The day after meeting with the GC, I received a phone call from Dr. J (the OB). He wanted me to know that Dr. K had called him to tell him the test results. He just was calling to find out how I was handling everything. When I told him the shock was starting to wear off and we were coming to terms with everything he remained quiet for a moment. Knowing that he was trying to come up with a tactful way of saying something, and figuring I knew what that was, I let him off the hook. "I know what my options are." I heard him let out a breath on the other end of the line. "Have you decided?" he asked. I told him a little more about what Arty and I had discussed, about not deciding anything until we knew if she had a healthy heart. At the end, I said, "I think you know me well enough to know that I won't give her up unless it's the absolute right thing to do FOR HER." He replied, "I pretty much thought that was what you were going to say." We finished the conversation with him saying to call him on his cell phone if I had any questions, or if I needed him for anything at all. I have to say, I couldn't have chosen a better doctor, or a more supportive friend than he.
I went back to work on the days I was well enough. It was very difficult to answer the questions of my boss and my coworkers. I cried many times during my explanations, but the more I talked about it, the easier it became. Working for a doctor, there were many representatives of different companies who frequented our facility, and most of them became my friends. I had many discussions with them. I'll never forget talking to one friend on the phone at work one day, and she asked how the pregnancy was going. When I told her the baby had Down Syndrome, she said, "Well, that's okay. She'll still be a baby, and she'll be yours." Yes, she will be. Once I really got that through my head, (and got my heart to understand) things started turning around for us.
The appointment with Dr. K and his UT went better than we'd known it could. The baby's heart wasn't perfect - it did have two holes. (These are commonly referred to as "murmurs".) One hole is an atrial septal defect.
** Normally the heart has four chambers: two upper chambers known as atria that are separated from each other by a fibrous partition known as the atrial septum and two lower chambers known as ventricles that are separated from each other by the ventricular septum. Valves connect the atria (left and right) to their respective ventricles. A small opening between the two atria (foramen ovale) is present at birth. Shortly after birth, the atrial septum gradually grows and seals this opening. In infants with atrial septal defects, the atrial septum may not close properly or may be malformed during fetal development. In these disorders, the opening (called patent foramen ovale) between the atria persists long after it should be closed, resulting in an increase in the workload on the right side of the heart and excessive blood flow to the lungs.
The second hole is a Ventricular Septal Defect
** A ventricular septal defect can allow newly oxygenated blood to flow from the left ventricle, where the pressures are higher, to the right ventricle, where the pressures are lower, and mix with unoxygenated blood. The mixed blood in the right ventricle flows back or recirculates into the lungs. This means that the right and left ventricles are working harder, pumping a greater volume of blood than they normally would.
** Eventually, the left ventricle can work so hard that it starts to fail. It can no longer pump blood as well as it did. Blood returning to the heart from the blood vessels backs up into the lungs, causing pulmonary congestion, and further backup into the body, causing weight gain and fluid retention. Overall, this is called congestive heart failure.
While any heart condition can be potentially serious and fatal, these two holes in the heart are about as minor as they could be, especially in the case of our baby, because both holes were relatively small. At this early stage of gestation, the VSD could still close on its own before our baby is born. If they don't close before she is born, they can still close after birth. They would evaluate her and decide if she would need surgery to close the holes, or if she was doing well, they would wait and see if the holes would close on their own.
We received more (relatively) good news as well. The fluid in the ventricles of her brain had decreased slightly so that the level of fluid was considered in the "high normal" range. This was good news since if she continued to have too much fluid, it could result in her needing surgery to place a stent into her brain to drain excess fluid - something she would most likely have for the rest of her life.
Even though we never wanted our daughter to have congenital heart defects, if she HAD to have them, these were easily the most treatable. Arty and I left the office that day smiling - for the first time in a long time, and I felt like I could actually breathe without telling myself to do so.
Things were looking up...would they stay that way?
(** This information is a WebMD Medical Reference from eMedicineHealth.)
Wednesday, January 21, 2009
Monday, January 12, 2009
Part 9 - Braveheart - English Daddy version...
