Demboski Diary

Demboski Diary

Stories of our life...

Monday, February 21, 2011

Our Broken Hearts

This is our very sad story for February 2011.
I was 18 weeks pregnant. Almost half way through. It was a long hard week. We got a phone call from my OBGYN, Dr. Illeck on Tuesday February 1st and he told us news that would change our lives forever. We found out that the blood work I had drawn, had screened positive for Down's Syndrome. We had a 1 in 10 chance of having a baby with Down's. I was told to schedule an ultrasound and to think about having an amniocentesis scheduled. I was devastated obviously. Paul's parents happen to be over when I got the phone call because they had babysat Allison that morning while I worked at Andrew's preschool. I called Paul and told him the bad news and he came home from work early. I was so upset about the thought of our baby not being healthy, and couldn't stop thinking of all the health problems that Down's syndrome children had. I broke the bad news to the rest of our family and friends and the prayers started.
Once Paul got home we started discussing the risks verses benefits of having an amniocentesis. We spoke to a lot of our friends and family and ultimately we made the decision to go through with the amniocentesis. I made an appointment for Thursday.
After a long Wednesday waiting for our test, February 3rd was finally here. We had my parents babysit the kids while we went to the high risk OB office. After talking with friends and family, we heard of 3 different incidences where some moms had tested positive for Down's and it turned out to be a false positive, so we were very hopeful that we too would have a false positive. We had to meet with a genetics counselor before our appointment. We talked with the genetics counselor for approximately one hour and each minute that passed by we lost more and more hope. She told us that when they see lab values as high as mine, they "get very concerned". We were under the impression that we still had a 90% chance that the amnio would be negative since we only had a 1 in 10 chance for Down's according to my phone call with Dr. Illeck. But she informed us that the paper work stated " Greater than 1 in 10 chance" and that they don't know for sure, it could be 1 in 2 or 1 in 3 or 1 in 9. She really prepared us for a positive test result. She even called the state department where they completed my bood work and gave them measurements from my last ultrasound to add to the "equation" to get a more accurate result, but it didn't change the results. She also told us that the blood work that I tested positive for was 85% accurate and they very rarely see false positives when it come to results like mine. I felt like we were hit over the heads with a sledge hammer. We were devastated. Once we finished our appointment, we went back to the lobby to wait for the ultrasound and amniocentesis. While we were waiting, Paul stepped outside to call his parents and I sat there amongst the other pregnant women and watched on the office television a segment called "How to care for your infant" and I lost it. The baby on the TV was chubby and healthy and I had just been told basically that my baby had Down's Syndrome! I started crying, they called my name and Paul and I went back to the ultrasound room where I could not calm down and kept crying. The tech started the ultrasound and I didn't even want to look at the baby. The genetics counselor came in the room and they whispered a little and continued a little bit more with the ultrasound and then the technician left the room to go get the doctor. The genetics counselor told us that the ultrasound "didn't look good and to remember that we can test for other genetic disorders .... and please know that no matter the outcome, you didn't do anything wrong". I couldn't understand what she was talking about. I remember telling Paul that the baby must be really deformed because they seem so concerned. Dr. Asrat, the high risk OB, came in and looked a little bit more with the ultrasound and I didn't stop crying. He looked for 30 seconds or so before I asked him if the baby was dead. He replied "yes" and then turned off the machine. I lost it.
I couldn't talk, I couldn't move, I just wanted to die. Paul held me in his arms as the doctor left to give us a minute. We both cried. I remember thinking that this can't be real, what will we tell Andrew, now what do we do, I have a dead baby inside me, when did this happen, how did this happen, should I still have the amniocentesis performed. I just wanted to be drugged and wake up when it is all over.
Dr. Asrat came back in with the genetics counselor. He told us that is looked like the baby had died about 1-3 days ago. He explained to us why we might want to still do the amniocentesis. He told us that once I deliver the baby they can send tissue samples to grow in the lab to determine if the baby was positive for Down's, or we could do the amniocentesis to test the baby. I couldn't even believe he told me that I had to deliver the baby. I got even more upset and told him there was no way I was going to deliver a dead baby, and what a horrible thought. I just wanted them to put me to sleep, cut me open and take the baby out. We soon learned that that was not an option. I immediately said I did not want the amnio performed, the thought of having to undergo that procedure right now was just too much. Dr. Asrat explained to us our options... 1. Be induced and deliver the baby vaginally or 2. Have a D & E which stands for Dilation and Extraction, where they would physically dilate me and then evacuate the baby out. He told us that we didn't need to make a decision today, but we did have to go see Dr. Illeck today. They all said how sorry they were for our loss and we left. On the way home Paul called his mom and dad and told them the ultrasound didn't show a heart beat. They were driving up to Santa Barbara, and were in Camarillo when we called them. The immediately turned around and said they were coming over.
My parents were watching the kids at home and my dad was planning on leaving early to go see my Aunt Nancy at the hospital because she was scheduled for an amputation that day and he wanted to go see her. We called to tell him to not leave and to stay there with my mom, we didn't tell them why. We made our appointment with Dr. Illeck at 1:45pm that afternoon. That gave us enough time to go home, talk to my parents for about 30 minutes and then leave to go see Dr. Illeck.
When we got home, Allison was taking a nap and Paul brought Andrew out into the backyard. I sat down and told my mom and dad that the baby died. They were completely shocked. Nobody had even considered that this would have happened. They of course were upset and in disbelief.
Not long after we got home, we had to leave again to see Dr. Illeck. When we got there, he was kind and compassionate. He went over our options again with us as to what to do next. I told him that I didn't want to deliver the baby and I just wanted the D&E. He gave us the phone number of a doctor at Hoag that would perform this procedure. There are only 2 doctors at Hoag that do these procedures. We asked him if we could find out the sex of the baby and he said of course. He told us a little bit about what to expect with this procedure. They will insert these sticks inside of me to physically dilate me. He said that it could take a couple of days and a couple doses of this medicine before they can perform the D&E. He also warned me that is is very painful, and that they can give me narcotics to help with the pain. I then asked him if he could recommend any adoption agencies, he chuckled and told me not to even think about that right now. He went on to tell me that I should heal fine physically, it will just be very difficult emotionally for quite a while for the both of us. We called Dr. Agnew and made an appointment for the next day, Friday.
