Erica Stone
05-06-2006, 11:21 PM
As I sit here on the eve of Matthew's first birthday I realize what a different person I am from a year ago. I will never be able to go back to that, but in some ways I wouldn't want to. There is a sharp contrast of what was supposed to be versus what is, and even now as my second baby is kicking away inside me I am overwhelmed by this reality. There are some things I am grateful for with Matthew's death in a funny sort of way. Mostly, while I wanted to have him more than anything, I am grateful that he did not suffer. He had so many problems - restricted growth, fused kidneys, enlarged and thickened heart, brain developmental issues, musculoskeletal issues, massive edema... - that for him to have lived even a short time would have been an awful exsistence for him. I am also grateful for the opportunity given to us by Cheryl and Sandy. The timing of everything couldn't have been planned better.
After an abnormal quad screen and 4 subsequent visits to the neonatologist I couldn't take the "maybe something is wrong, and maybe it's not" answers anymore so I consented to an amnio. (As a side bar, I had seen 3 different doctors during those 4 visits.) After the results came back as normal, we were incredibly relieved and relaxed. I actually got mad about the whole thing, thinking these tests were a big waste of time and energy and got us all worked up about nothing. I was feeling so good, in fact, that I almost decided to skip my follow-up with them. The results would have been the same, but we really would have been caught off guard. So this 3rd doctor was talking to me as if I knew more information than I did. He was talking about delivering in a different hospital and coming to see them for weekly monitoring - he must have thought I was nuts because I was super-calm and kept saying, "I just really don't see the point", and "I don't think that's necessary." All I knew was that the amnio said the baby was fine and that's all I cared about. The u/s nurse must have realized I didn't have a clue because as I was walking out the door he called me back into the room and said he had to tell me something else. I had decided (much to Tom's dismay) not to find out the baby's gender until delivery. The doctor, very nervous and twitterpated (a made up word, but really descriptive) asked me if there was a reason I didn't want to know. When I told him "because I want a surprise", he started talking but not really saying anything. Finally the nurse asked if I knew what he was talking about and I said "no, so you might as well just spit it out." That's when he told me that the baby's sex according to the amnio did not match what they saw on the u/s. Confused, they told me that his chromosomes were XY, but he wasn't presenting that way externally. That was pretty devistating, but I had no idea that was only the tip of the iceberg.
I left that office thinking that was the only thing wrong - devistated, but this happens and there are surgical options. I called Tom and broke down, and went to work. I needed more information and called my OB's office, but was so upset I told them to have her call me the next day (Friday). When she did was when my whole world ended. After giving me even more detail on some of the issues that had come up she literally knocked me to the floor when she said, "Erica, I'm concerned this baby isn't even going to make it to delivery." I couldn't breathe and I couldn't talk, and I couldn't think. How could this happen? The amnio said that everything was fine!! I think Tom was in denial and kept hoping taht it was all a mistake, but I knew it wasn't. She arranged for me to meet with the head neonatolgist who I had seen twice, and voiced her concerns that too many people had seen me and not relayed information properly. We went to see him the next week (Thursday) and by that time things had gotten even worse. The baby had developed massive swelling around his head and face, and his movements had lessened considerably. The best case scenario at that time was IF we made it to delivery the baby would be severely mentally and physically handicapped. That was a BEST CASE. The doctor was great and really wanted to find out all he could - he had additional tests run from my amnio and diligently tried to find a known syndrome or cause of his multiple anomolies. They determined that The XY was correct, but the baby's body wasn't recognizing the testosterone running through it. At that time, his symptoms did not match anything on record.
