Madeline Rose was born in September 2011. The pregnancy had been perfect without in health concerns for me. The doctors had done some extra ultrasounds on Madeline because of some fluid in the kidneys and possible fluid around the heart but all were given the okay stamp. We went to the hospital expecting to have our beautiful daughter stay a day or so and then go home and enjoy our newest addition. The delivery couldn't have gone smoother but when the took her over to clean her up the nurses took a long time cleaning her up. We have one son already and had an idea of how things were supposed to go. They finally brought our daughter over to us, and although she was adorable with a crazy dark hair and her round little face I couldn't help thinking that she looked different than I had expected. The moment passes and I settled into holding my precious little girl. We called our parents and let them know we had a beautiful little girl 5 lbs 14 oz and 18.5 inches long with a lot of dark crazy hair.
We had thirty minutes of bliss with our little girl until the pediatrician came in. We knew something wasn't right for a pediatrician to be visiting at 10:30 at night. He continued to inform us that he was 99% sure that our daughter had Down syndrome. He pointed out the certain features such as the lowered bridge in her nose, a floppy ear, a roll of skin on her neck, her fingers, her toes. We didn't have to have him point everything out, we knew he was right as soon as he said it. My husband saw it the moment she was born but was hoping it was just something from the birth and not a permanent sentence. We didn't even have time to react. As soon as he left, another nurse came in to take us to the mother's floor and to take Madeline to the NICU to check her blood sugars and give her a more thorough evaluation.
It was an hour of nurses coming in and out, signing papers, and being given directions before we had any time to process what we were told. I just kept thinking 'it will be okay', 'she will be amazing', 'everything will work out.' I knew that if I broke down then it would be too much to handle. I can't honestly say that I just changed mind switches without a backwards glance. We had lost the daughter we were expecting. I would be lying if I said we didn't cry. We did, a lot, over the next few weeks. We were all of a sudden overwhelmed with information. We learned she had a heart condition associated with children with Down syndrome called and AV Canal Defect. Put simply the middle wall that separates the 4 chambers of the heart doesn't form together leaving one massive hole in the center with no actual separation of the oxygen rich and oxygen poor blood. Although not life threatening at the time it would require open heart surgery. We were suddenly scheduling appointments with all sorts of specialists and she wasn't even a week old. Those first few weeks of her life are a daze to me. A mix of so many emotions it is explainable. The stress, the worry, the grief, the fear, doubt, anger, sadness. They all made an appearance at some time.
I am glad to say that those feelings only lasted a short time. They were replaced with determination and love for our amazing daughter. Our little girl who is so calm and peaceful. Our little girl who has already proved that just because something is written in a book doesn't mean it is a guarantee. We have learned to now worry about the 'what ifs' and the 'whens'. But instead take it day by day. Celebrate her accomplishments and help in what ever way we can to meet her next goal on her own time in her own way. We have learned that just because she has Down syndrome doesn't mean she isn't capable of doing everything she want to do.
To read about her heart surgery click
here
