This week took some unexpected turns for our little Levi. Monday morning he had a procedure called a supraglottoplasty. They were able to trim the swollen and floppy area to keep it from covering the airway when he gets upset and breathes in hard. I made this visual for you so you could have an idea of the progression his laryngomalacia has taken since his birth. The open slit is his airway and vocal cords; take note of the area underneath the vocal cords (arytenoids) that grows larger in each photo:
In order to determine the surgery’s success we had to watch and wait to see what would happen when he got angry. The first few days were not an accurate snapshot as the area was still very swollen, but by mid week we were feeling pretty confident that it had done what it should do! PHEW!! We have been letting him get pretty worked up this week and watching his stats to make sure he is able to keep himself in a “safe” place with his oxygen.
Here is an updated video of his stridor post-op…not much change in the noise, but that wasn’t necessarily the goal of the surgery:
On Thursday he was almost entirely healed up and acting like himself again. We went down to the basement of the hospital for an upper GI study- a step needed in order to proceed with his g-tube surgery. In this study they put some barium down his NG tube and watch it on the screen to see what happens. He handled the field trip well and they did not see anything concerning in his GI tract.
Levi also got his first few vaccinations that morning and was noticeably fussy and agitated after. He started throwing up the barium that he had been given earlier that day. He was one angry little boy who did not want to be put down for any reason. He has just about mastered the pout face, just like big brother Malachi:
As we progressed into Friday Levi started to act differently. His heart rate began to rise up to 200 and he was acting very off. As he continued to progress in a negative direction we all started to worry that maybe he was developing an infection or sickness.
By the end of the day he was back on oxygen at 6 liters of high flow and they were discussing re-intubating him to place him back on the ventilator. They also ordered a full sepsis work up to see if he was brewing any bacterial or viral infections, had any urinary tract infections, or anything else of the sort. They even started him on antibiotics, sure that they were going to find something.
But everything came back clear. Part of me is thrilled that everything was clear, but the other part of me is scratching my head with the rest of the team wondering what happened.
Saturday was a very bad day for our little guy as he was poked, prodded, catheterized, scanned, and so much more. Today he has started to act a little more like himself but is still having moments where he is clearly in pain.
Jake was able to come visit this weekend and I don’t even know how to describe the sweet connection between the two of them. Levi is smitten with his daddy, he literally cannot take his eyes off of him when he comes into the room.
Here is a video for you of his intense Jake stares:
We are waiting for his cultures to come back clear before we will stop the antibiotics. They have started him back on his feeds very slowly today with hopes of being able to increase them tomorrow. Once we can do that he will no longer need an IV, which will be wonderful as they have had to stick him 6 times just for IV access this weekend. We are also hoping to start weaning him off of oxygen tomorrow to see if he can tolerate it.
So this little hiccup has left us all very confused and a little unsure where to go from here. Something very clearly has aggravated his system and since we can’t pinpoint it exactly we can’t be reassured that something like this won’t happen when we get him home. We want to make sure he is completely safe before we leave here, and his incident this weekend was most definitely not a safe one. I personally want to point my fingers at the vaccines he received but the doctors are telling me that this was most likely a combination of multiple issues, including the vaccines but not limited to them.
Levi was scheduled to have surgery tomorrow at noon to get a g-tube and have another MLB but we just don’t feel that he is strong enough to withstand surgery right now. We may try again later in the week but we aren’t eager to rush something that his body might not tolerate well.
I am disappointed in our set back. We had even talked about the “D” word (discharge) this week during rounds and we were within a two week time frame for going home!! But now we have more mysteries and confusion.
On to other things…
What a special day today is for our family! Today our little Malachi turns 5 years old. All week long I have been mentally preparing what I wanted to say about our Malachi in this entry. I had come up with beautiful analogies and stories to share- but after this weekend my mind is not functioning like it should. I am so disappointed I won’t be able to coherently write a tribute to my 5 year old warrior like I wanted to, so bear with me in my ramblings.
The night that Malachi was born, our world changed in an instant. Never did we ever predict that God would place our little family on such a unique path; a path full of unimaginable twists and turns.
In the early morning of February 4th, 2013 just past midnight we raced to the operating room. It has always intrigued me what pieces of that night my mind has clung to over the years. I remember the face of the doctor as she said “Give it one more try” as they moved the ultrasound wand over my stomach, looking for his heartbeat which had just been present but now was mysteriously missing. My mind can still picture the clock that my eye caught as we left the room…12:04am. I can still see the ceiling tiles racing over my head as they wheeled me in a sprint to the operating room. I can smell that operating room…a smell that I can only describe as “clean and cold”.
