MARCUS LEFT US ON 4/29/2012. HE FOUGHT HARDER THEN ANYONE EVER SHOULD HAVE HAD TO. THANK YOU EVERYONE FOR ALL THE PRAYERS AND SUPPORT
Hi,
my name is Marcus Lee and I was born on 10/10/2011, I share a birthday with my mommy :) I was born 9 weeks early, only weighing 3 pounds 5 ozs. Mommy already knew I had two small holes in my heart but we were surprised to find out that I also had a hole in my diaphragm also known as a hernia. The hole was kinda big and some of my organs had moved up thru the hole into my chest cavity. They had compressed one of my lungs and it was making it hard for me to breath. When I was born I was airlifted to Children’s Hospital in Birmingham, AL. where doctors said I probably wouldn't make it thru the first 72 hrs. I was also diagnosed with with Unigue 8p23.1 duplication syndrome.
I had surgery on my diaphragm when I was almost a month old and my mommy was told that as soon as I was strong enough and was able to drink my bottle I could go home and then come back when I was 6 months for my heart surgery. I struggled with my breathing and taking a bottle so the Doctors decided to go ahead with the heart surgery when I was 2 in a half months old, the Monday before Christmas 2011. Of course I did great! The only problem was I was really having hard time getting off the ventilator so at the age of 4.5 months I had to have a tracheotomy. Doctor told mommy that I should heal within a week and then she would be taught how to care for me and my trach and I could go home. Well I continued to be on the ventilator and they were giving me tons of drugs. I was taking (and still on) Methadone, vercet, dopamine, some kind of paralyzing drugs and a few others. I am still in Birmingham's Children's Hospital and I am now 6 months old.
The Doctor had some really rough news for my mommy and family. I had a really bad day Monday March 19th and Mommy Grandma and Lizzie had to rush up here to see me. Doctor says that he has never seen a baby with both a diaphragmatic hernia and holes in the heart at the same time. My heart was working so hard and because of my little lung it has been a major struggle for me to breath. The blood was starting to turn blue and it was hard for my lungs and heart to do their jobs. The doctor says he has done everything he can think of to do for me but does not believe in giving up. They are working on transporting me to South USA NICU in Mobile as soon as possible and he is worried that I might not make the transport. My mommy and Grandma and all my friends and family believe I will make it and are not going to give up on me. He says that I might have brain damage and could be in hospital for a very long time. He kept saying that it is a good chance I wont make it much longer. Grandma and Mommy were surprised at all the things the doctor was saying to them. For the last five months no one has ever said a word about how bad I really am. They felt the need to sugar coat everything and waited till now to dump all this on them at once.
I keep having episodes where I stop breathing and they do what they can to resuscitate me. The Doctor thinks that it would be best for me to be close to Mommy and family so they can spend more time with me.
Well for two weeks after the March 19th visit with doctor I was doing really good, I was down to 30 on my vent and was being weaned off some of my meds. Mommy was hoping that I was gonna be moved to south but I guess the Dr changed his mind.
Mommy came to see me on April 21st and was told that the Dr had given up and had done all he could think of to do for me. He suggested that Mommy unplug me from all my machines and just let me go. Says that I can not be moved to Mobile unless they sign a DNR and treat it as a compassion transport where I go home to die.
Not once did he mention getting a specialist to come see me or that he even tried to get a consult with any other doctors.
Well Mommy says she is not going to give up. I know when my mommy is with me, I squeeze her finger and try really hard to open my eyes and see her. My stats are better and I do really good when she is with me.
Problem is it is really hard for mommy to stay with me, my family lives in Mobile which is 4 hours away and it costs a lot of money for gas and lodging. She is trying to get help from the angel Ride foundation who helps families in Mobile that have children up here in Birmingham. My Paw Paw Jeff, Great Grandma Kricket and so many friends and family have all been helping as much as they can to get Mommy up here with me.
For the first two months My mommy and Grandma Tiffani and big sister Lizzie were staying across the street at the Ronald McDonald house so they could be close to me. Grandma and Lizzie went back to Mobile right after my diaphragm surgery and Mommy stayed with me, shortly before my heart surgery my mommy boyfriend got messed up and decided he wanted to drive to Mobile to get my sister. He started fighting with my mommy and she jumped out of the van on I65, he stopped dragged her into the van and continued to beat on her and told her he was gonna kill her, he got off interstate and she jumped out of van again and hid until he was gone. Grandma and Uncle Jake came to get her and bring her back to hospital. Since her boyfriend did all that bad stuff to mommy she was kicked out of the Ronald house and now stays in a hotel 3 miles away, Its been hard since the room is 158.00 a week but we have a great family and awesome friends that help mommy so she can be close to me. Everyone is doing all they can to help mommy but it is getting harder and harder . Mommy, Grandma and my big sissy will be up here for a few days to be with me and then they will have to go home and try to come up with more money so they can come up and stay longer.
WE SAY GOODBYE TO OUR LITTLE FIGHTER. RIP MARCUS LEE, WE LOVE YOU AND YOU WILL BE MISSED.
