Beads of Courage

Beads of Courage.....before yesterday, I had never heard of them.  Today, they serve as a source of hope, and a reminder that one day Rowan can look back on this time in the Cardiac ICU and be proud of what he has made it through.

Each patient in the CICU gets a necklace with their name, along with several beads that correspond to their treatment.  Each bead represents a unique experience that Rowan has made it through.  These beads are designed to remind Rowan (and his mommy and daddy) that his story is not about what is happening to him, rather, it is about having the courage to take control and face whatever life throws his way during this difficult time.  No matter what, he will always be little Rowan and nothing can change his fighting spirit.

Here are some of Rowan's experiences that we are proud to have made it through:

Glass Star:  A stay in the CICU
Magenta:  An ambulance ride
Purple:  An infusion of heart medication
Yellow:  Inpatient admission
White:  Learning to tolerate and take new heart medications
Light Green:  X-Ray and Echocardiogram
Glass:  Extraordinary Experience (having to have emergency intervention and strong medication to stop  two serious episodes of SVT)

Of course, with every good story, there is a beginning.  This is ours:

In the wee hours of Thursday morning, Rowan seemed a little fussier than normal.  At first, I didn't think too much of it, because he has just had his two month shots on Tuesday and had been feeling pretty crummy since then.  However, around 2 AM, he stopped taking his bottle and would scream if we tried to feed him.  I walked every inch of our house throughout the rest of the morning trying to get him to calm down.  As soon as his pedi's office opened, I called and let them know what was going on.  The nurse thought it sounded like symptoms of an oral thrush and said that we could come on in.  At our appointment with his pedi, I explained what had happened, and just as a check up routine, she listened to his heart.  Immediately she stopped, got up, and told us that she would be right back.  I knew then that something was very wrong.  As it turned out, Rowan's heart was beating so fast that she couldn't even count it.  When hooked up to a machine, we found that Rowan's heart rate was over 300.  She immediately called the cardiac pedi at the Gainesville Sibley Heart Center.  We were rushed over there, where the doctor promptly greeted Rowan with an ice pack to the face.  Apparently, by covering Rowan's entire face with ice (which looks horrible, by the way), it induces a reflex that stops his heart from beating out of control.  Within a few seconds, his heart rate when back down to 130.

We then learned that Rowan has a heart condition called SVT, which causes the heart to short circuit and start beating out of control.  When they first did an echocardiogram of Rowan's heart, one section looked very swollen, and he had some fluid above his stomach.  This was all caused from the SVT.  We now know that Rowan has probably had this for awhile now.  The tricky part is that it will only be picked up on when he is having an attack.  For example, we have been to the doctor with check ups and reflux issues five times before this, and his heart rate has always been normal.

Our Gainesville doctor then called Egleston and an ambulance was sent to pick us up.  I rode with Rowan, while Jody followed behind.  Rowan did very well until we were about 3 minutes out, and then he had another attack.  The lights immediately turned on and we went zooming through rush hour, Atlanta traffic.  It was scary for me, because I couldn't see into the back of the ambulance where he was, but I could hear what was happening and knew that he wasn't doing well.  It also freaked Jody out, because he was left behind as we rushed down the road.  As it turned out, Rowan had started to turn grey and stopped breathing, so they had to give him an emergency heart medicine that literally puts the breaks on the heart (which as you can imagine, was also painful for the little guy).

Once at the Emergency Room, Rowan had another episode and had to be greeted with another pack of ice to the face.  We were then transported to the Cardiac Intensive Care Unit, and we have been there ever since.  While in the CICU, Rowan has had several more attacks.  On the first night, he had to be given the emergency medication two more times to break the cycle.  The next day, he also had several more attacks, but he was able to break the cycles on his own.  Today, he had two more attacks, but they were short, and he broke them on his own as well.  The doctors also did another echocardiogram and found that Rowan's heart had begun to repair itself from the damage that it took during the attacks.  His heart is no longer swollen (Praise the Lord!), and he no longer has fluid around his stomach.

Right now the doctors are just trying to find the right combination of medications to stop the attacks completely.  The goal is to make it a full 24 hours without an attack, so that he can move to the Step-down Cardiac Unit.  Once there, we will begin taking care of Rowan on our own.  We will be trained on how to check his heart rate with a stethoscope and give him his new heart medications.  We hope to be on our way home by at least the end of the week.

Although this has been such a scary time for us, we are very blessed that his condition is not any worse.  As the nurse told us tonight, Rowan's case is actually mild compared to many babies with SVT.  Most babies start to lose control of their blood pressure and oxygen levels, but Rowan has never had a problem with those.  The hope is that Rowan will outgrown this condition within a year or so.  For some babies it takes longer.  If for some reason he still has it by the age of 7 or 8, he would have a procedure done where the doctors would burn the pathway in the heart that is causing it to beat out of control.  All and all, Rowan is expected to live a normal happy and healthy life.  We will just be having many check-ups with our Cardiologist in Gainesville for the next few years.  :)

If there is one thing that Jody and I have learned about our son through this experience, it is that he is one tough little boy.  Rowan can handle anything that life throws at him, many times better than his mommy and daddy.  We are so proud of him and the courage that he has shown at just 9 weeks of age.  We'll make it through this, and we'll all be far better for it, too.

This is Rowan's bed, along with his Curious George.  When Rowan was being wheeled up to the CICU, he had his eyes wide open and was just looking around at everything.  His grandma has always called him Curious George, because he can't go a minute without finding out what is going on around him.  The nurses loved it and couldn't believe his big, expressive eyes.  :)

This was taken on Rowan's first full day in the CICU.  Poor little buddy wasn't feeling too well.....

Ahhhhh, much better!  Tonight Rowan got to get his oxygen tube removed!  Now maybe he will be able to get a good nights rest.  :)