I've read other blogs of Moms of Down Syndrome kiddos and have found a lot of inspiration in their birth stories. Everyone receives the news differently and I wondered why I had never thought to write out my experience.
I suppose our story begins at 20 weeks gestation. We went in for THE ultrasound. You know, the one to find out if we were having a girl or a boy. That's all that was on our minds. My doctor never thought I would be able to get pregnant, so there was some care taken in the very beginning, but I was having a wonderful pregnancy. The ultrasound technician excitedly told us we were having a girl. Looking back, she was so wise to give us that moment. Kyle texted to my mom that we were having "a guerrilla" thanks to auto correct! The thought never occurred to me there could ever be any bad news. The technician stated I must be really uncomfortable with a full bladder and suggested I go to the bathroom. I was still too naive to be scared. I came back and she explained there were a few things that she saw that concerned her. It seemed like there was an excess amount of fluid on her brain. She wanted the Dr. to take a look. Within a few minutes we were whisked away into an exam room and visiting with my Dr. He told us we could be looking at hydrocephalus. My Dr. is a realist. He didn't sugar coat anything. He explained some of the implications of hydrocephalus: immediate surgery upon delivery, developmental delays, etc. Luckily (and by luck I mean by the grace of God), we were scheduled to see the specialist the very next day for a 3D ultrasound that would give us more information.
I held it together the entire time we were in the Dr.'s office, but the moment we stepped outside and the fresh air hit my face the tears began to fall. I thought I had composed myself enough to call my Mom. I dialed and felt the tears well up in my eyes. I got a weak "hi' out but couldn't keep it together. Kyle shared the news for me. Kyle and I held each other and cried and I gave myself permission to cry as much as I wanted that day. It's hard to explain, but I wasn't necessarily crying because I was disappointed. I was just so sad for my baby girl. Life would not be easy, and you never want to think of your children struggling.
I cried a lot that night, giving myself permission to do just that. I must have cried it all out of my system because from that point forward, I didn't need to cry. Tomorrow was a new day, we would meet the specialist, and we knew this baby girl was a blessing regardless of what we learned. We prayed and knew all of our family and friends were holding us up in prayer. On the way to the specialist's office, I felt everyone's prayers. I haven't ever experienced anything like that before. It was a supernatural peace. I was calm.
We learned Maddie did have excess fluid, but not enough to diagnose hydrocephalus. We weren't sure what that meant and the specialist wanted to continue to see us every 4 weeks.
Each time we went in for an appointment her fluid levels were less and less until they were finally within normal range! Then, at 34 weeks, we discovered Maddie had intrauterine growth restriction. She stopped growing at 30 weeks gestation. We went in for non-stress tests twice a week for a couple of weeks. Then we had to be induced. The evening before we were scheduled to go in to be induced I began bleeding. We just so happened to be at the hospital getting a tour so we went to the triage room. They set up all of the monitors and after a few minutes Maddie had fetal heart failure. She quickly recovered but they wanted to monitor us throughout the night.
The next morning my Dr. came and thought we should definitely go in for a C-section right away. Maddie was born at 10:17 that morning. She had the tiniest kitten cry and labored breathing. She was put under oxygen for the first 21 hours.
Having had the C-section, I was stuck in bed for the first 6 hours. Kyle stayed with Maddie. He came in to the room, followed by our pediatrician. Again, I was too naive to think anything but how wonderful it was to meet Maddie's Dr. She introduced herself and with the most compassionate tone began to tell me that she was 90% certain Maddie had Down Syndrome. She listed several key indicators: almond eyes, pinky fingers that turned inward, the bridge of her nose, something about her chest, and extra space between her big toes.
I was shocked...but I wasn't devastated. The only thing I knew about Down Syndrome was from a time in high school when I volunteered to help with the Special Olympics. It was a track meet and I was assigned to be a hugger when the contestants finished the race. That was the most rewarding volunteer experience I had ever had! They were so happy, their joy just spilled over.
With having that knowledge, there was a place in my heart that was actually glad. There was a reason God had entrusted her to our care. I knew she would bring us so much happiness and we would learn from her things we could never teach. I also had no idea what the medical implications of having DS could bring. We have been so fortunate to have a healthy baby girl. Although she has hypothyroidism, subglotic stenosis II (a tiny esophagus), a very tiny hole in her heart, and she's far-sighted, she has been remarkably healthy, especially when you consider all of the potential medical issues having an extra chromosome could cause. In my heart, I had already worked through the emotions of having a child that was different back on that day at 20 weeks gestation when we thought we were facing hydrocephalus. I had a different perspective, and after all we had been through up until this point,
Down Syndrome...was a gift.