For The Love Of Baby Blaze

May 3, 2012

Baby Blaze Johnson will be eight weeks old Friday — just days before he faces his third open heart surgery. It’s a surgery that is not without tremendous risk, but without it, he will likely die.

His story began early March, born six weeks early to Katherine Johnson, an RN at Sacred Heart Hospital, a Chris “Squeaky” Johnson, a videographer for WEAR TV 3.

“He was the cutest little thing,” Chris said, his voice rising into the squeaky tone that earned his nickname. “He had big fingers and toes.”

The couple knew their first child, due to his premature birth, would spend a few weeks at Sacred Heart Hospital’s NICU, receiving oxygen as his lungs matured. It was mountain that knew they could climb.

But by the time Blaze was five days old, the nurses at Sacred Heart knew that something just wasn’t right. And his oxygen levels began to plummet; his heart fell into a dangerous rhythm.

“They were about to shock him; they were about to shock our baby,” Chris said. He understood the gravity of the situation, and Katherine, an RN in Sacred Heart’s emergency room, was more than aware where they stood at that moment.

Doctors ordered an ultrasound. The results were frightening.

“My heart fell into my chest,” Chris said. “Everything was suppose to be fine. All the ultrasounds before he was born said he was healthy. This wasn’t suppose to be happening. We were OK with the breathing problems, and then were suppose to take him home and we would be fine. There are no words to describe it.”

The couple was forced to choose which of a handful of major children’s hospitals in the south would see Blaze. They choose Emory in Atlanta because Katherine had relatives that lived not to far away. Blaze and Katherine were quickly flown to Atlanta; Chris drove behind them.

Heart abnormalities had thrown a major curve ball into the lives of the young family, as their youngest was in real jeopardy.

Surgeries were performed; there were some successes, some failures. And this week the couple was faced with the decision on a risky surgery that could certainly mean  life  or death for their baby.

“We were given three choices: do nothing and he would die; stents that he would outgrow; or another surgery,” Chris said. Doctors will, on Friday, perform the surgery if all goes as planned.

Essentially, Blaze is without one of his heart chambers. Doctors will work to create a “well” in tissue that will replace the chamber. It’s a rarely done procedure, not something from a medical textbook.

“Please keep praying that God keeps this little boy in his hands, heal him and be with the doctors as they make their decision and assist God in this very difficult surgery,” Katherine wrote on the Baby Blaze Fan Club page on Facebook.

As he describes Blaze’s condition, Chris speaks with little emotion, sounding almost distant from the past seven weeks have been something of nonstop blur.

“I’m the father. I have to stay strong for Blaze and for Katherine. It’s my duty. You do what you have to do for your children.”

“But it does bother me,” he said, “I’ve shed many tears, but I must remain strong for my family.”

The Johnsons are not in their battle alone. Communities across the area  have rallied behind them; over 1,100 people have joined the Facebook fan club for Blaze.

“The words of others on the Facebook page, the calls, the text messages, the prayers from people that don’t even know us that tell us how his story has touched them — it’s all given us strength,” he said. “But it’s also brought us closer to God and His strength.”

Chris’ father — Henry Franklin Johnson, a former chief of the Flomaton Fire Department — died of cancer in 2000. The name “Blaze” is a tribute to him, and a tribute to Katherine’s father Henry Page, who was also a volunteer fireman. Shortly after the death of Chris’ father, his brother died.

“God was preparing me for this with Blaze,” Chris said, emotion returning to his voice. “You can’t tell me there’s no God. I could not see it then when my father and brother died. But you can’t tell me God does not have a purpose. He was preparing me, making me strong for Blaze.”

For now, it’s about the little milestones in Blaze’s life. The tiniest baby steps of sorts. The couple realized a major milestone Wednesday as they were able to hold their baby Blaze for the first time in about seven weeks.

“Oh how I wish I could just make him whole,” Chris said. “I just want to hold him and know that he’s OK. It’s in God’s hands and God’s time.”

A benefit yard sale and bake sale will be held this Saturday at Flomaton First Baptist Church from 8 a.m. until for the Johnson’s expenses for baby Blaze. For information or to donate yard sale items, contact Renee Merchant at (850) 791-4106. There is also a benefit account under the name “Baby Blaze Fan Club” at Region’s Bank.

