Fearfully and wonderfully made: A true MIRACLE!
Hi! My name is London. I have had a very hard road, but I am a miracle from God! When my mommy, Kristy, found out she was pregnant with me I was one of the best surprises she could have ever asked for! When my mom was 19 weeks pregnant the doctors reminded her that she only had 1 week left to decide to end my life after several invasive tests. She refused. She said she will do anything to love and care for me, no matter what, and that I was in Gods hands.
On June 3, 2020, I was forced into this world 9weeks early due to my mommy falling ill with a rare case of preeclampsia called HELLP. My mommy and I were both very sick and clinging to life. But my mommy is a very strong fighter, just like me! The doctors could not secure my airway, so I had to leave my mommy and go to a local children’s hospital. When my mommy gave me that goodbye kiss, she thought I was going to heaven that night. She felt it in her heart. So she prayed. She prayed to God, my grandfather, my great grandmom, and my Aunt Jill in heaven to protect me until she could hold me while I made my way into heavens light. I knew I could be a fighter just like my mom! So I fought! With every ounce of my being, I fought to be with my mommy and family. So while my mommy fought for her life, my Gaga stayed by my side. Praying for my strength while my mommy prayed for me in her hospital bed. My Gaga sent pictures of me and my mommy was in total disbelief. I looked like an entirely different baby. I wasn’t swollen, discolored or had blood in my mouth from searching for an airway anymore. I was peaceful in my tiny isolate that said “FRAGILE HANDLE WITH CARE and CRITICAL AIRWAY”. God had me in his arms safely. I had my head wrapped in EEG bandages and a stable air way in my nose that could not be touched or I might not make it. There was sounds of ventilators and alarms over the phone as my mommy said to my Gaga, “Mom! What’s wrong with her! What does she have?They said something could be wrong, what is it?”
She said, “Kristy, she is a miracle! They said they don’t know how she made it. They attempted to get her airway 12 times last night. She fought all night! She grabbed my finger and held onto it for hours. She has a cleft palette, a jaw that goes back and makes it difficult for her to breathe so she has no upper airway. Kristy she doesn’t have any ribs!” My mommy said “What?! No ribs?! Ok! So what does she have?” Mommy had all these different disorders and diseases running through her head.
“They don’t know!”, Gaga said! “They have never seen this before!”
That’s when they knew I was always a big question mark! They couldn’t tell mommy what was wrong while she was pregnant with me and they didn’t know now either. I was scared! And I think my mommy started a thing I hear her say all the time called research.
So now what will we do? My mommy had to lock in her harness and take what’s been the most scary, emotional, happy, joyful, angry, disappointing, sad, but beautiful roller coaster ride of her whole entire life!
We don’t know what to expect, we don’t know when it ends, we don’t know if it’s a success or failure, and we don’t know where it’s going to land us! But I hear my mommy all the time fighting for me with doctors and social workers and she even mad a big decision to have me moved to one of the best children’s hospitals in the United States. You see, I was finally diagnosed with Cerebrocostomandibular Syndrome(CCMS). I also have some preemie issues such as bronchopulmonary dysplasia, chronic lung disease, and pulmonary hypertension. I have had pneumonia five times and necrotizing endocolitis. I have a trach and G tube that was placed in July and I am awaiting a plastic surgery on my pallet and jaw to fix my upper airway.
My mommy is fighting really hard to have my GI system checked as soon as I get a little better because when I eat, sometimes I get so upset they have to do chest compressions on me! Mommy hates when that happens! There have been about 80 diagnoses of CCMS in the entire world, 18 babies born with it in the entire world and only a few children in the states with CCMS. I am very rare! God sure did make me special! I am a teaching tool for a lot of my doctors and respiratory therapists. My goal for now at my most recent children’s hospital is to get to the point where I can go home and not require critical care nursing. I can’t wait to go there! The doctors and my mommy say once I get to this place called home I will grow faster and do better because my mommy will be with me all the time. My nurses love when my mommy is in my hospital room because they say all my numbers are the best and she can always calm me from having my episodes and those are scary for me. I hate those! Doctors are creating things along the way to act as my chest wall cavity and give me some compliance to assist in breathing since I have no protection for my lungs. For now, it’s just an ace bandage that they cut special for me to fit my G tube. I didn’t like it the first time! But now, when they change it and take it off, I cry because I breathe better with it on and breathing is so hard for me with my anatomy and preemie lungs. They have since found some very tiny true ribs, but they don’t show up on X-rays yet so we are not sure exactly where they are and what they can do for me one day. They don’t believe I have a sternum at all, at least not one on an X-ray. They keep very close tabs on my bones with the bone and orthopedic team. My mommy keeps asking God, if it’s in His will, to give me my bones. If not, just keep close to me like He has been this whole time. They are not sure if I can get the surgery (VEPTR) to make me some ribs at this point, so we are not sure what my future holds. This will be an ongoing battle for me and God holds the key to my journey!
My mom has learned to trust God whole heartedly, take one day at a time, and savor every moment with me because we don’t know what is in His plan. Even me being here is already a miracle and Mommy is thankful for that and she gives God the glory with every good day, bad day, good news, bad news, and new techniques to make me better. She prays it is in His plan to fix all this and show us a modern day biblical miracle! She reads this bible verse to me about being “fearfully and wonderfully made” and she said God made me just the way He wants me to be and I’m here for a reason.
I was born during the covid pandemic and my mommy and I are both high risk to the virus. She is my only caretaker, so most of her days are spent in training for me to come home. She has not worked since March 2020 due to her job being hands on as a hair dresser so isolating was the only option to protect us both! Everyone in my house still isoltates just for me. They say it’s driving them crazy, but I’m going crazy too in this place! It’s horrible!!!My momwas almost done nursing school, but that was put on hold to take care of me. She has made huge sacrifices and she wouldn’t change that for anything. We kids are her life! She has made it eleven months strong without needing any help because she has been a single mama for 21 years and has learned to budget like a champ. But, The reality is that she is going to have to be home for a while longer to take care of me and protect us from the risks of covid. Mommy moved to a 3 bedroom home to accommodate us kids when she knew she was growing with me on the way, but had no idea a 3 story home would be dangerous to me. Her goal is to get a one story so she doesn’t have to worry about the danger of the steps with my anatomy.
She will have home nursing for me once I am home to allow her out of the house 16 hours a week. Once the virus is Under control, she can use those hours to get back on her grind, but I cannot be left with anyone that has not been trained to take care of my trachea so she is limited to in home nursing. If you could donate that would be a huge help and if you can’t-please share my story to every platform you have. Please email to your friends, text to your friends, share on all Your social media platforms, send this to The Ellen Show ! My mommy and I could use all the help we can get. We have learned there are generous and caring people out there who want to help and she has to do what she can for me. If you can donate we thank you, if you can share we thank you! If you can pray for me and my doctors to make a way for a new surgery for me we bless you! Thank you for reading my story!