So what you need to know about Arty is that he is an extremely kind-hearted, loving and affectionate man. During my pregnancy, he was so focused on caring for me and tending to my every need - I'm unable to put into words how well he took care of me, and in turn, the baby. He doesn't usually have too much to say, but he is the type of person who thinks about things A LOT before talking about them. After our visit with the G.C., he finally opened up about what he'd been thinking.
I've only seen Arty cry once before, and that was after the death of his beloved grandmother (with whom he lived with his mother before we got married). So, when I was out in the living room and heard him sob from our home office, I ran in there to find him with tears streaming down his face. The sight of him in such pain broke my heart, and we wept together for a long time.
When he could finally speak, he told me more about his cousin, G., who had passed away, and the devastation his death brought to the family. It turned out that when G. was born, his father was unable to deal with him having Down Syndrome, as well as the heart defects he had. G's father left the family. I'm not sure how many heart surgeries G. had in his very short life, but his illness and death took a toll on the family. Arty's Aunt never really got over losing G, and it was a sorrow Arty grew up knowing very well.
Arty went on to explain that if our baby's heart defect was serious, he wanted to be sure she didn't suffer. He would rather we suffer through terminating the pregnancy than to ever see our baby girl weak and in pain. I truly understood his reasoning, but I felt we needed to know more about her heart before I could even try to think in those terms. We had an appointment set up in one week for Dr. K and his U.T. to perform another ultrasound, this time focusing on the heart - by performing a fetal echocardiogram. It seemed we had more waiting to do.
As the week went by, Arty expressed a fear he had that had nothing to do with the baby having DS, or a possible heart defect. He was worried that he wouldn't be a good daddy, because he didn't know HOW to be a father, since his father wasn't around to show him. (Arty's dad had passed away of lung cancer when Arty was 4. He has very limited memories of what it was like to have a father, and has very few pictures of him with his father.)
I asked him, "Do you love our baby already?" I knew he did, and he replied that, of course he did. "Then you are already a good daddy, and when she is born you won't know how or why you know - you'll just know how to do things right for her."
I don't know if he believed me that day - but I believed in him. (And I continue to do so every day.)
I've only seen Arty cry once before, and that was after the death of his beloved grandmother (with whom he lived with his mother before we got married). So, when I was out in the living room and heard him sob from our home office, I ran in there to find him with tears streaming down his face. The sight of him in such pain broke my heart, and we wept together for a long time.
When he could finally speak, he told me more about his cousin, G., who had passed away, and the devastation his death brought to the family. It turned out that when G. was born, his father was unable to deal with him having Down Syndrome, as well as the heart defects he had. G's father left the family. I'm not sure how many heart surgeries G. had in his very short life, but his illness and death took a toll on the family. Arty's Aunt never really got over losing G, and it was a sorrow Arty grew up knowing very well.
Arty went on to explain that if our baby's heart defect was serious, he wanted to be sure she didn't suffer. He would rather we suffer through terminating the pregnancy than to ever see our baby girl weak and in pain. I truly understood his reasoning, but I felt we needed to know more about her heart before I could even try to think in those terms. We had an appointment set up in one week for Dr. K and his U.T. to perform another ultrasound, this time focusing on the heart - by performing a fetal echocardiogram. It seemed we had more waiting to do.
As the week went by, Arty expressed a fear he had that had nothing to do with the baby having DS, or a possible heart defect. He was worried that he wouldn't be a good daddy, because he didn't know HOW to be a father, since his father wasn't around to show him. (Arty's dad had passed away of lung cancer when Arty was 4. He has very limited memories of what it was like to have a father, and has very few pictures of him with his father.)
I asked him, "Do you love our baby already?" I knew he did, and he replied that, of course he did. "Then you are already a good daddy, and when she is born you won't know how or why you know - you'll just know how to do things right for her."
I don't know if he believed me that day - but I believed in him. (And I continue to do so every day.)
Sunday, January 11, 2009
Part 8 - Meeting with Mis(s) - Information
Expecting to hear confirmation that my unborn child has Down Syndrome was one thing - actually hearing it was something altogether different. I've never felt grief on this level before. I wasn't grieving for the loss of a baby - my baby was very much still inside me and I had just started to feel some of her slight movements. I was grieving for what I had thought and dreamed my baby would one day be.
