I never expected I’d have a child who needed more than me. Of course, no one ever does. My plan was to have baby number four, one we planned to the date, hoping to have a large family to share our love with. I expected the usual routine, bottles, diapers, sleepless nights. God had a different plan.
Early on there was an unusual ultrasound, but everyone said “don’t worry” and soon we welcomed a baby girl to our family. Beautiful, dark hair, the only brunette in a set of blonde babies we already had. We were so happy to see her, looking just like every other baby girl, with one exception. Her right hand was larger than the other. Not significantly noticeable overall, but one finger certainly stood out. We didn’t mind. Aly was ours.
Time passed and there seem to be something different about our baby girl. We couldn’t quite find the right formula to agree with her. At the advice of our pediatrician, we had a brief stay at Cardinal Glennon so they could administer fluids to her. After coming home, she seemed to be wheezing more and more. for which we sought advice. Of course, everyone automatically suggested we try a nebulizer – when that didn’t work we returned. This time there was concern about her dehydration as a result of her wheezing, so off we were to Cardinal Glennon thinking she had RSV or some type of virus, but never thinking our lives were about to change.
She looked so perfect on the outside, yet her labs and lifeless spirit told us something was seriously wrong. We were told they weren’t sure what was happening or whether she would pull through. It was suggested we bring family to see her as it may be their last chance. I remember the rosary we wrapped around her little foot and how hard we prayed she would get better.
Then it happened – the day that changed our lives forever – a few words spoken by Thomas Foy, MD, pediatric gastroenterology, would give us hope.
“The good news is I know what is wrong with your daughter, and the bad news is I know what is wrong with your daughter.”
Aly had a very rare condition called intestinal lymphangiectasia. Dr. Foy had seen about five cases in his 30 years who had come to Cardinal Glennon from around the globe. Within 24 hours of his diagnosis and progressive treatment to give her body what it needed to survive, we saw a completely different child. She was smiling, sitting up and laughing at us. Dr. Foy was just as amazed! He walked in, “Is this child the same one I saw yesterday?” He had saved her life, and after four months in the hospital, she was ready to come home.
Because her condition is rare and complicated our beautiful baby girl was cared for day after day, by the hours and minutes, phone call after phone call, by an AMAZING physician and nursing staff. Those nurses knew the minute she came in, she had to be a priority as her condition could change instantly. We were blessed with a physician who had no “office hours,” who expected to be called around the clock for her needs and called to check in on her whether it was 2 p.m. or 2 a.m.
Aly would need to have an “on call” team of caregivers every day for the rest of her life. The years ahead were going to be the true test of faith, but no one could envision the journey they would all be taking with her. Ten years of being at Cardinal Glennon EVERY single week of the year, 2-7 days a week, showed us her struggle was only beginning. Things were getting worse, blood need was increasing. As a mother, I could see the worry on everyone’s face. Dawn, Karen, Brittany, Tina, Bobby, Marsha, Ericka, Stacey, Kara, Kim, they weren’t just the Costas Center, 4 north, or GI staff, they were our life. We couldn’t walk into the cafeteria without Marie asking about her or pull in the parking lot without security saying hello. We looked forward to a cheerful little cart pusher, visiting us in the halls. We spent EVERY SINGLE DAY with them. I saw the fidgeting and worry on Dr. Foy’s face, how it was wearing on him and the bearing weight of making a decision. I felt his pain. I felt his struggle. He knew it was time to make drastic decisions. Decisions that meant she had to travel for the most experienced care, those who surgically could be prepared for the worst case scenario….. and so we did. He sent us to another state, where the darkest days of our lives took over.
We knew it wasn’t going to be an easy route. Everyone at Glennon knew this could be the last time they ever saw or heard her contagious laugh. A few short days later, the worst had come. She had gone into respiratory, kidney, liver and pancreatic failure, all at once. I felt the world robbing me of my very soul and testing my faith. From the moment we left Glennon, the texts, the calls and the emails began. Maybe she wasn’t at Cardinal Glennon, but she WAS everything Cardinal Glennon stood for and EVERYTHING to EVERYONE who cared for her the last 10 years. I witnessed a miracle in the recovery of my brave, fighting girl. She was in a battle for her life, one that nearly destroyed me and my family. But, my faith never came out stronger. My faith in prayer, in humanity and my faith in those who have treated, actually….those who have LOVED my daughter all these years.
Without all our “family” at Cardinal Glennon, we would have been alone, away from home, lost in fear. Without our Cardinal Glennon family, I would have lost my ability to cope every day, with one bad report after another on her physical being. But they were never ready to give up, they sent prayers, support and their love…. and with that, they sent faith and strength. They sent a miracle, from God, through the hearts and hands of those far away and when that great day came, they sent a limo with a beautiful big sun on the side, saying it was time for her to come home, back to Cardinal Glennon.
We still have a long journey ahead.