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
    

 

Ephphatha

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

We absolutely did not see this coming. At all.

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

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

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

Things just got more complicated.

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

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

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

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

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

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

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

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

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

 

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

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

Changing gears now…

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

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

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And here is a sweet video:

 

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

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

 

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

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

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

Ephphatha- Be opened!

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

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

And finally on to one final note…

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

First Baptist Church

ATTN: Levi Carroll

PO Box 326

Benton, TN 37307

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

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

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God bless,

Leah

Pieces of the Puzzle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God bless,

Leah

 

 

Miracles For Levi

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

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

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

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

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

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

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

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

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

Lightning struck. Again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Psalm 23

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

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

 

Please pray with us for a miraculous healing for Levi.

Sincerely,

Leah

 

And We Wait…

All week long I have been taking notes in my phone about the uplifting things I want to share with you, and we will definitely get to those but frankly I am in a pity party mood so allow me to get the frustrating updates out of the way…

Levi is still stable but not really improving at all. Not getting better but not getting worse. His stridor (wheezy breathing) is still very bad and the doctors can’t seem to pinpoint exactly why it is taking so long to heal. A typical stridor is usually healed by now. We are going to meet with pulmonology again this week to pick their brains.

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After an aggressive change in oxygen levels, we have decided it is best to park Levi at 4 liters on the nasal cannula until the stridor heals. He gets upset and starts crying, can’t catch his breath from the stridor inflammation, and then begins to hyperventilate. When he does this they have to turn up his oxygen percentage to try to help him relax and calm down. He has been very easily agitated the last two days and these angry spells are getting more and more frequent. The last two days he has been getting so upset that he is vomiting during these episodes and a few of those have had some blood in them. We are hoping the blood is simply irritation residual but will be watching it to make sure.

Today was a doozy of a day. For the last week or so I have been having some pretty intense pain in the right calf that feels exactly like a pulled muscle. This was interesting to me as I couldn’t think of any reason that my leg would be that sore. I would stretch it before bed and each morning when I awoke it would be at the same level of pain as the day before. Of course I did what we all do when we think something is weird and I googled it. “Leg pain after C-section”. Immediately articles came up talking about the potential for blood clots and the signs and symptoms of one. I read through the list and the only one that fit my situation was leg pain…no swelling, no redness, not hot to touch.

On Tuesday I mentioned it to my OB and she said that usually blood clots are higher up in the leg, more behind the knee and my pain was in my lower calf so she wasn’t overly concerned. She said the only way to know for sure was an ultrasound and I told her if she wasn’t concerned we would just wait and watch it. I was eager to get back to the hospital and be with Levi and didn’t want to wait around for an ultrasound.

As the week went on the pain lingered. Last night I told myself that if it wasn’t better by morning I would visit the ER just to make sure. So this morning I headed down a few floors from the NICU and checked into the ER. This was such a hard decision for me as I HATED not spending the time with Levi. The triage nurse practitioner said the same thing my OB had said and almost sent me on my way, but I had already waited over an hour and a half to get into the triage room and I figured I would just keep going through the steps. I was taken to a room where the doctor said the SAME EXACT THING. No redness, no swelling, not hot to touch, too low in the leg. She said we could get an ultrasound just in case but it would take several hours since it was a Sunday.

Those words- “Several hours”- just broke my heart into a million pieces as I watched time tick away and I was not sitting with my son. I started bawling my eyes out and once those hormonal floodgates open you can’t dam that flow! I told her that I couldn’t wait several hours and would just have to come back another day. She went and talked to a supervisor who just happened to have experience in ultrasounds and they wheeled in a machine. Within about three seconds the supervisor spotted a clot behind my right knee. I was taken to the vascular lab who confirmed the clot and said it is completely occluded (blocked) and looked to be aged about a week.

There is something called Deep Vein Thrombosis (DVT) that can happen after trauma or surgeries where you have to sit or lay for awhile. A clot forms, commonly in the legs, and if pieces of it break off they travel to your lungs and can cause a Pulmonary Embolism, which can be deadly. They have started me on twice daily blood thinner injections to prevent other clots from forming, which I am now at a higher risk for. These thinners won’t necessarily shrink the existing clot but my body will dissolve it over time (3-6 months). Until that happens we have to watch carefully for the signs of an embolism and head to the hospital ASAP if those signs appear.

When he found the clot those floodgates opened yet again and I cried my eyes out. I am just so tired of being “the percentage”. There is always a small percentage that __________ will happen (insert the worst case scenario), and somehow we hit that mark each time. I am just craving a complications free few months for every member of my family.

I gathered my emotions by the time they discharged me and headed to the Ronald House after my 5 hour ER visit. It was 4:00 in the afternoon and I had not eaten all day or pumped for several hours. But all I wanted was to be with Levi! I scarfed down some peanut butter and crackers while I pumped, and sent Jake and Malachi on their way back to Benton for the night as Malachi has therapies tomorrow.

