Tuesday, August 29, 2006

This is the story about Caroline Lee, My Miracle Baby.

Caroline was born on November 11, 2004 via caesarean section due to breech presentation at Robert Packer Hospital in Sayre, PA. After an uneventful pregnancy, I was thrilled to find out I had a daughter to raise with my son. My mother, who was there for the birth, accompanied Caroline and the nurse to the nursery while I got stitched up. While I was in the recovery room, Caroline's nurses would come in occasionally to tell me that she wasn't "pinking up" like they wanted, so I couldn't hold her yet. She was in 100% oxygen and her oxygen stats weren't to their liking.

After being on oxygen for several hours, the pediatrician on-call decided to send her to Arnot Ogden in Elmira, NY, for tests because they had a NICU and proper newborn testing supplies. So, around 6:00 that evening, I was wheeled to the nursery to see my beautiful little girl, who still didn't have a name at this time. She looked perfect. Her skin looked pink to me, but I wasn't trained to know what the right color was. While I was visiting, the transportation staff from Arnot Ogden arrived. When I saw the incubator that was to be my daughter's next lifeline, I wanted to cry. But, I said my goodbyes and waited until I was in the room to cry.

Around 11:00 that night, we got the phone call that told us Caroline had a serious heart defect and that we should decide where to send her: Geisinger in Danville, or Hershey. We chose Hershey. About an hour later, Caroline was life-flighted by Life Lion to Hershey.

The next morning, after Hershey ran their tests, I got my phone calls with diagnosis and treatment. Caroline needed immediate open-heart surgery to place a shunt because her pulmonary artery was small, as was her tricuspid valve and right ventricle. Her clinical diagnosis: Hypoplastic Right Heart Syndrome, an extremely rare, but correctable congenital heart defect.

So, at a mere one-day old, Dr. John Myers performed Caroline's shunting procedure. We learned from the nurses that he's the best, and she would do well. She would also need two more procedures to correct her problem: the hemi-fontan, and then the fontan.

In May 2005, she had a catheterization to check her heart. They found unusual tissue next to her tricuspid valve, which would be removed during her surgery.

On August 5, 2005, just shy of 9 months, Caroline underwent her hemi-fontan, performed by Dr. Myers. The piece of tissue removed was an aneurysm. Thank goodness they found it before it had burst. She came through wonderfully and was home in 5 1/2 days.

She is starting to grow like a weed now. Caroline was a year old on November 11, and I can't believe how good she looks considering all she has been through this year. Her cardiologists say she will need the fontan surgery around 18 months - 3 years of age, and this should be her last one. Lets keep our fingers crossed that all goes well.

A big thank you to Dr. Myers, and the PICU staff at Hershey, and to Debbie Heath at the Robert Packer Hospital; if it wasn't for her, Caroline's problem may not have been noticed until it was too late.

Caroline's heart defects are: tricuspid atresia, pulmonary valve stenosis and hypoplastic (small) right ventricle.

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