When we found about Sydney Grace having Trisomy 18 at my 19 week ultrasound and about her severe heart defects, we started planning. We did not want to have any regrets. We talked to all the doctors about our wishes. We talked to the funeral home about the service. We planned for our friend, a professional photographer, to take pictures at the hospital. We bought Sydney a christening gown to be buried in, and we even had a few other outfits for her to wear just in case she survived a few hours. We thought we had everything planned and ready to go whenever Sydney decided to be born.
However, Sydney decided to surprise us all. She was not ready to leave us right when she was born as we thought. We never imagined we would actually be able to take her home with us. Most of the plans we had made before she was born were now changed. And we were so happy to change all our preparations. We had to buy clothes, diapers, wipes, a bassinet, and all the things we never thought we would need. Let me just say, Sydney Grace had every preemie outfit from all the stores in this county.
When we did bring her home, I think my head went out the window. We all were so excited to have Sydney Grace home, all we did was hold her. She was rarely put down. As a matter of fact, the last few days of her life, she would get so upset if she was put in her bassinet or glider. We spoiled her rotten, but she deserved it.
Here is my big regret... We never took video of Sydney once we got home from the hospital. What was I thinking??
I was looking at the videos from the hospital this morning on my computer for the first time. It occurred to me that there was no video of her at home, at all. I physically felt ill. I was so upset with myself. When Rafe was born, we have so much video of him the first few weeks. From his first bath, to changing diapers, to laying in his bassinet, to just being held. Why did we not do this with Sydney? We knew that we probably would not have her for long, yet I never once thought about videoing. Sydney took her first and last bath in a little tub about six hours before she passed away. The only thing I have is a picture from my phone camera. She was so cute in it too. She did not cry, like her big brother Rafe did with his first bath. She was so relaxed. She had her little legs crossed and propped up on the side of the tub.
I guess the reason why I am so upset is that we only had her for 20 days, which I realize is a wonderful gift from God, but I am really afraid I will forget things. All her little sounds and cries, her expressions, the way she would do her mouth when she was hungry, the way she would put her hands to her face, the way she would move her arms and legs... Basically everything that photos will not pick.
I realize that some people will say that I should be thankful for all the memories I do have. Aly took approximately 3000 wonderful photos. I have all her clothes and blankets to smell. I have her foot prints, some of her hair and many other things. Most importantly I had twenty days more that most T18 parents have with their babies. And I am extremely thankful and grateful to God for letting me have all these memories. That being said, when I found out about Sydney, from the very beginning I would say over and over, "I do not want to have any regrets," but unfortunately I do.
4 months ago