My night was all planned out…jump in the car and drop off my prescription for blood thinners and head over to spend time with Levi before they closed the NICU at 6:30. I jumped in the car and turned the key only to find the battery was dead. That was the last straw for me and I lost it right there in the parking lot. I couldn’t drop off my prescription which is now a life or death thing, I couldn’t drive over to spend time with my son, and walking seemed like a daunting task with a still fresh incision and a leg cramping with a blood clot in it.

I let myself cry it out for a bit then decided that being with Levi was priority number one at the moment. I took it slow and easy and walked across the street to the hospital. On the way I took breaks and texted some friends who I knew might be at church in the area. One of them was able to pick me up at the hospital at 6:30 and take me to get my prescription filled. Levi and I had a wonderful visit and I got to snuggle him for about an hour.

Unfortunately I don’t think I can make that walk again right now as it is quite a ways to go and exhausted me earlier. I also don’t feel 100% safe here at night. So this will be my first evening without a visit, which is hard for this momma.

Okay so drama over….let me transition into the positive updates.

Levi has been opening his eyes more and more, and they are absolutely breathtakingly beautiful. This photo was taken with my horrible iPhone camera… they are even more sparkly in person!

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He has such a sweet temperament most of the time and will just look around and soak up his surroundings. I took this video earlier this week:

Thanksgiving Day the pod was down to just a few babies and I asked if we could bring Malachi and Jake in for a visit. Our babysitter system has been working decently but with it being Thanksgiving Day I knew that we wouldn’t have a sitter. Malachi cherished every second and when we asked him if he wanted to go bye-bye he used his signs to tell us “No” and looked back at baby Levi. We asked him again and again and each time he indicated to us that he didn’t want to leave Levi. It was so sweet to see that intentional communication from him.

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Jake and Malachi also visited on Friday as we were able to give Levi his first bath! Now granted, it was a sponge bath but still a big deal. That sweet little boy loved every minute of his pampering and just stayed wide eyed in amazement. So sweet!

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Thanksgiving Day was a big day for me as it was the first time I felt confident holding and maneuvering Levi. He is deceptively tiny and the pictures don’t quite convey his accurate size. He dropped down to 4 pounds 3 ounces this week and is a skinny, long baby.

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So another week of NICU life down in the books, and not many changes to report. It is still up in the air as to how long we will be here, as we have plenty of steps to complete before that reality happens. I would absolutely love to be home by Christmas, but I don’t know if Levi will go along with that plan!

Levi’s verses this week have varied in content, but here are a few:

Psalm 91:11-12 “For He will give His angels charge concerning you, to guard you in all your ways. They will bear you up in their hands, that you do not strike your foot against a stone.”

Isaiah 40:29&31 “He gives strength to the weary and to him who lacks might He increases power. Yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become faint.”

And finally, as I have shared with you before on the blog, one of our prayers for Levi’s life is that God uses him is a special way. I have been fascinated with John the Baptist and how the Bible tells us that he was filled with the Holy Spirit even before he was born. My prayer is that God chooses Levi for an important task on this earth as well. Luke 1:14-15 “He will be a joy and a delight to you, and many will rejoice because of his birth, for he will be great in the sight of the Lord.”

What a powerful testimony!

Please remember us this week in your prayers. I will be meeting with doctors to discuss the clot issue, and we are just desperate for Levi to make some huge steps of progress. Please join us in prayer that his body strengthens and overcomes. Pray against any and all complications regarding our family. And continue to pray for wisdom and guidance as we navigate through the week.

God bless,

Leah

One Week Old

Levi is officially one week old! Well, technically 8 days old but I didn’t get to the computer in time. Here is a brief update as to what we are working on this week…

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Levi’s stridor (noisy breathing) is still an issue. This video is a perfect example of what we are working with:

We know why the stridor is there from his throat scope last week. Here is a visual so you can see the irritated vocal cord, not to mention all the swelling that is not pictured, poor baby.

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So typically stridors just take time to heal. We have done a ridiculous amount of steroid doses with him to try to help it heal, and each time we finish a round he sounds much better, but then the stridor comes back with a vengeance. The doctors think there is something we are missing that is aggravating the stridor. Their theory is that it is silent reflux.

So we are in investigative mode trying to determine the irritant. To check the silent reflux theory we have inserted a weighted feeding tube down his throat called a dobhoff tube that ends lower in the stomach than a normal feeding tube. This will make it much more difficult for food to make it up to the stridor if he refluxes, thus giving it a bit of a break to heal.

In addition to the stridor, unfortunately Levi’s prematurity is proving to be too rough for his lungs. He spent most of the week on CPAP on which he was absolutely miserable. Every time we had to move him, change his diaper, draw blood, etc he would scream and cry irritating his poor raw throat yet again.

