My Story

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Mom talks about the pregnancy.
After the shock of finding out I was pregnant, I got really excited about it. I read everything I could get my hands on dealing with pregnancy. I started watching what types of foods I was putting into my body. I daydreamed about childbirth classes and maternity clothes. I went to several appointments with no incident.  Sunday night, August 8, 1993, my back started hurting. I had a appointment with my OB at 3:30 pm Monday so I decided I would bring it up then. I went to work Monday morning. During the late morning, I had a pain in my stomach.  It scared and hurt me.  While Aaron, the baby's father, was driving me to the doctor, I had another pain that brought tears to my eyes. He asked me what was wrong and I told him I didn't know, I was in pain but I didn't know why.

I walked into the doctors office in tears. I checked in with the receptionist and told her that I was in pain. I described it as a radiating pain from my sides down to my belly button and that my back was hurting.  She said I may have a bladder infection because I haven't been drinking my fluids like I was supposed to and I needed to make sure I drank my Kool-Aid. She also told me that pressure pains and backaches were normal in pregnancy and gave me a sheet of paper with exercises on it that were designed to help alleviate back pain during pregnancy. By this time, I had convinced myself that the pain was nothing more than normal pains of pregnancy and that I must be a real weakling for letting the pain get to me like that. After all, thousands of other women go through pregnancy every day and don't complain about every little pain. 

The doctor did a partial exam, no pelvic.  He sent me home with instructions to take acetaminophen and a sheet of backache exercises. I went home and took Tylenol and laid in the bed. I dozed off for a while but was awakened by another pain.  My fiancée, Aaron, came home and found me sitting on the couch in tears. He asked me if my pain was coming in regular intervals. I said yes. He suggested that maybe I was having false labor or something as he called the doctor. The Doctor told us to go to the hospital immediately.



The Labor and Delivery

At this time they started giving me shots every 30 minutes. It is now that things are getting a little hazy. I was put on bed rest, not even to get up to go to the bathroom. After several hours of shots my contractions had become less frequent. Just about the time I was starting to think things were looking up, the contractions started back up. The nurses switched me to magnesium sulfate which made me extremely ill. I vomited immediately and had a hot flash that was like nothing I had experienced before.

Why did I go into premature labor? I found out later that I had chorioamnionitis, an infection of the lining of the amniotic sac. Apparently it is a rare infection and is not routinely tested for. One doctor told me the odds of getting it are about like the odds of getting struck by lightning. Lucky me.

For many hours I lay there with an IV in either arm, in and out on consciousness, not really caring what would happen. I was so weak that I had to have some one help me turn over when they wanted to change my bed pad. I could barely lift my own arm up. The lab techs had to stick me in my feet to get blood samples because they could not get a vein in my arm. I kept telling the nurses that I could not breathe. They explained that the magnesium sulfate gave the feeling of pressure on the chest and that I needed to breath slowly in and out. At one point they gave my oxygen. Anyway, this went on for another 24 hours. I had yet to see an actual doctor. Only nurses and technicians. In tears, I told my mom [who had just shown up from Houston] that I just didn't think I could go on with this anymore, I was exhausted. She told the nurses to call the doctor and stop the meds right away. I felt like I was failing my baby. 

At around 7am Wednesday morning, Dr. Goss showed up for the first time since I had checked into the hospital at 9pm on Monday night. He came in and turned off the mag sulfate and told the nurses to prepare me for delivery. They told Aaron that he was not allowed to accompany me to the delivery room. He was told that they were treating this as a miscarriage and that the baby would probably not live. The staff assure Aaron that if the baby was alive when it was born they would do everything they could to keep it alive.
At 7:30 am Kalib Neil Blanchard entered the world and gave a squeaky little cry.

The Fight for Life
The minute he cried the medical staff jumped into action trying to keep him alive. Aaron and other family members were outside the doors with no idea what was happening. One of the nurses ran back and forth to keep them informed and took pictures.

I was dying of thirst because I had not been allowed to drink anything since Monday night (its now Wednesday morning.) I gulped down some grape juice and cranberry juice and immediately started coughing, violently. I coughed up something red.  One of the nurses said it was just the juice I drank. Another nurse took it more seriously and sent for a pulmonary doctor. All of a sudden there were people all around me. The doctor ordered an x-ray. I was diagnosed with bilateral pulmonary edema and whisked off to an intensive care room and given meds and oxygen.
b Kalib being bagged.jpg (9866 bytes)
Meanwhile, my little fighter was giving it his all. Because this small hospital had no equipment to handle a premature infant, the respiratory therapist had to manually bag Kalib. He bagged him from the time he was born until the transport team arrived via helicopter from Methodist Hospital in Dallas, TX (100 miles away) which was a couple of hours.

Kalib was transported to Methodist Hospital while I was stuck in intensive care in Tyler. My fiancée Aaron didn't know which way to go.  He and his mother went to Dallas to see Kalib. The neonatologist gave him some very unencouraging statistics about Kalib. About 20% chance of living and IF he lived, named off a whole list of problems he would likely have.
So there was Aaron, with his baby lying in the hospital in Dallas, not knowing if he was going to make it through the day. And his future wife lying in a hospital in Tyler trying to regain the ability to breathe.

