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.
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.
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.
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:
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.
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.
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.
The Lord is my shepherd,
I [shall not want.
2 He makes me lie down in green pastures;
He leads me beside quiet waters.
3 He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.
4 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.
5 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.