That night was filled with a lot of tears, devastating break downs, empty feelings and awful heartache. We decided to tell Andrew the sad news. We explained to him that we were not going to have a baby anymore and that God has the baby up in heaven. He looked at us while he wore his dinosaur jammies and with tears in his eyes as he sat on his knees on the couch he said "but I prayed". We said "I know you prayed Andrew, but God will take very good care of our baby". He cried some more and then we put him down to sleep and he said that we should go up to heaven and "take our baby back!" He was a mix between sad and angry. He then asked me if God was going to take Allison away, I reassured him that Allison was not going anywhere. It took what was left of my broken heart and just broke it into smaller pieces. I cried myself to sleep that night and slept until the sun came up.
I woke up exhausted. Paul's parents came over to watch the kids while we went to Dr. Agnew's office. I cried in the waiting room, and poor Paul had to deal with annoying clients on the phone while we waited. They called us back to the room, and I cried the whole way back to our exam room. The lady that called us back looked like a scary clown. She was older, maybe 60 something, with horrific make up, her eyeliner was drawn on about 1/4 inch below her eye and her eyebrow pencil was drawn above her eyebrow. It was ridiculous. She tried to comfort me at first and told us that we "were doing the right thing", which I thought was strange to say. I told her that I had a positive blood test for Down's syndrome and she went on to tell me how a life with a child who had Down's syndrome is so difficult and she knows a lady who is still taking care of her child who is 50 years old, and it has been her whole life caring for this man. This lady thought I was there to terminate my pregnancy! I couldn't believe it! I explained to her that my baby had already died. She said "oh I didn't know that". I was shocked at how unprofessional she was. She never even introduced herself. She explained to us how they would to the procedure. She showed me the "sticks" that they would insert into me on Sunday and then Monday we would do the procedure at 1:00pm. I asked her if my body would be ready, because Dr. Illeck had said that it could take a couple of days for the medicine to work and she was confident that just one dose and one day would be enough. She left to go get somehting and I just looked and Paul and said I don't want to do this anymore, I was so scared and upset with this stupid lady.
When she came back so did the doctor (finally) and he stood in the doorway, didn't come into the room. I told him that I was afraid of being put under anesthesia because I am afraid I wont wake up because I am so sad. He told me that that wouldn't happen. He went on to explain that he and his wife (the crazy lady) would see me on Sunday and the procedure would be for Monday. I asked him if we could find out the sex of the baby and he said maybe only because the baby doesn't necessarily always come out in one piece. That just broke my heart. It just seemed so inhumane. The doctor left. I asked his wife why he and one other Doctor were the only physicians to perform this procedure at Hoag. She told me that they are pro-choice. That explained a lot.
We left the doctor's office and completed my lab work and pre-op stuff. We decided to go to lunch. We talked over lunch for hours. It was really the first time since this whole thing started where Paul and I were calm and collected and alone. We discussed the procedure and our concerns. We agreed to call Dr. Illeck to ask him if he trusts Dr. Agnew and to get a little more information about him.
I called Dr. Illeck while Paul ran up to his office to finish up some paperwork. Dr. Illeck was on call and called me back within minutes. I told him I was not impressed with this doctor and I would feel much better if I could either get his blessing that he was going to do a good job, or maybe get the phone number of the other physician that also performs D & Es. Dr. Illeck said that he does feel confident in this doctor, and he is hesitant to give me the phone number for the other guy because he only performs abortions, his office is an abortion clinic. That gave me the creeps, so I thanked Dr. Illeck for his time.
Once we got home, Paul and I had a long talk. We talked together, with his mom, with my mom, with my sister. We were beginning to think that we should follow our instincts and not go to this doctor for this procedure. Once again we called Dr. Illeck to find out more about the induction and delivery. He called us right back and explained everything. We found out that there is a great fetal demise team at Hoag that would be caring for us. I would be induced Saturday morning and hopefully be going home that evening. Dr. Illeck was going to be on call, so he would perform the delivery. I also found out that the nurses take pictures of the baby, make little hand prints and foot prints that we get to take home. I felt so at ease when I heard all this. I felt like they were going to treat my baby with dignity. We scheduled our induction for 9:00am the next morning, Saturday.
I cried myself to sleep again.
Paul's brother Mike came over bright and early to watch the kids along with Paul's parents. We gave kisses to the kids and drove to Hoag. We checked in at Labor and Delivery, and they walked us to our labor room. I haven't been back to this floor since we delivered Andrew. It brought back a lot of frightening memories of that tragic day where we almost lost our first born. They gave us a huge corner room with panoramic views of the ocean. I changed into the gown and settled into the bed. My nurse was Kathy and she was amazing. She explained everything and answered all of our questions. We asked her if we can hold the baby, do we have to hold the baby, do people have funerals for babies, how long will it take to deliver, is it painful, do we have to have pictures taken, etc, etc. Dr. Illeck came in to put in the first dose of medicine. He explained that things progress pretty slowly at first and then all of a sudden it happens quickly. My parents were there and they watched a movie with Paul on our laptop, while I drifted in and out of sleep. Paul's parents showed up around 2:00pm after they helped Mike put the kids down for naps. They informed us that Paul's sister Katie was flying down and would be at our house to help Mike with the kids tonight. Four hours later the laborist doctor came in and gave me a second dose of the medicine. The nurse brought in a cart of food, coffee, cookies and beverages for my family. I thought I would be home by now, and I was told that I would be staying the night, things were moving slowly, my cervix was not responding very quickly. We called Katie and Mike to let them know, they both said they could stay the night with the kids, thank goodness. Katie kept sending us pictures of the kids via Paul's phone, which was nice to see them having so much fun. Both sets of grandparents were entertaining each other and talking and were in it for the long run. I couldn't believe they had been there for close to 12 hours at this point. After dinner, my contractions started getting pretty painful. I decided it was time for my epidural. We said good bye to the grandparents, they went down to the lobby to sleep, it was about 10:30pm at this time.
The anesthesiologist was very nice. She was compassionate and kind. After the epidural was in they gave me a dose of IV benadrly, which sent me to la-la land. I slept really good for what seemed like forever. They put a catheter in me and another dose of the medicine. Paul managed to sleep a while on the pull-out sofa. I thought my water had broken a few times throughout the night, but unfortunately it was my body reacting to the medicine and I was having diarrhea that I had no control over, talk about adding misery to an already horrible situation. My night shift nurse was amazing though and told me is was completely normal and not to worry. I was really hoping to deliver on her shift since she was probably the nicest person in the universe. Around 5:00am Sunday morning I was dilated to 10cm. She called Dr. Illeck. He told her to give it a couple of hours to give the baby time to move down the birth canal so I didn't have to push the baby down. At 7:00am, Dr. Illeck arrived, right at change of shift for my nurse. The day shift nurse came on and my night shift nurse stayed over to help. They prepped the room and we were ready.