By Friday, I was well enough to leave the hospital.  We hopped in the car and drove straight to Dallas. My first impression of Kalib was that he looked like a real baby.  He had real fingernails and fingers and toes.  This may sound strange but I didn't know what to expect.  He was very small.  His skin was transparent in places.  He looked so fragile.  I didn't know what to do.  I just stared down at this little boy who was mine and yet not really mine.  I couldn't hold him.  I couldn't feed him.  I couldn't care for him.  He had a team of medical professionals to do all that for him.  What was my role then?  I could be there for him.  I could take care of myself and be strong for him.  I had to. 

Kalib's stay in the NICU was a roller coaster ride.  The first 4 months, we didn't know if he would survive from one day to the next.    He had problem after problem, tests and procedures like crazy. He had respiratory distress syndrome, Broncopulmonary Dysplasia, and many other problems.  His discharge summary, (yeah, right, its 8 pages long) lists 25 separate diagnosis, some of which had resolved before he came home. 

The first week was really tough.  Kalib had infection after infection.  The worst was when his skin broke down.  He had open sores all over his body.  I hated to see him because I knew he was in pain and I couldn't comfort him.  We sat by his warmer bed and watched and waited. Surrounded by machines beeping and buzzing, lights blinking, bundles of tubes and wires, we waited.  Waited to see if Kalib would keep fighting.  As long as he kept trying, we wouldn't give up.

The next few weeks were not much better.  He lost weight, down to 15 oz. before he started gaining. It was a constant round of problems.  Low blood pressure, heart rate drops, raising respirator pressures and breaths per minute.  His oxygen saturations went down.  We had talks about the need to set limits on how much help he should receive before its time to give up.  Medications - dopamine for blood pressure, steroids to help his lungs work better, antibiotics to fight infection, medicine to help close the valve in his heart, TPN for nutrition, morphine for pain, yes pain.  Blood transfusions (total of 21),  Central lines, x-rays, spinal tap, sonograms, blood gases and more. 

Two months later, we still didn't know if we would ever get to bring our baby home.  Kalib was doing ok until October 14.  The doctor called our house at 2:30 am and said things didn't look good.  Kalib's machines were wide open.  He was receiving Oxygen is at 100% (room air is 21%) and sats still in the 70's (should be in high 90's).  Two days later, we were told it was time to "think about the baby's dignity."  Kalib's neonatologist was trying to prepare us for the worst.  He talked with us about the possibility of extubating Kalib and letting nature take its course.  During this time we were forced to think of what we would do if Kalib didn't live.  Aaron found a cemetery nearby that was for children only.  I cannot tell you how that affected me.  There are no words to describe how I felt that day.  The thought that I might have to bury my son was overwhelming.  Fortunately, before we had time to make a decision, he was doing well again.  The steroids he was given had helped, so much that he was taken off of the ventilator and put on CPAP.  October 16, 1993, we got to hold our son for the first time.  He was over 2 months old (66 days to be exact).  It was the most wonderfully scary moment of my life.  Six days later, Kalib was back on the respirator. 

And on it went, up and down, until December 3.  (Kalib's due date had been December 6.)  He went on CPAP (and off the respirator) for the last time.  By December 14, Kalib was breathing on his on.  We now had hope that our son would be coming home.  It was also time to worry about what problems we might have to face in the future.  Brain damage, Cerebral palsy, learning problems, just to name a few.  But our focus was on the fact that he was going to come home.  December 28, Kalib had his first bottle feeding.  It was 7cc.  One month later, on January 29, 1994, Kalib left the hospital to go home, almost 6 months after the day he was born.

Doctors and Hospitals and Tests, Oh My!
We weren't home long before the constant round of doctors and specialists started.  We spent more time in cars and waiting rooms than at home, it seemed.  I quickly became an expert at packing a diaper bag.  Most of Kalib's visits were in Dallas. The neurosurgeon followed Kalib closely for the first couple of years.  His head size was very large and there was concern that he had hydrocephalus (not uncommon in preemies).  Luckily, it turns out he just had a big head like his Daddy.  We had regularly visits with the ophthalmologist to track his retinopathy of prematurity, strabismus and other problems.  We saw pediatricians, urologists, ear doctors, eye doctors, physical therapists, occupational therapists, orthopedic doctors, orthotists, dieticians, speech therapists and others.  He had x-rays, ct scans, MRI's, Sonograms, blood tests, hearing tests and more.  The list is endless. 

