I never kept a diary of what life was like when Lillian was born. At the time, I thought I never wanted to look back and reread those terrifying days. Five years later, the memories still dance around my head vividly. It has been on my heart to maybe do some blogging on those early days. Sometimes, I think it will help me to do it, but mostly, I feel it impressed on my heart that it might be out here in the virtual world to maybe help someone else. Maybe someone else going though a similar situation can identify with. So....as I remember those days, I'll share them here. Try to honestly convey the events and emotions I recall. Let's start with birth.
She was blue head to toe. We had been told she might have trouble breathing due to being a bit premature, even with an amnio showing mature lungs, she might struggle. I wasn't too concerned when they began to breathe for her with the ambu bag. Her little body pinked right up and they would stop bagging. Five seconds later, she was blue from head to toe and they were bagging her again. Repeat, repeat, repeat. She was in a warmer just a few arms lengths away from me and my eyes were glued to the chaos that was ensuing. They just kept bagging her over and over again and they nurse couldn't stabilize her long enough to even transport her to the nursery. At some point, my OBGYN left the work he was doing on my and went to the warmer as well. That was a defining moment for me. I knew. I knew right then something was very wrong. I remember hearing my OB call out to the desk for a pediatrician to be called ASAP, then at some point there were multiple staff members moving the warmer and bagging her and getting her to the nursery.
After the doctor finished with me, he left the room to go the nursery to help until the pediatrician arrived. When he did come back to the room, he let me know that she would be transported to a "big city" hospital very soon, they were just trying to decide which one. He must have been in there with us a while. Matt, my mom, and my sister in law were all in the room and I remember after he left just closing my eyes and breaking down into tears. My sisterinlaw laid across me in a hug as best as she could. I think I was just in shock. My husband kept saying.."oh, she's going to be fine" My sisterinlaw left, in tears as best as I remember. The pediatrician and my doctor entered the room at some point together and introductions were made and then the pediatrician gave us this news..."your daughter has a cleft palate and if we hold her tongue down, she breathes on her own, but she still can't keep her 02 sats up even with that. something is going on that I don't understand. there is a team from Riley on the way here to transport her" the team arrived fairly quickly, and before I knew it a whole team was in the room with her in an isolette. I reached over and opened the door...she was on her stomach, sleeping looking so peaceful. I stuck my hand in to her and she grasped my finger immediately. It was more than I could bear. The team told us she had pierre robin syndrome and she'd have to have jaw distraction surgery and she'd be in the hospital for at least a month. They would put metal rods in her jaws that would have to be turned daily to advance her lower jaw so she could breathe. Then, they whisked her away. I don't remember too much after that...I recall waking up at four thirty the next morning and crying as soon as my eyes opened. The reality of the situation hitting me like a load of bricks. I know Lillian was admitted to Riley just after midnight, so I can't really recall when Matt left or anything after they took her away except waking up at four thirty. The nurse happened to be in the room and she brought the phone over to me and dialed the hospital and got the nurse taking care of Lillian on the phone. Her name was Beth (short for Bethany). She was so kind to me as I wept while she talked about how good they were taking care of her. I don't remember much after that except when I finally got to the hospital to be with her. There were several phone calls that day for permission to intubate her and take her to surgery. I arrived at the hospital the evening after she was born. I got to the floor to see her and my sister stayed in the room I was sleeping in until I fell asleep.
The photo in the upper right corner was taken the next day when I saw her. I couldn't get over how much she looked like her Daddy.