So much has been happening in my life lately. Mostly sad. I'm not sure why but I feel the urge to write about it and my handwritten journal just doesn't seem the right place for the musings in my head. Even though the sadness in my life right now is extremely personal, I feel the need to share in a somewhat public forum. This blog might not ever be read by someone else, but it feels good putting it out there in cyberspace. Especially with the thought that some of my work to get through this pain--and ultimately move on with my life--might help someone else. I've read several blogs, forums and posts from other people over the last few weeks to try to cope with my pain and there are many that have helped me.
Monday, March 7th, 2011, my husband and I found out that the baby we were expecting on 8/1/11 no longer had a heartbeat. I find tears leaking out of my eyes as I write that. We found out we were pregnant in mid-November. Okay, well November 17th to be exact. I have all of these dates seared in my brain. I went to my primary care doctor on November 19th to confirm. My husband and I got married in October and started to try to have a family right away. We were so blown away to find out that we got pregnant during our first month of trying. It felt like an immense triumph. I waited until I was 35 to start having my family. That is quite a challenge in itself. Wondering if I was going to be able to conceive, worrying about all that could go wrong in pregnancies in women over age 35, all of that went out of my mind when that positive sign appeared. I had gotten pregnant and everything was going to be perfect. Little did I know....
Our first doctor's appointment was scheduled at 6+ weeks on December 10th, 2010. Our doctor gave us a transvaginal ultrasound. At that time all we saw was the gestational sac. There was no fetal pole and no heartbeat. The doctor didn't seem at all concerned. Our gestational sac was measuring 6 weeks 3 days at that point I think. He said it was early and that he would see us in two more weeks. Of course, I freaked out. I searched online on all the pregnancy bulletin boards and scared myself silly from all of the stories there. Stories of blighted ovums, early miscarriages abounded on those sites. There were few stories of hope for people that didn't see a heartbeat at 6+ weeks.
We went back to the Doctor's office on Tuesday, Decmeber 28th, 2010. We had another ultrasound and saw a wonderful sight. Our baby was clearly visible, heartbeat strong and the baby was moving all over the place. He had little hands and feet, a beautiful little tiny face and was obviously doing well. The baby measured at 9 weeks 1 day and put us at a due date of 8/1/11. We were so excited and happy.
I had two more appointments after that. My husband didn't go with me since they were just check ups and didn't have ultrasounds scheduled. Just a fetal doppler to hear the heartbeat. Both appoinments seemed to go okay. I had blood drawn at the first appoinment for the normal testing they do early in a pregnancy. All the blood draws turned out just fine, apparently I was healthy. I did get an optional blood test. Since I'm over 35, I decided to do one of the tests that screens risk for Down's syndrome. I seriously wasn't worried about it, I just thought that since it was available to me and non-invasive that it would be a good choice. I chose a two part test that tests once in the first trimester, gives you results and then tests again in the second trimester and combines the results to give you a final result.
I went in for my next check up 4 weeks later on February 16th and recieved the results from that first Down's screening in the first trimester. My odds were not high and the risk was not a positive one. I heard the baby's heartbeat on the doppler and everything seemed like it was going just as it should. I was about 16+ weeks at this time. After the appointment with my OB/GYN I went down to the lab to get blood drawn for the second half of the Down's screening.
Almost 2 weeks later on Tuesday March 1st, we received a phone call from our doctor at almost 7:30 at night. He said that the second trimester screening had come back positive. Our risk was 1 in 10 for Down's Syndrome and 1 in 55 for Trisomy 18. I was floored. I began crying when I was on the phone with the doctor as he slowly and methodically explained the next steps for us. We were to get a Level II Ultrasounds instead of the gender ultrasound we were expecting on March 18th. In addition, he recommended an amniocentesis. I couldn't believe it. I cried for days. My husband kept reminding me that 1 in 10 meant that the baby had a 90% chance to be perfectly healthy. We started throwing around the idea that we might have to terminate the pregnancy. Babies with T18 do not live. It's just not a chromosome abnormaility that is compatible with life. We were so scared.
