Another day to stain my head and heart.
I was a nervous wreck getting ready for my OB appointment today. This was my regular appointment, scheduled 4 weeks ago. I was short with the boys this morning. Benny wasn't eating as well as he normally does. Sammy wasn't putting his shoes on fast enough.
The biggest thing I feared was that another bomb would be dropped on us today. I was terrified that my doctor would tell me something like, "You could be in danger if you don't terminate this baby and it doesn't miscarry by a certain week." My doctor already told me Friday that since I was so far along in the pregnancy if/when I did miscarry I'd be at risk for hemorrhaging and it could be life-threatening if I didn't make it to the hospital in time. Again, not something you want to hear.
I knew in my heart that while I couldn't bring myself to terminate the pregnancy, anything like some 'life threatening' news for me would tip the scales and make the decision all the more agonizing to go against. I seriously considered things like, "Could I give my life for my child's if it truly came to that? Wouldn't that be the 'right' thing to do?" My concerns primarily came from a lack of information. The time we spent with the specialist after learning the news last Thursday was brief. It was all thrown at us so fast. I really left that appointment with a wall of unknowns in front of me. They barely discussed much of anything.
Back in grad school I learned of a theory called, "Uncertainty Reduction." In a nutshell it says that we can't stand to be in a state of uncertainty. We will do anything we can to fill in the gaps of the unknown with hypotheses, even rumors if it helps us to fill in those gaps with the 'known'. Anything to reduce the uncertainty that we are feeling.
I think that in an effort to 'reduce my uncertainties' I was trying to consider all options. What if I found out I'd be in danger if the baby didn't miscarry? What if I couldn't try for another child? I've had 2 c-sections already, how many can a woman have? Could I trade the life of a potential future child for this child with the 'lethal' prognosis? (Have I mentioned that I have grown to hate the word 'lethal'? It was used so frequently in the last few days by medical personnel.)
So as we waited for an eternity--an hour in the doctor's office--those questions chased each other around my mind. The boys watched Dora's Pirate Adventure on the DVD player we brought in for them. Because he had only 6 hours of sleep last night, Alex dozed off and on in the chair.
I can't tell you how long and how agonizing that hour was. I wanted to tell Dora to zip it. She sang with such gusto it was making me sick, literally. I grew tired of looking around the office. The brown carpeting. The medical certificates elegantly framed on the wall. The statues of doctors holding babies. The family picture showing my doctor, her husband and 3 smiling children. The collage of baby pictures showing her twins. The stupid pyramid clock on the desk was annoying. It was sliced at angles and rotated by seconds, minutes, and hours. How could anyone tell the time on that clock?
Finally the doctor came down the hall and introduced herself to Alex. She said she wanted to get all of her other patients out of the way so she could spend as much time with us as we needed. That was nice, but I wish they could have just told us to come later. It was so hard sitting there for an hour with nothing but worry and Dora pummeling your head.
One of the first questions she asked us was about our preference. I told her that I just didn't think I could terminate. It might make all the sense in the world to do so, but it just didn't feel right to me. I knew I could never live with my decision if I did do that. I know many women make this decision and I respect them because it is such a difficult decision to make. But we all make our own decisions that fit who we are. For me, it just was not something I could do.
From there we talked in-depth about everything that could happen and when. What if the baby miscarried in the next few weeks. What if the baby went past 20 weeks, how he would 'come out.' What hospital I would go to for what procedure. I know poor Alex's head was spinning--go to this hospital before 20 weeks but go to that one after because they have a level 3 NICU. Go to Labor and Delivery at this hospital. Go to the ER at that one.
We discussed having a 3rd c-section if my baby made it to near full-term. How he could still pass away because the birth process is so traumatic. Would I hold him for a few hours or if the neo-natologist gave him a quick assessment that saving his life was not possible, or if it was, he would be rushed to Dayton Children's Hospital where they have surgeons standing by but I would not be if anything were to go wrong there.