I can remember being in so much pain. crawling desperately over from my hospital bed to the operating room table and following every instruction they yelled as they scrambled to get things ready for surgery. I watched the surgeon pick up the scalpel and eye my stomach, deciding where to cut. I so vividly remember her lifting the scalpel and saying “ready?” to the room, and me responding with a shaky voice “Do what you need to do, but I want you to know I am still awake. I will try my best not to move.”
I woke up that night to an empty belly that had so recently been the safe haven for my sweet Malachi. They brought Jake into the room and I will never forget his body language. He had his hands in his pockets and wouldn’t look at me as he walked past me to come to my side. I asked the question that still makes that lump in my throat come back all these years later…. “Is he alive?” And Jake simply nodded his chin indicating yes, but I knew in my heart that it wasn’t safe to ask any more questions.
Malachi was born without a heartbeat that night. After 15 minutes of CPR, our little 24 week miracle came to life. He weighed 1 pound 12 ounces and we spent the first 4 months of his life in the NICU. His brain hemorrhaged at three days old and we were told that life was going to be different and challenging for our little boy. We prayed for miracles, begged God for healings, fought with every ounce of our beings to give our little blessing a running start at life.
After Malachi’s birth, someone gave me a very special book titled “On The Night You Were Born” by Nancy Tillman. I got cold chills the first time I read it’s beautiful words, and it has since been dubbed as “Malachi’s story”. It truly sounds like it was written just for him. I have included a few excerpts from this book, which will be bolded and italicized.
On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, ‘Life will never be the same.’ Because there had never been anyone like you ever in the world.
Boy, is that first line oh so true. Here is a photo of our sweet boy when he was several weeks old. His little arms were the width of my pinky and his head could fit comfortably in the palm of my hand.
So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name. It sailed through the farmland high on the breeze. Over the ocean and through the trees, until everyone heard it and everyone knew of the one and only ever you.
In this past year this line has taken on new meaning with his viral Facebook post. Jake and I watched in amazement as Malachi’s picture and name spread all over the world like wildfire. Even today his story continues to be shared weekly! I am so humbled by the number of people whose viewpoints about differences may have been changed through Malachi’s story. And I am so honored that we have been able to help the world see that life with a disabled child isn’t a bad thing!! We live a life of contentment with our special boy and feel so blessed to be chosen to raise him.
If you haven’t gotten the chance to watch the video, here is the link:
For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again…
Every child on this earth is unique and special. Malachi’s uniqueness is visibly highlighted more than others, but what an amazing kid he is.
In the last year we have started to see just how intelligent Malachi really is. He listens and understands so much more than people give him credit for. He has developed his own sign language to communicate with us, and can use his eyes to indicate what he wants.
Malachi loves adventure! He also loves routines and finds comfort in knowing where we are going before we get there. We talk to him throughout the day and always make sure to verbally tell him where we are going and what we are doing so he will have something to look forward to.
Lately he has started to develop an imagination! He likes to pretend that we are dinosaurs, lions, dogs, or monsters and will yell, pretending to be scared. But most of the time his acting skills make him laugh so he ends up out of character quickly.
His memory is impressive and he will verbally act out scenes from his car DVDs before the scene even comes on. He will yell like Super Grover on Sesame Street 30 seconds before Grover does so on the DVD.
Lately he is exploring his emotions and has been fascinated by the concept of “mad”. He will pretend to be angry at me and contort his eyebrows to show me he is angry, which usually makes him laugh hysterically.
But Malachi also loves to hug and cuddle. He gives kisses freely and has a special spot in his heart for his baby brother. He loves to talk about Levi; having them in the same room together again will be such a joy to all of us.
Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.
That night truly was terrifying, life changing, and full of sadness for our family. But it was also the night that a beautiful soul was entrusted into our care and I thank God every day for such an honor.
There is not a doubt in my mind that God is using Malachi in ways that we have yet to even see. So many times people look at him as broken. They see his value diminished by his physical limitations. But God continues to show me what He has told us in scripture:
“For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things He planned for us long ago.” Ephesians 2:10
So happy 5th birthday to our masterpiece. May God continue to unfold your beautiful story, one page at a time, with each page more powerful than the last. And may he continue to use your beautiful soul as a mouthpiece for Him.
I want to end with a poem I wrote for Malachi several years ago:
It was a breathtaking day in heaven as the Father summoned the Son.
He wanted to tell him firsthand about something wonderful He had done.
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth.
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”
Jesus nodded as he understood the truth in God’s mysterious ways.
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.
What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord.
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind.
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.
So share your story and live your life with joy, love, and grace.
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.
Please, please, please continue to pray for our family. I have been under attack this week in so many ways and I am so worn. Pray that we make some major steps of progress this week and Levi is made whole in a supernatural way.