepy.

Unfortunately Malachi woke up this morning with a runny nose and all the signs of a cold. When he gets sick his seizures increase in intensity and frequency and he cannot control mucus so he throws up his feeds. We fight through sicknesses, trying desperately to keep him from getting pneumonia and requiring a hospital stay. So far this one seems to be mild, but we are watching him extremely closely.

It is a constant discussion at our house whether risks outweigh benefits for things with Malachi. School is something he looks forwards to and he is also able to receive almost all his therapies while he is there. They put him in his stander to work on weight-bearing and help him with fine motor tasks. There is also the social aspect, which he craves! Yes, it is a risk sending him but we take precautions like taking him in later so they have time to evaluate the health of the classroom and call if there is any sickness. They are also keeping him in the classroom instead of taking him into public places like the cafeteria.

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Decisions when parenting a special needs child can be so difficult. We want to give him the best quality of life possible.

Anyway…

Things we are grateful for this week: friends that have brought meals and adult conversation, the diaper chute we built into the new house, caffeine….lots of caffeine, laundry machines, tile floors that can be sanitized easily, the Laundry Doo service, and of course being together under the same roof!

I even had some clothing needs and two very kind friends went out as my “personal shoppers” and filled those needs for me.

We even had a visit from Hank, the neighbor pig. Yep- you read that right- welcome to Tennessee!

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This week Levi and mom will be headed to Cincinnati for another throat scope procedure, which will require at least a one night stay. We are praying over little Levi that he doesn’t catch whatever Malachi seems to have and we are practicing insanely good hand washing to attempt to not cross contaminate the boys.

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Even before the sickness we had decided that it is best to leave Malachi with Jake in Tennessee since he wouldn’t be allowed to stay overnight in the hospital with Levi and I. And now that Levi is just learning what having a full time mom is like, I just can’t bear the thought of leaving him again to go to a hotel. It looks like they have blocked off the operating room for him around noon on Wednesday, and since we don’t sleep anyway I am aiming to leave in the middle of the night and make the drive straight there Wednesday morning, and come back as soon as we get discharge papers on Thursday.

I am expecting them to have to do a balloon dilation to his airway. He is much louder this week which tells me that his airway has healed closed a bit smaller than before. His retractions still look mild and his oxygen saturation levels are still good.

This week I was able to jump right back into teaching our youth group and it refreshed my soul. If you are new to the blog, Jake and I are youth directors at our church; being away from our teens these last several months has been so difficult. God has laid some things on my heart that He wants to share with them, and there is nothing more exciting than watching them grow closer to God.

I missed my church family more than I realized and being back with them has been one of the highlights. Attending church does not make you a Christian. But as a Christian I desire to be around others that share the same hope in Christ that I do- it is just so refreshing! If you aren’t involved in a church family I want to encourage you to shop around to find the right one for you, and then plug yourself in. It is easy to be a Sunday morning only type person, or a twice a year for holidays attendee, but you are missing out on so many blessings!

This week I have been struggling with fear. My sweet family has been under attack and I just can’t shake the thought that we will be attacked yet again. There is a constant lingering fear that something bad it going to happen with Malachi’s health, or we will be in a life threatening car accident as we head to Cincinnati, or Levi’s airway will close too tight before we are able to get him somewhere for lifesaving help. The fear is finding its way into my thoughts almost hourly.

Nothing can cripple faith more than fear.

But we are still choosing faith over fear as I have to remind myself multiple times a day. In those moments that cripple me, I have to take a deep breath and pray protection over my family. I also have had to remind myself this week that for every mountain we have faced, there is an innumerable amount of mountains God has lovingly directed us around.

So my prayer this week comes from Isaiah 45 when God told Cyrus: “I will go before you and will level the mountains.”

Please pray with me that God levels any mountains that we will face this week, including Malachi’s sickness. Pray that my faith can be greater than my fear. Pray for traveling safety for Levi and I, and a great report from his surgeon.

God bless,

Leah

 

 

 

 

Cuddles & Chaos

This week was an interesting learning experience for us as we adjusted to life at home as a family of four. I am not going to lie, this has been much more chaotic than I imagined but like all other challenges we will rise to the occasion…we just may need a little more time to do so with ease. I went a little photo wild this week so bear with me.

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Levi’s equipment is proving to be the most challenging part of the transition, so I figured I would walk you through it all. He is still on a very tiny amount of oxygen, so to move him from anywhere other than the 5 foot area he was in would require us to wheel two large tanks of oxygen on a cart, an IV pole that holds his feeding pump and feeds, and his pulse oximeter. I couldn’t move all of that plus Levi safely so we would move everything a few feet at at time until we got where we wanted to go. After a few tries at that process we decided that Levi and all his gear was going to stay parked in the living room and we would just make it work.