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On Monday evening I was explaining to the night nurse about my frustrations with the CPAP as it was causing his stridor to get worse. Just then the nurse practioner and neonatologist came in and she relayed my conversation to them. They agreed to try him on cannula again! We started to take the mask off and Levi screamed angrily, but the second the CPAP came off he went silent with happiness. It was like we flipped a switch, and he has been a different child since. He has been content and calm and I have not heard him cry a single time since the mask came off. PRAISE THE LORD!

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But here is the problem…if his body tells us that it is not getting enough quality oxygen then we will be forced to put him back on the CPAP, despite the fact it angers him greatly and irritates the stridor. So that is a huge prayer request for us right now…that the levels on his TCOM machine stay in a happy place.

He did get the chance to trial room air (no oxygen support) yesterday and he failed the trial and had to be put back on cannula. The stridor and the oxygen issue are unrelated, meaning the oxygen support is simply due to his prematurity. We are hoping time will help strengthen those lungs and we can start to wean his oxygen. That is step one. As soon as we can get him non-oxygen dependent we will move to step two which is feedings. Until then he will continue to get his feeds via tube.

Levi has been acting more and more like a baby these days and even opened his eyes! Mommy’s heart melted into a big puddle. While Malachi does see, he can’t focus well on things so to see Levi look at me with such purposeful eye movements was a “first” and a very special moment.

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Levi’s cultures were coming back with growth so we ran a course of three antibiotics over the last several days. His veins struggled to keep up with the potent meds and he managed to go through several IV sites, his last one giving up yesterday. Luckily we were able to find ways to give the final doses meant for his IV through his tube instead, keeping us from having to stick him again. We are out of good veins on him so we are praying that no more IVs will be needed in the near future.

We have not taken Malachi back into the NICU nor have we allowed anyone else to visit him. At this point we want to eliminate any potential for unnecessary germs. Jake stays in the Ronald McDonald house with Malachi while I spend most of my days and nights over with Levi. Friends from church and family have been taking turns staying with Malachi for an hour or so, giving Jake a brief break to spend time with Levi. It is important to me that he gets the full experience too even though he is in caregiver mode. I have been able to hold him three times now, and Jake twice!

I am healing nicely from surgery and my post op appointment went well. The doctor explained that when they started the surgery they found that in addition to the abruption, my uterine lining was dangerously thin meaning we did surgery at just the right time. Waiting much longer could have turned our delivery into an emergency situation. God has blessed me with a solid milk supply, and we are exploring going on a “dairy free diet” (via doctor’s suggestions) as we suspect Levi might have a sensitive stomach like his brother.

Malachi is continuing to sleep well which truly is a gift from God. Jake has settled into a routine with him and although he gets extremely bored each day he is handling this very well. It is SO HARD for me to not hold him. We spend a lot of time sitting side by side and playing with toys or cuddling.

Emotionally I am doing much better, especially now that I can snuggle my son. It is so hard to sit and stare at your child, waiting patiently for the two minutes every four hours that you can lay hands on him to change his diaper. Not to mention throwing hormones in the mix. Jake and I have had to process so much disappointment throughout the last five years and had to find ways to push those emotions down, put on your mommy/daddy warrior hat, and just suck it up and deal. No time for pity parties with two boys that need us…even though the temptation to throw one is impressively strong.

Tomorrow is Thanksgiving Day, and we plan to spend it as a family here in the Ronald House/NICU. Our bodies might be in different buildings, but our hearts are one and we are extremely grateful this year for the many blessings God has showered on our family.

When you go through a situation like this one you find yourself not even really knowing how to pray. Or even what to pray for. But when you are a child of God, the Holy Spirit dwells in you and the Bible tells us in Romans: “And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.”

My emotions, my disappointments, my desires and pleas…they are all being expressed to God right now. My heart is so raw with emotion and there is no doubt in my mind that God is holding my family safely in the palm of His hand. I think about the compassion that Jesus Christ freely showed to others throughout the Bible. And I think about the compassion that burns in His heart for my family, and in particular, my son right now. Even in our most difficult struggles, I hope you realize that God is in the fire with you, holding you close to Him as he guards you from the flames. There is so much comfort in knowing God.

Levi’s verse last night came from Isaiah 26:3 “You will keep in perfect peace those whose minds are steadfast, because they trust in you.”

We will try to do another update on Sunday evening. Be patient with me if it doesn’t come until Monday like this weeks. My emotions were not in a good place on Sunday evening and I needed to focus on my boys! Thank you for continuing to pray for our family. We need a team of prayer warriors surrounding us over the next several weeks.

