Thursday, March 31, 2011
Now, I just can't sleep. I go to bed at 9:30 or 10:00. Then I think and I think and I think and I can't stop thinking. I can't turn off my mind. Sometimes it's about Bear. Sometimes it's not. I look at the clock. I see that it's turned into 11p.m. then I think some more. Oh and did I mention I get a bit cranky because J is snoring away next to me? His head hits the pillow and he is out. No lag time there. I look at the clock again...it's midnight. Then I look at the clock again and I must have drifted off because now it's 4a.m. Then I stay up until it's time for J to get up. Then I fall back asleep and get cranky when he wants to say goodbye to me.
What is wrong with me? Why can't I be one of those people that gets depressed and sleeps? I want to be one of those people. I hate being tired and cranky. I hate not having the energy to clean the house or make the bed. I want my energy back. Maybe that's a whole separate issue. Maybe that's part of the depression and not part of the sleep issue. Who knows. All I know is that I'm tired, cranky and I miss my baby.
Monday, March 28, 2011
Upon hearing the baby no longer had a heartbeat a well-meaning and very close to me person said this "I'm sorry you had a sucky day." Um seriously? Sucky day? What the hell? I found out my baby was dead and you are apologizing because I had a sucky day? In what universe is this okay? I actually got quite angry about it. I mean not to their face of course, but with my husband I just cried and told him how angry I was. Now to be fair, this person actually came around and ended up providing really fantastic support for us. I think it was just the initial shock of not knowing what to say. So this one ended well, but this was just an inappropriate thing to say.
What about this one? "You will make a great mom." Do you know how hurtful this is to someone that just lost their child? I won't make a great mom, I AM a great mom. Just because my baby didn't join us here on earth doesn't mean I'm not a mom. I carried that baby for 19 weeks and he was my CHILD. That makes me a mom. Even if I never have a child here on earth, I believe I get the right to be a mom. This almost implies that I screwed up somehow and don't get to be a "real" mom yet. UGH. I didn't screw up. I didn't drink or smoke or hurt my child in any way. I WAS a great mom to that child. Guess this person won't be sending me a Mother's Day card huh?
Or...."Everything happens for a reason." Sure in theory this is nice to say, and maybe I've even thought it. It's just a bad thing to tell someone though. Especially someone with really raw emotional pain. I want to scream at people who say this "REALLY??? WHAT WAS THE REASON?? WHY DO YOU GET HEALTHY KIDS AND I DON'T? WHY DIDN'T THIS HAPPEN TO SOMEONE ELSE??? WHY DOES IT HAPPEN TO ANYONE? WHAT POSSIBLE REASON COULD THERE BE FOR BABIES TO DIE??" I could go on all day about the things I would like to yell at these people. And while yes, I may sort of get a handle on believing this at some point, you telling me isn't going to help me at all.
How about telling a Buddhist that their baby is with God? Seriously? I'm a Buddhist. I don't believe in the big guy upstairs with a white beard watching us all. I believe in a different type of afterlife and moving on. I believe my baby has gone back to the universe. I don't think he's in heaven the way you might think. I don't believe in heaven. Why do people assume that everyone believes in heaven? It would be nice to believe that, but don't be pushing your religion on me in my time of grief. I will accept the statement "I'm praying for you" though. I feel like that's more appropriate than talking about the baby being in heaven. I believe in prayer for every religion. Buddhists believe in prayer. So rather than tell me about my baby in a heaven I don't believe in, maybe you could say you are praying for me. Although as a side note, someone did say something that comforted me that was kind of along these lines. Someone I know recently had a baby and I sent them a small package. She emailed me on Facebook and thanked me for the package and said how sorry she was. She said something about how her baby was taking a nap and had a funny smile on her face and was in dreamland talking to Bear. I'm not sure why, but this really gave me peace. In fact, I'm crying as I write it. First cry of the day!!!! 3p.m. I'm making progress. Oh wait, I digress....I was talking about the comment my friend made. So anyway, for some reason that comforted me. It wasn't an overtly religious thing, just more of a comforting thought. Back to things people said that annoyed me...
Or the obvious statement that something was wrong with the baby and it was for the best? OMG. Yes, I know something was wrong with the baby. Duh. That's why the baby died in utero. Ummm..yeah...that's why I don't get to hold my baby August 1st like I was supposed to. That's why they are doing an autopsy and pathology. Duh. Yes, I realize that something was wrong with the baby. And NO, it isn't for the better. Know what would be better? Me getting a living baby in August. Yep, that would be better.
