COBY'S STORY
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FROM THE BEGINNING
We were so excited after we found out I was pregnant.  We were told it would be hard for me to conceive again..  Our eight year old has wanted a baby for years and was so excited.  He wanted a baby brother so he can teach him sports and about life.

ULTRASOUND
We were so excited about finding out the sex of the baby.  We even took our eight year old with us.  He had his fingers crossed that this baby was a boy.  When the ultrasound revealed a boy, my son was so happy.  He finally had a brother.  The baby was so active that they had trouble getting the baby to be still.  They did comment on a nice heart beat and that everything looked good.  We were excited that we couldn't wait to start buying of the baby.  I even took the rest of the day off at work to go shopping.

BIRTH
My water broke on Monday, October 18, 1999.  My water broke while my husband was picking out new glasses.  My husband jokes that I waited until he was done to tell him my water broke.  They induced me around 5:00 p.m. and the baby was very stubborn about being born since I was only 36 weeks.  He wasn't dropped and not ready to be born.  I developed a high temperature (106) and they started given me medicine to ward off infections. Finally, Coby was born  at 6:50 a.m. on October 19th.  Coby just flopped out with no movement.  We knew something was wrong at that moment.  The  doctor and nurse started working on Coby and told my husband to press the emergency button.  My husband and I looked at each other with tears in our eyes until we heard his first cry.  I was allowed to hold him for a brief second before they wisked him away to the special care nursery.

October 19, 1999
The doctors aren't very concerned.  Coby has no movements in his left arm, fluid in the lungs and a small heart murmur.  They aren't at all concerned about the murmur.  They said this is very common in babies and usually will go away on its own.  Coby and I are still on medicine to prevent infections since I ran a high temperature.

October 20, 1999
My husband and I wake up early and my husband heads down to the special care nursery to check on Coby.  My husband returns and I can tell something is not right.  Coby's heart murmur went away during the night but came back stronger causing concern.  Test were run and it appears he has a small valve.  They are thinking of sending him to a local hosital that can handle heart problems.  They come back to our room and said they decided to send him to Medical University of South Carolina(MUSC). They were trying to find out if they could send him via helocopter.  The weather was bad and we had to wait for an ambulance to come from MUSC(two hours away).  The doctor didn't want to release me since I was still on medicines for having a high fever but he knew that I wanted to be with my son.  We are discharged and quickly make arrangments for our oldest son to stay with my mom.  We throw clothes in a suitcase and head back to the hospital to wait for the amublance.  We followed the ambulance to Charleston.  Since it only appeared to be a small valve, the ambulance took its time and we arrived at 5:00 p.m. 

MUSC
When we arrived, we had to find the PCICU unit were they were sending Coby. The doctor meet us at the door to PCICU and said they would come get us in the waiting room when they knew what was wrong with Coby.  We waited and waited and finally at 8:00 p.m. we were given the devastating news that Coby had a life threatening heart defect called Hypoplastic Left Heart Syndrome.     

THE DIAGNOSIS
Hypoplastic Left Heart Syndrome was a condition we had never heard of before. We were told that basically Coby's left side of his heart was to small to support live.   Only 1 in every 5000 babies will be born with this.
We were given three choices:
1. Compassionate Care-take the baby home and let him die
2. Heart Surgery-not recommended in our state
3. Three pallitive surgeries

We immediately said do what you can for our baby.  We never even considered the compassionate care.  We gave them our decision in a minute without ever researching HLHS. 

Most HLHS babies are born with a hole in the heart which helps mix the red and blue blood.  Coby's heart didn't have a hole and he need to have an emergency catherization to have a hole made in his heart.  He wouldn't live without it.  Our poor child only a day old and having to endure something like this.  Once in the cath lab, Coby's heart was in a position that wouldn't let them put a hole in his heart.  We had to hope that he would improve enought to endure the next surgery. They wanted Coby to try and get stronger before the first surgery.  Coby has low saturation rates and blood pressure rates.  The surgeon tells us he has never operated on a baby with such low rates and pressures.

Now that we knew what procedure Coby was having done, we researched the internet for all the information we could find.  Family and friends printed pages and pages of HLHS children's web sites for my husband and I to read.  Reading other families accounts of HLHS helped us in so many ways.  We saw children who had survived this condition.

Each day we prayed and hoped our son would grow strong enough for the first surgery.   The first surgery was planned for October 25th.