The story of a real hero
 

Caution: Long, and potentially tear-jerking.....but has happy ending!

Some of you have expressed interest in hearing my son's story. I am more than happy to share, because my kiddos are the light of my life.

This is the abridged version of my son’s life story. Maybe it will allow you to see why my son is my hero. Brayden, my second son, was born 3 months premature weighing 2 lbs 6 oz and was 14 inches long. (For a size comparison, most fountain drinks are 36 or 44 ounce, Brayden was 22 oz. and a Barbie doll is 12 inches) He had to be resuscitated in the delivery room and was immediately put on a ventilator because his lungs were too immature to function. The first time I saw my tiny son was on a TV screen in my postpartum room 6 hours after he was born. There was a little red skinned baby hooked up to so many tubes and wires that you could barely see him. I was initially told he would not survive 24 hours. I held him for the first time when he was 2 ½ weeks old. He took his first solo breath at 3 weeks old. He had many ups and downs during his stay in the hospital some of which included part of his intestine dying, bleeding in his brain, infections in his blood stream, and 13 blood transfusions. He stayed in the NICU (neonatal intensive care unit) for 3 months, and weighed 5 lbs 4 oz and was 17 inches long with a heart monitor, oxygen, and 13 medications.

I thought the worst was behind me when I took him home. Little did I know it was just the beginning of a 4-year nightmare. He was re-admitted to PICU (pediatric intensive care) only two weeks after he came home due to cardiac arrest. This occurred over 80 times in his first year of life. He began having seizures at 7 months of age. He began wearing glasses at 10 months, and he was diagnosed with Spastic Quadriplegic Cerebral Palsy at 11 months old. By the time he reached his 1st birthday, his medical bills had reached 1.2 million dollars. He was unable to sit up, eat, or talk and weighed only 14 pounds. A feeding tube was surgically placed into his stomach because he was unable to eat orally. At a year and a half, his GI tract went into total failure so he was placed on TPN (total parenteral nutrition. This is IV nutrition that is delivered directly to the heart.) The TPN caused him to go into multi-organ failure. His kidneys, liver, pancreas, and heart were all failing. They refused to put him on transplant lists because they felt he would have died anyway, and “wasted” a donated organ. The doctors felt he was on borrowed time and we should just make him comfortable. We took him home to die. He wasn’t ready to give up though. He fought with every ounce his tiny body could muster. He kept getting very serious blood infections from the special IV line in his chest, making his ordeal only more complicated.

By his second birthday he weighed 22 lbs, had begun sitting with support and his medical bills had passed the 2 million mark. He remained on the IV nutrition until he was 2 ¾ years old. His guts finally started working again, and we were able to place a special feeding tube directly into his intestines. Eventually he was able to be weaned from that, on to a regular feeding tube in the stomach. Just as we were making that transition, he had a massive seizure that lasted 3 ½ hours. It left him comatose for two days. He did eventually recover fully and even learned to sit up by himself shortly after. He began eating orally at the age of 3.

From birth to current, he has undergone 25 surgeries and hospitalized 53 times, yet he is always smiling. He is nearly 5 years old now. He no longer uses his feeding tube, he talks in full sentences, and he can now walk short distances. While he still has congestive heart failure, the rest of his organs have healed and function properly. He is no longer on oxygen, and takes only two medications. He has been seizure free for 4 months. Although he is still small, he is growing at a steady rate. He is 33 lbs and 37 inches tall. He is very big in his mommy’s eyes. Words cannot express how proud I am of him, and all of his accomplishments.

Picture of Brayden at 3 years old.

Wow!
 

Jayna:

What a story and what a little hero - and fighter - Brayden really is!

Thanks for sharing him with us and God bless both of you guys.

I wish you and your son only the best for the future.

what a fighter!! after what he went through he can survive anything.

I guess I should have heeded the warning, because there're a few tears rolling down my cheeks as I type this.

It's amazing how "weak" someone can be, and still be stronger than any of the rest of us. Some people's spirit is just so powerful, it amazes me.

Thank you for sharing your story with us. Not only is it touching, but it also gives some serious perspective. The next time I feel like complaining about work, or how bad things are going in my life, I'll think about Bryaden, and his fight.

Brayden is an example for all of us, and I wish you both the best of luck, and all the happiness in the world.

Thank you, Jayna, for taking the time to share that story with me (us). That really is remarkable, and it just backs up what I said before; you are one hell of a woman. I sincerely wish you and Brayden nothing but the very, very best!

FWIW, I have recently come to the conclusion that women are by far the superior sex, and if in fact there is a God, odds are she's a woman, too. I can't go into detail, but the women I know, and have known, will put up with, deal with, and work through the toughest, hardest, most painful experiences, and keep on ticking. I don't know too many men that have the kind of strength it takes to be a woman. Really.

Take care,
-Chris

2000stanggirl The next time you want to see a hero and your son is in another room, just look in the mirror. Theres definately more than one hero in this story.

I wish you and your family nothing but the best.

Andy

You know, my expirence with Brayden allowed me to see many very special children fighting against the odds. I came to the conclusion that most adults fighting the same battle would be unable to keep fighting, much less keep smiling. You wouldn't believe the number of kids with cancer that I saw in the hospital playroom with smiles on their faces, despite the horrible chemotherapy they were enduring. Kids have such a drive to live, even the tiniest of infants. We could learn a lot from these kids. I know that Brayden has taught me much more than I will ever teach him.