To join the Baby Blaze Fanclub on Facebook, click here.

Pictured top: Mom Katherine Johnson holds her son Blaze Wednesday for the first time in seven weeks. Pictured additional photos: Baby Blaze Johnson. Submitted photos for NorthEscambia.com, click to enlarge.

Comments

59 Responses to “For The Love Of Baby Blaze”

  1. Andrea Araneta on June 12th, 2012 10:18 pm

    Im praying for you and your beautiful baby! My heart is with your family! I know how hard this is for you ! My grandson Logynn was born on April 12th 2012, he was born in a coma and he could not breath! He had global brain injury! Loygnn was in nicu for 19you days! There was nothing that the doctors could do! We had to make the toughest descision of our lives! Logynn was taken off the ventilator on may 1st. He is in the arms of Jesus now! We all miss him so much, but we are a peice knowing that he is with God and no longer in pain! I pray that God will heal you baby, and i pray that you dont haven’t to suffer the loss of your baby! Stay strong and and may God bless you!

  2. GRACIE STROECKER on May 9th, 2012 8:51 pm

    I have been reading about Baby Blaze. My Prayers go out to the Parents that Blaze will make a quick recovery…….My Prayer……”Heavenly Father, I pray that Blaze will come out of the surgery in a new body….one that will be healed, and that he will grow into a healthy baby. Heaven Father, Blaze is your child and you will make the decision. I believe in Miracles so I know you will see him through. I thank you Heavenly Father to give Blaze’s Parents the hope and courage to carry on and with a positive attitude that Blaze will be o.k. Heavenly Father watch over Blaze as you would any child of yours. I ask these prayers in your name, Dear Heavenly Father”. AMEN.

  3. Bonnie S on May 8th, 2012 7:36 pm

    May God bless this family and help them to have the strength to face what their future brings.
    May God guide the hands of the surgeons to help this child, and open their minds to new ideas that might help.
    May God smile down on this tiny child, and give him the will to fight.
    In Jesus’s name, Amen.

  4. Tina on May 7th, 2012 6:38 am

    In agreement with BLUE BOY…..God is able! Lord, we pray for complete healing for baby Blaze.

  5. S on May 6th, 2012 2:15 pm

    I stumbled upon this article looking for something else entirely but had to read it -Amazing story. Your baby is so strong & his strength comes from your Faith in the Lord. Do not waiver based on circumstances or Dr’s reports – keep speaking His word as God is the Healer. Do you have the link for the Facebook page?

  6. Roger Riggs on May 5th, 2012 11:45 am

    Thoughts and prayers are with the family and Baby Blaze. Six years ago this month my little boy was born 10 weeks early there at Sacred Heart and I well know the fear and thoughts that a parent goes through in these times. For the most part we had no major issues such as this to go through but there were the occasional moments that tear at your emotions. After about 3 months we came home. In our time there we did witness many miracles and gained many new friends. Having faith is of utmost importance. Believe.

  7. Angi B. on May 5th, 2012 9:48 am

    My thoughts and prayers are with this sweet, innocent, precious, baby boy and family. I could not imagine having to go through what these parents are going through, god please give them the strength to stay strong for blaze, and heal this baby of all his problems.
    God Bless

  8. DELIA SANABRIA on May 5th, 2012 1:45 am

    GOD OF LOVE, EVER CARING, EVER STRONG, STAND BY YOUR BABY SON IN THIS TIME OF NEED. WATCH OVER HIM, GRANT HIM YOUR HEALING AND YOUR COMFORT. PLEASE GOD LISTEN MY PRAYER.

  9. tonya rolin on May 4th, 2012 10:00 pm

    i couldnt amgine this ever happening to me…. god is good.. yall are in my thoughts and my prayers i love yall and god bless yall… i hope and pray all goes well.. yall are in my thoughts everyday..

  10. Zelma on May 4th, 2012 9:37 pm

    Squeak – May God keep you and your family during these times. I truly know your pain and the decisions that you have to make. My son would have been 4 months old on the 11th, but I know that God had then and has now all power in his hands; he is able. He will never put on you more than you can bear even when you feel like you cant go anymore. So you stay strong and I will keep you and your family in my prayers.

