Thankful For the Fleas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘Such as?’ I said.

‘Such as being assigned here together.’

I bit my lip. ‘Oh yes, Lord Jesus!’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God bless,

Leah

 

May The Lord Give You Peace

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

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

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

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

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

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

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

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

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

Levi also got a big boy bed.

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

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

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

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

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

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He is starting to get eyelashes!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This verse has been running through my mind all week.

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

God bless,

Leah

 

 

 

 

Be Still

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

Stomach Update:

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

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

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

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

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

Airway Update:

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

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

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

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

Brain Update:

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

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

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

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

Our Family Update:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“For I have chosen you and will not throw you away. Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.” (Isaiah 41:9-10)

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

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

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

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

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

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

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

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

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

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

Much love,
Leah

Walls Of Jericho

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

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

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

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

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

 

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

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

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

Now on to the one big negative…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love,

Leah

 

 

 

 

 

 

Be Brave Little One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God bless,

Leah

The Year of the Lord’s Favor

“I just hope we are home by Christmas!”

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The second line that blows me away is:

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

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

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

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

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

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

Merry Christmas from the Carroll family!

Love,

Leah

 

Now We Wait…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Faith over Fear.

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

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

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

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

God bless,

Leah

The Oil Jar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And pray for our strength as a family.

With love,

Jake, Leah, Malachi, and mighty Levi

 

Progress!

Cincinnati, little Levi is headed your way!

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

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

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

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

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

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

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

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

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

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

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

Now here is where things get tricky….

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

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

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

So basically here are our two options:

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

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

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

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

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

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

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

Here is a sweet video of Levi:

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

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

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

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

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

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

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

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

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

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

God bless,

Leah

 

 

 

 

 

 

 

Mysteries

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

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Here are the updates I do have…

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God bless,

Leah