With one small push our baby was born at 7:25 am. It was quiet in the room. Dr. Illeck said the baby was out and so was the placenta. He explained that the umbilical cord looked good, so that right there ruled out any problems with the cord being around the baby's neck and caused the death. Dr. Illeck felt confident that the placenta came out whole, but to make sure, he checked my uterus. It was the most painful thing I had ever been through, I was crying with pain and it was difficult to breath. My epidural was not helping with that kind of pain. It was horrible! Dr. Illeck took a piece of tissue from the placenta and from the baby t0 send to the lab to hopefully give us some answers as to what happened. The nurse asked if he could tell the sex and we heard him say "its a boy". I found myself momentarily excited that it was a boy, as if he were alive and we were going to be giving Andrew and Allison a little brother, but that didn't last long and I quickly thought, we have a dead son.
Dr. Illeck gave us some kind words and told us that the next few weeks are going to be very difficult for us and that he wants to see me in 2 weeks. He had to go to a funeral that morning, so he had to go. Talk about a depressing day.
The nurse took a long time to prepare the baby for us. I just kept staring at Paul and was very nervous to see what was going to happen next. Paul had called our parents to tell them the news. They had slept in the lobby all night long...crazy grandparents. They came up to the labor and delivery waiting room. Our nurse spent a lot of time over under the warmer with our son, making sure everything was just right for us. She wrapped him up in the hospital blanket and then wrapped him in a beautiful knit blue blanket that the hospital gave to us. She asked us if we were ready. I thought I was so I said yes. She walked over with him in her arms. I couldn't do it. I couldn't take him from her. She stood there for a few minutes, while I asked her what she looked like, I asked her if he looked like a baby, if he was scary looking, if he looked deformed. She told me that I don't have to hold him or look at him, and it was up to me. Paul decided he was ready and he took our son in his arms. He cried. He told me that he looked like a little baby, he was a nose, eyes, a mouth and Paul told me that his hands were beautiful and amazingly small. He continued to describe his features to me, all I could do was cry. I was afraid that if I looked at him that I would think he was scary and it would make me upset to remember him that way. Paul continued to hold him for quite some time. Our nurse gave us some time alone. As Paul held him, I decided to look at him, but not hold him. I looked and I couldn't believe it. He really looked like a fetus, his head was big and his hands were the size of the tip of my pinkie finger. It is weird to think that something so little could be moving inside of me and kicking me strong enough for me to feel him. The nurse came back in and we decided to put the baby under the warmer and asked her to bring the grandparents in. Once they walked in I slightly panicked and told them not to look at the baby. They all stood above my bed and cried. I didn't want them to look at the baby and think that he was scary looking. I was trying to protect my baby.

