Ariel's Life And Struggles

On May 22nd, 1997, our worse possible fear was confirmed.  Ariel was going to be born with a two chamber heart called A/V Canal.  To add t the problem the one and only valve had a leak.  That is how the horror began.  Two days later, fear and panic set in when my water broke.  I didn't know what to do.  She wasn't due until July 7th. I just couldn't take her being premature on top of everything else.  Little did I know, it had only just begun. I was rushed to the hospital and tested on.  So far no labor pains.  The tested her lungs at 35F% mature.  Steroids had to be given to bring that up.  After 2 shots, she tested at 110%.  This was really a good thing.  After the first night was over, they concluded that I wasn't going to give birth right away, but I had to stay in the hospital in bed due to the low fluid level surrounding my baby.  This was really tough.  She needed all the growth she could get before she was to be born.  I was in there just to eat and give her strength.  They said as long as she stayed inside me, she would be fine because I was circulating her blood for her, and her heart didn't have to work as hard.  Now I would have to face the facts of what Ariel's life was going to be like.  a week and a half later, labor pains started in hard.  After daily ultrasounds, Ariel had become breach and a c-section was planned because she would not be able to take birth especially feet first.  What else could go wrong.  She was still going to be four weeks early.  She needed all the help she could get.  My goal while in bed was to put weight on Ariel.  I did ok with that.  She was born at 12:43 am, June 3rd, 1997 at 6 pounds.  She was so tiny.  I could only hold her for a few seconds before they took her away.  finally after 6 hours of recovery due to having had 2 epidurals because the first didn't take, I got to see her.  I had them wheel the whole bed into the NICU just so I could be with her.  I didn't want to wait to be settled in my room.  I wanted to see her ASAP.  I wanted to know how she was.  She was this tiny little baby hooked up to all these machines.  I couldn't hold her or even hear her cry because of the respirator.  She was having trouble breathing.  I just wanted to comfort her.  I was totally helpless.  The doctor said she'd have to have open heart surgery in 3 days.  3 days old and she was going to be opened up and her heart stopped so that they could start repairing it.  The plan was one surgery now and another at 6 months and a 3rd at around 2 years old.  Then she would be looking at a heart transplant around the age of 16.  This is not counting the meds she'd be on for the rest of her life.  My God I just had no clue.  At 3 days old, she went in for surgery at 7:30 am.  I was there at 6 am in my wheelchair to be with her as much as possible.  We had her baptized and I actually got to hold her for the very first time.  This was all in preparation for the possibility of her not making it, but of course that was not going to cross my mind.  It couldn't.  This was my little girl.  Just a baby.  I cherished those few minutes I had.  then into the OR she went.  We didn't hear anything until 1 pm.  5 1/2 hours later they came out to let us know that she pulled through surgery and that I'd be able to see her in a while.  This was good news.  We were so relieved, but she had a long ways to go.  The first 24 hours were critical.  They were giving her a 20% survival rate.  Jeesh, why tell me this.  I could still lose her.  finally 2 hours later, I got to see her.  She was so small.  I almost didn't recognize her.  She was on an adult size bed with cords and drainage tubes and stitches down her chest.  WHY!  Why did she have to go through this.  There was just so much stuff for such a little body.  She proved everybody wrong though.  She was such a little fighter.  She came off the respirator really quick.  She did very well.  Within a couple days.  She moved to IICU.  This was a move just before the move home.  She progressed each day.  They still was having trouble feeding her with a bottle.  They were forcing the issue too until I said why can't I do this at home.  They finally let her go 15 days later.  I had to learn how to feed her with a feeding tube and how to give her meds.  The doctor said she'd never come off the feeding tube, but guess what.  She proved them wrong again.  In just a month, I had her drinking only from a bottle.  No more feeding tube.  The tube just broke my heart every time it needed changing, which was every 3 days.  At this time I had kicked my husband out.  He was not helping me at all.  I was doing this all on my own.  I loved her so much.  I had her home for 3 wonderful months.  The only real hard part left was the weekly blood tests that made her cry so hard, she turned bluish purple.  This killed me.  It was so heart wrenching.  Even those finally decreased to every 3 weeks.  Things were good.  She looked and acted like a normal baby of 3 months.  The only way to tell was by her scar on her chest.  All this had come to an end.  She had to go in for a catheterization.  It was a test to check how her heart was doing.  They said it was routine, and she'd be able to go home right afterwards.  An hour into the test, they came to tell us that she had gotten a fever of 107 degrees and she wouldn't be able to go home.  She was real sick and not dong well.  We was losing her all over again, after all the successes we had.  She looked awful.  She was to stay in the IICU until her fever broke and she was stronger.  This never happened.  A week and a half later, she was to go through the hell of another open heart surgery.  The leak in her heart had become severe.  They had said that stitching the leak was like stitching up tissue paper, and that was why they didn't totally succeed the first time.  October 14th was the day she would never smile again.  6 am and I'm holding her along in the dark.  She was holding her head up and looking around.  The expression on her face was so happy.  She was a curious and happy little bugger.  Nothing ever seemed to bother her.  She was very tolerable of everything. Seemed like there was nothing wrong.  7:30am I walked her to the OR.  She was smiling at watching her fist move.  She had no idea what was going on.  She only knew that her hand was cool and it moved.  Her smile was so sweet.  I'll never ever forget it.  It was her last.  She never really recovered after that.  a week later, another surgery.  She was to have 5 open heart surgeries in the last 13 weeks of her life.  Not to mention the two broviac surgeries for permanent IV's to her heart.  What hell and torcher.  I lived there to never leave her side.