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I called the oxygen supply company and they came out to put an oxygen concentrator in the house, a large machine that converts air into breathable oxygen for Levi. Attached to that large machine is a 50 foot nasal cannula, so now we can move pretty much anywhere upstairs in the house without having to wheel tanks.

 

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So now when we move him from one room to another we just have to carry him and his IV pole with the feeds. It is still a challenge but not as difficult as it used to be. When we leave the house, we now have a small backpack to carry his tanks in, and each tank lasts about 2 hours. So we have to make sure to pack enough tanks to get through a worst case scenario with him.

 

We will also pack his feeds and pump into another small backpack that will go with us when we travel. Levi gets fed 20 hours a day right now and we choose when we want his 2-two hour windows to be. Obviously if we can time them with an outing we try, as it is one less piece of equipment to try to carry around.

We are doing “spot checks” with his pulse oximeter throughout the day and leaving him hooked to it at night so it will alarm if something goes wrong. The pulse ox measures his oxygen saturation and his heartrate and is set with parameters for when to alarm.

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Levi definitely has his days and nights mixed up, and likes to sleep away most of the day. We are going to work at correcting this but he hasn’t been super cooperative for those attempts haha.

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And he is the wiggliest kid I have ever seen. He is like a wind up toy, always moving. In this video you can also hear his current stridor. It has gotten slightly worse since we have been home, so we are keeping an eye on it. We will go back to Cincinnati next week anyway for an MLB, so unless he is dropping his oxygen saturation or working harder to breathe then we won’t worry.

We are also getting to know him pretty well and seeing his personality more than when we were in the hospital. He absolutely LOVES movement…his swing, his rocker, his bouncy seat. He does not particularly enjoy being held, especially when he is getting sleepy. But if you do hold him, it is IMPERATIVE that you master the butt pat.

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Levi is a gassy little boy who spits up frequently. We go through LOTS and LOTS of laundry. A local friend signed us up for a service where a company will pick up a load of laundry off your front porch, wash it, fold it, and bring it back within 24 hours! We have had several friends donate a load to our family, and the owner of the company even agreed to match all donations! At this point, we have enough credit for three months of laundry service! Absolutely amazing and humbling.

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Nights have been the most interesting challenge for our family. Malachi has been going to bed around 10:00 and gets up at 3:00. We usually stay up with him until 5:00 and if he is still awake we lay him in our bed and let him watch cartoons while we go back to sleep. Levi has been up and down all night long, sleeping no longer than an hour and a half at a time. All four of us typically end up in the living room together for a few hours each night. Our mantra this week has been “divide and conquer” and we each just take a kid, but Jake will go back to work this week and things will have to change.

Let’s talk about Malachi. Oh my goodness that little boy has melted my heart so many times this week. He understands so much more than we expected and adores Levi. We let him “hold” Levi at least once a day and he lives for those moments. He  isn’t very gentle when he is near Levi which is a concept we weren’t sure that he would understand.

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He wants to be near him at all times, and even threw himself out of his seat (for the first time ever) trying to get over to him when the song “Rock-a-bye Baby” came on. I was sure he would have a black eye, as he landed on his face, and when I ran over to pick him up he was smiling from ear to ear, proud of his accomplishment to get out of his seat. I didn’t know whether to be mad at him for endangering himself or proud that he moved his body in such a purposeful manner!

In addition to being in love with his baby brother, Malachi is also ecstatic to be home. I took him to his horse therapy on Monday so he could ride his horse and we are slowly getting back into his routines. Today he and I went to church and he was in anticipation the whole ride there.

Jake put together Malachi’s birthday gift (from February) today and Malachi loves it! It is a giant swing for the front porch that is built up on the sides so he can stay in it safely.

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We kept Levi in most of the week but attempted leaving twice to practice getting his gear out. After one outing I asked Malachi if he wanted to go and he said “yes” with his sign language. I asked him if he wanted to go home and he adamantly said “no” with his signs. So we talked through some options and he made it clear that he wanted to go to the park with his daddy. So of course, that’s where we went!

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Tomorrow we will attempt our first appointment day with 3 appointments between both boys. It will require us to be on the road for a total of about 5 hours and thankfully Jake is off tomorrow. The rest of the week is devoted to me figuring out how to care for both boys while maintaining some level of organization and sanity. I have already stocked up on whiteboards and have them all over the house.