God bless,

Leah

 

 

NICU Round 2

Deep breath as I gather my thoughts and emotions right now. So much has happened in the last few days…

First of all, let me start by saying that Levi is stable and doing well. He is not necessarily making progress and has had some setbacks (we will get to all of that) but all of the issues are “non-life threatening”. I just want to get that out before I start this entry.

Tuesday morning started out well as I dropped Malachi off at school and headed into town (30 minutes from home) to run some errands. As you know, my doctor appointments were every Monday, Wednesday, and Friday so Tuesday and Thursday were my catch up days to get stuff done. After grabbing some lunch I stopped by the restroom for a potty break before continuing on my errands. As I sat down to empty my bladder I had a sudden major gush of blood and knew something was terribly wrong.

I immediately got in my car and headed to the hospital, calling the doctor on the way. I was trying my very hardest not to panic but as I drove I could feel my uterus starting contractions. I called Jake and told him to come quickly from the high school (about a 35 minute drive) and clung to the fact that I could still feel Levi moving inside of me.

I was able to get into a bed in the labor and delivery ward within minutes of arriving and they began tests to see what was happening. At that point I was contracting every 2-3 minutes, but when we checked the ultrasound little Levi was content as could be, playing with his toes. I was given a steroid shot under the assumption I would deliver that day and both teams of doctors (regular OB and high risk) talked to determine how to proceed. There were a few factors coming into play: 1) the longer you can delay after a steroid shot the better as it helps develop the baby’s lungs 2) I had my blood thinner injection that morning at 9am which could make operating a little risky for potential bleeding issues and 3) I had eaten lunch making my risk for aspirating during surgery high.

We waited as long as we possibly could, but as my bleeding continued the team grew more and more nervous. It was decided that we needed to do a C-section under general anesthesia (mom completely asleep) quickly, but Jake had left to go get Malachi from school and grab our hospital bags from the house. We waited until he returned, said a prayer, and to the OR I went. I had, in fact, had another placental abruption like I had done with Malachi and the blood thinning injections I had done through the pregnancy allowed the blood to manifest instead of clotting like last time.

Levi Daniel was born at 5:57pm on Tuesday evening, making him 34 weeks and 6 days. He was 4 pounds 8 ounces at birth and 18 inches long. He was having a little trouble with his breathing at birth so after an unsuccessful attempt at CPAP he was put on a ventilator to help him breath. Jake was able to go and see him and take a few pictures for me. Then they loaded him into an isollete and took him to Chattanooga to a higher level NICU. They did allow me to see him prior to him leaving, which was absolutely wonderful.

The plan was relayed to me that I would be transferred to the same Chattanooga hospital the next day so I could be near him. The next morning when the doctor rounded she said that was not in fact the plan, but rather they were going to try to discharge me to get me down there to him. This was shocking to me as I didn’t think they would release me so quickly after surgery, but I was grateful! Unfortunately my white blood cell count was elevated and they wanted to watch me for another 24 hours for possible infection.

In the meantime, Levi was doing very well and was able to be extubated and put on a nasal cannula. Jake dropped Malachi off and school and went down to spend time in the NICU which brought me peace.

After a very emotional Thursday morning I was finally discharged and raced to Chattanooga to spend time with my new son. Getting to be next to him brought me so much peace…he is such a beautiful boy. I even got to hold him, and seeing him try to find me when he heard my voice was such a special moment. We were reunited and all was well in our world!

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Jake and I headed back home to pick up Malachi from school and pack our bags, as we had gotten the phone call about an open room in the Ronald McDonald House. By Thursday evening we were moved into our new home away from home.

Friday morning I headed over to visit Levi and found that he had been placed on CPAP. My heart wasn’t quite ready for our first complication and I absolutely lost it. I just wanted an easy and smooth road of Levi growing and us going home quickly, which I now realized might not be our reality.

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Levi has a stridor, meaning he is having some respiratory distress making it a little difficult to breath. When he gets upset he is breathing so hard that he is lifting himself off the bed and his abdomen retracts to his spine. The nurse on duty said it was by far the worst retractions that she has ever seen and it truly is scary to watch him struggle so much to catch his breath.

The NICU doctors consulted with pulmonology who decided we needed to look inside his airways to see why Levi couldn’t catch his breath. The fear was a cyst or a node that was restricting his breathing, or a paralyzed vocal cord and the only was to know for sure was to send a camera down. Within the hour we had him in one of the surgical rooms under sedation exploring his throat. They found it was incredibly swollen and one of the vocal cords is completely raw from where the ventilator tube was placed the night he was born.

We are trying desperately to get his throat to heal enough that he doesn’t need oxygen support, but each time he gets upset it irritates it further. We have done several doses of steroids to try to speed up the healing but it will take time. Because he wasn’t getting the oxygen his body needed he was struggling with several other issues, like acidosis and circulation issues. In fact, his little feet turned black from lack of oxygen. He was also severely jaundiced requiring bilirubin lights, but his levels today have been decent.