We discussed his chances. We discussed all of the things wrong with him. There were four primarily: 1- thickness behind the neck which could signal different problems, but not necessarily mental difficulties like I first thought. In fact, at this time, they didn't see any specific brain or heart problems but it could have been to early to detect. 2- A portrusion in the abdominal wall--this is something like, "Omaphele" or something like that. It doesn't matter the exact word. I was happy to know that it was only the baby's small intestines which were outside but still enclosed in a sack, compared to other situations were some babies have all of their organs outside and no sack to protect them. I know it sounds strange, but sometimes you need even the tiniest of hope to hold on to. 3- Extra digits--not a problem. 4--A cleft lip and/or palate--again, something they could fix. I was happy that that was ALL they found. Again, you take what you can get and not seeing any obvious heart problems right away was something ever so tiny that I could hold on to.
At this point it was around 5:30 or so. We'd been at the doctor's office for almost 2 hours. Dora had finally been shut off. It was now time for my ultrasound to check on my baby. I told Alex that he could take the boys out since they wouldn't be able to handle much more.
The doctor came in while the technician was doing my ultrasound. I'm no expert but I'd like to say I've learned something from all of these ultrasounds. There wasn't a heartbeat. I knew it before they even told me. My baby was lying kind off all stretched out with one hand up by his face and the other down. His legs were stretched out. I kept hoping to see the little 'flicker' as I called it, I hoped to see the little heartbeat. They kept looking at different angles. The doctor came close to the screen. I asked, "We can't see the heartbeat, huh?" My doctor said, "No, Kim. I'm sorry."
Even though I knew this was possible, an onslaught of tears hit again. There was my precious little child lying dead in my womb. Never to be held by me. Never to be sung to Mommy. Never to feel Mommy's tears on his face as I told him over and over how much I loved him. Never to nurse at my breast. How could this be? How could he have died so quickly? And why on earth couldn't we have done the ultrasound first? Do you know that I actually apologized to the doctor for taking up so much of her time discussing options when it wasn't even necessary?
My baby had been so active last Thursday. His little ankles were crossed. He kicked his feet several times. He squirmed, wiggled and rolled. It was so beautiful to see. But today, he was limp. Lifeless. He looked like a child's doll just...lying there.
One thing touched me. My baby died sometime today. I hit 13 weeks today. My baby measured 13 weeks. That meant he was with me until sometime today. It gives me a small degree of comfort in knowing that. Maybe he died this morning. Maybe it was during our visit with the doctor. I'll never know but I am happy to know that he wasn't gone for long before we found out. I don't know why this brings me a small amount of peace but it does. Knowing when he died. I guess I feel closer to him somehow.
I asked one more time for pictures of my baby. They were so kind to give them to me. Again, they are not the best angle, nor as close up as I could like but they show my tiny little love in there all the same. I'll treasure those pictures forever.
I was the last to leave the doctor's office. Again, for the few nurses and staff who were left it was a hush as I exited. Glances and quiet that quite frankly I'm getting tired of walking through.
I had to yell for Alex in the boys from the parking lot. They were playing in the fall leaves in a small yard behind the doctor's office. The boys reached me first--smiles on their faces, colorful leaves in their hands and a joyous, "Hi Mommy!" echoing in the wind. Alex trudged up the hill behind them.
I told him, "He's gone." He looked at me. I said it again, "Our baby's gone." I could see the disbelief in his face. I knew he was utterly shocked that it happened so quickly. Before he took the boys out, I had told him how relieved I was that all factors were still equal, that I was so glad to learn that my life wouldn't be any danger or anything crazy if we didn't terminate, that no more bombs were dropped on us. He said that for him, nothing new came of today, it was all like last Thursday--hard all the same. Guess I shouldn't have thought like that because little did I know that the worst bomb of all would be dropped on me.
I go in to the hospital tomorrow for my D&C. I've always hated that word. It's disgusting and I don't even like to think about it. I took the option to be fully asleep during the 30 minute procedure rather than in a twilight sleep. I shudder to think what I would hear or smell if I was even faintly coherent.
Well, that's all for now. The final blow. Is my journey over? Oh no. It's just beginning. Trying to make sense of all of this. Trying to pick up the pieces and figure out what to do next. Trying to define a new 'normal' for us. Trying to conceive again. All of that is a journey that is yet ahead of me. It is the journey of motherhood.
Thank you again dear friends and readers for your support and prayers. It's helped me immensely. I do seriously hope that if you are going through any sort of crisis in your family, my words help you in some way.
