Free Bella's Gift by Rick Santorum Page A

boys to do. We went outside, where the sun was shining, and fumbled around trying to best arrange the kids. I sat in the middle of the outdoor couch, holding Bella. Sarah, Peter, and Patrick crowded next to me, eager to be as close as possible to Bella. Daniel, John, Rick, and Elizabeth stood in the back, all leaning in toward Bella.
    Everyone was happy that we were having this familypicture taken but simultaneously fearful that it would someday become a sad reminder of a fleeting period of time, a time when Bella was briefly with us. The treasured picture captured our exhaustion but also our joy, hope, and gratitude.
    Even though Bella was our eighth baby, our anxiety made it seem as if she were our first. In a very real sense, we were new parents. We learned how to perform newborn care differently, more carefully, more thoughtfully. Because Bella could not nurse, I rented a pump so she could benefit from the nutritional benefits of my breast milk. We tried lots of different bottles and nipples made specifically for special-needs infants, but she got dusky every time she tried to take a bottle, because she could not suck and swallow properly. We even tried giving her oxygen when she fed, which helped, but she still wasn’t able to eat enough through a bottle to sustain her. So she received her mother’s milk through a nasogastric tube that went through her nose and down into her stomach. Breastfeeding was always so important to me, and it made me happy to know that Bella was healthier because of it.
    Details were everything, and prayers timed all Bella’s feedings. We were getting to know our Bella, her issues, and how best to take care of her. We were with Bella around the clock and watched her constantly. There were always treatments to be given and medical supplies that needed to be washed. As much as my experience as a NICU nurse helped, this was a skill set I had never dreamed I would need to use for my own baby.
    Though her care was extensive, Bella was not “sickly.” In fact, she acted like a normal, sleepy, newborn baby. She was a preemie, but she was growing. Other than her little fingers, only a geneticist would notice the other outwardmanifestations of her rare condition. We told the children that Bella was not sick; she was just made in a different but very special way. We took care of Bella as we did our other infants; we just fed her differently.
    At her one-month birthday, Bella weighed five pounds, five ounces. We were proud of that simple, yet important, milestone. With her putting on weight and allowing us to measure her life in months, not weeks, we had many reasons to be hopeful. The night before this birthday, we took her to our church for the first time. In the presence of our Lord, we gave thanks for her life and resolved to continue treasuring each day with our angel.
    My dear family was there for us every single day, delivering gifts, talking, praying, and helping us in every possible way. My friends Katy, Nadine, Jennifer, Leanne, Chris, Mary, Muriel, Kathy, Melanie, Laura, Katie, and, of course, Susie were all there for us. They made meals, brought Bella the sweetest baby gifts, and sat and talked. The love and support we received from our family, friends, and church community helped to strengthen and fortify us during this challenging time.
    Rick wrote an e-mail on the night of Bella’s one-month birthday to thank our family and friends for praying for her during her first month of life and for being there to help us. We thanked people for celebrating her life with us and for contributing to our miracle by sustaining us through prayer and support. He shared the story of how I had contacted Archbishop Chaput after hearing his homily where he mentioned our family and Bella’s birth. He told me that after Mass, a woman came up to him and said she had an eleven-year-old daughter with full Trisomy 18. Her home parish was called Our Lady of Fátima—Bella’s confirmation name. Rickexplained