After we found out Stella's diagnosis, we were in a state of shock. We couldn't believe what was happening and that is was happening to us. We had never heard of anyone going through with a pregnancy that would outcome with a baby that would die. It was a no-brainer for us that we would go through with it, but we were unprepared with how to deal with the situation. I am a self-proclaimed nerd. When something new comes into my life, I research it until I feel I have mastered the subject. It is the way I have always been. I poured over books from the library and visited more websites than I can remember. What I remember seeing, or not seeing rather, is what I was going through. Oh, there was a site that had similar stories of women going on with their pregnancy when their baby was diagnosed with Anencephaly, but it wasn't really all that helpful. It was 'nice' to realize that we weren't alone in our journey, that others had gone through it before us. What the sites didn't do, and what we were looking for, was what did we do in the meantime? What should we do while we wait for her to be born, or God-forbid, die in the womb at any moment? Those sites had a few suggestions which got the ball rolling for me to do a lot. I found myself making lists, another thing that I always do, to determine what I wanted done before Stella's arrival. I became so determined to give her everything that any other child of mind would have. I had tunnel vision and searched the Internet and books for countless ideas of ways to memorialize Stella.
The first thing I decided on was that Stella should have the most beautiful dress any little baby girl could ever have. I then realized that, because of her condition, I would also have to find the most beautiful bonnet, or hat for her too. Every store in town was searched for the perfect dress but I ended up finding a dainty, lacy, dress and bonnet at a consignment sale. I buy all of Eliot's clothes at those sales so it seemed only fitting that I would find hers there too. I found pale pink tights, lacy pink shoes, a pink hand-made knit hat and booties as well at the sales. I felt that God had put all of these beautiful things right there for me to find. I wanted the hat and booties because I had taken a picture of Eliot in a blue hat and booties and, of course, I felt that Stella deserved the same. Another piece of clothing she had was a onsie that Eliot had decorated before we knew she would be a girl. He drew all over the front and we wrote on the back "Welcome to the world. Love, Big Brother Eliot". He was so proud of that onsie and it was the first thing that she wore after she was born. I had a blanket that my Grandma Wiese had knitted for me when I was a baby and I had always wanted to give it to my daughter. My awesome cousin found an in-law family member of hers who could knit and had two small versions made for me. One of the blankets went with Stella in her casket and the other we have here, just for her. It made me feel so much better to be able to give a blanket to her for her very own. The hardest thing for us to buy was the outfit for Stella to wear at her funeral. Luckily we went shopping around Easter time so there were plenty of little white dresses for us to choose from. Jordec found the perfect one and he made the comment that he wanted her to wear white because it reminded him of the wedding dress she would never wear and that he wouldn't get to walk her down the aisle. Imagine that conversation in the middle of Target. I am still surprised to this day that I didn't break down and bawl right there. I had never even thought about that before but obviously Jordec had. It was just another reminder of her future that we lost with Stella's diagnosis. My Mom and I made a special blanket for Eliot. My Mom embroidered 'Eliot & Stella' with a heart under their names. He loves it and calls it his Stella blanket. We gave it to him the day Stella was born as a gift from Stella.
I wanted many things to have around after Stella passed to help keep her memory alive. I had, and still do to some extent, a fear that she would be born, die and then people would forget about her. I thought that if I had lots of stuff around, it would be harder for people to forget her. The first thing I wanted was an engraved locket that I could put a picture in and, if she had hair, a lock of her hair. I also wanted a special box to put her hair in and finger nail clippings. That may sound odd to people but I just really wanted pieces of her to always be close in case I wanted to touch a physical part of her. I received a gift of a fingerprint charm kit to make a necklace out of later. I had a bracelet engraved for her to wear with her name on it from Jordec and I, and a delicate angel charm. Another physical thing that I wanted of Stella's was her heartbeat. I had a bear made at build-a-bear and had a recording of her heartbeat put in it. I can hug that bear, with an embroidered pink shirt with Stella written across it in my Grandma Schaecher's blue, and hear her heartbeat. I love to hear that thump thump, it's so alive.
