During my time on bedrest, I got fairly good at a couple of different on-line games. I joined a couple of chat rooms. Mostly, I did research on this thing called Trisomy 18 or Edward's Syndrome. I am the kind of person who has to know all of the facts. I wanted to feel as if I had some semblance of control over this whole arena where I, in fact, had none. I joined some on line groups of parents of children with this genetic disorder. I learned more of the human side of things from them. Most of the articles I found were written by doctors studying statistics who had little or no contact with actual T-18 cases. Our doctor, the wonderful Dr. Amy M, told us othat she had experienced only two cases of T-18 babies born alive. Both passed quickly, the longer life lasting only hours. We knew the "odds" but could only feel God telling us that even if she passed away before birth, she would have a purpose here.
A side note: as a teenager, I remember telling my Mom that I thought that one day I would have a challenged child. She told me I wasn't normal (I've heard that one before!). She said that "normal" people see themselves with healthy babies. When Kevin and I were expecting our first child, I felt he needed to know this belief of mine that I would have a child that would not be fully abled. He admitted that he, too, had also had that feeling many times. That he believed that he would have a child with special needs. We declined the Triple Screen with Hunter and he turned out perfect (in my opinion, of course). When we received the news that Audrey might have something wrong, Kevin was devistated. I was calm and peaceful. I told him that this might be the child we always suspected we would have.
So began the wait. I truly believe the waiting was the hardest part. The "not knowing" what was coming next. Would we make it to viability? Would we make it to term? Would she be still born? Would we have any time with her? How long? What difficulties were we going to face?
With each new ultrasound, they seemed to find something new. Our last ultrasound before we moved from Kansas was on 9 June 2003. We knew she was small for her age; we knew she had an omphalocele. At this visit, they confirmed that my membranes had completely healed and my amniotic fluid levels were within the normal range (God is Good). They found an open neural tube defect on her tailbone, a club foot and clenched fists. All of her internal organs seemed to be working well and pretty much in the right places (her heart was a little right of where it should have been, but it corrected itself.) Her head was oddly shaped, another common marker for Trisomy 18. Her cerebellum was curved downward due to the pull created when the spinal fluid drained from her tailbone. It all sounded so dire.
Hunter and I flew to Georgia to stay with my family while Kevin took care of all of the moving. While we were there, we visited Bernhardt Funeral Home and inquired about baby funerals. We got some ideas on services and markers. Not exactly what you expect to be doing when you see two pink lines on the stick test. The people at Bernhardt's Funeral Home were kind and caring and totally in awe of what we had to do. They did their best to help us with everything.
We joined Kevin in NC at the end of June. We all drove. Hunter and kitty with me, then Kitty with Kevin! We were so blessed to have Kevin's brother drive down from VA to help us for a couple of days. There was a lot of moving I didn't need to be doing in my condition at the time. About a week later, Kevin's parents came down to visit for the 4th of July weekend. They were wonderful helping and playing with Hunter while I rested. They went to a 4th of July Carnival on Ft. Bragg. Dad helped with setting up the shed, mowing the lawn, organizing the garage. Mom tried to help, but I was too uptight at the time (I have since gotten over that)!
The day Kevin's parents left, we went into the local Army OB office. I walked up and told the front desk that we had a baby diagnosed with Trisomy 18, a rare genetic disorder and that we needed to schedule an appointment as soon as we could. She took my information and asked me to wait. When she came out again, she asked if we could come back in 90 minutes for an appointment. For those of you unfamiliar with the military healthcare system, this was nothing short of a miracle!
We saw two different doctors at this facility. We were essentially told that they would do nothing to help us or our baby. They would not stop premature labor. They would not do a C-Section, even if the baby was in distress. They would only consider helping me. To us, that was unacceptable, although we were to find out, it was not uncommon. We asked to be referred to the University of North Carolina at Chapel Hill. We were put in touch with a wonderful doctor there, a Maternal-Fetal specialist, who believes as we do that all life is a gift.
Dr. T listened to our story. He heard all of her problems. He heard our ideas. He suggested that, if our goal was to meet her alive, we should do a planned C-Section. He told us that even if our baby was chromosomally normal, but had an omphalocele and open neural tube defect, he would recommend this course. Besides, since Trisomy 18 babies tend to be fragile, it would be our best bet. We trusted him, so we agreed to the procedure. The date was set for October 14, 2003. It had to be changed later to the 15th, exactly one week before she was due.