The Internet was full of information - the genetic abnormality caused an extra copy of the 21st chromosome to be created. Babies born with this Trisomy 21 will have mild to severe mental disability. Half of all babies born with Trisomy 21 are born with congenital heart defects/conditions. The life expectancy of an individual with Trisomy 21 is lower than that of a person without Trisomy 21. There is also a greater chance an individual with Trisomy 21 will develop Leukemia, which occurs early in life, and also Alzheimer's after age 35. Males born with Trisomy 21 are sterile, whereas females can reproduce, but have a very high rate of having a baby with Trisomy 21.
Wednesday came and Arty, my mom and I went to our appointment with the genetic counselor. We found out that she is not an employee of Dr. K - she is affiliated with one of the teaching universities in the area. She seemed nice enough upon meeting her, but it was clear that she has distanced herself from becoming too involved with the patients.
The G.C. took a lot of our information, like how old we are, what our ethnic backgrounds are, etc, then asked a lot of questions about our families and made sort of a family tree. It was during this time that I was reminded of Arty's cousin, a 2-year old boy with Down Syndrome who had passed away from a severe heart defect many years ago. (Surprisingly, I had forgotten all about hearing about him, but it was clear Arty had been thinking of him a lot lately.)
The G.C. then went on to tell us a lot of things about Down Syndrome - statistics and information we had already found on the Internet. She went on to describe how our baby would not look like us, but would look most like other children with Down Syndrome. That made me so sad at the time, because I really wanted her to have her Daddy's eyes, and his dimpled cheeks. I was hoping she'd have my mouth and nose. I felt those hopes fall away and be replaced with pictures of children I've seen with Down Syndrome.
She also stated that babies with DS have very low muscle tone and are usually very sedentary, moving their head, arms and legs very little. So now I had a vision of a baby that looked like someone else with a body like jello. After a good hour and a half of talking AT us, she threw in the piece de resistance - we had a few more weeks to decide if we wanted to terminate the pregnancy.
I had to get away from this woman - she was filling my mind with statistics and information anyone can get off the Internet. I had to wonder if she'd ever actually been in the same room with a person with DS. She brought nothing to the discussion about the joy a baby with DS can bring, she brought only her view as a person who has studied DS, but has never lived or even encountered it outside of a book. I know it is her job to make people aware that they have options - but the way it came about - (Ok, here are all the bad things about Down Syndrome, now, you should probably decide whether you want to keep this thing or not) - was quite callous.
Then the very last thing she told us was that if we didn't want to terminate, we could give the baby up for adoption. There are waiting lists of parents who want to adopt babies with DS. (Wait a minute... they are WAITING specifically for babies with DS??? They can't be all bad then, can they??)
As I look back at this, I wish I had never met that woman. I wish I had met up with our local support group (which was listed in the information we were handed at the end of our appointment, but which was never mentioned DURING the appointment.) and just skipped the genetic counseling meeting altogether. The only thing I took away from that appointment was that the "counselor" had a definite opinion about what parents should do when confronted with this diagnosis.
To me, our choice was easy - I would not harm my baby. My husband would have a slightly different opinion.
The Internet was full of information - the genetic abnormality caused an extra copy of the 21st chromosome to be created. Babies born with this Trisomy 21 will have mild to severe mental disability. Half of all babies born with Trisomy 21 are born with congenital heart defects/conditions. The life expectancy of an individual with Trisomy 21 is lower than that of a person without Trisomy 21. There is also a greater chance an individual with Trisomy 21 will develop Leukemia, which occurs early in life, and also Alzheimer's after age 35. Males born with Trisomy 21 are sterile, whereas females can reproduce, but have a very high rate of having a baby with Trisomy 21.
Wednesday came and Arty, my mom and I went to our appointment with the genetic counselor. We found out that she is not an employee of Dr. K - she is affiliated with one of the teaching universities in the area. She seemed nice enough upon meeting her, but it was clear that she has distanced herself from becoming too involved with the patients.
The G.C. took a lot of our information, like how old we are, what our ethnic backgrounds are, etc, then asked a lot of questions about our families and made sort of a family tree. It was during this time that I was reminded of Arty's cousin, a 2-year old boy with Down Syndrome who had passed away from a severe heart defect many years ago. (Surprisingly, I had forgotten all about hearing about him, but it was clear Arty had been thinking of him a lot lately.)