The next part of my saga deals with trying to get an appointment to find out if these postive screen results really meant anything, or if we were just one of the many false positives. My doctor said his office would make me an appointment the next day with a perinatologist and would arrange the level II Ultrasound. The next day was a Wednesday and I called my Doctor's office twice to find out about the appointment for the Ultrasound and amnio. The first time I called in the morning the secretary said she had faxed my paperwork over to the other office. The next time I called was in the afternoon. The secretary said she would call the office and call me back. After her call to the other office she called me back and said they were already closed. Here I was, very stressed and worried about my baby, and I didn't even have an appointment yet. The next morning (so now it's Thrusday)I waited patiently for the Doctor's office to call. I was holding myself back to not call them because I wanted them to be on my side. So finally the secretary called around 9:30 that morning. She said they got me an appointment for March 16th. March 16th was 2 weeks away. I started to cry and tell her that was unacceptable. We had no idea if our baby was okay or not and didn't want to wait 2 weeks to find out. I was very upset and probably ended up not being very nice on the phone. The secretary said she would see what she could do and would call me back.
A few minutes later I received a strange call on my cell phone. It was a number I didn't recognize. I answered it thinking it might have something to do with all this. It ended up being a hospital in Rochester NY. Rochester is about 2 hours away from us. We live in rural PA and don't have that many resources around us. The woman on the phone, Diane, was so wonderful. She said they could get us in Monday morning at 8:15 and that I should remember that everything could still be okay. She said she sees false positives all the time. She was so lovely to me on the phone. So we had an appointment for 8:15 to see a genetic counselor and an appointment at 9:30 to have an ultrasound and amnio if we chose to.
The next few days we tried to stay positive. My mantra was "everything is okay, the baby is fine." I said it over and over and over. But at the same time, we continued to talk about termination if there was a problem that wasn't compatible with life. We didn't want to bring a child into this world that would only suffer and ultimely die. We didn't think we could handle that and didn't feel it was the compassionate thing to do.
Our appointment was scheduled for 8:15 Monday morning March 7th, 2011. So Sunday we get word that a large storm was rolling in and we were expecting some snow. We woke up Monday morning to almost 2 feet of snow and the roads not plowed. J's (my husband)school was called off, and most other schools were as well. We got up at 4a.m. to get to the appointment. It took us 4 hours to make the 2 hour drive.
When we got there our first meeting was with the genetic counselor. Her name was Jeanne and she was very nice. She went over what the odds meant, talked about fasle postives, talked about genetic testing and generally just answered any questions we had. So far so good.
We were then sent across the hospital to the ultrasound area. There were many pregnant women in the waiting room and we saw a few people walk out and announce "it's a girl" or "it's a boy." We smiled and looked at each other each time. We were hoping to be able to do the same in just a few minutes! We were 19 weeks along and one of the positives of the situation was that I was going to find out Baby Bear's (oh did I mention this was our pet name for the baby??) sex early!
When we finally made it into the ultrasound room there were two technicians. I was on the medical bed and J was standing beside me. The technician poured the lubrication stuff on my belly and started to move the wand around. J said he knew immediately, but it took me a few minutes to figure it out. The technician said something like "Usually when there is something wrong I stop and get the doctor." I didn't really get it. I was wondering what she meant and why she would say that. She kept looking for a few more moments and then stopped, sat back and looked at me. She said "I'm so sorry but your baby doesn't have a heartbeat and already passed away." I started crying and J put his arms around me. I thought I would die from the pain. I literally hurt inside so badly that I thought my body, my heart, my soul would give out. The technicians left the room and said they would get the doctor.
When the doctor came in he told us that he had reviewed the film the technician had taken and that he was so sorry, but our baby's heart had stopped beating. He said that with my permission he wanted to continue the ultrasound and see if he could give us some answers. I agreed to let him do that. As he did the ultrasound I started to hear words I didn't really get or process at the time. Words like "Cystic Hygroma" and "hydrops" and words I did know like "soft marker" "down's syndrome" "genetic problem." Later I processed some of this and realize what he was saying(I also did some research online). The baby had a cystic hygroma on his neck. It was large and created a problem with the baby's ability to process fluids. Basically a cystic hygroma is a lymphatic drainage problem. The hygroma and the back up of fluids caused the baby's heart to fail. Underneath all of this is usually a genetic problem. Typically Down's (T21), Turner's Syndrome or T18 are the causes for a Cystic Hygroma. I guess in about 50% of the cases they find it's genetic and in the other 50% sometimes it's linked to a virus (fifth's disease) or sometimes they just don't know why.
