"I was told that I should gather up all my strength, hold my daughter, love her, and let her go."
Sophia's story told by mom Anna.
My baby girl Sophia had a rough entrance, at 26 weeks' gestation and just 1 lb 15 oz. She had an umbilical infection when she was just a week old, a PDA (Patent ductus arteriosus), a cleft palate, as well as being ventilated.
As time went on, her belly started getting bigger. They weren't sure why. They did an ultrasound on her abdomen, and it was ascites that had built up. They went in and drained manually about 160mls of fluid. They tested it and determined it was lymphatic fluid. The draining helped for a bit, but the fluid returned, this time making her whole body swell. She gained pounds of weight in just a couple of weeks, and by about 2 months old, I hardly recognized her from all the swelling in her face and body. It broke my heart.
They did another ultrasound to see if she was a big enough candidate for a lymphangiogram, but she wasn't. They were getting to be on their last treatment ideas, a drain had been installed in her belly, with a bag to be drained every few hours and measured. A medicine called Octreotide was helping with swelling a little, but the fluid was hard on her lungs, and the draining of fluid eventually caused too low potassium and required fluid resuscitation.
We were at our last thing to try- sirolimus. I gave consent, they began it, and it started actually working after a few stressful days. But then her liver and kidney function began to plummet. All of the medicines were just becoming too much.
So I was told that I should gather up all my strength, hold my daughter, love her, and let her go. There was nothing more to do. So then, on July 28th at around 5pm, I held my rainbow baby girl as she took her last breaths. I hold space in my heart for all NICU babies who didn't get to make it home.
