Tuesday, July 11, 2006

Poe familyheart story by heart mom Michelle Poe.

These past few years have been such a whirlwind of unanticipated events that sometimes I can hardly believe it myself. I met my husband and married in 2001. We tried for 5 months before I got pregnant with Cadence. I was very sick throughout the pregnancy and one month before Cadence's due-date my hubby was sent to Iraq with the Marine Corps. I was devastated at the thought of taking care of a newborn all alone. Little did I know that I would not even bring my child home from the hospital until she was almost 2 months old.

One month later when my precious little baby girl was born we began to immediately notice that something wasn't right because she would not eat. In the middle of the first night at the hospital after giving birth, I awoke to find that she was not in the room with me. I immediately knew something was terribly wrong. I found her a few rooms over hooked up to oxygen and all sorts of tubes and lines. My worst fear had come true.... I don't even know how to describe the way I felt.... but it is the worst feeling I have ever felt in my life.

The next day she was flown via helicopter to Duke Medical Center. I was released from the hospital and drove home with no baby in the car to pack, so I could drive to Duke and be with her. Arriving at the house and seeing the nursery all ready for the baby but no baby in my arms was so sad.

When I arrived at Duke, the doctors explained that she would require open heart surgery as soon as possible. My husband was able to leave Iraq and fly back to the States to be with us. At 5 days old, after her daddy was able to see her for the first time, Cadence had her first open heart surgery to repair the Coarctation of the Aorta. The surgery went well despite a difficulty in trying to take Cadence off the ventilator.

About 5 weeks later we were able to leave Duke and bring Cadence home. She came home with a Nasogastric feeding tube and many medications. She required to be hooked up to her feeding tube every 3 hours and it took 2 hours to feed her... this continued 24 hours a day for the next 4 months. She spent 16 hours out of a day being fed slowly through a feeding tube. I had to learn to insert the tube correctly. After a few months of being fed this way it got to the point where she was fighting with the tube so much that a G-tube was being considered. After going to a consultation and setting a date with her surgeon for a G-tube, she mysteriously starting eating on her own, thus never requiring a G-tube. Until this point my husband and I had almost driven ourselves crazy trying to figure out why and how to get her to eat. We were so relieved and surprised when she began eating on her own :-)

Everything seemed to be going great until she was 18 months old and went for a cardiology check up. We found out that she had scar tissue that needed to be removed and she also needed her VSD to be closed. At the time we were living in Biloxi, MS and decided to go back to Eastern NC for her surgery. At 20 months (October 2004) she had her second open heart surgery at Pitt Memorial County hospital in Greenville, NC. The surgery itself went well, but due to some damage and problems that arose through removing the tissue, she required a third surgery to place a pacemaker. About 2 weeks after her open heart surgery, she was able to leave the hospital. She has been doing well since that surgery.

Cadence is the strongest little girl that I know... she has been through 2 open heart surgeries, has a pacemaker, and even went through Hurricane Katrina!!! She has been through so much in her little life, but despite it all she remains a very happy and bright little girl and she is doing great at the moment. We do not know if and when she will need more surgery for her heart defects, but the possibility is very great, as it is with all heart kids and babies. We take it one day at a time and cherish each and every moment. Each month she has a checkup to see how her pacemaker is working and every 6 months she has a cardiology check up.

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