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Speaking of medications, I was able to make it to my hematologist this week to follow up on my blood clot. I have been on blood thinning injections twice a day for the last four months and he feels relatively confident that it is safe to stop them. I will need to keep watching for new signs and symptoms of another clot but for now I can stop the medication. Praise the Lord!

Alright, time for some Leah honesty. This past week has been refreshing- mentally, physically, emotionally. These last 5 months have been brutal on me in so many ways I never thought possible. We have been through hundreds of days in the hospital with Malachi, numerous surgeries, procedures, and hundreds of appointments. But I have always been able to keep my stress under control.

I wasn’t ready for a round 2. I wasn’t ready for more bad news and for more complications with a second child. And when it hit my body just shut down. I couldn’t eat, I couldn’t sleep, and I have never shed more tears in my life. Every single day there were several moments that I came close to passing out and would have to sit down. Every single day had an undertone of lingering nauseousness. Each day I had to find a place to hide and would let the tears flow. It was a level of emotional exhaustion I never imagined existed.

I saw this video clip this week and it was eerie how unbelievably relatable it is. I don’t like being dramatic, but each and every moment in this ad is one that I have lived through in the last few months:

Being back at home has lifted that cloud off of me. I am actually getting the chance to enjoy being a mother. I am taking care of my son without a video camera watching my every move, or having to ask for permission to bathe him. I can pick him up EVERY TIME he cries, and I can spend every second next to him, attending to his needs.

So while this new life is chaos and hilariously unpredictable, I LOVE IT with every fiber of my being.

Today is Easter, and last night as I rocked my baby I started thinking about Mary, the mother of Jesus. I thought about all that I had been through, and it all pales in comparison to having to watch your son be beaten, nailed to a cross, and murdered. I have had to watch both of my sons endure some very hard and painful things, but they were all done in attempts to preserve their quality of life. I can’t imagine watching my son be put to death…

Did she know? Did she know that he had the power to remove himself from that cross, but made the decision not to? I can’t imagine the broken heart she had that night as she walked away from her son’s broken and lifeless body.

I am sure she was confused. Why would God have trusted her to carry, raise, and love His one and only son only to watch him die a criminal’s death. I am sure she was thinking that there must have been a mistake…this isn’t how it was meant to be.

But that is EXACTLY how it was meant to be.

Romans 5:6-8 “You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.”

It still blows my mind. Christ did that for you and I- as unworthy, disgusting, and sinful as we sometimes are. Sometimes we have to endure some pretty terrible things in life that are out of our control. But the most amazing part of the whole story is that Christ made the DECISION to die for our sins and did so willingly so that we could have a personal relationship with God.

Many people ask me about my faith and often wonder how I still have a relationship with God after all we have been through.

The answer is easy for me…God is good. All the time. And He desires a relationship with each of us SO much. If He loves me enough to send His only Son to die for me, then why would I ever doubt His love for me?

So even in my worst moments as I watch my children suffer, I still firmly believe in my heart that God is good. ALL THE TIME. And the things we are struggling through aren’t from Him. Those moments that the devil sends my way only push me into a deeper relationship with God.

I don’t know that I make much sense these days with my words. But I hope your take away from all this is the reminder that Christ’s death allowed each and every one of us can have a personal relationship with God. I hope that you see how valuable and amazing this gift was for us.

Both of the boys just fell asleep so that is my cue to wrap this entry up and head to bed…it is likely for just 20 minutes until Levi wakes up again, but by golly it will be a glorious 20 minutes.

Thank you for checking in on our family and for continuing to pray for us as we navigate the newness of our situation.

Much love,

Leah

 

 

We Are HOME!

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

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

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

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

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

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

We are one happy family.

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

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

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

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

Now for some medical updates.

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

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

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

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

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

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

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

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

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

Game on!

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

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

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

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

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

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

Plus these boys have more mountains to move!

Much love,

Leah

 

To Be Continued…

And exhale.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love,

Leah

 

 

 

Buckets of Water

And now we wait.

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

“It went surprisingly well!”

And I exhaled for the first time all day.

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

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

 

 

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

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

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

 

 

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

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

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

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

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

 

 

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

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

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

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

 

 

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

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

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is what happened:

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

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

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

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

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

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

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

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

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

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

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

Because LOVE NEVER FAILS.

 

Much love,

Leah

 

 

Failure.

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

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

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

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

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

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

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

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

 

 

And one silly little video for you:

 

 

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

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

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

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

Failure.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Much love,

Leah

Preserving Normal

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

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

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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!

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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:

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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!

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

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

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

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

God bless,

Leah

 

 

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