After the ultrasound the doctor sat with us and discussed the next step. He said that we would either need to do a labor and delivery, or do a d & e procedure. He explained that the body might take months to catch on to the fact that the baby had passed away. He said he would call our doctor and find out if I could go back to my OB/GYN to figure everything out. He left the room for a bit and got into contact with our doctor. When he came back he explained that our hospital was only able to do the labor and delivery and that they couldn't perform a D & E. Personally, I felt that delivering a dead child was barbaric. I know that some women make that choice, and it's the right choice for them. But for me, having my first pregnancy, first experience with labor, delivering my very loved dead child did not seem the right way. So I opted for the D & E. The doctor said he would see if he could make arrangements with another doctor in his practice to see if he could get us in. So he left again to see if he could make the arrangements.
When he came back he explained that it would be a two day procedure and would begin the next day at 2:30. I was so glad that we could do it quickly. I was so consumed with the fact that I was carrying around my dead child. It seemed so morbid, so awful and I could barely handle it.
J made arrangements for us to stay at a hotel the following night for the 2 day D & E procedure, but we drove home after getting the bad news. We were devestated. There are no words available in the english language to explain how we felt. I can try though. Hollow, sad, angry, scared, disbelieving, numb and broken are a few words that come to mind. Some of our friends and family knew about our appointment and had expected to hear from us by early afternoon. When they didn't hear from us by 3:00 we started getting texts, calls and emails. It was probably close to 4p.m. or so when we started sharing the news. Our families grieved with us. We went home and continued to grieve.
On Tuesday we went back to the hospital and met with the doctor who was going to perform the D & E. She explained the procedure and answered all the questions we had. Basically the D & E consists of one day of cervix dilation and then the actual procedure on the next day. The cervix dilation wasn't too bad. She inserted laminaria sticks into my cervix to open it up for the surgery. It lasted about 20 minutes. It was moderately uncomfortable, but not actually painful. She warned me that I would get cramps, possibly really painful cramps overnight. Also the cervix dilation could signal my body that it is time to miscarry naturally and that could have happened overnight as well. Luckily it didn't. I immediately started to bleed after the insertion of the laminaria. We picked up my perscription for painkillers and an antibiotic and went to our hotel room. We were both so dead and broken inside. We watched some TV, ate dinner and went to bed.
The next morning we were expected at the hospital at 7a.m. for preop stuff. When we got there it took them a while to call me, but I had to go back into an odd little room. It was a bunch of small rooms with curtains covering them. They put me in a hospital lounge chair thing and started the pre surgery routine. I had to put on a gown, hospital socks, hair net, get an IV put in and answer a bunch of questions from everyone. I met everyone involved in the surgery and was crying the whole time. This hospital has the most compassionate staff I've ever come across. They all told me how sorry they were and gave me a gentle arm rub or even a hug in some cases. Eventually it was time to go into the OR. I was walked back into the OR and put onto the operating table. It was surprisingly warm and cozy. I guess the blankets were all warmed up, I was so surprised. I started to cry and the nurse said she was going to give me a sedative. It took only moments for me to be out.
I woke up after it was all over crying and screaming. I was distraught. I knew that Bear was gone forever to me and knew that it was over. Several people had to calm me down and get me an inhaler to start breathing normally. My poor husband had been asked to come be with me, but after they realized I was flipping out they had to go ask him to stay where he was. He was then worried that something was wrong. I guess after they got me calmed down the doctor went out and talked to him for a while and told him how it all went. Eventually I calmed down and they brought him back. They eventually put me in a seated position in a recovery room and had me drink a bit, show that I could go to the bathroom and basically come down from everything. It took me a few hours to fully recover.
I asked for an amnio before the D & E, in case it would help figure out what went wrong. The doctor also said there would be an autopsy and a pathology report. I'm hoping that all of the testing gives us some answers as to why this happened to our baby.
I had asked for a few things to happen with the baby. First, we got a beautiful set of tiny, tiny footprints to remember Bear always. Then, we also got a card from the chaplain that did a blessing over our sweet baby's body. Both of those things give me great comfort. I have something physical to remember my child by. That makes it so much easier to know he is gone. I have a physical piece of him forever. It's been 13 days since I found out my baby was dead and 10 days since he hasn't been inside me. Every day is a struggle to get through. Friends, family and coworkers have been amazing and so supportive. Other women and even one man, have shared their stories of loss. My grief is as powerful today as it was 13 days ago. I'm hoping that sharing my story, getting back to routine and time will all help dull the pain.