  11. chris on May 4th, 2012 6:45 pm

    We are praying for you blaze and your family

  12. Teresa Odom on May 4th, 2012 5:55 pm

    Praying for yall and your precious baby boy.We dont understand things in life sometimes, but I do know God does things in his time….I believe prayers are music to the Lords ears and babies are angels dear to his heart….God bless yall and the baby. NEVER give up on trusting God.

  13. mary mastro on May 4th, 2012 5:42 pm

    praying hard for you guys !!!

  14. Rhonda on May 4th, 2012 5:05 pm

    Praying that everything goes great for Blaze. Praying for that sweet angel and also praying God gives yall comfort through all this. That lil angel is a fighter. God bless all if yall trough this.

  15. M. Cayson on May 4th, 2012 3:44 pm

    Thank you Renee for the surgery update, Monday 7:30 am. All prayer chains should be aware of Chris, Kathrine and Blaze need. Pray for the rest of the family, whose hearts our aching too.

  16. Judy Bazzell on May 4th, 2012 2:44 pm

    Hello. It was so difficult to read about your new baby and the problems he has encountered. But mostly, as one of our very own nursing students and now RN, having to deal with such a difficult life event. I know you are strong and have much wisdom. I know you have everyone praying for you and your family. Please know so many people care about you and are hoping everything improves each and every day of your lives. He is a beautiful baby. I know you are very proud. Just wanted you to know I am thinking about you and will continue to pray your lives are blessed each and every day. Best wishes…Judy

  17. TR on May 4th, 2012 11:03 am

    Keeping your family in our thoughts and prayers….May God be with you and wrap you in his arms during your time of need….

  18. Jane on May 4th, 2012 10:56 am

    Many prayers are going out for Baby Blaze and his parents, but I do know one thing: whatever happens, God always does the right thing, even when we don’t understand why. So i have added my prayers to the list and hope things go well for all.

  19. William on May 3rd, 2012 10:54 pm

    >>>Can some one please tell me how to contact baby blazes parents?

    Go to the Baby Blaze Fan Club page on Facebook. The link is near the bottom of the article above.

  20. Kelly Brown on May 3rd, 2012 10:11 pm

    Can some one please tell me how to contact baby blazes parents? James Bryant (my uncle in law) asked if I could help design a logo for the benefit shirts for Blaze. I have my first graphic design but do not have a way of contacting the parents. Unfortunately, my uncle James is also in the hospital and I do not want to bother him at this time. If you could please message me on Facebook with the parents info or give his parents my info I would greatly appreciate it.

  21. Renee on May 3rd, 2012 8:32 pm

    Just to let everyone know. The Dr. has decided to wait until Monday morning at 7:30 AM Eastern time to do Blaze’s surgery.

  22. james conway on May 3rd, 2012 7:14 pm

    we had a grandson who was born with heart problems. we also used mory hospital. i will assure you your childis in the best care possible. our grandson is a year old and you would never know he had a problem. the doctors are amoung the best and you know how good god is. so hang in there and let them do their thing.

  23. rwm on May 3rd, 2012 7:03 pm

    Have faith and believe that God is able to bring this precious baby through this surgery. Our prayers are with you.

  24. SaddleUpNRide on May 3rd, 2012 4:48 pm

    The effectual fervent prayer of a righteous man availeth much. Your friends and family at Beulah Chapel continue to hold up precious Blaze to Jesus for his complete healing.
    Blessings to you all

  25. Joanna Taylor on May 3rd, 2012 4:36 pm

    Squeaky, your sweet family is in my prayers for peace and healing!

  26. RAVEN on May 3rd, 2012 4:32 pm

    THIS STORY BROUGHT TEARS TO MY EYES. YOUR FAMILY WILL BE IN MY PRAYERS. GOD IS GOOD. KEEP FAITH AND STRENGTH. GOD BLESS.

  27. Bertie on May 3rd, 2012 3:24 pm

    I am praying for u n ur family… I hope all goes well on friday so ur lil guy can come…

  28. JIM W on May 3rd, 2012 3:22 pm

    What a touching story. May God Bless him and guide the doctors to making him whole and well. Bless his family as well it is tuff times for you and just keep the faith. Bless all of you.
    William thanks for bringing us this story. All too many times we get to busy in life it is times like this that makes one come back to center. I have had 2 heart surgery’s and I know how dangerous this is. I put my faith where it needed to be as I am sure the family is doing right now. It will be in his hands,
    I wish the family all the best!