I guess there's always a chance I could die tomorrow. The doctor told me that. Of course, it's slim but hah, you don't want to know what I think of odds anymore. If something like that were to happen? My prayers would be for a peaceful and loving life for my husband and precious boys. My joy would be knowing that I would soon be in Heaven with my darling infant son.
Until my next post, may you take one day at a time and may you celebrate each and every joy in your life--no matter how tiny!
Kim
Heart
Mommy's heart for Baby Jacob
Monday, October 25, 2010
Sunday, October 24, 2010
Learning to Listen for God
In an effort to not start panicking about tomorrow's regular appointment with my OB/GYN, I've decided to write a bit about what's happened in the last two days--specifically about how I am truly try to hear what God may be telling me.
Earlier I wrote about how we shopped for Halloween costumes following my ultrasound in which they gave my darling baby a death sentence. We stopped at a thrift store to look for a dress that I could use as a Princess gown. I was in no mood to look and didn't find anything. Alex took the boys to the men's section and I held back to wait near the jewelry counter. In all of the times we'd been to this store, I'd never looked in the counter.
I walked up to it and glanced down through the glass. The very first thing I saw was a small, approximately 3-inch long gold bookmark with the words, "Be still and know that I am God." I couldn't take my eyes from the bookmark. Was this God speaking to me? How was it that I just so happened to look in a counter that I normally never look in? Why was it that I looked straight down at the very spot where the bookmark lay? It also dawned on me that the genetic counselor said that the baby was about 3 inches long right now--the same length as the bookmark.
I don't know how you know when God is talking to you. I've often wished that it was easier to hear Him. Maybe I'm too dense or often too preoccupied with my own life to hear His words clearly, I don't know. I joked with my mom that I wish it could be like it was in the Bible--where an angel comes to you and tells you exactly what to do.
One way that I've always believed He was talking to me was through experiences such as this--something someone said to me, something I read, perhaps something that seemed to drop in my lap such as this silly little bookmark. Some may think that it was just coincidence, that we see what we want to see. That's okay. Everyone is entitled to their opinion. For me though, I choose to believe that God WAS speaking to me--right then in the thrift store.
I waited for an employee to unlock the counter and to show me the bookmark. It cost 19 cents. I bought it.
When I told my mom later she agreed with me that it was a message from God. It seemed to bring me a small amount of peace--that I should just slow down and let God be in charge.
We went to my mom's house yesterday for her birthday, despite our troubled hearts. After the celebration, I sat down to finish writing an Advent Devotional which was due today. I'm a writer who writes short stories and have recently started writing devotionals for my Christian Writer's Group as well as for my home church. I discussed the verse that I had been given with my mom. We flipped through several Bibles to get different perspectives.
Mom pulled out her "Leaves of Gold" book-- a beautiful book of verses, poems, and pictures. The very page she just happened to flip to brought tears to her eyes and mine when she showed me what her finger lay on. It was the entire verse. "Be still and know that I am God..."
Again, you may feel that it was just coincidence. How is it that my mom literally stumbled on the exact verse? I choose to believe that God is talking to me during these first few days of panic, worry and extreme anguish. It's this verse that I'm going to hold tight to in the next 24 hours. I will continue to pray about it.
Tomorrow my husband and I go to talk in-depth with my OB/GYN about all of my options. We'll discuss pros/cons and risks. What I am most afraid of is that she will tell me that my life could be at risk down the road if the baby doesn't miscarry naturally or if I don't terminate. This was to be my third c-section. I don't want anything to sway making this horrible decision.
The past few days have been strange. Sometimes it's almost like things are 'normal', while other times it's like I'm in a nightmare that just won't stop.
Thanks for sharing in this journey with me. Your support and prayers are a tremendous help. I hope my words help you if you find yourself on a similar journey. You're not alone.
Now, it's time for me to "Be still...". I'll keep you informed of what we learn in our appointment tomorrow.
Kim
Earlier I wrote about how we shopped for Halloween costumes following my ultrasound in which they gave my darling baby a death sentence. We stopped at a thrift store to look for a dress that I could use as a Princess gown. I was in no mood to look and didn't find anything. Alex took the boys to the men's section and I held back to wait near the jewelry counter. In all of the times we'd been to this store, I'd never looked in the counter.
