More amazing stories

Hydrocephalus
When you have no where
else to turn, there is always hope !

When you have no where else to turn, there is always Hope!

Charles Avery Davidson
February 22, 2004
2lbs 5ozs
14 inches long

13 Weeks Too Soon

I was one of those people who didn't know much about prematurity, basically because it had never affected me or my family. Our friend, Keith was very premature and he turned out great, so how bad could it be, right? Even when the doctors told me that I was going to have an emergency c-section at 27 weeks, I still didn't understand what was ahead of us. The strange thing about it is that I pride myself on my due diligence where my family is concerned and I never once thought to get information about prematurity. I suppose it is one of those "it happens to other people, but it won't happen to us". The hardest thing about being pregnant with multiples, is staying pregnant. Needless to say, once the twins were born we began the most heart wrenching time of our lives. It began with the neonatologists calling our hospital room the first night at 2am wanting Brian to come to the NICU. They proceeded to tell him that they weren't sure if Charlie would make it through the night. He had a list of problems a mile long and he was on complete life support. They gave Brian a picture of him to bring to me so I could see him, just in case he didn't make it. I still remember Brian telling me what they said, but I just couldn't comprehend what he was saying. Maybe it was the drugs from the surgery, or maybe it was just God's way of protecting me. I choose to think it was the latter. Needless to say, Charlie did make it through the first night and I was able to see him and Matthew the next day. This would be my first of many, many trips to the NICU. Brian wheeled me in to Matthew's room first and all I could see was an incubator and one lonely chair for a parent or nurse. Matthew was so small and so, so thin, he almost didn't look real laying in that acrylic box. We were given the rundown on his condition and made aware that he couldn't breath on his own, so he was on a ventilator. This was not what I bargained for when I got pregnant. Why wasn't my baby fat and active? We were given information on how the NICU operates. Basically, we were told that the twins would be in the NICU most likely until their original due date, May 20th. My babies were going to be in the intensive care for THREE MONTHS. Only then did it hit me that I wouldn't be leaving the hospital with my babies and the gravity of the situation began to sink in. Then it was on to Charlie's room. The second I crossed the threshold, I began to cry. He had twice the equipment as Matthew and the floor shook terribly from the machines keeping him alive. I was sick to my stomach and I couldn't even stand up to see my baby. I wanted to see him, but I was so afraid. When I did get the courage to stand, all I could see was what looked like an extremely old man laying limp with TONS of tubes and tape. He didn't look like a baby at all. He was so tiny and the tape was so big that it didn't allow me to actually see him. He was under the bilirubin lights so everything was extremely clinical and nothing was hidden from sight. I can't express to you how small he was and I will never forget how he looked, how his tiny chest rose and fell with each breath that the oscillator forced into his small body. There was no cuddling, no comforting my baby. He couldn't be touched and I wanted to scream and scream loud. I was mad at everyone. How could this happen? Then the nurse gave us the details of his condition. Charlie was paralyzed and on complete life support and he had a 50/50 chance of survival. I have never felt so hopeless as Brian finally wheeled me back to my empty hospital room.

Charlie & Matthew spent 66 days in the NICU. During those 66 days, we absorbed more medical knowledge than a first year medical student, and I'm not kidding. I couldn't even begin to tell you the numerous tests and procedures the twins needed to have to survive. I thank God everyday for the doctors and nurses in the NICU. They are truly wonderful, amazing people and we could never repay them for helping our "miracle babies".

Christopher's Story

First and foremost let me tell you - God chose me for Christopher because he felt that I am capable of caring for him and taking care of his many needs. Before Chris the most stress I had in my life was if there was a line at the tanning bed.

In November of 2003 I went in for emergency surgery to remove a lump from my breast. At 5 am I was told that I was pregnant. That was a shocker because I was told I couldn't ever have a child. Everything seemed to be going well until I started hearing at every doctor's visit that it was a heart problem, then spina bifada etc. They finally told me that it was either hydrocephalus or holoprocencephaly. I had a few months to stress, cry and finally find God. I am a single mom and I can truly say that I have never been so scared or unsure in my life.