Lots of people knew I wanted a baby and knew I had wanted one for a long time. So I've had quite a few people ask me when I can try again. I get that. I don't really get angry so much about that one. BUT, I wanted this baby! Not another baby, this baby. I know that people don't mean anything bad by it, and I think about trying again myself. But I really just wanted this baby. It's like Bear is replaceable or something. I can just get pregnant again and replace him with another baby and all will be fine. That's not how it works. I wanted him. Plus, I'm 35. I'm no spring chicken. I don't have a ton of time for having another baby. The timing on this baby was perfect. He was due in August giving J time with us at home for the birth and giving me plenty of time to try for #2 before I turned 40. My odds of bad things happening just get bigger the more time that goes by.
So now that I've complained about the many things people said that were bad, let me explain how some people really came through for me. I had people send me emails every day, we recieved really nice cards, some people brought us food, some people offered just to sit with me. There was a lot of nice support. In fact, more support than I could have ever imagined. It reminded me to be more aware of others. To send cards and say thank you. To put myself out there when others are in need.
A few things really stood out in terms of nice things people did or said. One of my aunts sent me an email every single day after she found out. She just said something like "I'm thinking of you, Love you." It was so comforting. My lovely cousin sent me a beautiful boquet of tulips my first day back to work so I would know she was thinking of me, and she also texted me that day to check on me. My sister and my mom both brought me food a couple of times. That was really helpful, because I wasn't eating much. My mom bought me a pretty amber necklace and said it was in memory of Bear. A friend of mine said "a lesser womb would have miscarried long before 19 weeks," it might not make everyone feel good, but I thought that was a sweet sentiment. So many wonderful things stand out. I'm sure I just focus on the negative because it's easy to be angry. So easy. So I'm glad I decided to include some of the good things.
Today it's been 3 weeks since I found out my baby was no longer alive. Today I would have been 22 weeks. Today I would have known if he was a boy or a girl (I just use a generic "he" until we find out for sure). Today I would have had a cute, growing pregnant tummy. Instead, I'm sad--with no more pregnant tummy. In fact, I've lost more than just my pregnancy weight. Instead of all of those things, I'm writing a post about the weird things people said in the last three weeks about us losing a baby. Instead of anticipating my next prenatal doctor's appointment, I'm anticipating a phone call about autopsy reports. Life isn't fair.
Thursday, March 24, 2011
To Whom It May Concern:
We recently visited Strong Memorial Hospital. We were referred there from Dr. Lubell’s office at Guthrie, for a level two ultrasound and amniocentesis after receiving a positive risk screening for Down’s and T18 during our pregnancy. The staff treated us with such care and compassion during what turned out to be the worst news of our life that we felt we had to share our experience.
We live in rural PA and don’t have many medical resources in our surrounding area. Once we heard the news of the positive risk screen we were hoping to get in to see someone quickly. Our local Perinatologist’s office scheduled us an appointment for 2 weeks out. I was distraught about the idea of waiting two weeks to get in to see the doctor and then wait another 2 weeks for amnio results. I was 18 weeks pregnant at the time we found out about the positive screen and wanted answers quickly so we could start making decisions about what to do with the pregnancy if it turned out the baby had a fatal trisomy. I asked my doctor’s office if they could give me another referral and try to get us in somewhere else sooner.
Only a few minutes later I received a call from Diane at Strong Reproductive Genetics. She was my first encounter with the hospital and left a positive impression on me. Diane was very calm and helped make me an appointment early the next week. It was Thursday when she called me and she made us an appointment for first thing Monday morning. I was crying when we talked on the phone and Diane reminded me that positive risk screens happen all the time, and often turn out to be false positives. She reminded me to be optimistic and take it one day at a time. She was caring and compassionate on the phone.
We made it to our appointment Monday, March 7th and talked for a long time with Jeanne Peterson, the genetics counselor. Jeanne was nice, caring, and knowledgeable and talked with us for as long as we wanted. She answered all of our questions and didn’t make us feel like we were wasting her time. She treated us as though we were her only patients that day. It’s nice when someone in the medical community gives you their full attention! I would highly recommend Jeanne to anyone who needs a genetic counselor.
