A Little of Madison's Story

My daughter was born at 26 weeks weighing in at 1 lb 13 ozs and 13 inchs long. There was no particular reason I went into preterm labor I just did. She tried to come at 25 weeks and I was in the hospital where the doctors held her off for a week. The labor was never stopped just slowed down so yes I felt contractions every day. The day my daughter came into this world I heard one small small cry. They quickly wheeled her over to me and wheeled her off just as fast. No, I did not get to hold her nor did I know what her condition was. When I was finally taken to the NICU my tiny tiny baby girl was laying under some saran wrap (to help keep in the moisture) with more wires and tubes running out of her than a grown adult should have, let alone such a tiny frail creature. Her skin was basically transparent. Her skin was very dark in color but this was due to the jaundice it just looked different on her. She was able to open her eyes but wouldn’t. She had not even developed nipples or any signs of where they should be. I thought that maybe she would never have any until a nurse explained that they would still grow. That just amazed me cause grow from what? These are some of the small things that should happen in the womb where the baby is safe. One of the bigger things would be their lungs and hers had needed more time. She was given a drug called surfactant (which the March of Dimes helped to develop) which played a huge roll in saving her life. Within 48 hours her right lung collapsed. Which in itself is bad enough but she was draining fluid which was really bad? They were not sure if she would make it because every time they took a chest tube out the pnemoniathorax would come back and another tube would have to go in. She also had what they call a PDA which is a hole in the heart. No, it does not stop there she also had a grade 2 IVH which is a hemorrhage on the brain. She would also become very swollen from water retention. So what I have told you so far is some of the medical side and not all of it. Here is some of my side. My baby girl was fighting for her life with more tubes and medicine running through her little fragile body than you could even imagine. So what would a mother want to do in this situation? She would want to cuddle and hold her baby and reassure her, but no that is not how it works. Holding her at this point could jeopardize her life. I couldn’t even softly stroke her because it over stimulates these tiny babies and also compromises their health. So all I could do for the first month of her life is come in every morning and sit by her bed and sing to her and talk to her. I did a whole lot of crying. Some days I would get very mad because I just wanted to be home with my baby. I would have to leave her every night because the hospital was not equipped for parents to sleep there. That was the worst feeling in the world. As a matter of fact her lung collapsed in the middle of the night and I was not there for her. This whole time I continued to pump as much milk as I could because a mother’s milk is one of the best things for your baby especially a sick one. Plus it made me feel like I was helping her. She had many ups and downs and the time in the NICU was exactly as they told me it would be, a rollercoaster of emotion. I got to hold her 2 days before her 1 month birthday. That was the best feeling in the hold world. We stayed at the hospital for 3 months and she was released on oxygen and an apnea monitor. I was very happy and very scared. We had many doctors appts. We had weekly appts to the eye doctor because in the NICU she developed a condition in her eyes called ROP. This is common for children on oxygen for a prolonged amount of time. It can be severe enough to cause blindness or require surgery. As a matter of fact Stevie Wonder was a preemie and it was ROP that caused his blindness. Madison still has many appts at 19 months of age but all things considered my daughter is doing great. She is one little fighter. The only real issue she has is chronic lung disease which can improve since lungs still develop for the first seven years. She is an active thriving normal toddler. We don’t know what the future has in store for us as far as her development but I think my little fighter can handle whatever life throws at her. She truly is on of life’s big, little Miracles.