The G.C. then went on to tell us a lot of things about Down Syndrome - statistics and information we had already found on the Internet. She went on to describe how our baby would not look like us, but would look most like other children with Down Syndrome. That made me so sad at the time, because I really wanted her to have her Daddy's eyes, and his dimpled cheeks. I was hoping she'd have my mouth and nose. I felt those hopes fall away and be replaced with pictures of children I've seen with Down Syndrome.
She also stated that babies with DS have very low muscle tone and are usually very sedentary, moving their head, arms and legs very little. So now I had a vision of a baby that looked like someone else with a body like jello. After a good hour and a half of talking AT us, she threw in the piece de resistance - we had a few more weeks to decide if we wanted to terminate the pregnancy.
I had to get away from this woman - she was filling my mind with statistics and information anyone can get off the Internet. I had to wonder if she'd ever actually been in the same room with a person with DS. She brought nothing to the discussion about the joy a baby with DS can bring, she brought only her view as a person who has studied DS, but has never lived or even encountered it outside of a book. I know it is her job to make people aware that they have options - but the way it came about - (Ok, here are all the bad things about Down Syndrome, now, you should probably decide whether you want to keep this thing or not) - was quite callous.
Then the very last thing she told us was that if we didn't want to terminate, we could give the baby up for adoption. There are waiting lists of parents who want to adopt babies with DS. (Wait a minute... they are WAITING specifically for babies with DS??? They can't be all bad then, can they??)
As I look back at this, I wish I had never met that woman. I wish I had met up with our local support group (which was listed in the information we were handed at the end of our appointment, but which was never mentioned DURING the appointment.) and just skipped the genetic counseling meeting altogether. The only thing I took away from that appointment was that the "counselor" had a definite opinion about what parents should do when confronted with this diagnosis.
To me, our choice was easy - I would not harm my baby. My husband would have a slightly different opinion.
Saturday, January 10, 2009
Part 7 - Worst weekend ever...
I should probably tell you that I'm probably the least patient person I know, if not in the world. When I called Dr. K's office on Friday afternoon and was told that, due to my insurance, the amnio specimen had to be transported all the way to California, and they actually just received it. I know it had to be done that way, but I was just so anxious to know something. I'd already fielded so many phone calls from family - my sister, all 3 of my aunts, etc - that I was SO sick of hearing everyone telling me that they know a hundred people who were told this very same thing, and not one of them came back with a positive for Down Syndrome. I know they were just trying to help the only way they knew how, but it wasn't helping me. It was only making me think that all of those negative results were just boosting my chances of being the one positive out of those hundreds.
All weekend it seemed as though I was getting signs to tell me to expect a positive test result. One of my absolute favorite TV shows is "The Soup", and host Joel McHale** just happened to make a very tasteless reference to "Corky" from Life Goes On (which I never watched because that was a channel we didn't have when I was growing up... what??? I didn't have cable, OK??) Also, there was a big article in the Lifestyle section of our local paper in regards to older parents of now grown children with disabilities (and one of those featured was a young man with Down Syndrome).
Most importantly, as I do with most things, I tried to visualize the end result. I just could not visualize in any way, shape or form Dr. K telling me the results were negative for Down Syndrome. I could only hear him confirming the diagnosis.
I stayed home all weekend. I had my good moments where I knew I would love this baby no matter what. I had bad moments where I cried buckets of tears for this child, because I could remember how physically and mentally disabled children were treated when I was in school. I grew up in a rural community, and our school was one of few in the area that had a special education department. Special needs children were actually brought in by bus to our school because their school districts did not have the facilities to teach them. I remember walking to class and hearing people making fun of them, and there was one person in particular who would strike up conversations with a mentally disabled blind girl, and get her to say naughty things that she would never say otherwise - she was just trying to impress him because she thought he was her friend.
The above so upset me that my "dog" (she was more my first baby) SweetPea, a beagle mix, stayed next to me to comfort me. If I went to the bathroom, she came with me, even if I was being sick - which she had, up to this point, stayed outside the bedroom for. Once when we were sitting on the lounger together, she very lightly and gently placed her paw on my belly and left it there for hours. It was like she was telling me that she would do anything to protect this baby. It was then that I knew I would protect her against anything and everything as well.