So, now faced with this awful situation, we decided that the best thing for us to do was to terminate this pregnancy. It was the absolute worst decision I've ever had to make, but for us it was the right one. To us it wouldn't be fair to this baby to have to endure machines and surgeries and who knows what else. The problem was that I was almost 26 weeks so there weren't many options. In addition, the doctor also wanted to make sure we had an autopsy done. Here's where the timing thing comes in... He was so concerned about it, that he called us the next day (Friday) to come in to the hospital and have me deliver there. (I have a strong feeling that he knew the baby wasn't going to make it under any circumstances.) So in we went, freaked out and not sure of what was going to happen. I was so upset that I even wanted them to put me under. At that time, I wanted no memory of any of it - I thought that the faster I got through it the better off I'd be. I may have mentioned in other posts that I have had debilitating issues with death my whole life and I thought that if I were to see of touch or hold this baby it would literally wreck me for the rest of my life. I do wish that the nurses would have pushed me a little bit harder to do those things, but I can see why they didn't. After a few rounds of Pitocin , I delivered the baby on Saturday afternoon. One thing that gave me a small sense of relief was when Tom asked the nurse if the baby was born alive and she said no. It was awful to hear her say that, but the weight that was lifted off of me was was enormous. When they offered to take a few pictures for us, we consented, but said we weren't going to look at them. Finally, Tom changed his mind some after talking to his mother. Our families were flying in and she said that she absolutely wanted to see and hold the baby. After he told me that, he said that he might want to see him, too. I decided that we were in this together or not at all, and we began the process by looking at the pictures the nurse had taken. Even on the small digital screen of the camera, they rocked me to my core. I didn't know what to expect, and they had cleaned him up and dressed him in a little blue outfit and hat and wrapped him in a lamb blanket we had brought with us. After a while we were ready to see him in person and we were taken down the hall past a series of beautiful baby portraits (it's amazing what you remember in stressful situations - unbeknownst to me the were Sandy's portraits) and into a private room. We stayed in there a while, and mustered up the strength to really look at him. He was so tiny - one pound, one ounce. I managed to touch him through the clothing and touched his face and his hand, but I was unable to pick him up or undress him to get a really good look. For someone who only hours earlier wanted no memories at all, I thought I had done pretty well. I was discharged that evening. Unbelievable that all this had happened. The next day was Sunday and after crying and not sleeping all night - as well as the whole previous week - I looked through the paper as a means of distracting myself. Did anyone else go through roller coaster times of utter dispair and grief followed by a wierd calm? I was in one of those calm states as I browsed, becoming increasingly annoyed that there was baby stuff all over the newspaper. In ads, in articles - I didn't realize it right away, but it was Mother's Day. Nice. Thanks a lot. Then this article and photo catch my eye. The headline had grief or devistation or healing in it, and I knew it would be something that would make me cry. Once again, thanks, but I have my own thing to cry about - I don't need someone else's. Here's the timing thing again... Tom and I had decided that we would name the baby and have a funeral and a burial after the autopsy. On Monday as he was about to throw out the Sunday paper I grabbed the article that I didn't want to read the day before. It was an article on NILMDTS. All of the sudden everything clicked. I HAD TO contact these women. It all made perfect sense and helped me realize that I would be missing an opportunity I would never have again. All of the sudden I NEEDED to hold my baby and have these memories, as painful and as awful as they might seem. I was nearly jumping out of my skin to have Tom make that phone call.
Sandy and Cheryl and Chantal came to the funeral home and were so wonderful. It was as if they had been doing this for years - I even had to re-read the article to realize that Cheryl had lost Maddux only a few months before. It was Sandy actually, that put me at ease about Matthew. Even though I knew I needed to hold him, I was actually afraid to pick him up. When Sandy picked him up and handed him to me I felt so much better. I would have felt so awful had I let that opportunity pass me by. I was in awe of Cheryl and how calm she was telling us about how she shows Maddux's DVD to people. After I received mine, I understood. I am so grateful to have my beautiful images and I look at them constantly.