I walked up to it and glanced down through the glass. The very first thing I saw was a small, approximately 3-inch long gold bookmark with the words, "Be still and know that I am God." I couldn't take my eyes from the bookmark. Was this God speaking to me? How was it that I just so happened to look in a counter that I normally never look in? Why was it that I looked straight down at the very spot where the bookmark lay? It also dawned on me that the genetic counselor said that the baby was about 3 inches long right now--the same length as the bookmark.
I don't know how you know when God is talking to you. I've often wished that it was easier to hear Him. Maybe I'm too dense or often too preoccupied with my own life to hear His words clearly, I don't know. I joked with my mom that I wish it could be like it was in the Bible--where an angel comes to you and tells you exactly what to do.
One way that I've always believed He was talking to me was through experiences such as this--something someone said to me, something I read, perhaps something that seemed to drop in my lap such as this silly little bookmark. Some may think that it was just coincidence, that we see what we want to see. That's okay. Everyone is entitled to their opinion. For me though, I choose to believe that God WAS speaking to me--right then in the thrift store.
I waited for an employee to unlock the counter and to show me the bookmark. It cost 19 cents. I bought it.
When I told my mom later she agreed with me that it was a message from God. It seemed to bring me a small amount of peace--that I should just slow down and let God be in charge.
We went to my mom's house yesterday for her birthday, despite our troubled hearts. After the celebration, I sat down to finish writing an Advent Devotional which was due today. I'm a writer who writes short stories and have recently started writing devotionals for my Christian Writer's Group as well as for my home church. I discussed the verse that I had been given with my mom. We flipped through several Bibles to get different perspectives.
Mom pulled out her "Leaves of Gold" book-- a beautiful book of verses, poems, and pictures. The very page she just happened to flip to brought tears to her eyes and mine when she showed me what her finger lay on. It was the entire verse. "Be still and know that I am God..."
Again, you may feel that it was just coincidence. How is it that my mom literally stumbled on the exact verse? I choose to believe that God is talking to me during these first few days of panic, worry and extreme anguish. It's this verse that I'm going to hold tight to in the next 24 hours. I will continue to pray about it.
Tomorrow my husband and I go to talk in-depth with my OB/GYN about all of my options. We'll discuss pros/cons and risks. What I am most afraid of is that she will tell me that my life could be at risk down the road if the baby doesn't miscarry naturally or if I don't terminate. This was to be my third c-section. I don't want anything to sway making this horrible decision.
The past few days have been strange. Sometimes it's almost like things are 'normal', while other times it's like I'm in a nightmare that just won't stop.
Thanks for sharing in this journey with me. Your support and prayers are a tremendous help. I hope my words help you if you find yourself on a similar journey. You're not alone.
Now, it's time for me to "Be still...". I'll keep you informed of what we learn in our appointment tomorrow.
Kim
Friday, October 22, 2010
Oct. 21, 2010
Hello. Welcome to my blog. My name is Kim and I guess I finally found a topic for a blog that I've been wanting to start for awhile now. My hope is that through writing this blog, you can follow me along this journey. It's like a story that unfolds each and every day. I wish I could tell you that it will have a happy ending. All of the short stories I have written have happy endings. I have no idea how this story will end. It is the story of my sweet little baby that I carry in my womb. I hope that by experiencing this journey together, we all will have a better appreciation for the precious little lives that God gives to us. For parents going through similar situations, my hope is that this blog will serve as a way to unify our hearts and tears...and for healing for us all.
October 21, 2010. This day stained my mind and my heart. My appointment with the Perinatal specialists was at 1:45 PM. I was 12.5 weeks into my 3rd pregnancy and excited to soon be "out of the 1rst Trimester woods" so-to-speak. I'd been experiencing a lot of nausea and acid indigestion and really having a rough time making it through most days. I tried to eat something bland for lunch so my stomach wouldn't revolt during my 2-hour long appointment. My boys, Sammy (age 5.5) and Benny (almost 3) would eat lunch with Daddy while I was at my appointment.