In addition to his respiratory issues right now, his blood culture came back positive for an infection so we are starting antibiotics to treat whatever that may be. He also had to have a spinal tap this afternoon to get a sample of spinal fluid to make sure there is nothing brewing in there. Every time he has to have blood drawn of have an IV put in he gets upset and his throat just isn’t getting the chance to heal.

His weight is down to 4 pounds 4 ounces, but he is on a feeding schedule now which should help pack on the pounds. He is being fed my breastmilk through a tube down his throat.

Here are some pictures of his face during a mask change:

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So our hopes for simply a “feeder/grower” situation are dashed as we start on yet another dreaded NICU journey. I have been trying very hard to compartmentalize the two experiences, putting Malachi’s NICU memories in a jar of their own and trying to not make comparisons. It is actually proving to be harder right now as Levi is very aware of the pain he is suffering and much more reactive to it than Malachi was. It breaks my heart to hear him whimper in pain and see the holes in his veins from the many IV sticks and blood draws. He currently has one in his head which is hard to look at.

Emotionally this has been a struggle. I can’t put into words how difficult it is to connect with a child in your womb, birth him, and then not get to be with him. As I sat in my room at the hospital I had to listen to newborns crying all around me as they carried them to their mothers from the nursery for comfort…the way it is supposed to be. It hurt to not be able to do that for my son.

Levi is not stable enough these days for Jake and I to get to hold. I was able to hold him on Thursday, and one other time but Jake has not yet. We sit by his bedside and hold his little hands and feet, but it is so hard to see him cry and not be able to do anything about it.

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Our worlds are colliding in ways that my heart isn’t quite ready for. On Friday for his exploratory procedure they took us down the outpatient recovery rooms- the very same room we have sat with Malachi after each of his surgeries. The same room where he almost bled out after his heart procedure a few years ago. I still see all the blood when I look at that spot on the floor. It is very difficult to keep the two experiences each in their own compartment and not allow my flashbacks and emotions get the best of me.

Although it is another NICU experience, it is a different one as we know what to expect a bit more…which is a good and bad thing. Sometimes ignorance is bliss as I find myself stressing about what I know could happen. For example, they started him on some very strong antibiotics yesterday and I have been so upset as I remember this particular one burned through Malachi’s IVs. I told Jake yesterday that I am terrified they are going to ask to put a PICC line in Levi- and sure enough when I called at 4am the nurse mentioned the possibility of a PICC procedure as he burned through another spot last night.

So in summary, Levi is stable but we will be here for several weeks. There are just too many small things piling up right now to predict any timelines for going home so we are just focusing on day by day. We need your prayers that he will overcome his respiratory distress and heal completely.

Jake is on Malachi duty and some family and friends from church come by periodically to watch Malachi so Jake and I can go across the street together. Malachi loves listening to videos of baby brother:

Malachi also go the chance to meet him and touch his toes on Saturday. He was very aware that it was Levi and very intrigued by him. It was fun watching him process.

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Malachi is handling “our adventure” as we are calling it better than expected. He is sleeping well for us in the Ronald House and Jake has been Superdad in regards to caring for him while I heal.

We will plan to keep you all updated as we continue through NICU round 2. I will probably aim to do a mid-week update as well so if you aren’t “following” the blog yet and want to get an email when I update make sure you do that.

But the most important thing you can do for our family right now is pray for strength. I have been able to keep my wits about me so far but I am starting to feel myself unraveling a bit. I am discouraged. I just wanted things to go differently this time, for the comfort of my son.

Pray that we are able to settle into a routine with Malachi where he is getting the stimulation and focus that he needs as well. And pray for health for our family. If any of us get sick we are required to leave the Ronald House and won’t be able to visit the NICU.

We are continuing the tradition of taping verses on Levi’s bed each night, and yesterday’s was as much for me as it was for him:

Deuteronomy 31:8 “Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; He will neither fail you nor abandon you.”

Much Love,

The Carrolls

He’s Here!

I will save the detailed post for Sunday evening but thought I would share with you all that just 12 short hours ago, Levi Daniel decided to enter the world.

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After signs of a problem surfaced while running errands I was able to get myself over to the hospital relatively quickly And got in touch with my doctors, both high risk and regular. They determined that either I had another placental abruption (like I had with Malachi) or the old incision was splitting open due to the contractions that quickly started after I arrived. Either one was a dangerous situation for mom, and while Levi was still content it was not in our best interest to not get him out.

Levi as born under general anesthesia (mom was not awake) where they did discover, in fact, I had another placental abruption. He was 4 pounds, 8 ounces and had some slight issues breathing on his own. They tried CPAP but after their initial attempts failed he was placed on the ventilator. It was also decided that he needed to be transferred to a higher level NICU for care.