Next we made our way to the ultrasound area and were ready to have our level two ultrasound. Here is when things started to go wrong for us personally. During the ultrasound the technician found that there was no longer a heartbeat for the baby. My husband and I were devastated. We thought we were assessing risk for T21 and T18, not finding out that our baby was already gone. The technician gave us a while to grieve alone and went to get the doctor. Doctor Glantz came in and asked if he could continue looking on the ultrasound so that he could see if he could give us some answers as to why the baby passed away. He found a few indications of cystic hygroma, hydrops and a possible chromosome abnormality. Doctor Glantz then asked us about our regular ob/gyn and how we wanted to proceed. He offered to call our doctor for us and make arrangements. Dr. Glantz contacted our regular ob/gyn and found out that at Guthrie my only option was a Labor and Delivery. Since this was my first pregnancy and first child I wasn’t interested in my first experience with labor being to deliver a stillborn. Dr. Glantz said he would see if he could arrange a D & E with one of his colleagues and left again to make those arrangements.
It’s hard enough finding out that our much wanted and loved child passed away at 19 weeks, but it’s even harder to imagine having to make all of the arrangements to have surgery on my own. Dr. Glantz took care of everything. He was compassionate, caring and very realistic about why this happened and what our next steps should be. I’m grateful to his care during this time. I couldn’t have asked for a better provider. He made the traumatic personal experience as painless as possible. I was astounded at the care we received in his hands. I have already talked to my regular ob/gyn about using Strong Memorial in the future for any perinatology needs a future pregnancy might have. I would be honored if Doctor Glantz would be able to provide care in any future pregnancies.
Next, we had to have the two day D & E procedure. I met Doctor Stanwood and her assistant Bev. They were both so compassionate and wonderful. Dr. Stanwood told us we were her last appointment of the day and she would stay as long as we needed to answer questions and reassure us. She explained the procedure, talked about why we might have lost the pregnancy, and discussed future pregnancies. She was compassionate when inserting the laminaria and so sweet about answering questions.
We arrived the next day for the actual procedure. I’ve never had surgery or anesthesia and didn’t know what to expect. The surgical staff continued my wonderful experience. They were all so compassionate. While they prepped me I was crying and not doing so well emotionally. Every person I came into contact with told me they were sorry for my loss and some even gave me hugs. I felt so cared for during this experience. I wish I had been aware enough to get the names of everyone that helped me during my care. I would like to thank each and every person for the compassion and caring they showed during this experience.
My husband and I went through the worst thing we can imagine at your hospital. Your staff made the experience the best it could possibly be under the circumstances. Diane Bater, Jeanne Peterson, Dr. Glantz, Dr. Stanwood and Beverly were all wonderful. Not to mention the countless other people I came into contact with during my time at the hospital. I want to thank you so much for the compassionate, respectful care we received at Strong Memorial Hospital. I hope you will pass our appreciation on to those who made a difference during our experience!
Our Sincere Appreciation,
Amy and J
When we were called in for our appointment our nurse (same girl we always see) asked how I was doing and how everything was. I sensed that something was off the second I saw her. Then she took my weight, took a urine sample and sat us in the exam room. She said "is there anything new going on." I told her "no" and was really confused--she really didn't seem to know I wasn't pregnant. She stepped out to take a phone call and I looked and J and told him that I didn't think she knew that we lost the baby. She came back in and said to me "Is everything okay? You don't seem very happy" or something like that. I started to cry and asked her if she knew we had lost the baby. She was completely surprised. She hadn't known and I think she thought I was being cranky with her. She said that she bet that it must have been really hard and she gave me a big hug. She had to switch the room we were in because we were in a room meant for a pregnancy checkup and not an ob/gyn appointment.
In our new room I had to strip down and sit on the table. We sat there for ages like that waiting for the doctor to arrive. When he finally came in he asked how we were doing and apologized for not communicating our loss to his nurse.
The exam seemed to go okay. He said everything was back to normal physically and I seemed to be healing okay. He talked with us about the pregnancy, future pregnancies and how we would proceed. It felt to me like he was being a little defensive with us about everything, but that might have been just my perception and not a reality. I don't blame them for anything that happened, but I was really interested in how we would proceed in a future pregnancy. He just kept using the word "inefficient." Seriously. Weird huh? He said "Pregnancy is just an inefficient thing." He told us stories of others he is currently seeing with babies with issues. Most of the issues weren't age-related....apparently just mine (more on age-related later). Ugh. Inefficient. It's awesome being told that your baby didn't make it because pregnancy is "inefficient."
He urged us to be optimistic and to just look at a new pregnancy as a new start and not try to associate all of the pain of the first pregnancy with a new one. He said it would be a completely separate occurrence and odds are that it will turn out just fine. J and I had talked about getting a new doctor for a future pregnancy. Honestly, I think I'll just stick with this doctor though. I don't think it really makes much difference. Plus each time I have to change doctors I go through a whole new anxiety of people checking out my hoo-ha..ya know?