April 1994, We had our first visit at Scottish Rite Hospital.  I cannot say enough good about this hospital.  It is wonderful.  However, our first visit with the doctor was not one of my favorite memories.  The doctor walked in followed by a group of medical students.  He turned to us and said "During the exam, I will be talking to the medical students and I will be using some terminology that you won't understand.  I will be happy to explain it to you later."  We understood every word he said.  You don't hang around in the NICU for 6 months without learning the lingo.  This doctor labeled Kalib a "wheelchair child"  who would never walk.  This was a little disturbing to me since this was his first visit with Kalib.  [Kalib  has a spinal cord injury. Actually, the word used in his discharge summary is myelomalasia.  We are treated is the Spina Bifida Clinic because the treatment is the same.  It is my understanding that at some point, his blood pressure was not high enough to get oxygen to the part of his spine that is damaged, thereby leaving his left leg and right foot paralyzed.  His bladder and bowels are affected also.] v1 Kalib with crutches showing off.jpg (22805 bytes)

As Kalib got older, he started crawling.  When he started trying to pull up, it was decided that he was a good candidate for Reciprocating Gait Orthosis (RGO). He had to have a surgery to relax the tendons in his hips, knees and feet so that he could fit into the braces.  After many frustrating and exhausting hours of practicing, Kalib learned to walk fairly well with a walker.  By the time he was in Kindergarten, he was walking with forearm crutches.  It was a big accomplishment to walk with forearm crutches, because to do this you have to give up the safety of the walker.  It takes a great deal of balance. There is nothing to hold onto if you slip and fall.  As you can see in this picture, he was doing extremely well.

The Cancer
Because of his spinal cord injury, he has to have several tests done annually. Blood tests to check the function of his kidneys, and to check for latex allergy. A renal sonogram and a VCUG. The sono is not too bad but the VCUG scares the heck out of him. This is a test where they insert a catheter into the penis and fill the bladder with liquid to check for reflux. All the while an x-ray machine is going on top of the child. You can understand his fear.

Our visit to Scottish Rite on October 26, 1999, was one of those routine visits where testing would be done. We were worried about Kalib and his having to go through the torture of another VCUG (there is still a question of how much feeling he has in his penis). We questioned the necessity of the test.  Finally convinced that it was a necessary test, the doctor suggested we put it off for a while and arrange for child life to go in the room with him and help him get used to it. Maybe this might alleviate his fear. Feeling relieved that we weren't going to have this particular test, we went on to the sonogram.

As I watched the sono screen, I knew something was wrong. The technician was acting strange. The look on her face and the fact that she was dodging my questions made me nervous. She had the nurse from the clinic come in (another bad sign) to speak with us. The spot on Kalib's kidney that for the past few years was thought to be a cyst was now known to be a tumor. It had grown considerably since the last test (where before it had stayed the same size between tests) and the sono showed blood flowing through it which meant that it was solid not fluid-filled.

 We returned on November 2, 1999, for a CT with contrast (another scary machine and this test requires an IV to administer the dye.) We made it through the test ok. As we were waiting for the Urologist, I was still hoping they would tell us it was no big deal. My hopes were dashed when I saw the doctors face. He walked in and his first words were "It looks like we are going to have to have a surgery."  "When?" I asked.  He said "As soon as possible." "Is it cancer?" I asked.  His answer?  "Could be."

His surgery was scheduled for November 12, 1999. The doctor explained the procedure in which they would remove the tumor and then send it to pathology to find out if it was malignant or benign. Then, if it was malignant, a doctor would insert a port into Kalib so he could receive treatments without having to have an IV stick every time.

As we waited in the waiting room, the anesthesiologist would call every so often and tell us Kalib was doing fine. He called to tell us that the tumor was out and on its way to pathology and we should know something within 20 minutes. Again we waited for the phone call.  Over an hour later, I saw the urologist walking down the hall toward the waiting room.  I knew then that the news was not good.  It wasn't.  The tumor was malignant. Probably a Wilm's tumor, early studies are inconclusive.  The good news is that it was in very early stages and very small, so Kalib had a short treatment protocol of 20 weeks. The bad news is that Kalib, my son, had CANCER.  My child had CANCERPremature birth, I could deal with.  A Spinal Cord Injury?  We handled that.  But CANCER?  Why Kalib.  He already had so many problems?  Kalib and I drove back and forth to Dallas every week for the treatments and he was tired and sick and lost some of his hair.

The Aftermath
The surgery and treatments took their toll on our family.  Kalib missed lots of school.  He had already been having problems in math.  His teacher was beside herself.  She did not know how to motivate him.  She knew he was bright, but some days he just didn't seem to get it.  I was exhausted and depressed.  We had just moved into a new house and we were financially strapped.  But we got through it.  Kalib has been cancer free for a year and a half now.  Kalib's hair grew back thicker than before.  Aaron jokes that we ought to sell it to the rug company because it repels water. 

Kalib  was very lucky.  Because of the annual sonogram, his tumor was caught extremely early and he only lost a small portion of his kidney.  The tumor was still intact (hadn't spread.)  The chemotherapy protocol was short compared to some.  Unfortunately, Kalib doesn't wear his RGO braces anymore.  The incision from his tumor removal was was on his waist,  where his braces fit.  After several months of recovery and chemotherapy, his tendons drew up again.  To be able to wear his braces again, he would have to have another surgery.  We left it up to Kalib.  He said he had had enough surgeries for awhile and he was perfectly happy to use his wheelchair for mobility.  We thought that sounded just fine.