How it all began

It was October 10, 2000 when my daughter was born.  As any parent expects....they wait for that first cry.  My baby didn't cry and she was a shade of reddish purple.  We lived in a small town and the hospital did not have a high level NICU.  They nicely said they needed to take her for a few minutes after they had cleared her breath and mouth I did hear her cry.  They came back and told me that she wasn't breathing on her own and she had a lot of fluid in her lungs.  I did get to see her one time before she left.  She was a big baby they said and sometimes that happens.  They told me she had to be transferred to another hospital about 30 mins away.  My husband tried to follow the ambulance to the hospital with the best NICU and the ambulance was flying and he couldn't catch up.  That was pretty scary for him. 

Well, me.....They wouldn't transfer me to the other hospital to be with her.  I had to stay.  They told me I could leave the next day.  The next day, one of the OB's in the practice came to see me.  His wife and I were friendly and pregnant together.  He was just coming back from his leave. Actually it was his first day back.  He said that as a doctor and a friend, he didn't suggest I leave.  Another crushing moment for me. 

When I was finally able to see her, there were all sorts of tubes and lines attached to her. She was surrounded by preemies.  She was the biggest baby there.  We were even there one day when one boy who was a twin stopped breathing.  This was all so scary for us.  There was one baby who no one ever came to see.  It was very sad.  I tried to pump but it was hard and the hospital gave her a bottle before I got there even though I instructed them before I left the hospital not to. 

After five days, she came home.  Everything seemed great except you wouldn't breastfeed.  I was going to pick and choose my battles. 

After 2 weeks, she had a high fever with no explanation.  We went to hospital in our small town.  We should have gone to the one where she was in the NICU.  They really didn't seem to know what to do but admit her and get her fever done.  Her fever went away and there was no explanation for the cause.  On top of it all, I got mastitis.  Within the week she stopped using her left arm.  She was irritable and spit up a lot.  We went to all sorts of dr's and ended back up in the hospital.  They said she had a bone infection.  We were there for a couple weeks on antibiotics suggested by an orthopedist at Miami Children's Hospital.   Eventually they gave us our films and told us there was nothing more they could do for us there and we need to go to Miami.  They got us an appointment so we flew down there.  It was a madhouse. 

After seeing the Dr in Miami, who said it was actually getting better we were assigned home health cares nurses in the morning and night and she was given an IV pump.  She had an IV going all day and night.   On Thanksgiving, the femoral line ripped out of her leg.  We call the Doctor and he prescribes an oral antibiotic.   Still no cause for the bone infection.  She must have gotten a staph infection in the hospital.  Who knows? 

We had to go for follow ups at Miami Childrens Hospital two hours from our home for 2 years.  After that we could see a local orthopedist Dr. Rattey.  Over 11 years and we still see her. 

I had to go back to work as I was the breadwinner at the time.  My husband took the month off to care for her while I went to work. 

We were lucky to find a daycare that was part-time that all the dr's send their kids to.  I cut my hours to part-time.  Every cold, ear infection, etc.... She got it.   All the specialists were over half hour away. 

When I was home, I spent her nap time on the phone with Dr's and hospitals fighting over medical bills.  The NICU hospital didn't take our insurance.  The bill was over $192,000.  I was exhausted.

Things settled down for a bit and eventually we decided we needed to move South to be closer to better hospitals and Doctors.