Caroline M. - Quilt Finished in 2007
Born: November 11, 2004
Illness: Multiple Heart Defects, Hypoplastic Right Heart Syndrome, with Hypoplastic Right Ventricle, Tricuspid Atresia and Pulmonary Stenosis
A Thank you from Caroline's Family!
Written April 19, 2008
Hello Love Quilts Gang!
I know I am late in writing this, but I haven't been on the site in a little while. Caroline received her quilt just days before going into the hospital for her Fontan surgery, which was on August 1, 2007. We are tickled with it, especially that it has Gingerbread Men on it. We call Caroline the Gingerbread Girl and her big brother, Noah, the Gingerbread Man. Again, thank you to all who stitched the beautiful quilt. I think it is wonderful what people are doing for sick kids and their families.
Stephanie, Noah and Caroline (~HRHS~ Post-Fontan since 8/1/2007)
Caroline's Story
Written by Caroline's mom Stephanie in 2007
Caroline was born on her mommy's birthday, November 11, 2004 after an extremely easy pregnancy. Caroline was her mommy's 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 12, 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 14, 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 (j-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 7 and it was nice. In January, 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 5, 2005, Caroline had her second stage surgery, the Hemi-Fontan (or Glenn). She was out in 5 1/2 days, and we were told that the abnormal tissue had been an aneurysm and the surgeon had removed it.
In October of that year, she started physical therapy, as she was not yet sitting on her own. By January she was getting into sitting and whenever I saw her in bed she'd be sitting up. By April, she was crawling, and now crawls like a mad woman. She is pulling to stand and cruises the furniture. She is getting DAFO leg braces to help her gain strength in her ankles. She is startting to talk, her biggest words being, "up" and "eyebrow." Healthwise, she is doing great. She is small, at just under 22 pounds and 33 inches, but she IS growing. Her final surgery is not yet set, but that one is usually around age 3. Thankfully, she is doing so well, maybe we can push it back to four!
