Monday, September 18, 2006

The Story of Jack Petty

It is amazing how in one instant your life can change forever. There is no going back and at times the future seems dim. Yet in that instant you learn how very precious each day is. You learn to live in the now and cherish each moment that you are able to spend with your child. The day our son, John Michael Petty or Jack as we prefer to call him, was born was a day we will never forget. The days to follow will also be engrained in our minds forever. Along the way Jack had taught us what it means to be a champion and to never give up no matter what is thrown at you. More than anything Jack has truly taught us what life is really all about.

Jack was born on May 9, 2006 at Buena Vista Regional Medical Center in Storm Lake, Iowa. Just hours after his birth, Jack began turning blue while a nurse was giving him his first bath. It is funny looking back, but I remember that the first time I saw him, I just felt as though something was not right. My instincts proved to be true as help was called in from Sioux City, Iowa and later Sioux Falls, South Dakota. It was decided that Jack would not be able to receive the care he needed in Storm Lake or Sioux City, and he was quickly flown to Sioux Valley Hospital in Sioux Falls. While in Sioux Falls, Dr. Stamato, a pediatric cardiologist, determined that Jack had a heart defect know as Tricuspid Atresia.

In the days that followed we determined that Jack would be sent to Iowa City for his first of three open heart surgeries. My husband, Mark, and I both graduated from the University of Iowa. Coming back to Iowa City felt a little like coming home again. Little did we know how truly at home we would feel by the end of our stay at the University of Iowa Hospitals and Clinics.

Jack spent his first few days in the PICU while waiting for his surgery. We were able to hold him and feed him and cuddle with him as much as we wanted. The staff at UIHC made us feel so comfortable. We loved having a private room and being able to be with Jack as much as we wanted. The nurses, from the start, were so good to all of us. Each night when my husband and I would walk back to the Rossi House, where were fortunate enough to stay, I knew that we were leaving Jack in the excellent hands of some very skilled nurses. They cared for him as if he was their own.

Jack’s first surgery, the BT Shunt, was performed on May 18, 2005. It was hard to let Jack go, but we felt very confident that Dr. Burkhart would do an excellent job. The surgery itself went well. However the hours that followed did not go as well as planned. On the morning of May 19, Jack went into cardiac arrest. Luckily the room was full of doctors who had been rounding on him at the time Jack coded. The sight of Jack in so much trouble will be something I will never be able to forget. We thought for sure that God had decided that it was time for Jack to be with Him. However we quickly learned that Jack was not ready to give up yet.

Within 45 minutes Jack was hooked up to a portable heart and lung machine known as ECMO. Dr. Law and Trudy Pierick came in to talk to us about what was happening. It is amazing that just when you feel like giving up there are people who will keep fighting for you. That was when I realized that there are really angels on earth. The days that followed had their ups and downs but somehow we made it through. Jack was able to successfully come off the ECMO machine and had a good chance for a full recovery.

During our 38 day stay at UIHC many more angels came in to our lives. Hundreds of people across the United States were praying for us and staying tuned into our CarePage. The doctors who took care of Jack included us in all their decisions and let us know each change that would be made in Jack’s care. The nurses and staff cared not only for Jack but for our entire family. Our parents stood by us, often times along Jack’s bedside with us. I learned from this experience that you never stop being a parent or needing your parents no matter what age you are. People back home took care of our lawn, got our mail, cleaned our house, and prepared meals for us when we returned home. Never in my life had I seen such an enormous outpouring of love. Each night I would tell Jack that I loved him and that I was proud of him and that all his angels were watching him. Thank God for angels!

The day we got to take Jack home, June 15, was one of the most exciting and terrifying days of our lives. We quickly got into a routine and life seemed to be settling down a bit. It was so wonderful to be home as a family again. Our first child, Luke, was approaching two, and he quickly fell in love with his brother. Luke handled the entire situation like a champ, and I am convinced that one day he will be able to cope with any thing that comes his way. We learned how to give Jack shots, draw up his meds, and run his feeding tube. These were all things we never would have dreamt we would need to learn how to do. But it quickly became like second nature to us.

After Jack’s August cardiology appointment in Sioux Falls, Dr. Stamato recommended that Jack’s second surgery, the Glenn, be moved up. So it was time to pack up and head back to Iowa City once again. Arrangements were made for Luke, and we were on our way. When we got to Iowa City, Jack had a cardiac catheterization. I forgot how hard it was to see your baby in pain but reminded myself that we were doing what was best for Jack. During the cath, Dr. Fagan discovered that Jack’s shunt was no longer working and that surgery needed to be done soon.

This time we were in and out of the hospital in 10 days, our shortest stay yet! Jack flew through his second surgery. We were able to spend some time on the beautiful new peds floor. What a treat!! We also caught up with a couple other heart families who were also back in Iowa City. We relived our stories of our first stay and talked of hope of the future. I know those families will always have a special place in our hearts. Knowing that someone else is experiencing some of the same emotions as you is comforting and reassuring. It was nice to see all the friends, nurses, doctors, and staff we met during Jack’s first stay but we were relieved that we would be heading home soon.

Jack did very well at home following his second surgery. He no longer needed his feeding tube and was a very happy baby. However, in late September we started to see a change in Jack’s appetite. He wasn’t eating well and was throwing up a lot. An appointment was made with a GI doctor in Sioux Falls. On Halloween we took Jack in for an upper GI and swallow test. He did well on both of these but the radiologist doing the test noticed that Jack had some fluid built up in his chest area. Thank God that the radiologist was on the ball and caught Jack’s pleural effusion (chylothorax).

Jack’s thoracic duct had been nicked during his second open heart surgery and he developed a leak. So, we spent another 38 days at Sioux Valley Hospital in Sioux Falls. Most of the time was spent in the PICU. Jack had a couple of chest tubes put in. He also had to be on a TPN and then a special formula which tasted awful called portagen. All the while, Dr. Stamato remained in contact with Dr. Burkhart to chart out the best plan of action. Once again Jack persevered. There were days when we thought the fluid would never go away. But after much patience it finally did.

While in the hospital I learned how valuable therapists and Child Life Teams can be. Along with the excellent care given to him by the doctors and nurses, Jack had physical, occupational, and speech therapists checking in on him and making sure he was developing as he should be. Child Life would bring him toys to keep him busy and entertained. The music therapist even stopped in to give Jack a concert or two. Jack was always happy during his stay and once again taught me to stay positive and to never give up.

Since our stay in Sioux Falls Jack has continued to do well. I look at him now and can’t believe that he was once our little boy who was so sick. He loves trying to keep up with his big brother and loves to play with his toys. We still continue to working on Jack’s feeding skills. He still isn’t real interested in eating but we do our best to be sure he gets what he needs so that he can continue to grow and prepare for his third and hopefully final open heart surgery. We know that Jack’s heart condition will always exist but hope that he will grow up to have a very fulfilling life.

We are learning to accept whatever life throws our way. When Jack was at his sickest of days all I longed for was the chance to show him how much I loved him and wanted him in our lives. Having the opportunity to do this is one of the greatest gifts of all. I want Jack to know how much he has changed my life and how hard I try to be the very best mom I can be. Some days are easier than others but that is life. I thank God that we have been able to be in two exceptional hospitals with amazing people who were able to give Jack the care that we could not. Not only is a Jack a champion in my heart but so are all those who have been on this journey with him.

If you would like to find out more about Jack’s Journey you can go to: and type in JacksJourney

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