  29. ANGEL JOHNSON on May 3rd, 2012 1:41 pm

    Thats mi cuzin blaze. i love u blaze baby. ill pray for you!!!

  30. Carolyn Harris on May 3rd, 2012 12:45 pm

    Blaze’s story has touched many hearts. Squeaky, I cannot imagine what you and Katherine are going through…may you find comfort from all the prayers that are going up for all of you, especially Baby Blaze. Prayers will continue for all.

  31. Ruby White on May 3rd, 2012 11:03 am

    He is so precious and you are all in my prayers. God Bless you all!!

  32. M. Cayson on May 3rd, 2012 10:58 am

    I claim Blaze in the healing blood of JESUS CHRIST my Lord and saviour. To heal his body intially. With no complications.
    I pray to to our father ALMIGHT GOD to guide the surgeons hands so you’re will will be done.
    I pray The HOLY SPIRIT brings peace to the hearts of Chris and Kathrine Johnson and their families, knowing that with our GOD the father nothing is impossible.

    To Chris and Kathrine, you have the strength and support from your fellow Sisters and Brothers in CHRIST JESUS. There is a song by Ray Boltz called the Anchor, I hope the lyrics can help you in this time of need.

    Could you please let us know what time the surgeory will be? So at that time we can all pray over him and the surgical team . GOD Bless you :D xx

  33. JRoAnne Bergman on May 3rd, 2012 10:41 am

    Major prayers going up for Blaze!! Please God, keep this little one in the palm of your hand. Guide and direct the surgeons hands to bring about a full healing for him. We know how much you love the little ones and that you are now right there with Blazes’ parents to bring them comfort. Surround Blaze with a band of angels who can give him strength to survive this surgery.Bring comfort to the parents that they are doing all they can to help their little one survive. Make Blaze a visible result of your great healing mercy and miracles. In Jesus Name! Amen

  34. susan and arthur odom on May 3rd, 2012 10:35 am

    To the family, we do not know you personally but we know exactly where you are right now. Our son was born at 27 weeks…13 weeks too early. He weighed just over 1 pound. He had heart and eye problems that required surgeries, had to have blood transfusions, was in NICU for 3 months, etc. Touch and go for quite some time. When he came home from the NICU, he was just at 4 pounds. When i looked at your pictures here, it was such a reminder of the pictures of our own little one. You would be amazed to see his 1 day old picture at hardly a pound to where he is today at 15 months old and 20 pounds. That is why the name chosen for him was Myles…because he had so many miles to go to fight to stay alive and become the adorable, happy little one he is today! Im proud to say that with a lot of love, care, many physicians, specialists and therapists and above all the Man Upstairs, our son Myles is growing by leaps and bounds. He has about 15 doctors and therapists, has some delays and issues ahead but the progress he has made is truly miraculous. We pray for the same miracle for your sweet little boy.
    Dont lose hope or faith, stay strong and stick close to the family&friends that love&care about you. It is truly amazing what the doctors can do. Our family will keep you in our thoughts each day. And if you ever want to talk or just need an understanding shoulder to cry on, we are here anytime day or night. william with northescambia knows how to reach us and we would be happy to help in any way we can. God bless you and your precious son.

  35. Brenda McKenzie on May 3rd, 2012 9:59 am

    My heart goes out to your family. He is a precious baby. You have to be strong and remember that God is holding this precious baby boy in the palm of his hands. He can do things that man will never be able to do. I pray for guidance with Drs. hands that they will be able to successfully accomplish this task. I pray for strength for the family as I know this is a very hard time on everyone.

  36. Rebecca Stafford on May 3rd, 2012 9:42 am

    God Bless you Baby Blaze..May you feel all the love , strength, hope, & prayers that are sent your way. God bless the hands of each one who touches this beautiful one..IN Jesus Name, Amen

  37. Johanna Verellen on May 3rd, 2012 9:41 am

    My thoughts and prayers for Baby Blaze for strength and healing,to his parents for comfort and strength and to the medical team.

  38. Cantonment mom on May 3rd, 2012 9:30 am

    Praying for healing and strength!