We did get to see him before he was transported and the goal is to try to get mom transferred via ambulance to the same hospital today. He is very stable and on room air with his vent settings so they will try to extubate him this morning and see how he does.

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We will plan to give you some good reports later in the week but thought it was only fair to let our second family aka the blog family know. Prayers are appreciated for us as we navigate this new road but know that everyone right now is strong, healthy, and happy- just taking our time recovering.

Much love,

Leah

10 Hours of Sleep!

Each week seems eerily like the previous one as we simply sit and wait for baby Levi to get here! Our schedule is pretty much the same each day with appointments every Monday, Wednesday, and Friday and cramming in as much preparation as possible in the down time.

I can’t even begin to explain the change that Malachi’s appointment schedule has undergone and how lovely it has been. Now that he is receiving most of his therapies at school I find that I am able to focus our time better and we get a lot more “homework” accomplished on any given day. I felt like before I never had time to complete all of the stretches, tasks, equipment time, etc that the therapists and doctors recommended and I now have time to focus on those things. It is allowing me to feel a little more in control of our current situation and my ability to actually help my son make progress.

Malachi has also been REALLY into toys lately, especially the ones that were packed away for the last year. It is like Christmas in our house as he rediscovers each one. Here are a few sweet snapshots from mommy and Malachi play time this week. He was concentrating so incredibly hard on keeping his head mid-line as you can see from his serious face in the first two pictures.

Malachi was able to go to school several days this week but missed a few due to classroom sickness that we wanted to keep him from getting. Our system seems to be working well with us waiting to take him in until 9:45ish. That gives the classroom teachers plenty of time to figure out if any of the other students are sick and give us a call.

Unfortunately I have learned the hard way to wait to tell Malachi the day’s plans until after the “safe” range for that phone call. Too many times lately I have gotten him all hyped up about going to school and then it turns out someone is running a fever and he doesn’t get to go.

Here are some of the crafts our big boy has been working on this week:

This week was the big measurement appointment for Levi. Just to recap, last check he was averaging about 3 pounds 5 ounces on his measurements and at that point only his abdomen was small. The doctor explained that a realistic goal was that he would gain one pound before the next check 3 weeks later. She also said that if he gained 1 pound 3 ounces that it would be exceeding the goal, sot that is what I prayed for!

At this check he had only gained 11 ounces total bringing his weight up to 4 pounds. Obviously way below the mark where we wanted to be, affirming that we are dealing with some placental issues (IUGR). There was a slight change this week as all of his body measurements are now showing growth restriction, not just his abdomen so it helps us narrow that term to what they call “symmetrical IUGR”. Usually this type shows up earlier in pregnancies so I guess we can count ourselves blessed that we made it this far without it becoming an issue.

That will be the last measurement check prior to his birth, so until then we just watch and wait. We are continuing to do tests every other day so we won’t miss any major changes in his distress levels….if the placenta stops nourishing him completely we need to be able to spot his distress quickly and get him out, hence the constant testing. But so far aside from being small he seems very happy, content, and opinionated in there.

In an effort to get him to grow even a few extra ounces we are going to try to delay his delivery early in the week after Thanksgiving, putting him closer to the 37 week mark! We are also going to go to the hospital a few times prior to delivery to get some steroid shots to help develop his lungs and give him a better chance at avoiding an extended NICU stay/ other related issues. Based on his growth charts so far it looks as if he won’t quite make it to the 5 pound mark before his delivery but we will see.

I have been trying to be extra conscientious about my eating and sleeping, which has not been easy. As the pregnancy progresses I am getting more and more nauseous with food, waking up most nights due to some severe reflux. I am trying to cram in as many servings of fruits, veggies, and water as I can stand but enjoying food is a no go these days. And the whole sleep situation with Malachi involved is hit or miss.

BUT I do want to share that Malachi broke his sleeping record this week, and the timing couldn’t have been better for a very tired and pregnant momma! He slept for 8 hours straight in his own bed, THEN he slept for another 2 in the bed with me! We got a full 10 hours of sleep that night, which is absolutely unheard of!!! He normally sleep about 4 hours in his bed and then maybe 2 more in the bed with me.

When Malachi randomly does that we all tend to panic a bit, worried that he is coming down with something. The weather has recently changed here so it is a bit cooler during the day, and sure enough his body temperature had dropped down to 96 degrees. We bundled him up extra solid the next day to try to get him back to his baseline, but the extra sleep was such a hidden blessing.

Last week we received Malachi’s new changing table, purchased with a grant from a local organization. It is the Cadillac of special needs changing tables with an electric foot pedal that raises and lowers the height. It will grow with him all the way into adulthood and has already been a game changer.