We had a "Perinatal Care Coordinator" who took care of us while we went to UNC. Her job was to coordinate our appointments and serve as a single point of contact/liaison to the medical community. She was an RN, so she had not only the ability to understand the doctors, but a tender heart, so she could translate in a gentle way that we could understand. We just loved her, too!
We always went as a family: Kevin, Sherry and Hunter. WE had numerous appointments over the next couple of months. Thankfully, they were usually scheduled in blocks. Several per visit. We had ultrasounds every two to three weeks. We had an appointment with a Geneticist. We saw our Maternal-Fetal Specialist every time we had an ultrasound. We met with Cardiologists, NeoNatologists, Neurosurgeons, Social Workers... so many people who wanted to help us and to try to understand this family that chose to keep a Trisomy 18 baby. We were to meet many wonderful and a few not-so-wonderful doctors. Medically, we felt we were ready.
Personally, it was a roller coaster ride. Kevin and I each had different ideas on how to cope. He spent his time thinking and hoping that everything could change and we would have a different outcome than the Trisomy 18 would dictate. I quietly accepted the diagnosis. I had a peace knowing that God was in control. I knew that only He could see the outcome. I knew that He had a reason. We prayed for complete healing, as did people all over the world - too many to count. But, the fact remained that barring a miracle, our baby would be "handicapped." It was not easy to accept. Even though I had known for years that I would have a specially challenged child, even though I knew God was in control, even though I had peace, it did not change the fact that I was human and very much wanted my baby girl to be healthy. If there are 700 Trisomy 18 babies born alive each year and only 50% live for more than a week, I knew the "odds" were against us. It was a sobering thought.
Two days before her birth, I had my breakdown. I just sank to the floor beside the bed in the bedroom and cried and cried. I wanted my baby to live. I knew that while she was in me, kicking and moving, that she was safer than on the outside. It was almost as if I wanted her to stay there forever. I didn't know if she would make it. I didn't want her to die. I wanted to raise a healthy baby girl. I wanted her to grow up. I wanted her to go to school, to go to her prom, to have a career, to get married. I wanted her to give us Grandkids. That is just the way things are supposed to happen. I knew that, even if God chose to have her live for years and years, the most I could really hope for was that she would attend school. I mourned the loss of a dream. I mourned my baby girl before she was born. I mourned for her, for the things she would never be able to do.
Grammy and Grumpy (Kevin's Parents) got here that day. They are always so great with Hunter and he loves them to pieces! Grammy brought in so many gifts from people in their hometown. I had asked for "no gifts" until we knew if she would be with us for long, since I didn't think I could handle having to deal with it all if she never came home. But, kind people want to help and everyone is clueless as to what will help (to include the expectant parents). So, we spent quite a while opening presents of blankets and booties and onesies. I couldn't help but smile and take it on faith that she would someday use the items. Some thoughtful people even sent some pamering stuff for the tired Mommy! We also got a package that day from my sister (former step-sister?, though she is still my sister - you know?) It was filled with Clifford the Big Red Dog stuff for Hunter. He loves Clifford and had a blast sorting through this huge box. There was a note in it from her that stabbed at my heart with some things she said. I guess I could have handled it if it had not come just before my baby was scheduled to be born and could very possibly die.
The next day was Tuesday, 14 Oct 2003. We packed all we thought we might need. We didn't know if we were packing for two days or two weeks. That was tough. The cars thoroughly crammed, we headed out on our two hour drive to the University of North Carolina at Chapel Hill. We checked into the Homewood Suites (we would come to know them very well over the next months. There are truly wonderful, kind, thoughtful people there.) After we settled into the rooms, we headed downstairs for dinner. While we were there, my Mom and Dad showed up, as did my brother and his wife and grandbaby! This was the first time Kevin's and my parents had met and we had been married 8.5 years!) We had a great time chatting and getting aquainted. After dinner, we hung out a bit, then left Hunter with grandparents and went into the hospital for the pre-op check up. Turns out, I was beginning labor and didn't know it. I was having mild contractions a steady six minutes apart.
