A Trisomy 18 Journey - Abigail's Story Continued

Abigail's Story - Birth and Life

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.

Meeting Abigail at last

Next thing I knew, they were getting ready to operate, Steve was there, and the nurse came in to take pictures. They said, “they’ve made the incision,” and I said wow, already. Once she was born, there was very little noise or activity. They weren’t really working on her, and they called Steve over to her. I couldn’t hear, but they had told him that she wasn’t breathing (she had an Apgar of 1) and they wrapped her up and gave her to him. He brought her over to me and they quickly unstrapped my hand. I asked him what was going on, and he said, “she has a heartbeat but she’s not breathing.” So I touched her face and said, “poor little thing” and talked to her, telling her we loved her. I didn’t even cry; it was all happening so fast. We figured she would live a couple of minutes and that would be all. But while Steve was holding her and we were touching her and talking to her, she started to breathe. She even tried to cry. After almost 30 minutes, it was evident she was breathing and seemed to be doing ok, so they weighed and measured her. She was 4 pounds, 2 ounces and 17 1 / 2 inches long. Then they took her footprints and Steve followed me to recovery carrying Abigail.

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.

Deciding what "comfort care" really means

A little later, we had to decide how to feed her, and we decided to give her an IV initially to help her blood sugar, and to put in an NG tube for feeding. They took her to the NICU to put them in. It seemed to take quite awhile, so Steve went to see why. When he got to the NICU, they motioned him in and told him they had put in the IV, but were having trouble with the NG tube. It kept coming back out of her mouth or her nose. Steve said he told them, “esophageal atresia”, and the doctor asked if they could xray her to be sure. Steve said OK. It confirmed the atresia (the esophagus did not connect to her stomach). We felt that the atresia was God’s way of telling us that she was not going to be one of the exceptions that live longer. God had created her, and she was not able to eat. We did not decide that, God did. And so, we accepted Abigail the way God made her and decided to love her, hold her, and make her as comfortable as we could until she went home to Jesus.

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.

Our most joyful day with Abigail

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!

Nathan washing Abigail

Then it was time for the long-awaited bath that we had promised the kids! The nurse put the kids on the bed with Abigail and let them help wash her. What a chaotic, but wonderful time! We all got some terrific memories, and we got some really good close-up pictures of our beautiful Abigail. That whole scene was so joyful that it was much like a normal visit with a healthy baby. We treasure that memory. Afterwards, the kids got to lie next to her and look her over up close; many more wonderful photos were taken at that time.

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.

Ready to say goodbye

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.

Nathan listening to Abigail's heart

The nursing staff was very sensitive to our situation the whole time and did an incredible job of caring for us. I will never forget how attentively they listened to our wishes and how hard they tried to accommodate them. They placed us in a Labor and Delivery suite, not normally used for C-sections, at the end of the hall so we wouldn’t have to hear the other babies being born. They made special efforts to watch over Abigail and to involve our kids in so many activities: the bath, holding her, listening with the stethoscope. They were so important in creating a lot of wonderful, cherished memories of 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.

Going home

Going home!

We had not had going home as a goal, but it was certainly much nicer to hold her as I left the hospital, just like I did with my other kids. I was overwhelmed and started crying when I said, “we’re taking her home!” It was a cool, sunny, beautiful day, so appropriate for the joy of taking her home. When we got outside and were waiting for Steve to get the car, there was a light breeze blowing. I could tell Abigail was feeling it, too, that it felt different from what she had felt before.

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.

Cousin Conner adoring Abigail

We are so thankful to God for the blessing He gave us in Abigail, and for the 5 wonderful days we got to spend with her. We got to say hello, hold her, bathe her, love her, and say goodbye. We are so thankful that God was so merciful to us; we couldn’t have asked for anything more. While we are grieving her loss, we are completely at peace about our decisions for her care and comfort, and are relieved that she no longer has to struggle to come back from her apnea episodes. We are happy that she was held in loving arms virtually every minute of her life, and that she will now be held in the even more loving arms of Jesus for eternity. Her life was truly a blessing to us and to many others as well. We have learned much, and we know we have much still left to learn from her.

Read Steve's thoughts about Abigail's life in A Father's Perspective.

Epilogue: June 2004

Shortly after losing Abigail, when I first wrote about the blessing God had given us through her, I never imagined the full extent of the blessing we would receive. Neither did I imagine the depths of pain and grief I would need to go through in order to receive that blessing.

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.

Mindy Wilsford
June 22, 2004

Father's Perspective | Pictures of Abigail

A Trisomy 18 Journey - Abigail's Story - Birth and Life