Sarah Ann was born on Christmas Eve at 2:57 PM. She came into the world screaming as she was taken out of the warm confines of Heather's womb. Sarah was a beautiful creature who lit up each room that she entered or every time you walked into see her. She wrapped this dad around her finger the first time her tiny hand grasped my finger. Sarah had this striking beauty that drew you to stop and linger with her and to stare into her beautiful blue eyes.
Heather and I knew for a while that Sarah was considered a "floppy baby" and was later diagnosed with a general term called Hypotonia, which means that she had low muscle tone. So we started working with an amazing program called First Steps, thanks to a friend's suggestion. Sarah had two amazing Therapists, Gina and April. They taught her to turn her head to the right and left, to hold her head in the middle of her body, to reach out and grasp things with both hands, and to roll over with assistance. In the couple of months that they worked with Sarah, she made great progress and loved her time with them.
Heather, Sarah and I got to do a few trips together in her time with us. We got to go to Pittsburgh for our friends’ wedding in April where we went to the Zoo and Aquarium and she escorted
me into the reception. Then in May we traveled to North Carolina to see family and to watch her dad and Aunt Laura run a Triathlon at White Lake. While there she got to dip her toes into White Lake, snuggled with Grandma, and shared in family fun. She also got to travel to Christmount, grandparents’ houses in North Carolina and Indiana. She also attended her first General Assembly of the Christian Church (DOC) in Indianapolis where she met her Cousin Amanda.
Sarah went to the neurologist on Friday, August 7^th and was tested for various things including a genetic disorder called Spinal Muscular Atrophy. SMA is a degenerative disease that has different types. Sarah was tested for Type 1, which is for infants and is fatal.
One of the issues is that they struggle to breath, and are not able to get a good cough to get “stuff” out of their throat.
Friday, August 14, Sarah had a cold and was struggling to breath so Heather took her to the emergency room and she was admitted to the Pediatric ICU. She was on oxygen and an IV drip and antibiotics for possible pneumonia. Saturday and Sunday she was doing better and we were working to bring her home. On Monday, August 17th, she had a set back and the middle lobe of her right lung had collapsed. She was put back on high flow oxygen to help reinflate her lung. At this point we started to talk about keeping Sarah comfortable and not in pain. So on Wednesday morning, August 19^th, we met with the Palliative Care Team and the Hospice Care for children. At this point, our doctors were pretty sure that she had SMA, even though the test results would not be back for a few more weeks, and we were looking for the best care possible for Sarah.
On Wednesday afternoon, August 19^th, around 12:15 PM, our 8 month old daughter went into cardiac arrest. The PICU team did CPR and brought her back to life. At that point we knew that it was time to make her as comfortable as possible. We removed her oxygen and her NG tube and we got to hold her and talk to her and she was passed from family member to family member. Heather and I got to lay down with her and talk with her and she slept on my chest all night long. On Thursday morning, August 20^th about 7:00 AM we made the decision to bring her home and she calmed right down. Sarah got to feel the wind on her face and we brought her home where we were able to give her a bath, put on an outfit from Costa Rica and a Lady Bug dress, she loved her Lady Bugs. We also got to put her in her swing and to see her dog Jake and some of our cats. Hospice came to our house and started the process of her care. Sarah was hungry and so we offered her some milk and after that small taste she quietly and quickly with no struggle and no pain walked over to sit in God's Arms where she can sit up, crawl and run.
Our little Sarah bear, left this world to God's world at 12:50 PM on Thursday, August 20th. Our angel is now home where she can be the baby that this world would not let her be. She is smiling, crawling, sitting up, and saying Hi to all because our beautiful baby never knew a stranger. She was and is love, pure and simple. And we are blessed to have her choose us to be her mommy and daddy.