Marcus was also diagnosed with Unigue 8p23.1 duplication syndrome. for more info click here
http://www.rarechromo.org/information/Chromosome%20%208/8p23%20Deletions%20FTNP.pdf I do not care what doctors think, Marcus is gonna get thru this and show everyone just how tough he really is :)
WE ARE NOT SURE HOW LONG OUR LIL FIGHTER WILL BE IN THE HOSPITAL, WE ARE HOPING HE WILL BE ABLE TO COME HOME VERY SOON, HE IS STILL FIGHTING WITH HIS BREATHING. PLEASE KEEP MARCUS IN YOUR PRAYERS!!!! WE HAVE A LONG ROAD AHEAD OF US AND IT HAS BEEN HARD ON US EMOTIONALLY AND FINANCIALLY, EVEN AFTER MARCUS COMES BACK TO MOBILE'S NICU IT IS GONNA BE HARD.
COMMENTS AND PRAYERS
Name
Misty Brock
Comment
Keep fighting baby boy, Prayers going up for you and your family. You stay strong.
************************************************************************************************
Name
Kylan Defore
Comment
Just wanted to say I am keeping yall in my prayers. life is hard but every thing happen for a reason that we will never no why god wanted it to be like that but he knows what's best. keep yalls head looking to him and he will bring you through it.
**************************************************************************************************
Name
Brandy Patrick
Comment
Stay strong baby boy you have made it this far and your mommy really needs you and your family are in my prayers mommy you stay strong God will hear you when no one else will he understands so talk to him
***************************************************************************************************
Name
Abbygayle Eubanks
CommentHes so cute! Hope hes doing good. Hes always in my prayers! <3
****************************************************************************************************
Name
K Will
Comment
I'm praying for your strength as well as your family's strength. If you're already this tough, you'll be an unstoppable young man. Your family is blessed to have you.
****************************************************************************************************
Name
Ann Biggs
Comment
I am so sorry Marcus for all the hard things you have gone through since you have been on this earth, God has a plan for you, He will not allow you to suffer, You have so many prayers going out to you, May god bless your little body and Get you well so you can go home to be with all the people that love you, & Mommy hang in there, You have been a good mother & God will reward you for this, No matter how hard it seem"s, God never put"s more on you that you cannot handle, so keep praying, Put it in the Good Lord"s hands and he will handle the rest, God Bless you both, In Jesus Name I pray Amen<3
*****************************************************************************************************
Name
Kylan Defore
Comment
If there is any thing i can help with plez let me know and keep me up to date on how he is doing hereing his story has help me come back to my self i have had a lot going on also and life was getting really hard but that little boy has open my eyes about how much hard it could be so thanks for puting it out there.
******************************************************************************************************
Name
Chris P
Comment
I am praying for all of you for answers and strenght. He is beautiful. There is a point when medicine goes so far and God takes over.
******************************************************************************************************
Name
alisha lindfors
Comment
What a sweet little boy! Hang in there little fighter!
Have you checked out wishuponahero.com yet? You can post on there about stuff you need, like finding him a specialist (someone may know someone), help with the money for gas and a place to stay so you can stay closer to him, etc.
*******************************************************************************************************
Name
tiffany Lewis
Comment
Hey there nephew I<3 and miss u...I cant wait to see this summer
*************************************************************************************************8Name
Beth Vitale
Comment
I am sorry that he lost his battle. God has reasons for everything that happens. I know Marcus brought lots of joy to the family and made his momma alot stronger. He will be greatly missed. Abby really loved him alot. Maybe someday another baby will not suffer like Marcus because the doctors learned something with him that will help others. I wish I could have met him in person but I still feel like he was part of our family too. Becki and yall mean alot to us. If you or Kayla need anything let us know we will help if we can *********************************************************************************************************Name
Jeni Venables
Comment
Sending all my love and prayers to Kayla. You were ARE a brave strong mommy and I'm deeply sorry you had to go through all if this. but do know you have a strong support system surrounding you to strengthen and love you. We love you and are praying peace over you honey. And your mom an Lizzie too. Be well. Hugs until we meet again - soon??! Jeni 4/29/12 ************************************************************************************************************Name
Mistie Kalista
Comment
What Makes A Mother
I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.
A Mother has a baby
This we know is true.
But God, can you be a Mother
When your baby's not with you?
Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
And some I send to filll the womb
But there's no need to stay.
I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say
"We go to earth and learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow is where I lay.
I stroke her hair and kiss her cheek
And whisper in her ear
"Mommy don't be sad today
I'm your baby and I'm here."
So you see my dear sweet one
Your children are OK
Your babies are here in My home
And this is where they'll stay.
They'll wait for you with me
Until your lesson is through
And on the day that you come home
They'll be at the gates for you.
So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start!!!