We arranged for a priest to come and do the baptism in the OR and he gave a wonderful prayer before we went to the OR. We had Stella blessed a few times while she was in the womb and we had a rosary blessed for her to take with her in the casket. We got in contact with the hospital and got everything set up there with a committee of people to help make Stella's life as great at they could for her, and us. I must have emailed them at least a dozen times. I found a suggestion on one of the websites for a birth plan in these situations as well. My best advice is to leave nothing open to assumption. We requested a CPAP machine to get Stella to start breathing if needed and I believe that was the difference between her breathing for two hours and not breathing at all. I think our plan was about three pages long. I figured I would ask for as much as possible for what I wanted and, thankfully, everything we requested the hospital was able to do. I can never thank them enough for being so compassionate towards us all. We met with the group of people a few weeks before Stella was due to make sure we had everything set up the best way we could for her arrival. I highly recommend getting in touch with the hospital early on to determine if they can accommodate what you desire. If not, go elsewhere if possible, or try to get someone that can help you get what you need. If anyone wants me to post our birth plan, just comment so on a post and I will do that.
We contacted Now I Lay Me Down To Sleep (NILMDTS), which is an amazing organization that has professional photographers who take pictures of babies that are expected to die. Our photographer was a wonderful woman named Angel and her pictures were beautiful. We also had a photographer who was affiliated with NILMDTS who did a maternity photo shoot for us a month before Stella was born. We weren't sure if Stella was going to be born alive and we wanted to have pictures taken while she was alive. Even though you couldn't see her in the pictures (obviously), it meant a lot to us to know that she was alive in those pictures, kicking away. We also arranged for my cousin to take pictures too. We figured we could never have too many pictures and we didn't want to miss an single moment of the day.
We had some family bring by a Stella de Oro lily for us and planted it our yard for us. It bloomed for the first time on the day Stella was born, one perfect flower. We discovered Stella's name everywhere. Jordec started drinking Stella Artois beer, which we called Stella beer. We received a blanket and a lamb from Prenatal Partners for Life. They also sent us a wonderful CD with a song that explained exactly what we were going through. I put the lyrics in a previous blog. I was so worried that we wouldn't receive the typical things like blankets, so my mother-in-law got a us a beautiful blanket that I sleep with sometimes when I really miss Stella.
Every day I was working to get something done before Stella arrived. I felt that this was the way that I could provide and parent her. I knew that during her short life we would just be loving her so I used this time to get all of the 'stuff' ready for us. As Stella had a high chance of being born early, I didn't want to have to worry about something not being done. I am a planner by nature and I like to know what is going to happen when. With Stella possibly coming early, possibly dying in the womb, and not knowing how long she would live, I was forced to let go of that control and so by planning the 'stuff', I felt that I could take back some of the control in the situation.
We started planning her visitation and funeral before she was born. I knew that I would be recovering from a surgery as well as the death of Stella and I didn't think I would be able to make those decisions at that point. That was one of the best things we could have done because the time between Stella's death and her funeral was a week and it was still packed with recover and plenty of stuff to do. I must have worked on the program for her funeral everyday for two months. I kept tweaking it and adding things, then taking other things away. I just wanted it to be perfect. I didn't want to have any regrets about anything. I had my Mom talk to the funeral home because that is just one thing that I didn't think I could do. It made it too real and I wasn't ready to talk to them until the time came closer to Stella's arrival. Mom talked to them and I emailed a few times. We got the basics figured out pretty easily. It was hard to see the small casket online but that was nothing compared to when we saw it for the first time in person. We had to guess how big Stella would be to figure out what size to get. That was really depressing and something I hope I never have to do again. I then also had to email the priest, figure out songs, readings, and who would do what for the ceremonies. In a lot of ways it was like planning a really sad wedding. Almost all of the same elements were there: ceremony, flowers, reception, food, etc. We picked out and ordered flowers to put on her casket at the grave site and to go on either side of her casket during the ceremonies; we found a different flower with Stella in the name. My nephew and us had silicone bracelets made with her name on one side and 'Remember' on the other side. We handed them out at the funeral for people to wear. Another nephew arranged for pink and white balloons to be released at the grave site after the ceremony there. I also made a CD with many songs that helped me through and we played it at Stella's visitation. I now listen to that CD often and it makes me think of Stella and it is still very helpful.
All of these preparations we did might seem a bit much to some, but I am so grateful I did them. I got to parent Stella by preparing for her arrival as best as I could. When she arrived, all I had to do was love her. The decisions were already made so there wasn't anything extra to stress about. The hospital knew what we wanted so they didn't have to ask me questions the whole time, my family knew what we wanted so they were helpful instead of bothering, Jordec and I knew what we wanted too. I have no regrets about Stella's arrival. She was welcomed with joy and love. She died surrounded by love. We have tons of pictures to remember her. I am as happy as I can be about the situation. I highly recommend preparing in some regard as it does give you that sense of control in an out-of-control situation. Feel free to comment with any questions. Good luck and God bless.
