David and I were so excited the day Tinsley was born. That is until she was taken to the Newborn Intensive Care Nursery. She was a little early (34 weeks) but her weight was good. Tinsley had been watched carefully by my OB during my pregnancy as she was having a few
problems. Turns out that she had meningitis. I had to leave her in the hospital. I went home to a surprise baby shower. I wasn't really in the mood. I had to pump every 3 hours during the day because I wanted to nurse my daughter. As soon as she could eat, I was at the hospital feeding her. After 17 days, she came home. We were so elated! David's parents were due to arrive later that evening.
Monday evening, David and I took our son to hockey and let the grandparents babysit. When we got home, my mother-in-law was making sure that we had the phone number to their hotel room on the refrigerator. I looked at the time, I had just enough time to run a quick errand before Tinsley needed to eat. I was surprised when I returned home and she wasn't awake. I checked her diaper to wake her up, it was dry. I tried to feed her and she wouldn't eat. I was concerned and noted everything. We all went to bed and I thought maybe Tinsley was just having her long sleep period. Nope. I noticed that Tinsley was making strange sounds with her breathing. Still had a dry diaper. Temperature was normal. And still did not want to eat. I was now very concerned. I made a few phone calls, and got some not so good advice. I kept hearing one piece of advice that I learned many years earlier, YOU CANNOT DIAGNOSE A SICK BABY OVER THE PHONE. I looked at David and said, we are going to the emergency room. Something is very wrong with our baby.
The ER doctor that was on that night really listened to me. (I know that is unusual sometimes) He made a couple of phone calls, checked her temp, still normal, dry diaper, and told us that he was sending us to the NICU. It was a long walk. I knew what was wrong and I was very nervous.
Once we arrived, Tinsley was placed on a warmer. We left the room to talk to a resident and give her history. We were gone maybe 20 minutes. When we returned, Tinsley was in a coma and on a ventilator. 30 minutes later her bed was surrounded by so many doctors all asking questions, of me, David, and each other. Once the spinal tap was done, I had my confirmation, and the doctors had one of their answers. The meningitis had returned. The organism she had could "hide" and reoccur later. Boy did it ever.
At noon, Tinsley was transferred by Life Line to Riley Children's Hospital as she was too sick to stay at the current hospital.
At 4:30 pm, I arrived at Riley to see her. I couldn't because they were working on her. A nun came off the elevator and asked me if I was her mother. Yes, and that is when she told me that she was called to give Tinsley Last Rites. My heart was broken. Dr. K, Head of Infectious Disease came out the doors and introduced himself. He told me that she was just too sick to survive. They were going to do everything they could, but not to hold our breath, Tinsley would probably not survive the night.
David, his parents, my parents, and I sat in the waiting room waiting to see her. The thoughts that ran through my mind, Who do we call? What funeral home do we use? Can we use our Church for the service? What is she going to wear? While I knew that Tinsley had lots of beautiful clothes, nothing was appropriate and most did not fit very well. She didn't even weigh 5lbs. David kept saying that someone would come and tell us what to do. I wasn't so sure then, and I am even less sure of that today.
David and I would go upstairs every 2 hours on the even half hour to see her. But someone was always in the room doing something. I finally asked the nurse if we could see her at least one more time while she is still alive. She went in the room and asked the doctor to stop whatever they were doing for a few minutes to allow Tinsley to rest and allow us to visit.
Great News! Tinsley survived the night! Dr K. told me not to get to excited, but I knew that we had lots of prayer groups! I truly believe in the power of prayer! Then she survived the week! (by now we had over 50 prayer chains going across the US). Tinsley stayed in the hospital getting lots of tests, the first MRI on a baby (lots of paperwork), myelogram, cat scans, all under general anesthesia. Her fellow and an anesthesiologist went with her through all the tests, even to the other hospitals.
Tinsley came home on December 8th. We were so happy, and we called everyone. We were afraid to go anywhere. But she did fantastic. We were warned about all kinds of things, however, our beautiful miracle child came through it all. At the end, there were 76 prayer chains, plus us. Tinsley graduated high school, is a girly girl, was captain of the Rugby Team her Senior Year! Went on to Purdue and graduated with a degree in Political Science. She now lives in Washington, DC and works for a nonprofit organization.
David and I always wanted to start our own nonprofit organization. In early 2014, I saw a blurb about another similar nonprofit. I did some research. I did some research through the IRS website and learned how to start a nonprofit and how to become a 501(c)3. I knew that we could use the gowns in our NICU and in checking with other hospitals around the area, I noticed that they could use them too. I was surprised at how quickly it took off.
December 2, 2020
Dear Friends, It has come time for me to step down from my position as Chairwoman of Little Angel Gowns. It was not a decision that I came to lightly, but after long thought, prayer, and talks with my husband.
I will be around, just not as involved as I have been in the past.
I know that the foundation will be in good hands. God will see to that. I love you all and cherish the work you do. Please keep in touch.
Marie Murphy, Founder Little Angel Gowns