Funny you should say that.....my husband at the time was totally unable to deal with the situation. He very rarely came to the hospital (I stayed with Brayden 27/4) and when he did it was for very short times. My ex chose not to bond with Brayden out of fear (I think he thought it was best not to get attached because his prognosis was so poor) and shame (he couldn't deal with having a child that was "different") My oldest son, Travis, is only 17 months older than Brayden and is extremely gifted (estimated IQ 155+!) Sadly, my ex could only bond with Travis. His attitude eventually lead to the demise of our marriage. I felt as though I was a single mom when it came to dealing with Brayden's issues. I am the one that stayed up all nite watching him breath when his heart failure was causing problems. I am the one that got up in the middle of the nite to change his IV bags and take vitals.

However, despite my ex husbands parental short comings, I must point out that not all men are that weak. My husband now has unconditionally accepted both of the boys. He has never been married, and has no children of his own, but has more love for the boys than their own biological father. He has stood by me, helped me make medical choices, and supported Brayden thru surgeries and hospitalizations. I firmly believe his love has helped Brayden overcome many obsticles, and allowed him to reach for his full potential. (on a side note, I don't think he could handle being at home with them all day like me. LOL)

Thank you, Andy. I have not yet learned to take any credit for Brayden's survival, or recent developmental accomplishments. Perhaps some day, but for now I believe that all I have done is what any mother should do. I have given my son unconditional love, been there to love away the pain, taught him that "can't" does not exist, and encouraged him to reach for the higher bar in everything he does. I have given this both of my sons this.

Interestingly, Brayden, whom doctors said would not survive, and if he did he would be little more than a vegtable. Now, at the age of 4 3/4 he knows what most other 4 year old's know, and he can count to ten in 4 different languages. No one will ever convince me that he has sub-normal intelligence, or that he is unable to succeed in life.

Jayna,
You know that without your strength and persistence your beautiful Brayden would not be here with you today. You are truly the real hero in this. These kids are so strong and they haven't had the experience in life to not be happy. It's incredible how resilient they are.
My great grandmother keep telling me from the day my son was born "special", that "The lord picks special people to take care of his Special Children".
Take care of that Beautiful Angel. C-ya, Melisa:)

No way for you to accept credit? You are the sole person who believed in your son enough for him to fight. He was fighting for himself and you.


My neighbors are in the EXACT situation you are in. Their daughter Paula is 7 and weighs about 35lbs. She has to wear glasses as well, and has the tube in her stomach, even though she can eat orally. Both of your stories are about identical. Maxine was the one who stayed with her while Sam sat on the backporch drinking Busch and smoking dope. He loved his daughter to death, but couldn't drop his addictions. Well, a year ago, he found Christ, and dropped everything. He said it was a message from God that his daughter needed him. I've helped them out with many of things, and I can ONLY IMAGINE how tough, yet rewarding, it is to take care of your child.

I must admit...you got some tears rolling from me too.

Well this part I can comment on, because I have spent time in the NICU with my kids when they were born. We must be 'lucky' (if you will) cause after they were released everything was fine with them.

The NICU is an incredible place. I cant put my thoughts of the NICU in to words. Its like a whole nother world. Nowhere else on earth will you see things that are so astonishing. The tiniest infant in the world might have a drive to live thats unparalleld. The doctors and nurses are incredible too. Being able to operate and just administer care to an infant who isnt much bigger than your two hands put together, is just amazing. My time spent there has changed me forever.

Chris: Its official! You are hereby voted out of 'manland'... :D

Oh yeah, dont tell anyone, but I agree with you 100%.

Andy

Hehe, just as well, I was getting sick of seeing nothing but other guys every where I looked! "Manland" is very overrated. :)

Take care,
-Chris

I'm glad your son is doing better. Amazing that his systems keep regenerating, and begin to function once again. I can only hope his heart follows suit.

It's truely a story that shows how powerful the bond between the mother and child is. You, and your son have both fought and accomplished much more than anybody gave you the chance of doing.

As a side note, and I'm not saying this as an excuse, but psychological studies have shown that the male usually feels he has failed his child, that whatever is the cause of the problems with their children can somehow be their inadaquacy, both biologically, and mentally. As his biological father looked at his struggling son, it's reasonable to believe he felt it was his fault, and reminding himself of his failure as a father 24/7 was probably very hard. It's both a terrible thing, and a blessing in disguise as Brayden now has a loving father to fufill the need like his biological father should have been able to do.

I think children fight so hard because they don't see dreams crushed, and hopes disappear. They are innocent, and they don't have the experience to show them the difficulties and hardships people face throughout their lives.

Best of luck to you, your husband, and your children, Jayna.

As far as the superior sex thing goes, I don't feel labelling one sex as superior to the other is realistic on a general level. For individual situations, I think I've seen enough of how the two sexes function to make a relatively accurate guess at which sex is more likely to perform adaquately in a given situation.

Melisa,

Your great grandmother is a wise woman :)

I had my tubes tied a few years ago, out of fear of putting another baby thru what Brayden has been thru. Now that I am re-married, my husband and I would love to have children. Adoption is a possibility for us. It makes me so sad to look at the adoption sites, because of the children with disabilities that are waiting for someone to love them, many of them disabled by the hands of their parents. More than likely, if we choose to adopt, it will be a special needs child. Hopefully we can give hope and happiness to another special child.

Andy, you're right. The NICU is a completely different world. No parent leaves the NICU the same as when they entered. You see things there that will forever haunt your memories....things that you once thought only belonged in science fiction.

I am happy to hear your children left the NICU relatively unscarred. You are indeed blessed.

Jayna,
Brayden sounds like one tough little dude. Thanks for sharing your story with a group of strangers (they don't come more stranger than us:D ) Please keep me(us) posted on how he's doing, as he and your family will be in my prayers.
God bless,
Mike