As you can tell by the title, this post might be a little depressing. Perhaps "aftermath" is too dramatic of a word, but I just wanted to share about the hours and days after Joy's birth and passing. I still maintain that the days after her diagnosis were the hardest part of our experience with a fatal birth defect, but this was a close second. Some of this might be hard to read (and some of it is hard to reflect on and put in to words!), but I think it's important to be honest about the hard parts. I also know that this might be read by others who are expecting a child with anencephaly and so I want it to be an honest reflection of our experience.
So when I left off, Joy had just been born. She quickly passed away, and that started the clock for the two hours we had with her before she was to be taken away for her organ donation procedure. I had such a mixture of emotions immediately after Joy was born. Of course there was sadness, but there was also a sense of relief. Don't judge me yet - keep reading! It had been a long and difficult five months, both physically and emotionally. I had done all I could over those months for my baby - keeping her alive, preparing for her birth, and trying to be a good mom to her big brother in the midst of emotional turmoil. And after she was born, there was a sense of relief at having completed my task. I had done everything I could do for her and had done it to the best of my ability. It almost goes without saying that I would have changed the outcome if I could, but I couldn't. I'm sure the hormone surge from my natural birth helped, but immediately after her birth I was very calm and almost able to enjoy being with her. I was proud of myself and of my little girl! It was actually kind of strange, because everyone around me was in tears, but at this point I was just kind of serene and soaking it all in.
As you saw in the pictures, we spent most of the time together with our parents and siblings and Joy. We also had a plethora of handprint and footprint kits. We got a couple sets of footprints on paper, a plaster mold of her footprint, and then a handprint on a ceramic bulb that I later had glazed. We had several other options of memorabilia, but I didn't want to spend all of my brief time with her trying to make physical memories. No matter how many hand and foot prints and pictures I had, it would never be enough, so I decided to concentrate on being with her while we could. In retrospect, I still agree with that decision. I treasure the prints I do have, but having more wouldn't do anything more to assuage my grief.
A few people have asked me if I have any regrets from my time with Joy or anything I would do differently. I only have one small regret. In my preparations for her birth, I read a suggestion about choosing a scented lotion to apply to your baby so that you could later associate that smell with your child. I loved the idea, because as my sister can attest, I have an excellent sense of smell and have a lot of memories associated with scent. (We even play a game called "What does that smell remind you of?") I spent a lot of time sniffing lotion and chose one that I thought was just right. But then when the time came, I decided I didn't want to put it on her...her skin was so soft and perfect and I didn't want to change her natural smell or feel. But now three years removed, I wish I had a scent to associate with her. I put her blankets in a plastic bag, but the smell has faded. I still have the lotion I picked for her, but I do wish I had applied it on her soft little arms and legs.
As 1:00 AM neared, our families said goodbye to us, and more importantly, to Joy. It was the last time they would see her this side of heaven. We spent a few moments with her alone, and then handed her off to our Nurse Joan* and the Organ Transplant Coordinator Alice* who carried her back to the operating room. I'm planning a separate post later about our organ donation experience from start to finish, so I will cover this in more detail then. I don't remember exactly how long she was gone - maybe an hour or two? We tried our best to nap then, but it was hard to fall asleep.
After her surgery, Alice carried her back to us. It's a small detail, but I really appreciated the fact that they carried her in their arms to and from us, like the precious bundle she was, instead of wheeling her around in a bassinet or gurney. It made me feel like they really cared for her as a person, not just an unfortunate incident or a source of donated tissue. Anyway, they had bathed her and dressed her in the little white preemie outfit I had purchased for her and wrapped her up in her blanket. They had told us that part of the procedure involved cooling her body down rapidly to preserve the tissue (I think - I'm a little fuzzy on the details). All I know is that when she was handed back to us, she was very cold and stiff and her skin was very dark. Honestly, it was horrible. Right after she was born and passed, though her face was dark, the rest of her skin was soft and healthy looking and she seemed like a peacefully sleeping baby. After her surgery, she just seemed cold and dead. Which of course she was, but now her appearance matched the reality and it was hard to deal with.
Eric crawled up in the bed with us and we snuggled her close, crying and talking and just trying to soak in the last moments that we had with her. We listened to a few songs that we thought of as "her" songs. At this point, we were absolutely exhausted, having been awake for nearly 24 hours. We had made arrangements with the funeral home that we could call them when Joy had passed when we were ready to have them pick her up. (Another small detail, but somehow I hated the idea of her sitting in the hospital morgue and would rather pass her directly to the funeral director. He was recommended by our pastor and was very kind and caring.) We started to doze off, so we carefully placed her in the little newborn bassinet next to her bed and decided to take a brief nap. A big mess ensued here between the nurses and the funeral home and us and what was happening and I don't even really understand or remember it, but thankfully Eric took care of it and the funeral home was very gracious about the whole thing.
After our quick nap, I was somewhat refreshed. We found out that the funeral director was on his way, so we prepared to say our goodbyes to Joy. I am glad I had that time to recharge briefly before it was time to say goodbye to Joy. We listened to her song one more time, snuggled and kissed her and told her we loved her and we'd see her again one day. It felt so inadequate at the time - it's one of those moments in life that is surreal and hard and you just don't know what is right so you do the best you can. And then Mike, the funeral director arrived, impeccably dressed in a suit at 6 AM, and we carefully handed our little pink bundle to him. He treated as precious cargo, but it was still so very hard to hand your baby to a virtual stranger, knowing it is the last time you would ever hold her.
And so that was that. Just twenty-four hours before, I had woken in my bed at home, with Joy alive and kicking inside of me. Now we sat alone in the room where I had delivered her, having just handed her still body to someone to prepare her for burial. Talk about a whirlwind!
Shortly after, we were transferred to a postpartum room. The hospital graciously put us on a surgical recovery floor instead of on the unit with all those brand new babies. Physically I felt fine, so I was discharged from the hospital about twelve hours after Joy was born. There just really wasn't a reason to stay any longer. But what I can tell you is there aren't too many feelings worse than leaving a hospital, having just given birth, but without your baby. It was awful! (Looking back, I think that's why I was so set on staying at the hospital the whole time Noah was in the NICU. I did leave once or twice to go to Target or to get some food, but for most of the week, I just stayed camped out in the hospital. I was not mentally willing to come from that hospital without a baby again.) And so Eric and I headed home on a hot Saturday afternoon, back to one curly redhead but without another.
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