AT A GLANCE
Diagnosis:
1. Congenital Hydrocephalus
2. Cortical Visual Impairment
3. Macrocephaly
4. Gastroesophageal reflux disease
5. Asthma
6. Sensory Integration Dysfunction
Stats
6 Brain Surgeries
2 Eye Muscle Surgeries
2 Hernia Surgeries
3 Failed Hearing tests
Failed all vision tests
(Too many to count) CT’s, X-Rays and MRI’s
Oxygen need for 5 months
Monitors needed for 7 months
NG feeding tube for 2 weeks
Meningitis Infection
Staff Infection
RSV Infection
1 Blood Transfusion
PICC line procedure
3 Full Respiratory Arrests
5 daily medications
too many ER visits to count
29 days admitted to the Hospital
270 Therapy visits (so far)
46 Doctor’s appointments (so far)
Full Story
Carter is a beautiful baby boy who was born with a condition called Hydrocephalus. We planned every part of the pregnancy, had wonderful prenatal care and took extra precautions. At 7 weeks and 4 days after conception our perfect baby developed a tumor while his brain was forming. This tumor attached to a tiny tube in his brain. This tube is supposed to drain fluid and did not properly form. When a baby is developing their skulls are soft, this allowed the fluid to build up which made his head full and very large. They regulate this fluid now with a shunt that carries the fluid directly from his brain to his tummy to be absorbed. The remaining 9 months of pregnancy the fluid squashed his brain and all of our medical problems are because of this excess fluid surrounding his brain.
While we were pregnant we had plenty of doctors, some that pressured us into aborting. But every one of our doctors said that this baby would not have any quality of life, that's IF he lived at all. It was the worst emotional roller coaster we so far experienced. The doctors told us he would never walk, talk or function. They used the word "mentally retarded" over and over (we hate the r-word). So we started to pray, we would cry and pray, and cry and pray, every single day. We asked to just let this little spirit live, we didn't care about function we just prayed for him to live. This affected our little community around us. We had great words of hope and a sea of prayers.
Our delivery day came, most enter the hospital excited and anxious, we entered cautious. No matter what happened that day, we knew that day would change our lives forever. Entering the OR were tons of waiting teams, a team for me and several different teams for the baby, depending how critical he came out is to what team he was passed off to. The doctor pulled him out by c-section and he was passed through a window into the arms of the most critical team, I didn’t even hear him cry. Back in the recovery room, still no information. Then my darling Eric entered pail and in disbelief. We had never seen a hydro baby. A normal newborn’s head size is around 32 cm, Carter’s head size was 52 cm (that’s the size of an adult head on a newborn body). The nurse came in and gave me report on Carter with compassion in her eyes. Apgar score 9 out of 10. No oxygen need. No life saving efforts. Healthy newborn. I was put in a section of the hospital where women delivered but didn’t have babies, they either didn’t make it, were in the NICU or they were transferred to the children’s hospital next door. An awful feeling roamed that unit. No excited visitors, no crying babies, no excited congratulating words from nursing staff. Eerie. We spent the next 2 days straight in the NICU at bedside. They were very sensitive and caring. They spoke words like “obviously meant to be here” and “tough little shit”.
Two days after birth he was transferred to the Children’s hospital to have his first shunt placed. Brain surgery. My baby is having brain surgery. I can’t even wrap my mind around such a statement. How did this happen? This wasn’t the plan. All of the healthy children in the world, not my family, not my baby.
Surgery a success. He was put in a regular hospital room to recover. He developed an unexplained oxygen need after surgery that lasted for 5 months. He also was a terrible eater so he had a NG feeding tube placed. He failed a hearing test, we were told that he was going to be deaf forever. Looking into our precious babies eyes, we could tell his brain had little function. They sent us home with a 6 day old baby, fresh out of brain surgery with tubes coming out of every part of his body, that’s right, sent him home. Overwhelmed. Exhausted. Confused. Scared. Is there a word for what we felt?