The purpose of this appointment was an in-depth ultrasound that is usually done around 12 weeks or so of pregnancy. I'd had 3 ultrasounds already and no problems. Baby's heartbeat looked great. No problems. First round of bloodwork all looked great. I'm new to the 40-year old club, healthy and so excited to be pregnant with our 3rd child.
For the first 40 minutes of my appointment, I sat through an interview with the genetic counselor. Even though I'd had a neucco-screen before with my previous pregnancy, I hadn't ever heard of all of the facts my counselor threw out. She asked all sorts of family questions--our backgrounds, our family medical history, etc. We had nothing to report--I guess our histories were pretty standard, nothing earth-shattering to share. I even had my husband Alex, call his parents the night prior so he could find out if there were any cases of birth defects in his family. Since he was taking the boys to lunch and then coming back for the ultrasound portion of the appointment, I did my homework ahead of time.
After answering a gazillion questions--"Do you do drugs?" "No." "Do you drink?" "No." "Is there any chance you and your husband could be related?" (Guess you never know what they'll ask!) "No, ma'am," the counselor started explaining what they would be looking for in the ultrasound--measuring the thickness behind the baby's neck. A certain level of thickness could indicate that the baby may have Down's Syndrome, or Trisomy 21. I really was fascinated with her explanations of how the chromosomes come together and split to make the baby. Even though part of me was a nervous wreck inside, I tried to ask intelligent questions and to remember what she told me.
Finally, it was time for me to move on to the ultrasound portion of the visit. The counselor said, "Don't worry. I know all of this sounds scary but you have a 98% chance that everything is just fine." Sounded good, right?
I found my husband and boys and went in for my ultrasound. The boys, especially Sammy, were so excited to see the baby. Sammy loves learning about the human body so he was full of questions. He was a little chatterbox through the whole exam. I remember hoping that he wasn't distracting the technician.
After a couple of minutes, I asked the technician if she had found the heartbeat. She said yes and then I saw the little flicker of the heart. I laughed and said, "That's a good thing--always good to start with the basics!" The technician continued to push around my abdomen to get a good view of the baby from all sides. It wasn't the most comfortable ultrasound but I focused on watching the screen and seeing my baby squirm and wiggle--especially when she poked him to get him to flip this way or that way.
Let me stop to explain something quickly, I am calling my baby 'him' at this point even though we don't know the gender. I can't call him, 'it' because it's too impersonal. Because we have two boys and would most likely have a third, I decided early on to call the baby, "he". If the 20 week appointment confirmed it was a girl, then I'd be thrilled! But for now, I'm in love with my little baby boy.
After awhile, I noticed the technician doing some of the same measurements over and over. The neck thickness. The heart beat. The facial angles. I wondered in the cheeks were flat like the counselor explained was a sign of Down's Syndrome? I couldn't tell. When she was done, she said she would get the doctor and he would come in to explain everything to me. The boys were starting to get squirrelly and Alex was getting tired. I asked everyone to hang on for a bit longer.
The doctor came in, shook our hands and sat right down at the computer. I remember thinking that it was odd--I could have sworn the technician took my file out to him and they were gone for awhile. When I saw him leaning on the desk with his chin in his hand studying the screen, I knew for sure that something was wrong.
He asked me to undress from the waist down so they could do a transvaginal ultrasound. I knew things weren't right. When they came back in the room and he looked at the baby's stomach one more time, he had a dark look on his face.
With a sigh, he looked at me and started by saying, "We have some serious issues here. There are some severe problems." He went on to list things like: thickness behind the baby's neck, extra digits, a portrusion in the abdominal wall and a cleft lip. Never in my life could I have imagined hearing such things. He said that while we didn't know for 100% sure, chances were highly likely that my baby had Trisomy 13 or 18, but he was pretty sure it was Trisomy 13.
Suddenly the the genetic counselor's information and diagrams came flashing back in my head. I was thinking, "Wait a minute, isn't Trisomy 13 the most rare of the chromosomal abnormalities that a baby can have?" People sometimes say that time stops when they receive horrible news. I wish I could say that time did stop. I'd give anything if it just would have stopped. It didn't. It just kept ticking on with each second, each minute getting more and more unbelievable and awful with what the doctor told me.
