COBY'S STORY - PAGE TWO

First Operation - Norwood
Coby was six days old when Coby had his first procedure.  He was wheeled away at 7:00 a.m. and we didn't see him again until 4:00 p.m.  They had a hard time stopping the bleeding.  He had to have several blood transfusions.  He  honestly didn't look as bad as we thought he would.  My husband and I decided not to see him again until after the first 48 hour period was over.   We waited in the waiting room and the nurses told us they would call us with updates.  When the doctor appeared in the waiting room that evening we knew something was not right.  She explained that Coby's oxygen saturation rates were very low and they needed our permission for them to use a non-FDA approved gas.  We signed the paper and again told her to do everything they could to save our son.  About 30 minutes later the surgeon himself appeared in the waiting room.  We knew something must not be good if he was taking the time to come to our waiting room.  I met him at the door to the waiting room and he looked my in the eyes and said the baby was going down hill fast and it didn't look very good.  My husband and I held each other and cried.  As I write this months later, I still get tears in my eyes when I think about that awful night.  We tried to be brave and we prepared ourself for the worst.  Four hours later at 12:00 midnight we are given the word that Coby is now stable.  That was a close call.

POST OPERATION
The doctor told us to take it minute by minute and we did just that.  It was so hard to walk into PCICU and look at our son.  It was the week of October and Coby was all swollen like a pumkin.  We told him to take off the pumkin custom and put on something else.  The swelling finally decreased and they were able to close the chest a week later.  Closing the chest is a big under taking because the heart might not be as strong with everything closed in.  Coby did just fine. 

They slowly weaned him from the sadation medicine and we saw his eyes open for the first time.  We also saw him move his fingers and wiggle his toes.  They tried to excubate Coby and after 48 hours he gave up and his stats started to drop.  He just couldn't do it on his own.   This was the first time we saw his face without the tube in his mouth.  We could actually hear him make noises.  We heard him cry.  To hear him cry and not be able to hold him was unbearable.  They tried  several days later and we held our breath hoping he would keep his stats up.  Yes, this time was successful.  Now we can try to feed him some food (through a tube).  Coby had fluid building up outside his lungs and had to have another tube inserted into his side.  He was put on a special formula called Portagen.  This formula didn't have any fat and would be easier for him to digest.  As soon as Coby can keep an ounce of formula down he will be transfered upstairs.  We have waited a long time for this news.

TRANSFERED OUT OF PCICU
We are transfered upstairs on _______________.  We now have our own room and I got to hold Coby for the first time on ___________. I was so nervous when I held him.  I was afraid I was hurting him.  I got to feed him his first bottle.  Feeding babies with HLHS is difficult.  Coby would drink 1/2 of an ounce and wouldn't want any more bottle and had to have it put in his feeding tube.  Coby caught on quickly on how to eat and was eating 2 ounces every three hours in his bottle.  We had to really work with him but he would eat the formula.  We were released from the hospital the day before Thanksgiven November 24th.  We were absolutely petrified to take him home.

LIFE AT HOME
We we so excited to show Coby the nursery we had decorated for him.  We never thought he would see this room.  He also got to meet his big brother for the first time.  We had to feed Coby every three hours around the clock and keep records of the amount he ate.  Coby is on 2 medicines and 1/2 liter of oxygen.

CONCLUSION
We are very protective of our son.  We don't let anyone who has smoke on their clothes to be around Coby and we do not let children around Coby.  We do not take Coby out except to the doctors office.
Everytime Coby cries and we have trouble consoling him we are afraid that it is his heart.  We panic everytime he does something different and wonder if that was a normal baby thing or if something is wrong.  We try not to call the doctor everytime we worry.  We never imagined this is how our life would be after the birth of our second son.  Coby looks normal with the exception of the oxygen and family is not as supportive now that we our home with him.   We don't know how long we will be blessed with our child and it hurts that certain family members haven't taken the time to see Coby.

I haven't given a medical description of Hypoplastic Left Heart because I am not a doctor and do not want to say anything inaccurate.  There is a wonderful online manual at Left Heart Matters.  I recommend printing the manual and having it bounded.  We did this and we use the manual when we talk to our surgeon to help us ask questions regarding our son.

Click here for Coby's journal and the most up to date information on Coby and my thought on having a child with HLHS

Click here for a special thanks to several special people.