Sunday, April 13, 2008

The begining of the story...

Today feels like the right day to tell part of Stevie's story. I will write as much of it down as I can before it hurts too much to tell.

Stevie was born in 1987, big hair was in and I listened to Cyndi Lauper. I was 23 years old. Aly was just two when her little sister was born. In July I was in a very bad car accident and my head went through the windshield of our truck, I was not wearing a seat belt. Aly sat on the bench seat between Steve and I, no carseat we didn't think she needed one, no one thought to make it a law yet.

Aly and Steve were fine and I was pretty beat up, stitches a banged up bloody head but a baby that weathered the accident just fine. I did not know at the time and I would later find out that I had fractured my pelvis in three different places.

On the night of the 22ND We went out to dinner with Bob and Pat. there was an Italian restaurant that made labor pizza. I was over-due and thought I would give it a try. On the way to the restaurant I had some contractions. I kept it to myself not wanting to jinx them into going away. I felt good, happy, I knew the baby was coming soon.

After dinner we went for a long walk under a sky full of stars. The days were still hot but the nights were perfect. On our way home in the car I knew my water was breaking. It didn't hurt, just a trickle of warm that I could not stop.

At home we tucked Aly into bed and stayed up timing contractions. I felt really good, full of energy, I thought we had a long time to go. I called my sister and she came right over. We hung out talking, contractions getting closer. Steve thought we should get to the hospital but I thought we had time. My sister and Steve made the decision that we should go to the hospital, I bought time with a shower.

When we got to the hospital it was quiet. The nurse was sweet and Steve flirted with her while I went to the bathroom. In the bathroom labor became intense. Steve and the nurse talked about jazzersize and how firm she was getting and I went into transition.

They helped me into bed and the nurse announced we were ready to have a baby. It all happened so fast. They turned the bed into a chair, brought in lights and instruments and paged the on-call OB. I didn't even have time to take my socks off when I started pushing.

The doctor announced that her head was "right there" and I reached down instinctively as she was born, right into my waiting hands. I lifted her to me and said "Oh Happy birthday Stevie"

Things go as they will all the mess cleaned up, warm blankets brought in, the baby shuffled off to the nursery for washing and weighing. I was taken to a different room with a big window and a yellow curtain that separated me from the mother next to me.

Steve went home to sleep and make the phone calls. I waited impatiently for them to bring my baby back to me. I knew the baby they brought in was mine, she was the only one in the whole hospital that was born weighing 10 pounds.

Steve came back with Aly all dressed in purple with a funny little water-spout pig tail on the top of her head. She held her sister and said "Ohhhh" I am not sure she quit understood what was happening but she did know that she was somehow connected to this warm bundle of pink cheeks.

Steve and Aly went home, my room mate was discharged and it was just Stevie and I. The sky was amazing, the night was so peaceful and perfect. She woke up and looked right at me, right into me and I knew...

I have given birth to three children. When Aly was born I could see myself in her and every generation of my family, she was my family. I was young so becoming a parent was over whelming but I knew we were going to be OK, I knew her.

When Noah was born he was funny looking, all long skinny legs and big red testicles. He was so damn pissed. When I held him to me he quieted and again he was my family, me, and I knew him, felt like I had waited too long to finally be with him.

When Stevie was born there was a weight, a heavy sadness. I did not know her she felt bigger than me, older than me and I felt like I was so unprepared for being her mother. It may have been sleep deprivation but I heard her say "Here we go" I cried.

I cried for a very long time. I was told it was the blues but I knew it wasn't. I was mourning.

I held her so close, I made so many promises. I slept with her, I kept my hand on her little chest when she slept and counted her breaths. There was something so intense that connected me to her.

She was a quiet baby. She loved to nurse and sleep. She loved to be held and kissed. She was not interested in walking right away and would have never walked if we would have just strapped her to us, she would not have minded. I use to joke that she was a princess in another life and her feet never had to touch the cold ground.

She also didn't feel the need to talk. She and Aly had a secret language and Aly was more than happy to translate. Aly seemed sincere and Stevie seemed to agree and so it was. Aly would say "Ah, my fremd Stevie said she would like another potcycle" So we gave them popcycles. Aly would say, "My fremd Stevie said she wants you to read us another story" so we read another story.

When Stevie slept she would stop breathing then take a deep breath and begin again, the doctor told me the problem was me paying to much attention to how she breathed. When Stevie was about six she began getting strange fevers and tummy aches, she also bruised very easily. The doctor told us her blood results were fine, she was fine. Later she began getting bad chest colds that would not go away. The doctor told us she had asthma and put her on a steroid inhaler. Stevie started snoring and having more and more problems with the asthma. More meds were added and her tonsils were removed when she was seven. My gut instinct told me we were in for some big trouble.

