Caroline Lee’s Story
written by mom Stephanie
Caroline was born on my birthday, November 11th, 2004 after an extremely easy pregnancy. Caroline was my second c-section and second breech baby, following in the footsteps of her big brother, Noah.
When Caroline was relatively newborn, the nurse in the nursery didn't like her color, so she was on oxygen right from the start.
After a few hours with no improvement, Caroline was sent out of state (only about 10 minutes from where she was born) to a hospital with a NICU and specialized equipment. After a few hours, we got our phone call....Caroline had a serious heart defect and needed to be sent somewhere for surgery. I chose to send her to Penn State Milton S. Hershey Medical Center in Hershey, PA. Caroline was airlifted to Hershey around midnight. After they ran their tests, they concluded that Caroline had Hypoplastic Right Heart Syndrome, specifically, small right ventricle, no tricuspid valve and a narrow pulmonary artery. She had her first surgery, the BT shunt, on November 12th, 2004 at a mere 1 day old. She came through the surgery okay, and I got the phone call that she was stable.
I finally got to see her on Sunday, November 14th, and it sure is scary to see that ventilator for the first time. But, Caroline did well and they gave her some medicine to up her respirations after she was off the vent, and she began to have "shakes". At first they thought it was a reaction to the medicine, then decided it was seizures and gave her Phenobarbital, which made her tired. Caroline's biggest obstacle before coming home was learning to eat, which I kept arguing with the nurse, how is she going to eat if she has food going to her stomach all the time (g-tube), So, FINALLY they stopped her feedings with the tube (she only had them at night) and she ate much better. This is also around the time that I was told that Caroline was missing her corpus callosum in her brain, but that it shouldn't hinder any of her development (and all the while I'm being told, I'm thinking, "boy, I really screwed her up somehow").
Anyway, she finally came home on December 7th and it was nice. In January 2005, she had a visit with a neurologist who didn't think she was having seizures and that her corpus callosum was just small, not missing. So, we got her off the Phenobarbital and she was a new kid! She was awake more and started developing more. In May, she had a heart cath and they found abnormal tissue growing out of her small right ventricle (where it had been closed up). On August 5th, 2005, Caroline had her second stage surgery, the Hemi-Fontan (or Glenn) Procedure. She was out in 5½ days.
Caroline's 3rd stage surgery, called the Fontan, connected her inferior vena cava to her heart to bring blood flow to the lower half of her body because her right ventricle was severely hypoplastic (small) and was closed off during the Hemi-Fontan, which connected the superior vena cava, and restored blood flow to the upper half of the body - basically, a type of bypassing because her right vent doesn't work.
Caroline had her Fontan surgery on August 1, 2007. The surgery was quick and without complications and she was home in 4 days, almost a record!! As the one-year anniversary approaches, it is just weird to think that we're most likely DONE with the surgical route. Now we need to work on the behavior and following directions route. Our pediatrician thinks that most of Caroline's problems stem from her small corpus callosum, but hopefully we can resolve them and get her caught up with her peers.
Caroline likes music, drawing, singing and playing with Noah. Noah likes cars, dinosaurs, Scooby Doo, riding bikes, trains and Play Doh.
You May Send Mail to our Family at:
PO Box 133
Mehoopany, PA 18629 USA