At 4:00 AM on Tuesday, August 27th, I awoke with a start as my water broke. On the (usually 1 hour) drive to the hospital with the kids, the contractions got closer together until they were around 2 minutes apart when we arrived at about 5:45. It was as if Abigail had said, “now you have all the plans made, so you are ready for me to come.” God was showing us that no matter how well we planned He is still in control.
As they put in my IV, I started explaining that “this baby has Trisomy 18” and describing what that means. The nurse would listen and then say, “tell me more”. The neonatologists had been planning to meet with all the staff before September 4th to tell them about our birth plan so everything would go smoothly. Unfortunately, we didn’t have that luxury, so it had to done on the fly. Steve had brought a copy of the birth plan, which they quickly copied and distributed. Our OB had also mentioned about the Trisomy 18 on the phone before he got in, and everyone did an amazing job of communicating things in a short time. The suddenness and flurry of activity really distracted me from concerns about Abigail’s health as we were worried about the kids, communicating our birth plan, and my ever-present sciatica, which was finally relieved by the spinal block.
In recovery, they put her on my chest, skin to skin, along with warm blankets, and she really began to pink up. Within a few minutes, they brought the kids in, and the hospital photographer came in to take pictures. We dressed Abigail up in an outfit and they took an entire roll of film of her, instead of the usual 3 photos. She wasn’t even cleaned up very well, but we weren’t sure how much time we would have. Then I held her again, and the whole family gathered around the bed to get some family pictures. This all took place in the recovery room before 10:00 am. The entire family got to hold her that day; including both of the kids.
We needed to decide how she would be most comfortable during the time she had left. We talked to our pediatrician, who is an expert on palliative (comfort) care, about it, and she explained that if we removed the IV, Abigail would eventually get dehydrated, which would not be uncomfortable. Her body would create endorphins and she would eventually slip into a coma-like state and just go to sleep. If we kept the IV in, they would have to move to a new site in 3 days anyway, and the IV’s would have to keep being moved; resulting in pain and discomfort that wouldn’t fix her problems. We decided that removing the IV was the best thing for Abigail’s comfort.
That night, we stayed up until after midnight, holding her, afraid to go to sleep since she started having frequent apnea episodes (very common for Trisomy 18 babies) where she would just forget to breath for awhile, turn blue, then she would start to breathe again. These episodes were not uncomfortable; she appeared to be sleeping and then would suddenly wake up with a cough or sneeze and start breathing again. We learned that she had more trouble when lying on her back, so we held her on her side.
The next day, we were elated that she was still with us. God had already given us an entire day, now we were getting more! The nurse removed the IV from Abigail; she had a large splint on the arm and her hand was covered up. After it was removed, Abigail almost immediately rubbed her hands together like she was so glad to have both hands free again!
Then, the kids (and adults) got to hold her again, without the IV line to tangle things up. Boy did everyone enjoy that, and Sarah really got tickled holding her. Nathan would tell us all about her while he held her: “she’s trying to look at me;” “she says, is that my big brother that used to say hello Abigail?” And cousin Conner looked so pleased to be holding her. (He couldn’t say Abigail for some reason, so he called her baby Alligator). Indeed, Wednesday was Abigail’s strongest day, and it was the most normal day. That is, all the family was there; the kids were playing with their Thomas engines, there was a lot of chaos and commotion. It was truly a joyful day.
After almost everyone left, I was napping when Steve and Grandma woke me up to tell me that Abigail had turned blue for quite a while and that she may be getting ready to go. I held her for awhile and cried and said goodbye and told her it was OK if it was time for her to go to be with Jesus; she didn’t have to fight to come back if it was getting too hard. But Abigail wasn’t ready to go yet. She came back. But I was glad to discover that I really was OK with letting her go, and that I would be OK if I were holding her when she did. I had hoped I would be that way by evening, because I had really wanted to get her through Tuesday night so we could have the bath, etc. on Wednesday, but once those things were done, I wanted to be ready to let her go. And it turned out that’s how I felt. That also made it easier at night, since we were not so afraid to sleep and possibly awaken and find her gone.
By Thursday morning, it was clear that she was getting weaker, since she was having more apnea episodes and was not crying as loudly or frequently. We decided that we didn’t want another chaotic day like the previous one. The first reason was to keep from wearing her out with all the commotion. Another reason was that she was having more frequent blue episodes. We were getting used to them, but others would probably get quite alarmed and we didn’t want to have a crowd in there when she had another one. The last reason was that the night before was so peaceful when we thought she might die, and we wanted it to be peaceful like that when she did, so we wanted to limit visitors to give her that opportunity. So for Thursday and Friday, things were very calm in the room, and we focused all our attention on holding, loving, and caring for Abigail.
On several occasions, Abigail had apnea episodes lasting up to 10 minutes, and we thought it was the end several times. But by this time we were truly at peace and ready to let her go when it was time. We began to be careful not to try to revive her during an episode; we wanted to let her and God decide when it was time to go, not us. We were totally amazed when she made it to Saturday morning.
Saturday afternoon, we got to show off our pride and joy to one dear family from our church who came to visit and bring food. That night, as on the other nights, we took turns holding Abigail through the night. Around 1:00 AM Sunday, September 1st, Steve said, “I think she’s gone.” So he gave her to me and I held her for a few minutes and I said, “Yes, I think you’re right.” We were both relieved that she had gone to be with Jesus and that she had gone so peacefully. Steve and I set out to make hand and foot castings of Abigail. It was a cool evening, and we had the windows open. It was very quiet and pleasant, with the sounds of the crickets outside the window. Steve got the casting kit ready, while I undressed Abigail, changed her diaper, and cleaned her up. We both commented how she really didn’t need a diaper, but it’s only right for a baby to have a diaper on. I also got to look her over and see once again just how beautiful she was, from head to toe. As we did this, we talked a little quietly and calmly, but mostly were silent. I remember kissing Abigail several times, and thinking that I didn’t kiss her enough before. We then looked through her clothes to pick the outfit to bury her in. After getting her dressed, we took several photos, then wrapped her in her blanket and took a couple more.
We waited 2 weeks to have her memorial service – a celebration of her eternal life – so we could be sure to have everything just how we wanted it. We carefully selected the hymns to sing, scriptures to read, poetry, and the message that Steve would present. We also prepared a slide show of Abigail’s photos set to Twila Paris’ “Visitor from Heaven”. It was truly an uplifting service; emotional, but happy, as we rejoiced with Abigail on her new perfect body and eternal life with Jesus. We were so proud to share our precious gift with our friends and loved ones.
Epilogue: June 2004
I am now much deeper, much kinder, and even much more joyful than I was before having Abigail. And I am thankful to God for this experience and all it has taught me. But the road to where I am today was very long and very hard. After the initial shock and elation of meeting my daughter wore off, my real grief journey began.
I have described it best in The Journey, which compares grief to a long trek across a huge mountain range. My Grief Journal recounts what my life has been like since saying goodbye to Abigail: the many ups and downs I have experienced as my heart is slowly healing.
If you are here as a friend, your support during the "after" part of the journey will be the most important gift you can give.
And if you are just beginning this difficult journey yourself, I am here to tell you that there IS joy after grief.
More joy than you can imagine.
June 22, 2004