In the end, they were unable to find a cause of death for Matthew. Good and bad - good because it's probably not genetic, and bad because it would be nice to have an explanation. I cannot believe that it has been a year. I never imaginied I'd be able to make it this far, as part of my life has been permanently frozen in time. At this point I don't feel the debilitating panic I once had regarding death, maybe because I had to deal with it in ways I never anticipated. I never imagined I would have the love I do for my baby, especially since he is not here with me. If it's possible I love him more every single day. I kiss his picture every night before I go to sleep and have reminders of him with me wherever I go. I hope I am able to contribute in some small way to the healing of another family through this organization the way my family and I have been helped.
Matthew Joseph Stone Ruffles
May 7, 2005
After an abnormal quad screen and 4 subsequent visits to the neonatologist I couldn't take the "maybe something is wrong, and maybe it's not" answers anymore so I consented to an amnio. (As a side bar, I had seen 3 different doctors during those 4 visits.) After the results came back as normal, we were incredibly relieved and relaxed. I actually got mad about the whole thing, thinking these tests were a big waste of time and energy and got us all worked up about nothing. I was feeling so good, in fact, that I almost decided to skip my follow-up with them. The results would have been the same, but we really would have been caught off guard. So this 3rd doctor was talking to me as if I knew more information than I did. He was talking about delivering in a different hospital and coming to see them for weekly monitoring - he must have thought I was nuts because I was super-calm and kept saying, "I just really don't see the point", and "I don't think that's necessary." All I knew was that the amnio said the baby was fine and that's all I cared about. The u/s nurse must have realized I didn't have a clue because as I was walking out the door he called me back into the room and said he had to tell me something else. I had decided (much to Tom's dismay) not to find out the baby's gender until delivery. The doctor, very nervous and twitterpated (a made up word, but really descriptive) asked me if there was a reason I didn't want to know. When I told him "because I want a surprise", he started talking but not really saying anything. Finally the nurse asked if I knew what he was talking about and I said "no, so you might as well just spit it out." That's when he told me that the baby's sex according to the amnio did not match what they saw on the u/s. Confused, they told me that his chromosomes were XY, but he wasn't presenting that way externally. That was pretty devistating, but I had no idea that was only the tip of the iceberg.
I left that office thinking that was the only thing wrong - devistated, but this happens and there are surgical options. I called Tom and broke down, and went to work. I needed more information and called my OB's office, but was so upset I told them to have her call me the next day (Friday). When she did was when my whole world ended. After giving me even more detail on some of the issues that had come up she literally knocked me to the floor when she said, "Erica, I'm concerned this baby isn't even going to make it to delivery." I couldn't breathe and I couldn't talk, and I couldn't think. How could this happen? The amnio said that everything was fine!! I think Tom was in denial and kept hoping taht it was all a mistake, but I knew it wasn't. She arranged for me to meet with the head neonatolgist who I had seen twice, and voiced her concerns that too many people had seen me and not relayed information properly. We went to see him the next week (Thursday) and by that time things had gotten even worse. The baby had developed massive swelling around his head and face, and his movements had lessened considerably. The best case scenario at that time was IF we made it to delivery the baby would be severely mentally and physically handicapped. That was a BEST CASE. The doctor was great and really wanted to find out all he could - he had additional tests run from my amnio and diligently tried to find a known syndrome or cause of his multiple anomolies. They determined that The XY was correct, but the baby's body wasn't recognizing the testosterone running through it. At that time, his symptoms did not match anything on record.