The doctor put his hand on my arm and said, "I'm very sorry." Again, more red flags went off in my head. It was almost like I had to pump him for the 'bottom line.' It was then that he told me that my baby had an 80% chance of not making it to term. It was difficult for me to form words at this point, but I asked, "So, are you saying I'm just waiting for my baby to die? That it's just a matter of when and how?" He said, "Yes."
I don't think any woman ever wants to use the words, 'baby' and 'die' in the same sentence. It should be illegal. It was almost surreal as I used the words. The doctor said I would more than likely miscarry. Again, more shock. Don't the statistics say that once you see the baby's heartbeat, once you reach the end of the first trimester, you have something like a 95% chance that everything is good and that you won't miscarry? What good are statistics like that? Again, I asked, "So, I'm waiting for my baby to die? Is that what you're saying?"
My mind raced ahead through the next 6 mos. Trick-or-Treating is next weekend. My mom's birthday is this weekend. Thanksgiving. My husband out of town for various November weekends. Christmas. Do I just continue to live my life waiting for this awful thing to happen to me? It could happen at any time. How? How do I do that? How do you continue to get bigger, wear maternity clothes and at a time when you should be getting things ready for the baby, instead prepare yourself for your baby's death?? How? How do I do that?
Of course the doctor ran through my options--have more testing done to confirm which chromosome was extra, wait and do nothing, or terminate the pregnancy. I shot the testing down right away. If they weren't even going to do the finger-prick blood test on me because things were so obvious on the ultrasound, why should I go through more tests to hear that everything is what they thought? It sounded pretty bad as is. The counselor said that even if it wasn't Trisomy 13, it was probably something else very rare.
That left me with my other options to consider. I always knew that termination was never something I could do. I am praying for guidance right now. I have my standard doctor appointment in a few days and I hope to get more questions answered.
Before we left the ultrasound woman, I asked the technician for my pictures. She had told me that they would be taken at the end and I had asked her twice for them. She looked uncomfortable and printed three from my exam. One was from the top down so you couldn't even see my baby. The other two were vague, but still show my baby. I thought, every other woman left here with baby pictures, why shouldn't I? It was just all so sad. They left with smiles, I left with a face streaked full of tears.
Finally, it was time to go home. I'd been told, "I'm sorry", one too many times by nurses and felt like it was all hollow sympathy. I knew they meant well, but it was just overwhelming--especially the whispers and glances from them as I came out to the main desk. It was like the news that a woman's baby had been found to have Trisomy 13 spread through the office like wildfire. I found myself thinking that doctor's offices like this should really have a "bad news exit" for women who've just found out that there dreams were shattered. The worst I thought would happen at this appointment is that I would find out my baby had a chance of having Down's Syndrome and that I would have to start preparing myself for that. I never knew that I could learn something so awful, and that my baby's life will more than likely end before I can ever hold him.
The rest of the day was as they say, a blur. We went costume shopping for the boys. I got myself a Princess costume because Sam and Ben want Mommy to be a Princess. Sam will be Ironman and Benny will be Thomas. Daddy will be a pirate. You might think it's silly to dress up as adult but we do it for our boys. Some day they'll probably beg us not to be near them on Trick-or-Treat Night, but for now we're loving every minute of it.
I finally ate dinner around 8:00. Every swallow was an effort. I seriously hoped I wouldn't choke on my food. Later I researched Trisomy 13 and found several children born with it. Every parent said they wouldn't do a thing different even if they only got to hold their child for a few minutes or hours. Most of those stories were from people who didn't know their baby had it until they were born. I hope to find stories of parents, like me, who found out so early in the pregnancy.
Where do I go from here? I guess I just wait. It's possible that things might just happen on their own and I might miscarry at any time. I'll meet with my doctor and pummel her with questions in a few days. I'll pray. I'll cry. I'll cry some more.
This is a journey of unknown depths, highlights, pitfalls and sadness. I truly hope it ends with something beautiful, somehow...I'll keep you informed.
Kim
October 21, 2010. This day stained my mind and my heart. My appointment with the Perinatal specialists was at 1:45 PM. I was 12.5 weeks into my 3rd pregnancy and excited to soon be "out of the 1rst Trimester woods" so-to-speak. I'd been experiencing a lot of nausea and acid indigestion and really having a rough time making it through most days. I tried to eat something bland for lunch so my stomach wouldn't revolt during my 2-hour long appointment. My boys, Sammy (age 5.5) and Benny (almost 3) would eat lunch with Daddy while I was at my appointment.