This week we will be receiving Malachi’s new twin size mattress, which was an absolute fight to get! He has outgrown his toddler sized one and manages to get his legs stuck in the side of the crib. His primary insurance denied it saying it wasn’t medically necessary, but his secondary insurance was willing to cover it. I can’t wait to see if it helps regulate his sleep cycles a bit with the added comfort. We used grant money last year to purchase a safe twin size bed frame to put the mattress in.

While the company is here setting up the bed we are going to go ahead and measure Malachi for a few other pieces of medical equipment- a new shower chair (as he has almost outgrown his) and a special needs car seat. I have been researching these two things for over a year, looking for the perfect one for Malachi and I have my sights set on some! The car seat swivels to face the door, making loading him into it astronomically easier. After you secure the straps you swivel it back towards the front of the car and lock it into place. Amazing! And the shower chair is much more supportive than the one he has now, sitting him in more of a chair position. We will start the process now, knowing it may be several months of waiting for approvals.

This has been a surprisingly sentimental week for me as I have walked down memory lane via Facebook. This was the week we announced Malachi’s pregnancy 5 years ago! Take a look at the words from the post…if we only knew that Malachi would have a different schedule in mind!

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This was also the week that we snapped one of my favorite family photos three years ago. I always laugh when I look at this photo as I reminisce about the chaos surrounding the moment. Malachi used to have severe reflux and just prior to this photo he had projectile vomited all over the leaves where we were sitting. I used the blanket we were sitting on to clean him up and as a last ditch effort to our failed photo-op, decided to have Jake try to take a selfie. As the camera struggled to focus on our faces at such a close range, Jake snapped this picture. Malachi was giggling at the noisy camera and the joy on his face makes my heart jump every time. It is also one of the last photos I have of him with all of his real teeth!

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I remember being so excited that we caught a picture of a real and genuine Malachi smile. I pulled up the photo on the computer when we got home that afternoon and there it was…a GIANT booger right in the black abyss of Malachi’s nostril. It was the only thing keeping that picture from being a winner so I worked tirelessly to remove the booger with free online photo editing sites. Oh the memories haha!

And finally, there is “THE VIDEO”. This video is my all time favorite of Malachi as a baby as it was the first time we captured his silly personality on camera. Malachi had such a rough beginning, followed by some very serious seizure issues at 8 months old. The treatment for those seizures was intense, causing us to “lose” his personality for an extended period of time. He was emotionless and it was so heartbreaking to watch, especially knowing that I was the one giving him the medicine that was causing the change.

As his little personality started to poke back through, we cherished each and every moment of joy and this video is no exception. It serves as a reminder to me of all the pain and heartache those early years brought but also reminds me of the mountains God has allowed us to move for Malachi.

Truth be told, our journey with Malachi has been so incredibly challenging. But each day with him is a blessing. I find myself so tempted to live a life “always waiting for the other shoe to drop”, but that isn’t what is best for him (or us). Instead we have to treat each day as it’s own and focus on conquering any battles that specific day might bring. There are too many giants to worry about in his future, and giving them our focus now just steals our joy.

Well, I managed to get into rambling mode again. Please continue to pray for Levi’s growth and safety. Pray for our emotional health as we venture down memory lane in regards to c-sections and hospital life post baby. Pray that we are able to protect our thoughts and hearts from the enemy as we are now very raw and sensitive targets to his attacks.

May God bless you all,

Jake, Leah, Malachi, and Levi

 

Grace On Repeat

As I sit here and dwell on how to begin this entry I can’t help but get distracted by a very active and feisty Levi who is currently kicking the fire out of my ribs….but praise the Lord for those aggressive jabs! His new favorite activity is kicking at big brother Malachi when he is resting too snugly on momma’s belly.

Levi passed all of his tests this week. He was reactive in his non-stress tests on Monday and Friday and his cord blood flow and fluid levels checked out well in his ultrasound on Wednesday. We are at week 34 (which was the shallow end of our 34-36 week goal). We will take measurements on Wednesday and determine if he was able to hit the gains we are hoping since his last measurement check. We should also be setting a date for delivery at my appointment tomorrow.

I figured it was about time for another awkward baby bump picture…

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Malachi made it to school on Tuesday, Wednesday, and Thursday this week. There was some sickness in his classroom so we decided to keep him home on Friday to play it safe! Instead he and mommy went to the doctor and then on a Panera date where we shared some broccoli cheddar soup and a big cookie. He haphazardly threw the first cookie onto the ground (his new favorite game which he thinks is hilarious). Momma was tough loving him explaining quietly into his ear that when we throw cookies on the floor we don’t get to eat them; that’s when a very sweet elderly man nearby came and handed him another cookie. Malachi grinned at me sheepishly….little stinker haha.