So, now faced with this awful situation, we decided that the best thing for us to do was to terminate this pregnancy. It was the absolute worst decision I've ever had to make, but for us it was the right one. To us it wouldn't be fair to this baby to have to endure machines and surgeries and who knows what else. The problem was that I was almost 26 weeks so there weren't many options. In addition, the doctor also wanted to make sure we had an autopsy done. Here's where the timing thing comes in... He was so concerned about it, that he called us the next day (Friday) to come in to the hospital and have me deliver there. (I have a strong feeling that he knew the baby wasn't going to make it under any circumstances.) So in we went, freaked out and not sure of what was going to happen. I was so upset that I even wanted them to put me under. At that time, I wanted no memory of any of it - I thought that the faster I got through it the better off I'd be. I may have mentioned in other posts that I have had debilitating issues with death my whole life and I thought that if I were to see of touch or hold this baby it would literally wreck me for the rest of my life. I do wish that the nurses would have pushed me a little bit harder to do those things, but I can see why they didn't. After a few rounds of Pitocin , I delivered the baby on Saturday afternoon. One thing that gave me a small sense of relief was when Tom asked the nurse if the baby was born alive and she said no. It was awful to hear her say that, but the weight that was lifted off of me was was enormous. When they offered to take a few pictures for us, we consented, but said we weren't going to look at them. Finally, Tom changed his mind some after talking to his mother. Our families were flying in and she said that she absolutely wanted to see and hold the baby. After he told me that, he said that he might want to see him, too. I decided that we were in this together or not at all, and we began the process by looking at the pictures the nurse had taken. Even on the small digital screen of the camera, they rocked me to my core. I didn't know what to expect, and they had cleaned him up and dressed him in a little blue outfit and hat and wrapped him in a lamb blanket we had brought with us. After a while we were ready to see him in person and we were taken down the hall past a series of beautiful baby portraits (it's amazing what you remember in stressful situations - unbeknownst to me the were Sandy's portraits) and into a private room. We stayed in there a while, and mustered up the strength to really look at him. He was so tiny - one pound, one ounce. I managed to touch him through the clothing and touched his face and his hand, but I was unable to pick him up or undress him to get a really good look. For someone who only hours earlier wanted no memories at all, I thought I had done pretty well. I was discharged that evening. Unbelievable that all this had happened. The next day was Sunday and after crying and not sleeping all night - as well as the whole previous week - I looked through the paper as a means of distracting myself. Did anyone else go through roller coaster times of utter dispair and grief followed by a wierd calm? I was in one of those calm states as I browsed, becoming increasingly annoyed that there was baby stuff all over the newspaper. In ads, in articles - I didn't realize it right away, but it was Mother's Day. Nice. Thanks a lot. Then this article and photo catch my eye. The headline had grief or devistation or healing in it, and I knew it would be something that would make me cry. Once again, thanks, but I have my own thing to cry about - I don't need someone else's. Here's the timing thing again... Tom and I had decided that we would name the baby and have a funeral and a burial after the autopsy. On Monday as he was about to throw out the Sunday paper I grabbed the article that I didn't want to read the day before. It was an article on NILMDTS. All of the sudden everything clicked. I HAD TO contact these women. It all made perfect sense and helped me realize that I would be missing an opportunity I would never have again. All of the sudden I NEEDED to hold my baby and have these memories, as painful and as awful as they might seem. I was nearly jumping out of my skin to have Tom make that phone call.
Sandy and Cheryl and Chantal came to the funeral home and were so wonderful. It was as if they had been doing this for years - I even had to re-read the article to realize that Cheryl had lost Maddux only a few months before. It was Sandy actually, that put me at ease about Matthew. Even though I knew I needed to hold him, I was actually afraid to pick him up. When Sandy picked him up and handed him to me I felt so much better. I would have felt so awful had I let that opportunity pass me by. I was in awe of Cheryl and how calm she was telling us about how she shows Maddux's DVD to people. After I received mine, I understood. I am so grateful to have my beautiful images and I look at them constantly.
In the end, they were unable to find a cause of death for Matthew. Good and bad - good because it's probably not genetic, and bad because it would be nice to have an explanation. I cannot believe that it has been a year. I never imaginied I'd be able to make it this far, as part of my life has been permanently frozen in time. At this point I don't feel the debilitating panic I once had regarding death, maybe because I had to deal with it in ways I never anticipated. I never imagined I would have the love I do for my baby, especially since he is not here with me. If it's possible I love him more every single day. I kiss his picture every night before I go to sleep and have reminders of him with me wherever I go. I hope I am able to contribute in some small way to the healing of another family through this organization the way my family and I have been helped.
Matthew Joseph Stone Ruffles
May 7, 2005