The purpose of this appointment was an in-depth ultrasound that is usually done around 12 weeks or so of pregnancy. I'd had 3 ultrasounds already and no problems. Baby's heartbeat looked great. No problems. First round of bloodwork all looked great. I'm new to the 40-year old club, healthy and so excited to be pregnant with our 3rd child.
For the first 40 minutes of my appointment, I sat through an interview with the genetic counselor. Even though I'd had a neucco-screen before with my previous pregnancy, I hadn't ever heard of all of the facts my counselor threw out. She asked all sorts of family questions--our backgrounds, our family medical history, etc. We had nothing to report--I guess our histories were pretty standard, nothing earth-shattering to share. I even had my husband Alex, call his parents the night prior so he could find out if there were any cases of birth defects in his family. Since he was taking the boys to lunch and then coming back for the ultrasound portion of the appointment, I did my homework ahead of time.
After answering a gazillion questions--"Do you do drugs?" "No." "Do you drink?" "No." "Is there any chance you and your husband could be related?" (Guess you never know what they'll ask!) "No, ma'am," the counselor started explaining what they would be looking for in the ultrasound--measuring the thickness behind the baby's neck. A certain level of thickness could indicate that the baby may have Down's Syndrome, or Trisomy 21. I really was fascinated with her explanations of how the chromosomes come together and split to make the baby. Even though part of me was a nervous wreck inside, I tried to ask intelligent questions and to remember what she told me.
Finally, it was time for me to move on to the ultrasound portion of the visit. The counselor said, "Don't worry. I know all of this sounds scary but you have a 98% chance that everything is just fine." Sounded good, right?
I found my husband and boys and went in for my ultrasound. The boys, especially Sammy, were so excited to see the baby. Sammy loves learning about the human body so he was full of questions. He was a little chatterbox through the whole exam. I remember hoping that he wasn't distracting the technician.
After a couple of minutes, I asked the technician if she had found the heartbeat. She said yes and then I saw the little flicker of the heart. I laughed and said, "That's a good thing--always good to start with the basics!" The technician continued to push around my abdomen to get a good view of the baby from all sides. It wasn't the most comfortable ultrasound but I focused on watching the screen and seeing my baby squirm and wiggle--especially when she poked him to get him to flip this way or that way.
Let me stop to explain something quickly, I am calling my baby 'him' at this point even though we don't know the gender. I can't call him, 'it' because it's too impersonal. Because we have two boys and would most likely have a third, I decided early on to call the baby, "he". If the 20 week appointment confirmed it was a girl, then I'd be thrilled! But for now, I'm in love with my little baby boy.
After awhile, I noticed the technician doing some of the same measurements over and over. The neck thickness. The heart beat. The facial angles. I wondered in the cheeks were flat like the counselor explained was a sign of Down's Syndrome? I couldn't tell. When she was done, she said she would get the doctor and he would come in to explain everything to me. The boys were starting to get squirrelly and Alex was getting tired. I asked everyone to hang on for a bit longer.
The doctor came in, shook our hands and sat right down at the computer. I remember thinking that it was odd--I could have sworn the technician took my file out to him and they were gone for awhile. When I saw him leaning on the desk with his chin in his hand studying the screen, I knew for sure that something was wrong.
He asked me to undress from the waist down so they could do a transvaginal ultrasound. I knew things weren't right. When they came back in the room and he looked at the baby's stomach one more time, he had a dark look on his face.
With a sigh, he looked at me and started by saying, "We have some serious issues here. There are some severe problems." He went on to list things like: thickness behind the baby's neck, extra digits, a portrusion in the abdominal wall and a cleft lip. Never in my life could I have imagined hearing such things. He said that while we didn't know for 100% sure, chances were highly likely that my baby had Trisomy 13 or 18, but he was pretty sure it was Trisomy 13.
