The Day We Met Our Daughter

There were so many things that were on my mind the few weeks leading up to Jocelyn's birthday. Things like coordinating the bed set with the changing table, getting enough clothes, blankets that match the car seat, a Halloween costume, etc. One thought that never crossed my mind was the possibility of having a child with Down Syndrome. We had a few ultra sounds that never showed any physical signs of Down Syndrome. There were no heart abnormalities detected. She did have renal pelvis' that were on the larger side of normal but they stayed within normal limits and did not require any further evaluation. But due to that, we did decide to get the Quad screen to test for any genetic abnormalities. We were not initially going to get the Quad screen because we had already decided that no matter the results, it would not change our decision about the pregnancy. Due to my age, 24 at the time, the chances of having a child with Down Syndrome was very low. I did it just knowing that sometimes renal problems can sometimes occur when there are other genetic abnormalities and since I am in the medical field, I wanted to be thorough. When we got the results back that were negative, I wasn't surprised. I expected them to be negative. I didn't even think otherwise. My mom works with children with disabilities. I have been around kids with disabilities all of my life. I grew up with a couple of kids with disabilities that my mom would care for on occasions. It always seemed like other families had children with disabilities, not mine. The day that she was born, I was induced. We were so excited to finally meet her. It is not that I need to be induced for any medical reasons, but I just was tired of waiting. I had to meet her. My labor was very uneventful and progressed very quickly. After only 5 hours of labor, our baby girl was born. Immediately, she came out screaming and was doing great. Her apgar scores were 8 and 9. They gave her to me and she immediately started nursing like she had been doing it for years. I remember looking at her and thinking that her eyes did look kind of like a down's child. However, just figured it was due to being puffy from the delivery. I didn't even give it a second thought. Then, as the nurse kept doing her assessments, she noticed that her O2 sats kept dropping. She told me that she was going to have her checked out and took her out of the room. I didn't see her for the rest of the day. I was still in denial at that point that anything was wrong. They had said that since the delivery was so quick that she did swallow a lot of fluid and I just chalked it up to that. About an hour or so later, the OB and nursing staff came back in. That is when they changed my life forever. They stated that it appears that she has some characteristics of a child with down syndrome. I just remember hating the fact that they kept saying that she had characteristics. No one ever said, "yes, we are pretty sure she has it." As if some people just have those characteristics but do not actually have the diagnosis. They stated all of them to me but yet they still said there is a chance that she didn't have it. Being that I am in medicine, I know when people are skirting around the issue. Most of the time, we know the answers to a lot of issues before we get the official results. It was almost like they tried to give us some sense of encouragement that the test may come back negative. When, we all knew that they would be positive. Three days after she was born, we got the FISH tests back that were positive for trisomy 21. I immediately broke down. I am not sure why, I guess I still was hanging on to some tiny chance that everyone was wrong. I guess it was just hard finally hearing the diagnosis. They said that due to her low tone, she was having a hard time keeping her air way open. It was only positional. She did have an elevated white count which after a week of CBC's and blood smears, they still didn't have an answer to. So she was treated empirically for 7 days with anti-biotics. Initially to give her nourishment, they placed a NG tube because she was having a hard time taking to a bottle but was fine with nursing. However, my milk was not in to give her enough nutrition. After a few days of practice, she got the bottle feeding down and the NG tube was removed. The last few days were mainly spent in our room, out of the ICU. The day that we brought her home was pretty nerve racking. We still needed to keep her elevated when laying down to help keep her air way open. However, over the next couple of weeks, as she got stronger and bigger, she was able to adjust and breath normally. It took a couple of weeks of to finally accept the fact that she was born with Down Syndrome. I kept telling myself that they were still wrong even though we got the FISH test back which was positive. I still held out hope until we saw the geneticists. For the first two weeks, I would just break down in tears grieving for all the things that she may not experience. I felt sorry for her and our family. It was a very difficult thing to understand. I kept having to tell myself that God gave us this little girl because he knew we were strong enough to take care of her and we had the means as well. One of the most difficult things for me was trying to tell our friends and family about it. It was not like I was embarrassed or ashamed of Jocelyn. I was just having a hard time coming to terms with it that it was difficult to say. "Jocelyn was born with Down Sydrome" were the hardest words for me to say. Even today, it takes me a second. Thankfully, my family was very supportive, as well as Alex, and they were able to let people know so that I didn't have to worry about breaking down every time I talked to someone. After a week or so, I began looking past the diagnosis and began to see a beautiful healthy baby girl. She was just like all other new born babies. Now a days, I have no problem discussing Jocelyn and her diagnosis with anyone. She is a beautiful little girl first who just happens to have a syndrome. I have realized it is nothing that we need to hide. We embrace it and move on. While we may never know how or why this happened, we would not begin to change a thing. We are happy that she is happy and healthy.