This is why we are doing what we doing, creating pages for these families and their babies!!
Arianna Nadia was born on Tuesday, June 8th, 2004 at 8:56 a.m. She weighed 4 pounds 15 ounces. She had lots of dark, black hair and long, curly, black eyelashes. She was our sweet baby girl whom we loved and adored for 37 wonderful weeks on the inside plus 1 glorious day on the outside. She lived just one day after her birth and joined her big brother, Aidan in heaven on Wednesday, June 9th, 2004
In February at just 19 weeks tragedy struck a second time when we went to the doctor for a routine sonogram. On that day, Arianna was diagnosed with a diaphragmatic hernia. Her stomach contents were in her chest which pushed her heart over and gave her lungs little chance to grow. After a trip to Children's Hospital of Philadelphia we knew the prognosis was grim. Her birth defect was severe and she had little chance of survival. We now know that she also suffered from DeLange syndrome, a chromosomal abnormality associated with diaphragmatic hernia. We gave her the best possible chance at life by delivering seconds from a children's hospital which could offer her ECMO, but after an unsuccessful three-hour procedure, the ECMO would not work. The syndrome from which she suffered had also caused her to be small and at 37 weeks, she was just to little for ECMO to work. So, we held her, touched her, kissed her, and loved her for the remaining hours she could spend with us. Then, we laid her to rest with her brother Aidan. Now Collin has two angels up in heaven watching over him and we have two empty holes in all of our hearts because we miss them so much...each and every day.
"Great sadness, great tragedy digs holes in our souls where we can put great beauty."
Through this terrible tragedy there has grown great beauty. One of the greatest gifts we received was the love, friendship and support of Patty Lewis, founder of Alexandra’s House. She was there to help us love our baby, welcome her into the world and ultimately, say good-bye. Because of Patty and Alexandra’s House volunteers we were not alone as we navigated the endless doctor visits and tests.
The scrapbook pages you create will be given to families in circumstances not unlike our own. In these pages they can preserve their thoughts, prayers, and memories. And, in their grief they will return to those pages for comfort as they remember. Know that you are doing a great work!
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