Suddenly the the genetic counselor's information and diagrams came flashing back in my head. I was thinking, "Wait a minute, isn't Trisomy 13 the most rare of the chromosomal abnormalities that a baby can have?" People sometimes say that time stops when they receive horrible news. I wish I could say that time did stop. I'd give anything if it just would have stopped. It didn't. It just kept ticking on with each second, each minute getting more and more unbelievable and awful with what the doctor told me.
The doctor put his hand on my arm and said, "I'm very sorry." Again, more red flags went off in my head. It was almost like I had to pump him for the 'bottom line.' It was then that he told me that my baby had an 80% chance of not making it to term. It was difficult for me to form words at this point, but I asked, "So, are you saying I'm just waiting for my baby to die? That it's just a matter of when and how?" He said, "Yes."
I don't think any woman ever wants to use the words, 'baby' and 'die' in the same sentence. It should be illegal. It was almost surreal as I used the words. The doctor said I would more than likely miscarry. Again, more shock. Don't the statistics say that once you see the baby's heartbeat, once you reach the end of the first trimester, you have something like a 95% chance that everything is good and that you won't miscarry? What good are statistics like that? Again, I asked, "So, I'm waiting for my baby to die? Is that what you're saying?"
My mind raced ahead through the next 6 mos. Trick-or-Treating is next weekend. My mom's birthday is this weekend. Thanksgiving. My husband out of town for various November weekends. Christmas. Do I just continue to live my life waiting for this awful thing to happen to me? It could happen at any time. How? How do I do that? How do you continue to get bigger, wear maternity clothes and at a time when you should be getting things ready for the baby, instead prepare yourself for your baby's death?? How? How do I do that?
Of course the doctor ran through my options--have more testing done to confirm which chromosome was extra, wait and do nothing, or terminate the pregnancy. I shot the testing down right away. If they weren't even going to do the finger-prick blood test on me because things were so obvious on the ultrasound, why should I go through more tests to hear that everything is what they thought? It sounded pretty bad as is. The counselor said that even if it wasn't Trisomy 13, it was probably something else very rare.
That left me with my other options to consider. I always knew that termination was never something I could do. I am praying for guidance right now. I have my standard doctor appointment in a few days and I hope to get more questions answered.
Before we left the ultrasound woman, I asked the technician for my pictures. She had told me that they would be taken at the end and I had asked her twice for them. She looked uncomfortable and printed three from my exam. One was from the top down so you couldn't even see my baby. The other two were vague, but still show my baby. I thought, every other woman left here with baby pictures, why shouldn't I? It was just all so sad. They left with smiles, I left with a face streaked full of tears.
Finally, it was time to go home. I'd been told, "I'm sorry", one too many times by nurses and felt like it was all hollow sympathy. I knew they meant well, but it was just overwhelming--especially the whispers and glances from them as I came out to the main desk. It was like the news that a woman's baby had been found to have Trisomy 13 spread through the office like wildfire. I found myself thinking that doctor's offices like this should really have a "bad news exit" for women who've just found out that there dreams were shattered. The worst I thought would happen at this appointment is that I would find out my baby had a chance of having Down's Syndrome and that I would have to start preparing myself for that. I never knew that I could learn something so awful, and that my baby's life will more than likely end before I can ever hold him.
The rest of the day was as they say, a blur. We went costume shopping for the boys. I got myself a Princess costume because Sam and Ben want Mommy to be a Princess. Sam will be Ironman and Benny will be Thomas. Daddy will be a pirate. You might think it's silly to dress up as adult but we do it for our boys. Some day they'll probably beg us not to be near them on Trick-or-Treat Night, but for now we're loving every minute of it.
I finally ate dinner around 8:00. Every swallow was an effort. I seriously hoped I wouldn't choke on my food. Later I researched Trisomy 13 and found several children born with it. Every parent said they wouldn't do a thing different even if they only got to hold their child for a few minutes or hours. Most of those stories were from people who didn't know their baby had it until they were born. I hope to find stories of parents, like me, who found out so early in the pregnancy.
Where do I go from here? I guess I just wait. It's possible that things might just happen on their own and I might miscarry at any time. I'll meet with my doctor and pummel her with questions in a few days. I'll pray. I'll cry. I'll cry some more.
This is a journey of unknown depths, highlights, pitfalls and sadness. I truly hope it ends with something beautiful, somehow...I'll keep you informed.
Kim
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