Christopher's due date was July 14th so on June 18th when I woke up at 12:30 am and couldn't get back to sleep I had no clue he was on his way. After spending 36 hours in labor and knowing that it wasn't going to happen naturally and also knowing that they couldn't stop it I told the nurse to put me in the next available slot for a c-section. Just 4 days before I had an amniocentesis done and they told me his lungs were not even 50% developed. I prayed and begged God to let him be ok.

June 19, 2003 at 9:20 am I had never seen such a beautiful sight as my baby boy. I knew that he would either only be with me maybe 2 1/2 years or he would live a full life and within a minute or two of his delivery they gave me the news that it was hydro and he would be ok. I thanked God for my very special child or should I say Heaven's Very Special Child?

For other parents that find out in utero that there is a problem let me go into some depth.

I had no one but God on my side - my daddy had dementia and was dying, my step-dad was diagnosed with cancer and was dying and my mom was taking care of him. During my pregnancy I was handed papers to read on what might be wrong with Chris - showing pictures of a child with one eye in the middle of the forehead - cyclops to most and horrible, horrible birth defects. I talked to God all the time telling him that I could not do this alone - I was not strong enough. Some where as Chris grew inside me I found that I had been given the strength because I asked for it and yes God hears our prayers and he answers them. It may not be what we want or expect but he answers.

Christopher was taken exactly 24 hours after his birth to Children's Medical Center because the concern for his well being was growing and after reading his medical reports today I found out that my son died the morning of the 21st while I was still in another hospital waiting to be released so I could be with him. That was something they never told me and now I am glad they didn't. Chris has skeletal dysplasia - he has 2 missing ribs, macrocephaly, balanced robertsonian transverse 13 - 14 chromosome, hemi-vertebrae T7 - L1. He has undergone 13 surgeries to date - ETV at 3 days old, 1 week later shunt placement, less than 2 months later shunt revision, hernia repair, 2 eye surgeries, 2 cranial reconstructions and 5 other minor surgeries.

When we returned home after a month in the hospital we lived in a homeless shelter for 4 months. I know and am walking proof that God will get you through it. We have gone from having nothing to buying a home. The fear was overwhelming at times and I cried myself to sleep many a night wondering what I had done to deserve this. I didn't do anything - God saw fit to bless me with an absolute miracle who has brought love and laughter into my life.

The doctor's told me what to look for in case his shunt failed. I can tell you to listen to your heart - Chris & I went to wal-mart with my mom to get her a case of water and while I was looking at something she got upset and said he was throwing up. He ONLY threw up one time but the second I held him in my arms I knew that his shunt had failed. This was on a Sunday afternoon and I immediately got his neurosurgeon on the phone and told him what was going on. Dr. Sacco said he wanted to see him and told me that I had any where from 4 hours to 24 hours to get him there. My mom drove us down there because I had to watch his breathing to make sure it didn't slow. Within 2 hours of arriving at the ER the resident came back and told me that yes his shunt had failed and they would do surgery at 7 am unless there was a problem that night. The whole time my mom was saying that I was being paranoid and there was nothing wrong.

Before he arrived I was told that he wouldn't be able to do many things if any. Enter the power of prayer and Gods awesome will. I was told to expect retardation, severe physical disabilities etc. - say what you want. His first MRI that I was shown all I could focus on was the very thin layer of brain surrounding the fluid. I kept asking how long it would take for his brain to expand and I kept getting the same answer - we don't know if it will. I know now that the doctor's always gave me the worse case scenario so that when he accomplished something new it was a surprise. Chris sat up for the first time with out assistance less than 2 weeks after his first cranial reconstruction. When we went back for his 2 week follow up with his neurosurgeon and he asked me if I had noticed anything new. I replied - like sitting up with no help? He is standing every chance he gets and taking a few steps so I know the hydro and hemi-vertebrae are not slowing him down.

Kelley will tell you that he is that happiest little boy and the sweetest. Before he was born I did not know what I would do or how we would get through it. Thank you God for the strength and determination to take care of Chris and make sure that he has everything he needs.

For parent's who are scared it can be done - look at me I am a single mom and have never had anyone to share the burden with. God sees fit to bless us with amazing, wonderful miracles and I thank him every day for bring Chris into my life and letting me love him because I am truly blessed!!!!