2 days before Christmas, Carter 3 weeks old. We had a handle on tubes and monitors. That day Carter wasn’t responding to any form of stimulation. His monitors started going crazy and we headed into the ER late Saturday night, our first ER visit. We packed for a couple of hours, we know better now. They examined, they put a giant needle into the top of his head and pulled fluid out. Before we knew it, he was bleeding from several points in his little body due to all the test they were running. CT’s, X-rays, shunt taps, blood work, IV’s, catheter, more monitors, it was awful but we didn’t see it coming. Doctor rushed in and said my precious baby has meningitis and staff infection and rushed us up to the Pediatric Intensive Care Unit in critical condition. The next morning (Christmas Eve) he was rushed into surgery for his shunt to be taken out and an external drain placed to drain the fluid from his brain to a bag next to his bed. He came back from surgery to a normal hospital room, the nurse gave him some Morphine for the pain and my baby Carter quit breathing in my arms, his heart quit beating and he went into full respiratory arrest. The nurse threw him on the hospital bed and through tears I watched my baby dying. They called a code blue and people came running. They bagged him, did chest compressions and called for the drug that reverses the effects of Morphine. Years passed. I was picked off the floor where I lay sobbing and rushed out of the room. Chaos, people running, people screaming commands, chaos. His heart started. Respirations started. Carter was transferred back to ICU in extreme critical condition and not stabilized. The drain that went from his brain into a bag was accidentally yanked out of his brain during the scuffle. So the OR was prepped and back to brain surgery. He suffered seizures all night and died 2 more times having to be resuscitated all on Christmas Day. We spent 4 weeks more in the hospital needing a blood transfusion and several more brain surgeries. The hardest months of our lives.
We finally had to hand our faith over to our Heavenly Father and accept His plan. We found comfort in prayer. We found faith in Carter. We never accepted the harsh words of our doctors, the lack of sensitivity in people who we trusted. The very people who had our lives in their hands. The very people who were too just people. Vulnerable just like me. Through our faith and a lot of fight, our baby pulled through and started showing signs of life. He was discharged from the hospital on January 10, 2008. We then realized we spent Thanksgiving, Eric’s Birthday, Christmas and New Years in the hospital. It was the next year? It was surreal to leave the hospital. How many days has it been since I felt crisp outside air? How many days since I had seen sunlight? Oh going home! It was refreshing to be out of medical care, also absolutely scary to be out of medical care.
Months pass and Carter can hear, see, eat and respond there are definitely signs of life, his eyes are windows to such an amazing spirit. We were chosen, chosen for a greater plan, we are so blessed to be the parents of such a spirit, we could feel how close he was to Heaven. We knew he had a great purpose on Earth. We knew we were in the presents of a greater force. We knew we were so blessed. As parents we strive to teach our children, but we have been taught so much by Carter, he was chosen for us, we were chosen for him.
He continues to improve, no oxygen need after 5 months. No monitors needed after 7 months. He didn’t miss many milestones, we started defining normal a little differently than others. He certainly has his ups and downs. Normal for us is daily vomit, sometimes several times a day. Daily medications. Daily appointments.
The emotions are unexplainable. Every mommy worries about her babies, I guess we worry about predators or gangs or maybe too much sugar or something like that. I am also a mommy of a healthy 12 year old boy, I know the worry. But I had never experienced the constant agony of worrying like this before. All day and all night I worried about his survival. I would stay awake all night watching his chest rise and fall. I would excessively wash my hands knowing a single virus would take his life. If he overslept I dreaded looking over the bassinet walls next to our bed fearing he would have been taken from this Earth during the night. Then the significant worries like if he’ll ever walk, hear or see. Or the big worries like will he ever say mom or enjoy chocolate cake? Will he ever experience playing in the rain or even smell the rain?
Each day he got stronger and more functioning. Each day we let our guard down just a tiny bit more. It was all hard work but the hard work just began.
Carter is followed by 11 different doctors in specialty fields. Also by 6 different therapists. They all look and test for any signs of medical problem, developmentally falling behind or missing a milestone. This is our team. It takes a village to raise a child, this little dude takes a whole team.
Carter is now 18 months old and he not falling too far behind his peers. In most areas, developmentally, he tests on level for his age. Gross motor is an obvious delay because of the size and weight of his heavy head. No delay so far in age appropriate speech, play, fine motor and cognitive development. We credit his wonderful team of therapists and doctors who have help him develop into the average toddler he is today. It’s certainly not easy but he’s worth every moment.
