The Unwanted Road

Eight years after our 11th child was born, we learned that I was expecting yet again. We had already sold all things baby at this point. We even had our first grandchild! But here we were, going back to looking at baby things and planning once again. We were seeing a midwife and getting bloodwork done. I was 43 at this time so we opted for all the genetic testing. Just a little over 12 was in, the midwife calls to tell us we are having a baby girl. But, that wasn’t all. The bloodwork showed that she had a genetic disease called Edward’s Syndrome or Trisomy 18. We were set up to see a genetic counselor to learn more about her condition. In the meantime I had done my own research and quickly learned that this diagnosis was a death sentence.

We had a lot of dr’s appointments and ultrasounds. We found out she had some issues with her heart that the cardiologist thought could be fixed with surgery after she came home for awhile. She also had an omphalocele, where some of her intestines or other organs were sticking outside of the belly through the belly button. The organs were covered in a thin transparent sac. Thankfully hers was considered small and could be fixed by surgery as well. So we had already seen a surgeon for that as well. My pregnancy was very emotional. I wanted to get her whole area set up with her crib and car seat but my knight encouraged me to be patient and not to rush. He was worried about me. He was guarding himself through this time to not get attached to this little girl so he could be strong for me if things went badly.

We prayed a whole lot! We prayed for miracles, in every shape and form we could get them. I prayed that I would be able to meet her when she was born and that I’d get time with her. So many of these little ones are born sleeping or pass in a matter of minutes to a few hours after birth. Some are born with major deformities and most are incredibly tiny. So My list of miracles was rather large.

My due date was July 2nd, 2016. On May 15th, I woke up and did my normal routine. After a short time I realized I hadn’t felt her move. So I laid down, I drank something sweet and ate some chocolate knowing that those things usually got her moving around. It didn’t work. I was sitting in my room crying when my Knight came in and asked what was wrong. I told him I hadn’t been able to feel her move all morning. He jumped right on that and we got our bags and headed to the hospital. We were sent to labor and delivery to let them evaluate her. I was 33 weeks at this time. Her score for the test came back very poor and we were on our way to an emergency c-section in just a matter of minutes. By the time the dr pulled her out she was blue. They got her stable, and rolled her over to me.

This was me meeting my Liberty Grace. She was beautiful.

We had a lot of moments in the NICU. Some good, some bad. But we were so glad we had her with us. On day 18, our most incredible neonatologist came in and talked. He said Lisa, I don’t think we are going to make it long enough to get that surgery. I want you to hold her. As long as you want, i will tell the nurses, you are to just hold her. I called my Knight, who was actually going to spend the night at home that night with our other children. He changed plans and headed up there. We spent probably for the first time, just me and him with Her alone in her room. The nurse had gotten her out of her bed and I started holding her at 5pm. I asked my knight if he wanted to hold her, he said he wanted me to have that time with her. At around 10pm I had to use the bathroom so bad. I didn’t want to let her go, but my bladder wasn’t going to make it. So we called the nurse in. As soon as the nurse took her off my chest her heart started to fail. The room filled with so many people. My knight and I were watching at the back of the room. They were trying to keep her going. The dr asked my knight if we wanted them to keep trying, he looked over at me and the dr said, We will keep trying. They worked tirelessly for an hour and had to call it. She was gone.