Speaking of cookies, I made some pumpkin cookies this week and thought I would see if Malachi could eat them. He absolutely loved them and had one each morning for breakfast. This was his first bite…

The truth is that I am already having some major sadness spells when it comes to picturing the six weeks post-op. While I will absolutely cherish my bonding time with Levi, being “unavailable” to hold and care for Malachi is just going to break my heart. I was explaining this to a friend this week and couldn’t stop tearing up just realizing how confusing that time will be for him.

Goodness how I love his sweet little spirit and his cuddles. We have been spending most of the week banking snuggles and rocking on the front porch- his new favorite place.

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We did, however, have one moment this week that bothered me more than it should have! I went to pick Malachi up from school and when he heard me walk in he closed his little eyes tight. He clearly did not want to leave school and figured if he couldn’t see me then I couldn’t see him and take him home. At first I thought it was funny, then after a few minutes my sensitivity sparked when he wouldn’t look at me. I asked him if he wanted to go home and he said “no” with his frown/no face. I had to bribe him into leaving by telling him we were going to see daddy, to which he opened his eyes bright and indicated he was ready to go. Ouch!

Malachi has been such a big boy lately. He is sleeping better than ever, praise the Lord! He has been sleeping 6-7 hours straight and then laying in the bed with me and watching cartoons, more often than not drifting back to sleep for another hour or so. The new house has made all the difference as he has his side of the house to himself and no street noise. He is also eating ferociously making us think he is going through a growth spurt.

Malachi is also desperately seeking his own levels of independence which is amazing and heartbreaking at the same time. He wants so badly to sit up and stand unassisted but just can’t physically do those things. Anytime he is in his wheelchair he is trying to figure out how to get out of it, and has been throwing his body into dangerous positions attempting to be big and independent. When Jake or I are holding him he wants to stand up but still can’t support his body. We are trying to encourage those attempts as much as possible but it can be heartbreaking to see how much the desire is there but the ability is not.

There is so much of a typical four year old boy trapped inside that body, and it is such a parenting challenge to try to find ways to help him be the big boy that he wants to be.

He is continuing to ride his horse each week, which I think has been great for his level of independence. Yes, he has a therapist on there with him at all times but he gets to do something without mom, dad, or a piece of equipment supporting him and I think he cherishes those moments.

As our countdown to Levi ticks on, Jake and I have been making arrangements in our other duties to make sure that things can continue without us for several weeks. We have found church friends who are willing to cover the youth group through the new year and I have been cramming in some final lessons that the Lord has placed on my heart for the kids.

I started a new study with them several weeks back about the providence of God- something that completely fascinates me. God can take any situation, no matter how terrible, and use it for His glory.

We have been going through different stories in the Bible where God’s providence is clear as day- like the stories of Esther, Naomi/Ruth, and Jacob. For the last two weeks we covered the story of Joseph and looked at all the ways God’s hand was on Joseph’s life; even in the times when horrible circumstances surrounded him.

It has been a great opportunity to teach the teens about mountaintops and valleys, and the importance of trusting God regardless of where we find ourselves. Sometimes those valleys that we despise are preparing us for a coming mountaintop, more glorious than we could ever imagine.

The story of Joseph frequently uses the phrase “…and the Lord showed favor on Him…”

This line stopped me in my tracks as I reflected back on the many times in my life that I have seen the Lord show unmerited favor on Jake and I. There have been so many times that God’s providence appeared in Jake and I’s lives in such obvious ways that we couldn’t ignore.

I often times wonder to myself why God chose us for this daunting task of raising Malachi…a job we are so ill equipped for. And truth be told, I may never find the answer to that on this side of heaven. But my prayer is that regardless of our circumstances and trials in raising Malachi that the Lord will continue to show favor on our family, as He has repeatedly done in the past.

I say this often in our home, but we are uniquely blessed. So many people tend to look at our family with eyes of pity, but through our son we are able to see a love that not many get to experience. We are able to see a pure joy that the world can often taint in others. We are able to see so much of the character of Christ through Malachi…and he challenges us daily to put aside our selfish wants and desires and love the way Christ does.

A high school classmate of mine has five daughters of her own, all under the age of 6. She uses a hashtag in her social media posts that I have grown to love and it is #graceonrepeat.

I love that mentality as I see it daily in my own life. Grace on repeat. Daily I find myself disgusted at my selfishness, and daily I find God extending his grace to me. We are not called to a life of perfection, but rather called to a life worthy of the calling. A life that constantly grasps at Christ…never fully perfecting or mastering the role as a child of God.

As I think about my life with Malachi I get excited about the ways that God’s providence will manifest itself throughout his lifetime. And I look forward to those Ah-hah moments that remind me that He was working behind the scenes the entire time…making certain that His will would prevail.

May we always remember to be grateful for the many times the Lord has showed favor on the Carroll family.

God bless,

Jake, Leah, Malachi, and tiny man Levi