**********************************************************************Name
Ann Biggs
Comment
Kayla, you have been such a strong mommy, I am so proud of you for being so strong for Marcus, He will be sadly missed, most of all he wont be in pain Anymore, It hurts my heart cause I wanted him to get better so he could come bk here, God always knows what is best, even if we dont agree, Like my pastor said, "Somethings we will never understand", I Wish you the best & will keep you in my prayers, Most of all, you were a fantastic mommy, Marcus is our little angel looking over all of us, one day we will all be together again!!! Love you sweetie & if there is anything I can do, please let me know, you & your Mom need a big hug from me, cant wait to see you all, Hugs Kayla;-))) Again I am so sorry;-(((( love always, Ann & Andy Biggs
Name
Misty Brock
Comment
Keep fighting baby boy, Prayers going up for you and your family. You stay strong.
************************************************************************************************
Name
Kylan Defore
Comment
Just wanted to say I am keeping yall in my prayers. life is hard but every thing happen for a reason that we will never no why god wanted it to be like that but he knows what's best. keep yalls head looking to him and he will bring you through it.
**************************************************************************************************
Name
Brandy Patrick
Comment
Stay strong baby boy you have made it this far and your mommy really needs you and your family are in my prayers mommy you stay strong God will hear you when no one else will he understands so talk to him
***************************************************************************************************
Name
Abbygayle Eubanks
CommentHes so cute! Hope hes doing good. Hes always in my prayers! <3
****************************************************************************************************
Name
K Will
Comment
I'm praying for your strength as well as your family's strength. If you're already this tough, you'll be an unstoppable young man. Your family is blessed to have you.
****************************************************************************************************
Name
Ann Biggs
Comment
I am so sorry Marcus for all the hard things you have gone through since you have been on this earth, God has a plan for you, He will not allow you to suffer, You have so many prayers going out to you, May god bless your little body and Get you well so you can go home to be with all the people that love you, & Mommy hang in there, You have been a good mother & God will reward you for this, No matter how hard it seem"s, God never put"s more on you that you cannot handle, so keep praying, Put it in the Good Lord"s hands and he will handle the rest, God Bless you both, In Jesus Name I pray Amen<3
*****************************************************************************************************
Name
Kylan Defore
Comment
If there is any thing i can help with plez let me know and keep me up to date on how he is doing hereing his story has help me come back to my self i have had a lot going on also and life was getting really hard but that little boy has open my eyes about how much hard it could be so thanks for puting it out there.
******************************************************************************************************
Name
Chris P
Comment
I am praying for all of you for answers and strenght. He is beautiful. There is a point when medicine goes so far and God takes over.
******************************************************************************************************
Name
alisha lindfors
Comment
What a sweet little boy! Hang in there little fighter!
Have you checked out wishuponahero.com yet? You can post on there about stuff you need, like finding him a specialist (someone may know someone), help with the money for gas and a place to stay so you can stay closer to him, etc.
*******************************************************************************************************
Name
tiffany Lewis
Comment
Hey there nephew I<3 and miss u...I cant wait to see this summer
*************************************************************************************************8Name
Beth Vitale
Comment
I am sorry that he lost his battle. God has reasons for everything that happens. I know Marcus brought lots of joy to the family and made his momma alot stronger. He will be greatly missed. Abby really loved him alot. Maybe someday another baby will not suffer like Marcus because the doctors learned something with him that will help others. I wish I could have met him in person but I still feel like he was part of our family too. Becki and yall mean alot to us. If you or Kayla need anything let us know we will help if we can *********************************************************************************************************Name
Jeni Venables
Comment
Sending all my love and prayers to Kayla. You were ARE a brave strong mommy and I'm deeply sorry you had to go through all if this. but do know you have a strong support system surrounding you to strengthen and love you. We love you and are praying peace over you honey. And your mom an Lizzie too. Be well. Hugs until we meet again - soon??! Jeni 4/29/12 ************************************************************************************************************Name
Mistie Kalista
Comment
What Makes A Mother
I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.
A Mother has a baby
This we know is true.
But God, can you be a Mother
When your baby's not with you?
Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
And some I send to filll the womb
But there's no need to stay.
I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say
"We go to earth and learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow is where I lay.
I stroke her hair and kiss her cheek
And whisper in her ear
"Mommy don't be sad today
I'm your baby and I'm here."
So you see my dear sweet one
Your children are OK
Your babies are here in My home
And this is where they'll stay.
They'll wait for you with me
Until your lesson is through
And on the day that you come home
They'll be at the gates for you.
So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start!!!
**********************************************************************Name
Ann Biggs
Comment
Kayla, you have been such a strong mommy, I am so proud of you for being so strong for Marcus, He will be sadly missed, most of all he wont be in pain Anymore, It hurts my heart cause I wanted him to get better so he could come bk here, God always knows what is best, even if we dont agree, Like my pastor said, "Somethings we will never understand", I Wish you the best & will keep you in my prayers, Most of all, you were a fantastic mommy, Marcus is our little angel looking over all of us, one day we will all be together again!!! Love you sweetie & if there is anything I can do, please let me know, you & your Mom need a big hug from me, cant wait to see you all, Hugs Kayla;-))) Again I am so sorry;-(((( love always, Ann & Andy Biggs