FEBRUARY 17, 2017

Hello, and welcome.  I am Nicole Mantooth and my husband is Jacob Mantooth.  Our son is Jacob Mantooth and he just turned 12 years old, yesterday in fact.  

I wanted to start this blog to share his story, his journey through life.  

His story is his and we want to share it for many reasons.  We want family and friends to be able to keep up with everything that is going on.  We want it to maybe help a family facing the same decisions that we are currently facing. We want it to answer questions another child might have facing possible amputation.  We want it to be a place to be for another mother or father to know they are not the only ones who feel overwhelmed in situations like this.  We want it to be a place to inspire!

To get started let me tell you a little about our family.  

Jacob and I have been together for over 20 years.  We have 5 kids, a daughter in law and our other sons girlfriend who we dearly love as a daughter too.  We will have our first grandson joining our family next month too.  

We have always lived in California, but in August of 2015 we packed up and moved to Prescott Valley, AZ.  The older boys and girls still live in CA, so it us just the 5 of us living out here right now.  

Our lives have always been full of adventure filled with ups and downs.  

Now where do I even begin to start with little Jacob.  I will never forget laying on the OBGYN table for a regular check up and ultrasound.  I was there by myself because I was only 12 weeks along so not anything major and Jacob had to work, so I went as usual just to be checked out and then go about my day.  But it wasn't quite like that.  The nurse was doing my ultrasound and then she went to get the doctor.  So many things are still a blur from that moment, but for the most what he told me was that our baby had to much fluid around his brain and that I could consider my options for this pregnancy.  If I chose to have him he would most likely be way behind and have learning disabilities and have a harder time in life.  Wait what? What was he telling me that there was something wrong with our baby?  I don't understand... But no matter what he was our baby no matter what!  

This "water on the brain" was called hydrocephalus.  

The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

The ventricular system is made up of four ventricles connected by narrow passages. Normally, CSF flows through the ventricles, exits into cisterns (closed spaces that serve as reservoirs) at the base of the brain, bathes the surfaces of the brain and spinal cord, and then reabsorbs into the bloodstream.

CSF has three important life-sustaining functions: 1) to keep the brain tissue buoyant, acting as a cushion or "shock absorber"; 2) to act as the vehicle for delivering nutrients to the brain and removing waste; and 3) to flow between the cranium and spine and compensate for changes in intracranial blood volume (the amount of blood within the brain).

The balance between production and absorption of CSF is critically important. Because CSF is made continuously, medical conditions that block its normal flow or absorption will result in an over-accumulation of CSF. The resulting pressure of the fluid against brain tissue is what causes hydrocephalus.

I had to see a high risk doctor for most of my pregnancy and at one point I was also put on bed rest for the remainder of my pregnancy.  We were scheduled to have a c-section at a Children's Hospital about an hour from our home.  

He was born on February 16, 2005 early in the morning, I think it was like 7:30.  I don't quite remember the exact time.  They had told us depending on the severity of his hydrocephalus it would determine how they would go about helping him.  Most likely they were going to install a shunt into his brain to help drain out the fluid that would stay that way.  

He was born an adorable baby boy with chunky cheeks, with NO water on his brain like they had thought.  Our prayers were answered.  He was in the NICU for a week after he was born, but still no hydrocephalus.  

Instead he was born with his foot bent up.  They told me that it was the way his foot was folded up while in the whomb.  

Later on we would discover that he was also born with PDA. 

An unclosed hole in the aorta.

Before a baby is born, the fetus's blood does not need to go to the lungs to get oxygenated. The ductus arteriosus is a hole that allows the blood to skip the circulation to the lungs. However, when the baby is born, the blood must receive oxygen in the lungs and this hole is supposed to close. If the ductus arteriosus is still open (or patent) the blood may skip this necessary step of circulation. The open hole is called the patent ductus arteriosus.

They told us that it was like his tiny body was doing cardio exercise 24 hours a day 7 days a week even while he was sleeping.  His body was working so hard to pump out all the excess blood from his lungs it just worked tons of overtime.  

He had the surgery to fix it at 18 months and he was only 17 pounds.  Once fixed it would never be a problem for him again, for his entire life they said.

As he was younger he was in and out of the hospital for a variety of reasons.  He had RSV/pneumonia, he had asthma related issues, surgery for his PDA, 3 surgeries for his hip and ankle. We are not stranger to hospitals that is for sure.  

In CA we saw an amazing orthopedic doctor at Children's Hospital of Los Angeles.  It took us about 2 plus hours to get down there for each vistit, check up and surgery.  

But the reality is that no matter what has been done for his foot, it has always looked the same, if not worse as he has continued to grow.  He walks with an obvious limp because his legs are different lengths, he walks on the inside ball of his foot.  Which I can only imagine has to go hurt all the time.

But let me tell you something about this boy, he never complains about his foot, he never asks why.  He has always just accepted it and known that this is how he was born and this is story and this is his life journey.  

Now we are living in Arizona and seeing a new doctor at Children's Hospital of Phoenix.  I like the new doctor and he feels that the best thing for Jacob will now be amputation. 

We still have a lot of questions and research and a lot of prayers before we make our final choice.

I invite you to follow along his journey with us.  

~Nicole Mantooth