My mother was (is) a hypochondriac, has some mental illness and a chemical dependency. She could also be accused of Munchhausen's syndrome if they had that term when I was a kid. I mention this because it affected how I proceeded with Stevie's care. I kept taking her to the doctor they kept rolling their eyes and telling me I needed to relax. Instead of pushing harder I was convinced I was truly my mothers child.

When I was seven my mother told me I was diagnosed with a brain tumor. I believed it my whole life until my twenties when I requested copies of my medical records and found it was not true.

We moved back to California in 1996. I was sure it was a good move because the weather here was so much nicer than the 206 days of rain we got in the pacific northwest. I felt like Stevie's lungs would dry out a little.

She got sick more and more. The medication they gave her for the asthma didn't seem to work. The snoring got worse and worse. We were told she had severe sleep apnea after a sleep study. the cause was obesity. She was not obese, maybe a little puffy from the steroids but she was perfect as far as I was concerned.

When we took her to the orthodontist to have braces put on our dentist freaked out. He told us that he had never seen a mouth like this before. He suggested she have some therapy for tongue thrusting and repaired her teeth. I took her to see and ENT who told us she had Pierre Robin syndrome. This meant that she had an underdeveloped lower face, this was causing her teeth to do what they were doing and might be causing the breathing problems. We were referred to a pulminologist who knew a little more about this. She suggested a bronchoscopy.

When they did the procedure they thought they could see a tracheal cleft, another marker for PRS. She changed the meds, got another sleep study and Stevie was fitted for a CPAP. This is a machine that breathes for you should you forget by pushing air into your lungs through a face mask. She hated it.

We thought her lungs were crappy and she kept getting pneumonia (at least once a year) because she was aspirating. The cleft would need to be repaired. Stevie did a bunch of Pulmonary function tests that were very abnormal. I told the pulmonologist that I had a weird dream that she gave me an x-ray that she had taken of Stevie and I could see a perfect ball in her throat. We were referred to Stanford for another look.

During all this Stevie complained of seeing double, and throwing up every morning and sometimes after lunch. I also noticed that one of her pupils was dilated a little more than the other. The pediatrician told us that she was fine. I challenged her and felt myself curl up inside as I said "Peggy do you think she has a brain tumor? I read online that..." She told me to stop reading online that Stevie's apnea was obstructive not central.

At Stanford a little Asian man who looked about twelve scoped Stevie. He was an ENT resident and asked more questions than we had ever been asked. I gave it all to him, it had been four years of not knowing what was going on and I needed to vent, damn them if they thought I was crazy.

I was talking he was scoping, he said, "No cleft but this kid has a paralyzed vocal cord, she is actually paralyzed on her whole right side in here, not even a gag" I exhaled, I thought we were finally getting somewhere that we could fix what ever it was. I asked "so what does this mean?"

He flippantly said "Well it could be tumor but with this much damage she would be dead by now"
He ordered a CT scan.

I was gardening and I heard a voice say "Get ready" that was all.

We took Stevie in for her CT, it took a very long time, I felt myself beginning to panic. It was a Friday. On Monday April 19Th our Pedi called and asked us to come in. It was 7:30 in the morning. I knew.

She sat us all down in the exam room, the scan was on the counter next to her. Her eyes were red and swollen, she had been crying, she was undone. She said directly to Stevie "I am sorry honey but you have a brain tumor" We fell into a heap and sobbed. I demanded to see the scan and she put them up on a light board. There at the base of her scull, in her brain stem was that perfect ball I dreamed about.

Well, I have hit that wall today. I am going to go and throw up and I will finish more of this story tomorrow.


1 comment:

Kathy said...

I saw your blog some time ago.

I've got these google news alerts set for stuff relating to brain tumors and I think that's how I found your blog.

I never wanted to comment. I know it's public on the internet and anyone can read, but I felt a little bit like I did when I came to Stevie's memorial, like I was peeking in on your family in private taking a shower or something and I didn't want to intrude.

But today you wrote something that took my breath away because I'd forgotten, it's been over 10 years since I even thought of it.

Steven had a host of problems when he was born, the night he came my head spun with all the facts the doctors related to me.

During the next week, while he was still in PICU, there were all sorts of tests.

The thing I'd forgotten about was Pierre Robin syndrome, that's what they told me he might have. My sister printed out a boatload of information on it and somewhere in my files I have it.

And I was always worried about Steven, from day one.

A very close friend I became acquainted with when Kyra was ill, her son died in 2001 from bsg, he was 9.

I wrote her about 6 months before Steven was diagnosed and I told her I had this deep-seated fear that some tragedy would eventually befall him, and that I just didn't have the same feeling about Sean.

Her family had dinner with us two days before they found Steven's tumor.

I emailed her about the tumor they found, I couldn't bring myself to speak the words to her after our previous conversations.

Ever since he was diagnosed I blank my mind when I start to think about the future.

I don't want to predict anything. I don't want to know. I just want to love both of them now.