In February 2013, after just 24 weeks of pregnancy, God decided that it was time for Malachi to be born. Malachi came out without a heartbeat at just 1 pound 12 ounces. After 15 long minutes of CPR he began to fight, and hasn’t stopped since! The oxygen deprivation caused his brain to hemorrhage on both sides resulting in Grade 4 bleeds (the worst on the scale). We were told that Malachi’s quality of life would be very poor and we were given the opportunity to discontinue life saving care. Jake and I have always felt that Malachi’s future rests in the hands of God and we chose life for our son.
Our road is not easy and Malachi has many challenges. His main diagnoses include Hydrocephalus with a VP shunt, Hypoxic Ischemic Encephalopathy, Cerebral Palsy, Cortical Visual Impairment, Epilepsy, Severe Reflux, and multiple orthopedic abnormalities. He has had 16 surgeries and several hospitalizations but has continued life with a smile on his face. Although he is very cognitively and developmentally impaired, he is still a very intelligent little boy who can express his likes and dislikes and communicate in his own way. And Malachi loves music and people with a passion.
In November 2017 we welcomed baby brother Levi into the world at 34 weeks gestation. Shortly after his birth he was taken to the NICU where they discovered he has paradoxical vocal cord dysfunction (also called bilateral vocal cord paralysis). Since the cords do not move it makes breathing very obstructed and difficult. The typical treatment is a trach. And since the cords can’t close to protect his airway, feeding is a safety concern so Levi has a g-tube. Doctors also discovered several small areas of brain damage leading to a diagnosis of Hypoxic Ischemic Encephalopathy which has also brought a diagnosis of diplegic cerebral palsy. His CP affects his legs, ankles, and core. ￼￼ it has also started to destroy the nerve in his left eye and he is losing vision in that eye.
￼ Weeks after his birth we ￼flew Levi to Cincinnati to try several experimental procedures to avoid a tracheostomy. After 27 procedures and surgeries and a 4.5 month stay in the NICU it seems that we have succeeded but his journey is still far from over as this is a long term medical issue. There is a 50% chance his vocal cords will wake up in his lifetime so we are praying to be on the winning end of that statistic.
This blog serves as my personal journal so that I can remember how far the Lord has brought the Carroll family. Some entries may bore you while others give you more information than you care to know, but it has been an outlet for me to put my thoughts into print. Thank you for taking the time to pray for more miracles for Malachi and Levi.
To view journal entries from the first three years of Malachi’s life, visit https://www.caringbridge.org/visit/malachicarroll
If you are currently on your own medical journey with your children and need someone to reach out to please feel free to contact us by email at email@example.com . We don’t have all the answers but we serve a big God and would love to pray over you!
14 thoughts on “About”
Leah, I’ve read your posts every week since you started writing them. As a NICU nurse, I feel like they give me an insight to our babies and what may come of their futures that I would otherwise never have. Thank you for taking the time to write them. I’ve cried with you and rejoiced with you. I loom forward to seeing what’s happened with sweet Malachi each week! You guys are an amazing family! You are in my thoughts.
Thank you for sharing your story of your son. I look forward to reading the new updates of him every week!
I just wanted to say I think you are doing a wonderful job! As a neonatal nurse practitioner in a nicu, it really opened my eyes to what our patients families go through. Your posts have made me smile and cry. Keep up the good work and keep smiling.
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I am so pleased you posted this & Fox news! My daughter also has cerebral palsy and also wore braces on her legs. I always appreciated the honesty of children who asked questions. It was a delight for all the reasons you stated. Nearly all the time adults looked, pointed and whispered. As she grew older and became aware of this, she began to feel like a freak. She is very bright and became angry and it was difficult for her and us. With God’s help and the love and support we made it through.
She was very determined to do what all the other kids did. She did not take the elevator. She struggled up and down the stairs instead. She eventually did not need braces and graduated from college. She was exhausted every day from walking to classes, often fell asleep on her bed and missed supper at the dining hall. She is now 30 and the mother of 2 young boys.
Anyone can give birth to a child with a disability and their worth as human beings in our society should be welcomed and never questioned. God bless you, your son, your family members and all those that help him, and all the wonderful people in the medical & educational professionals who assist him and you. P.S. she still walks with a limp and people still do the same but it does not bother her anymore. She is one tuff cookie!
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Leah, hope this gets to you. Not sure how to do comments. Be sure they know about your leg clot. Another clue! And that you are on treatment in case that would skew and test results. I’m a peds nurse. Praying for your family.
When I began reading your blog, I immediately thought of my favorite verse; one that has brought me much comfort during youngest daughters illness. Isaiah 41:10. It was a God moment for me! We’re praying for you daily. Love n blessings to you, Jake, Malachi n Levi.
Your posts are my weekly devotion. I appreciate your words of wisdom and believe that God is speaking through you. Your life experiences and how you share them are helping to keep some of us on a more faithful path. Your family does indeed have a purpose! Thank you.
I’m honored to have come across your video about your son.. God knew that you would be the most marvelous mommy ever. That’s exactly why he choose you!
Thank you for being a beautiful soul.
Thank you for teaching the future me, to not stay in silence if i see someone that may look different, but all our hearts are the same.
May God continue to shower your family with endless blessings.
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I stumbled across your blog via the Dayton Area Special Mom’s Facebook group. As I was reading the latest update I kept wondering if Malachi had HIE like my youngest did – lo and behold I was right! What a precious little guy, I love that smile so much. I look at sweet little guys like your Malachi and my Benjamin and just thank God that they surmounted such difficult beginnings to be here today and share their sweetness and joy with us.
You have a wonderful, encouraging blog. Thank you so much for your posts and encouragement in sharing the journey the Lord has for your family with all of us.
Hello Taryl! We are originally from Dayton…small world! Malachi has severe HIE and Levi has mild HIE from some moments without enough oxygen in the NICU. Thank you for the encouraging and kind message! Some people may call us crazy for seeing our challenges as a blessing in disguise but you and I know the reality of that truth!
I just found your blog and it brings me to tears this morning. Not because of all the struggles you all have, because I totally get what joy and blessings come from our medically challenged kids – joy even in the hardest syruggles. I am a grandma to our 8 yr old Ollie who struggles ,too. Being born healthy but undiagnosed brain cyst until 3 months old, Ollie is now blind, has CP, language destroyed, so non verbal too. Several other medical challenges that require round the clock care. Ollie, like your Malachai is our joy. He cant speak but yes we know when his needs are not met, or his joys expressed..thru music as well!
Its been a really hard week last week with Ollie, and this morning it just hit harder reading your posts. Seeing the words and thoughts you penned makes me pick myself back up and ready myself for Ollie tomorrow. Your story and faith somehow boosted me to keep seeing joy even in all the things Ollie cant do. Because theres things he CAN do…love us. teach us unconditional love and accepting us for our foibles ya know? thank you S0 much today for living life the greatest for Malachai…