  39. Leona Taylor on May 3rd, 2012 9:21 am

    I am Praying for this precious little child of God. There is nothing to hard for God! Prayers also going out to the family for comfort, strength and PEACE.

  40. Shanon on May 3rd, 2012 9:19 am

    Praying for this sweet lil angel & his family god bless you all <3

  41. KAE on May 3rd, 2012 9:09 am

    Prayers sent to you and this lil blessing for strength and healing.

  42. Debbie on May 3rd, 2012 9:02 am

    Prayers going out to baby Blaze, his family and the medical staff.

  43. Cory S on May 3rd, 2012 9:02 am

    You are in my thoughts and have been for weeks now.

  44. LIfendason on May 3rd, 2012 8:59 am

    Praying hard for the family.

  45. Laura T on May 3rd, 2012 8:47 am

    Squeaky, you and your family are in my thoughts and prayers. God has a Plan no doubt. Stay strong! God Bless you!

  46. Terri Sanders on May 3rd, 2012 8:23 am

    the Bible says God has plans for each of us.Plans to prosper us and not harm us.”PLans to give us a hope and a future.Sometimes we cannot see those plans and we question God.Why is this happening or I don’t understand God.We need to remember God sees everything from His heavenly view,we can only see from an earthly view.It is only through our weakness that we are made strong though God’s power.My prayers will be with you and your little fire fighter!!!!

  47. Hope on May 3rd, 2012 8:11 am

    God Bless

  48. Tonya on May 3rd, 2012 7:58 am

    God please continue to hold this precious angel in your loving, and healing arms. I pray Lord that you would heal Blaze, give him strength Lord to continue to fight as he has done over the past 7 weeks. Lord be with Chris and Katherine as well, give them compfort and strength, and God bless this family. Such an amazing story, such an amazing family and baby! I am honored to be apart of the baby Blaze fan club on facebook.

  49. Felicia McCaw Jones on May 3rd, 2012 7:45 am

    I know the pain you are going through, yet yours is a harder situation. I hope and pray that the Docs can get him on the right track so that you can bring him home! You were an awesome guy growing up and you are awesome now. You two stay strong for Blaze — love you and prayers going up!

  50. Heather on May 3rd, 2012 7:40 am

    Praying for your sweet baby boy! I cant imagine going through this. Keep your faith strong!

  51. Monica on May 3rd, 2012 6:46 am

    Baby Blaze is in our prayers and Gods hands. He is so beautiful and already a miracle from God.

  52. Tina on May 3rd, 2012 6:41 am

    Will be keeping this sweet precious baby in my prayers.
    Lord, you are the Dr…..the healer….please bless this precious bundle.
    Amen

  53. 429SCJ on May 3rd, 2012 6:41 am

    Prayers for this precious baby and parents.

  54. riversunshine on May 3rd, 2012 6:39 am

    What a beautiful baby boy…tears are rolling down my cheeks as I read this. I’m ashamed to say that I don’t pray as often as I should, but I will use every prayer I have for this family.

  55. BECKY on May 3rd, 2012 6:34 am

    CHRIS AND KATHERNIE AND BLAZE I HAVE YOU IN MY HEARTS AND PRAYING AND THOUGHT AND IF YOU NEED ANYTHING I AM HERE FOR YOU AND TAKE CARE OF YOUR SELF AND THAT LITTLE GUY I WILL BE TALK TO YOU LATER

  56. Joni Simpson on May 3rd, 2012 6:29 am

    I know this family and they have to be one of the most wonderful families there is.. PLEASE go the yard sale, or make a donation every little bit helps.. Been, still, and will continue to pray not only for Baby Blaze, but momma, daddy, nurses, and doctors,as well…. Keep up the fight you guys… Much Love The Simpsons

  57. Jessica Davenport on May 3rd, 2012 6:21 am

    Thank you for writing this story. This little boy is in the hearts and prayers of so many already and this will help widen the prayer chain. He’s my little hero and his mom and dad’s world!

  58. Old Goldie on May 3rd, 2012 3:41 am

    I pray God will guide the surgeon’s hands and that Baby Blaze will grow into a fine, healthy, strong boy. Comfort and guide his parents. In Jesus’ name, if it be Thy will. Amen.

  59. Blue Boy on May 3rd, 2012 3:25 am

    God is able, keep HOPE alive, you are in our Prayers.

    Be Blessed