What You Should Know About My Child

Remember that he is, first of all, my child.
Let me see him smile in his sleep and think about how handsome he is
And not about how delayed that smile was in coming.
Help me not lose sight of my son in the shadow of his limitations.
I know you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is
And in following through at home with things that are important.
Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of a vacation, sometimes, physically, sometimes just emotionally, for a day, a week.
I will be there for him after you are gone.
I love my child with an intensity that you can only imagine.
If on a given day I am tired or cross with him, listen to me,
Lighten my burden, but do not judge me.
Celebrate with me, rejoice in who he is and who he will become
But forgive me if from time to time I shed a tear for who he might have been.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth,
It was time again for another birth.
Said the Angels to the Lord above -
"This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
So many times he will be labeled
'different,' 'helpless' and 'disabled'.
So let's be careful where he's sent.
We want his life to be content.
Please Lord, Find the Mother who
Will do a special job for you.
She will not realize right away
The leading role she's asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon she'll know the privilege given
In caring for her gift from heaven.
Her precious charge, so meek and mild
Is heaven's very special child."

Jobe came into our world on January 29, 2007 at 6:40am born second to his identical twin brother Carter. Jobe weighed 8 lbs 14.6 oz, 20.5 inches long, and his head measured 50cm. Prior to his delivery at 20 weeks gestation, I was informed that his head measured "larger than normal." I never really knew how large until he was born. Anyway, he was diagnosed with Hydrocephalus after an MRI was done in utero. He has hydro because of a blockage in his ventricle, which stops the normal flow of cerebral spinal fluid. The cause of the blockage is unknown. This fluid also known as CBF should flow from the spine through the brain and back to the spine. Well, in Jobe's case it doesn't get back to the spine because of the blockage. Twenty-four hours after birth a shunt was placed in Jobe's brain. The purpose is to bypass the blockage so the fluid can drain. This fluid drains through a tube into his abdominal cavity. Then you know what happens to it after that!! (haha) His neurologist at 5 days old told us that he looks great! He would be behind his brother in crawling, walking etc, but cognitively he'd be strong. What wonderful news! He was having feeding issues and having a hard time regulating his temperature. Jobe experienced apnea (stopped breathing) during his stay with me by his side. His recovery was a bit slow, but steady. He was only on the vent 3 hours after his surgery. They anticipated a couple of days. This was the first of his many accomplishments!! Jobe remained in the NICU for 14 days. Then a few weeks later at his check up, we were told his neurologist that he hardly had any brain present and we needed to understand that he may never walk, talk, play etc. We were quite confused, but take it day by day. At 3 months of age, his head circumference increased. His neurosurgeon ordered a shunt study at Our Lady of the Lake, which indicated shunt failure. The next morning we went to Woman's for a revision of his shunt. He put in a magnetic programmable shunt where he can control the pressure (amount of fluid drained). Jobe's is on the lowest pressure possible meaning the maximum amount of fluid is being drained because we thought he was having seizures. During this surgery in March, the Dr. found a cyst on Jobe's brain. It cannot be removed because of blood vessels flowing through it. The Dr. punctured it to allow communication to the rest of the brain. He was again put in the hospital for 6 days for a viral infection, not related to the shunt. We thought it was at first because he went 13 hours without eating. This "cold" hit him hard. He was on fluids for 6 days. After 3 days, they took him off, but he was not strong enough to eat. Sucking a bottle was a challenge for Jobe. It always seemed to "poop" him out. He has been doing great since. We have to take every symptom or slight illness seriously because it could be a sign of his shunt failing or becoming infected. Some symptoms are fussiness, vomiting, fever, redness at the shunt area, lack of appetite etc. These are your common symptoms to many minor illnesses, so we are always on guard. We measure his head to make sure it isn't growing. We had recently found a new Dr. in Memphis, Tenn. who is affiliated with LeBohnner Children’s Hospital and he also performs the brain tumor surgeries for St. Jude. He is on the board for the American Pediatric Neurosurgeon group. We met him in November; his biggest concern is that Jobe’s brain is abnormally shaped. It does not look like a regular brain. His lateral ventricles (there are 2) are so big they have almost become one. He should have at least 2cm of cortex (brain matter around the ventricles) and he has less than that, which indicates development delay. We don’t know to what extent. He would like to see Jobe again in February for an MRI. Jobe has only had CT scans except for when I was pregnant. This Dr. would like an MRI to see how Jobe’s brain is developing. Jobe is a very strong boy with Jesus filling his heart.