I did hear the words "Age-related" much more than I would have preferred. I feel like I'm being punished for waiting to start my family. I waited until I was married, financially secure and 100% ready for children. It's not fair that I'm ready and in this situation. So if I had gotten knocked up in my teens or early twenties and wasn't ready it would have been a piece of cake. I may have been a horrible mom to a child at that point in my life, but my body was ready. It's just not fair. Such a stupid thing to say huh? It's not fair? Since when is life fair?
I wanted to write about my follow up while it was fresh in my mind. I still need to process how the different people in my life have dealt with our loss and the things they said. Hopefully I can get to that in my next post.
Moral of this post though? Pregnancy is inefficient. I waited too long to start my family. And...Life isn't fair!
Tuesday, March 22, 2011
This beautiful arrangement of tulips is one of the many supportive gestures we received from friends, family and coworkers. I just can't believe how wonderful everyone has been as we've dealt with this loss. We've received calls, texts, cards, emails, flowers, and more from people. The interesting thing is the variety of ways that others are choosing to deal with this. For me it's a no brainer. I'm devastated, I'm broken and I'm forever changed. I get that this isn't the case for everyone else though. I know that if I were the friend of someone this was happening to, I wouldn't have known how to deal with it-or how to support them. I'm seeing that with some people. I'll try to share more about that tomorrow when I post.
The doctor said it seemed to be a genetic anomaly. A "lightning strike" kind of thing. The doctor said that there wasn't anything I could have done to prevent it. He explained that when the sperm and the egg met they just didn't divide right. It was predetermined way back in November when we conceived. So all that time I was so happy about being pregnant and carrying my sweet baby, it had already been predetermined that he would die.
I feel like shouting a big "FUCK YOU" at the universe for that one. Seriously? Like I'm such a bad person I don't deserve a baby--or at least that particular baby? I've been a good aunt to my nephews and nieces. I've been a good cousin (but more like an aunt) to some of the younger cousins that I'm close to. I've been a good stand in aunt to the children of my friends. Not only that, but I'm a reasonably good person. I don't lie, cheat, steal or treat people poorly. Why did this happen to me? Not only don't I lie, cheat, steal or treat people poorly, but I waited until I was emotionally and financially ready to have kids. I waited until I was married. I waited until I was 100% sure that is what I wanted in my life. This baby couldn't have been more wanted.
And what about my health? I take care of myself. Yep. I do. I do yoga, I teach aerobics, I eat a vegetarian diet. I don't smoke at all or drink excessively. I don't do drugs or eat a bunch of junk food. Why me?
So on top of the general "why me?" questions I've been asking, I'm also questioning every single thing I did during my pregnancy to see if I could have prevented this. Yes, I totally get that the doctor said it wasn't my fault. Does that stop me from over analyzing every single moment to see if I could have prevented this? No, of course not.
So while I was pregnant, I taught 5-6 aerobics and yoga classes per week. Did I work out too much? I thought I was being healthy and staying active. I was sure that would all help me to have a great labor. Now I question whether or not it was too much. I know plenty of people in the fitness industry that did the same, if not more and had healthy babies. I know of ladies that taught right up until labor. So I just assumed it was okay. The doctor approved my activity level. He said if it's what I had been doing prior to getting pregnant it was no problem. I was just supposed to watch my heart rate and my intensity level. No problem, that's what I do. But now, I question myself constantly if it was just too much. I've given up all of my classes and have no idea when I'll be ready to teach again. I can't put on my happy Zumba face any longer, or my serene yoga face. It's a farce for me at this point.
Was I too stressed out? We had some really bad family stuff go on in early February. The family stuff brought back a lot of things from my childhood and really caused me great emotional pain. I was very upset over it and cried for a few days on and off about it. I was upset enough that J was worried about me. Could my stress have caused problems with the baby? I actually had a doctor's appointment right after all of the family stuff happened and I asked my doctor how much stress like that would affect the baby. He said as isolated incidents it wouldn't cause any problem, but that if I had a chronic problem with depression or anxiety we would need to discuss treatment options. I wasn't chronically depressed; I was just reacting to something going on in my family. Still, I wonder.....
What about sleeping on my belly? Did I do that too late into the pregnancy? I love sleeping on my stomach. My husband kept telling me to stop. I did it anyway. Did I hurt the baby? I had asked the doctor about this. He said when it got uncomfortable to stop doing it. Well, it hadn't gotten uncomfortable yet.
