Melody is on the medical team. Melody knows an awful lot about labor and delivery as that is what she does for a living, however, it is a whole new ballgame when the medical professional is a patient and the diagnosis is unexpected.
I learned that I was having a baby girl with Down Syndrome when I was about 14 weeks pregnant. I am a Labor and Delivery nurse and I decided to have the testing done because I was 40 and for some reason, I just felt I should. My OB, who I also work with and deliver babies with all the time, said that the new testing was very accurate and although I never did testing with my other pregnancies, I chose to with this one.
I remember seeing my OB’s nurse at a movie (she used to work at the hospital with me and was also one of my best friends) and asking her if my labs were back. She was surprised and said “Are you really worried about the labs?” I wasn’t worried but just anxious to know the results and she just laughed and said “I’m sure everything is fine.”
About a week later, I received a phone call. I was sleeping after a night shift and running kids around all day and finally was able to take a nap. I normally don’t answer my phone when I’m trying to sleep but I did and it was my OB on the other line. I had just woken up so I was a little confused as to why he was calling me. “ Your test results came back and your baby tested positive for trisomy 21.” I pretty much stopped listening to what he had to say. This is pretty sad but I couldn’t remember what trisomy 21 was. I kept thinking and trying to figure out because I kept thinking it was a trisomy that was incompatible with life. So I stopped him finally and asked what it was and he stopped for a minute and said “Down syndrome.” My heart stopped. I asked him what I needed to do next. This is where I was really lucky. He said that as my OB he needed to recommend I speak with a genetic counselor with regards to my options. I thought that this would be someone that would explain Down syndrome to me and what to expect and help me understand the diagnosis. As my friend, he told me that their job was to advise me on more genetic testing and options to end the pregnancy, but he knew that I was not considering that option. So I didn’t see a genetic counselor.
I had to wait for 3 hours until my husband was home to tell him. He was unreachable on his phone. I actually told my kids first, after crying for 2 hours. I can honestly say that I wasn’t worried about the mental aspect of DS. As a nurse, I worried about all the medical complications that were a possibility and I kept thinking I wasn’t the type of mom that could handle all that. I have to work full time and I work nights and I never sleep and I can barely raise the kids I do have! I am not one of those special moms that has all this amazing patience. I stopped crying long enough to tell my children and only my 15 year old daughter understood what I was saying. She said that there were a few children with Down syndrome that went to her high school and she told me about them. My boys could understand that the baby would be different but they were so sweet and said that they would help take care of the baby.
My husband walked in and saw my red puffy face. He was so great and just hugged me and let me cry. He asked about the validity of the tests and I think that he kept thinking I had a different test done because even days later he said that the test could be wrong. The problem was that I could feel that the test was accurate. At our official ultrasound, the ultrasonographer had a son with Down syndrome and was so wonderful in telling me her experience with it and telling me about her story. She pointed out all the special things about Ruby on the ultrasound. It was actually very calming and reassuring. We announced on Facebook about 20 wks pregnant that we were having a baby girl with Down syndrome because we just wanted to let everyone know at the same time so that we wouldn’t have to answer questions over and over and people were so wonderful and supportive.
It was a difficult pregnancy because I didn’t feel the close bond that I did with my other pregnancies. I tried to go buy clothes for her and I would pick things out and then leave them at the store. I didn’t feel like preparing a nursery and I didn’t talk to my belly like I did with my others. I didn’t want a baby shower, but my coworkers, who are my best friends, insisted and really planned a wonderful shower. I didn’t take pictures of myself or write anything down to remember what I experienced. I really regret these things now.
I remember waking up one morning to use the bathroom and feeling her move when I got back into bed. Later that morning I sent my kids off to school, including my new kindergartner, and it was only his 1st week of school. I called my mom and we talking for a long time and I remember thinking that I hadn’t felt the baby move very much. I went to pick my son up from kindergarten thinking “ I better count her movements when I get back.” I got back home and ate and drank and laid down being a good Labor and Delivery nurse and planned to count movements. Thirty minutes passed and I still hadn’t felt anything. I started texting my doctor’s nurse, one of my best friends, asking about coming in to be monitored and that I was sure it was nothing but I just wanted to be sure. When I arrived, she hooked me up to the monitor and unfortunately I know exactly how to read the fetal tracing. We had a heartbeat which was good but it wasn’t fluctuating, and that’s not good. She watched for about 30 minutes and then called the doctor for an ultrasound. By this time, I was starting to freak out because I knew that it wasn’t a good sign. During the ultrasound, we did not see any fetal movement. This is an omnious sign. I was 36 weeks, and they called the doctor and said they were going to do a cesarean section. I had already had 2 c-sections so that was my plan, but I was not planning for this at 36 weeks. I called my husband on the way to the hospital and told him that they were going to get me ready for a c-section. My husband barely made it before they took me to the OR. Ruby needed some resuscitation but responded well. I will never forget seeing her head on the warmer. That was all I could see while I was being operated on. Even then I could tell she was a red head.
I fell in love with her immediately. I held her in my arms and saw that sweet face and all the bonding I didn’t feel before suddenly came. I could only hold her for a little because she needed to go to the nursery to check her blood sugar and to watch her breathing. Her sugar was ridiculously low. My husband stayed with her in the nursery the whole time because I wanted someone to be with her. She had to be flown to another hospital because her blood sugar kept dropping. I think that was the hardest thing to have her taken away from me after I finally felt a bond with her. Her siblings were able to see her being flown out and the next day my husband was able to face time from the hospital while he held her. I spent 5 days in the hospital because of a difficult recovery and the day I was able to leave my husband drove me to her. I just cried because I was so afraid she wouldn’t feel love because I wasn’t able to hold her all the time. She was in the hospital for 10 days total and we finally were able to bring her home. What a joyous homecoming. It wasn’t easy with all the work it required but I was so happy to hold her and look at her and have all of her family love on her.
I was so very grateful to have a prenatal diagnosis. I was able to go through all the emotions and coping of learning I was having a special child with Down syndrome, that the minute she was placed in my arms, I didn’t even care. I was just happy that she was mine and she was here safely and that I was her mother. I always say that is I knew then what I know now, I don’t think I would cry. It isn’t easy but there is a lot of happiness and joy in our home, all because of that sweet Ruby.
Melody is a labor and delivery nurse by night and mom and hiker by day. She loves hiking and will do just about anything for a stamp in her national parks passport. Melody is working on her goal of visiting every national park and monument/historic site in the US with her 4 children and husband. She also loves winning stuff on the radio and sleeping because she is always sleep deprived. You can follow the family’s progress on Instagram @downwithadventure.