We made small talk for a little bit and then they said goodbye and went home around 9:30am. Once they left, Paul picked up our son again and brought him over to the bed and encouraged me to hold him. I didn't want to regret not holding him. Paul put him in my arms and we examined his little body together. His tiny legs and toes. He was definatly a boy and had a little penis. His belly was rounded and his skin was a dark brownish red. I couldn't belive that this was my baby, it just wasn't supposed to happen this way. We had a pastor from the hosptial come in to give him a blessing, which wasn't as comforting as I had hoped it would be. We decided it would be easier to say goodbye to our little guy and then let the nurse take him to get his measurements, foot and hand prints and photos taken, rather than leaving him in the room while I was discharged. We said goodbye and the nurse took him.
She showed us the mold that she made of his hands and feet. It was amazing! She did a fantastc job. She also gave us a certificate that said he weighed 3 ounces and was 6 1/2 inches long.

Looking back I wish we spent more than just a few hours with him, but we were so emotionally exhausted, not thinking clearly and we didn't know what we should do. I was discharged after lunch. The nurse gave me his blanket, a memory box with his little hand and foot prints inside as well as a CD with all of his photos. It was a horrible 29 hours that we spent at the hospital. The nurses couldn't have been nicer. They treated us with such respect. They treated us like parents, and were so gentle with our little man. It was bitter-sweet going home, I was so excited to see Andrew and Allison, but didn't look forward to starting this grieving process. I just wanted to be drugged for a few weeks and let the pain wear off, but life does not work that way. Once we got home, Katie and Paul's parents left. Katie had stocked our refrigerator with food and snacks. The kids were super excited to see us. It was wonderful to see them, but I just felt empty without having my baby in my belly. I wasn't pregnant anymore. I felt so sorry for myself.