Then, after I go through some of these things, I get angry. Angry at the people who smoke and drink and don't even want their babies. Seriously? I wanted this baby more than anything else in the world and he was taken from me. How many people out there don't take care of themselves while pregnant? Or choose to abort babies they don't really want? Why is it fair that my much loved, much wanted baby was taken from me, while those other women get healthy, happy babies when they don't take care of those babies even when in utero?
Yes, I know this is not productive. I realize it's not helpful. But it is something I need to work through. I know the doctor said that it wasn't my fault. I know he said that it was predetermined at conception. I get that. I still need to work through some of this on my own. At this point we don't even know for sure that it was a chromosome problem. We have to wait for the amnio, autopsy and pathology report. We were told it would be 2-4 weeks for that. Tomorrow will only be 2 weeks since the D & E, so we still might have quite a while to wait for that information. Then what if there isn't a chromosome problem? What if they have no idea? Will I be stuck in this "what did I do wrong?" mentality forever? I am slightly comforted by the fact that it seems like there was something wrong with the baby, and not with me. I have heard stories about women with cervix problems, placenta problems, Rh problems etc. They can't carry the babies because of a problem with their body. I'm comforted to know that my body seems capable of carrying a baby; it's just that the baby wasn't healthy.
I can't believe how much I loved Bear. 19 weeks I got to carry him and love him. I'm grateful for those 19 weeks. I would give anything to go back to day 1 and relive it all just to have those 133 days back--even if it produced the same end result. I never knew how much you could love a baby before it was even born. Now I know how much you can love a baby when they are dead.
Monday, March 21, 2011
I wanted to test blogging from my phone. I also wanted to try adding a picture. Here is a picture of me pregnant with baby Bear. I was about 18 weeks here and we found out he was gone at 19 weeks.
The above paragraph did get sent from my phone without the attached photo so now I'm editing this via my computer. I can't figure out how to get my phone to send pictures to the blog. I can get my phone to send the text, but not the pictures. I guess it's work in progress. So I'm going to try uploading the picture via my computer and see if I can figure that out. Here goes.
Yesterday I went with my mom, my sister, and her family to go paint some ceramics. It was my mom's idea. It seemed like it would be fine, and I thought that I could handle it. Well, at the next table over from ours there was a group of about 8 women. Two of them were visibly pregnant. They were talking very loudly about baby names, dates, epidurals etc. As I was painting my project I slowly started to cry. Tears were just streaming down my face. My sister was the only one that noticed and sent her husband out to get a tissue for me. Eventually it was just too much. I had to get up and go outside. I couldn't stop the tears or the sobbing. I had to have a moment to compose myself. I wonder how long it will be like that?
Finally I figured out how I feel though. Raw. Just raw. It's like an open wound that hasn't healed. Maybe it's barely forming a scab. Each and every time I get reminded, whether it's my own thoughts, the words of others etc., the scab that started to form gets ripped off. Raw.
I wonder when the scab will actually just continue to grow and not get ripped off each time I encounter a pregnant woman, or see one of the photos that my many friends are posting on Facebook of their pregnant bellies or brand new babies. How long will it take? When will it end?
One part of me wants it to last forever. I never want to be done greiving my baby. Another part of me wants it to end right this second. I want to be done being sad, and I want to count my blessings and remember how great life is overall. I bet it will be somewhere in between though. I'll grieve forever in my own way, but I'll also move on and enjoy life again.
I am hoping for a baby in my life. We were told we had to wait about three months to try again so that the body (and mind) can heal and my hormones can regulate themselves. I hate that it has to be so long. I'm not getting any younger. Not only that, but other people aren't going to hold off having babies or getting pregnant just because of me. Not that I would want them to either. Just that each one will hurt me. It's so hard to explain that to people. The hurt isn't about them at all. It's only about me. Usually I'm not so selfish, but that's just how it is. The hurt I feel when I see those pregnant bellies, or hear about a new baby, or hear someone is attempting to get pregnant sends a knife stabbing into my heart. It's just about my own personal envy, jealousy, grief...and I'm not sure what else. It's not fair to those people and it's not a very noble feeling. But I'm allowing myself to feel what I feel. It's liberating.
I did live much of my life just having feelings when it was convenient for me. I'm very good at hiding and burying my feelings. I'm a champ at it! I used denial of my feelings as a defense mechanism for a very long time. I think it stems from my childhood. I grew up as the daughter of an abusive alcoholic. Learning to mask my feelings and pretend everything was okay was a solid way to get through the days. Now though, doing that would invalidate the life of that little baby I carried for 19 weeks. I need to feel every single thing that I feel. I need him to know that I grieved him and I need to know that I allowed myself to finally feel exactly what I was feeling when I was feeling it.
Friday, March 18, 2011
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.