Monday finally came around and I forced myself to go into work because I just needed to get out of the house for a bit. My eyes were very sore from wiping away tears with tissues, and (in my head, I'm sure) they made a scratching sound when I blinked. I didn't care what I looked like, and I didn't care if I made people at work uncomfortable with my situation. I just wanted Dr. K to call.
At 10:15 the call came in while I was working the front desk. Dr. K said "I have the results here, and it's not very good news." I held it together as he spoke, but my heart started pounding in my ears, and I became short of breath. He didn't keep me on the phone long, but said he'd have his receptionist call me later with an appointment to come into the office on Wednesday and meet with a genetic counselor. When I hung up the phone, I could feel the eyes of my coworkers on me. I started to sob uncontrollably while running to the back office. I heard the manager call for one of the other girls to cover my position as she followed me into the room. She held me as I cried and told me everything would be all right.
I don't know if I believed her - after all 1 out of every 2 babies with Down Syndrome have severe heart problems, and if we couldn't beat the other odds, how could we beat those?
**I still love Joel McHale and "The Soup" - I've long forgiven him for these remarks.
All weekend it seemed as though I was getting signs to tell me to expect a positive test result. One of my absolute favorite TV shows is "The Soup", and host Joel McHale** just happened to make a very tasteless reference to "Corky" from Life Goes On (which I never watched because that was a channel we didn't have when I was growing up... what??? I didn't have cable, OK??) Also, there was a big article in the Lifestyle section of our local paper in regards to older parents of now grown children with disabilities (and one of those featured was a young man with Down Syndrome).
Most importantly, as I do with most things, I tried to visualize the end result. I just could not visualize in any way, shape or form Dr. K telling me the results were negative for Down Syndrome. I could only hear him confirming the diagnosis.
I stayed home all weekend. I had my good moments where I knew I would love this baby no matter what. I had bad moments where I cried buckets of tears for this child, because I could remember how physically and mentally disabled children were treated when I was in school. I grew up in a rural community, and our school was one of few in the area that had a special education department. Special needs children were actually brought in by bus to our school because their school districts did not have the facilities to teach them. I remember walking to class and hearing people making fun of them, and there was one person in particular who would strike up conversations with a mentally disabled blind girl, and get her to say naughty things that she would never say otherwise - she was just trying to impress him because she thought he was her friend.
The above so upset me that my "dog" (she was more my first baby) SweetPea, a beagle mix, stayed next to me to comfort me. If I went to the bathroom, she came with me, even if I was being sick - which she had, up to this point, stayed outside the bedroom for. Once when we were sitting on the lounger together, she very lightly and gently placed her paw on my belly and left it there for hours. It was like she was telling me that she would do anything to protect this baby. It was then that I knew I would protect her against anything and everything as well.
Monday finally came around and I forced myself to go into work because I just needed to get out of the house for a bit. My eyes were very sore from wiping away tears with tissues, and (in my head, I'm sure) they made a scratching sound when I blinked. I didn't care what I looked like, and I didn't care if I made people at work uncomfortable with my situation. I just wanted Dr. K to call.
At 10:15 the call came in while I was working the front desk. Dr. K said "I have the results here, and it's not very good news." I held it together as he spoke, but my heart started pounding in my ears, and I became short of breath. He didn't keep me on the phone long, but said he'd have his receptionist call me later with an appointment to come into the office on Wednesday and meet with a genetic counselor. When I hung up the phone, I could feel the eyes of my coworkers on me. I started to sob uncontrollably while running to the back office. I heard the manager call for one of the other girls to cover my position as she followed me into the room. She held me as I cried and told me everything would be all right.
I don't know if I believed her - after all 1 out of every 2 babies with Down Syndrome have severe heart problems, and if we couldn't beat the other odds, how could we beat those?
**I still love Joel McHale and "The Soup" - I've long forgiven him for these remarks.
Friday, January 9, 2009
Part 6 - Scariest thing to happen to me... so far...
I was a wreck - I couldn't stop the tears, because I just felt it was true. My husband, ever the strong one, held me tight as Dr. K continued his well practiced spiel. He stated that there was no way to be certain just from the ultrasound, and if we wanted confirmation he could perform an amniocentesis. He went on to say that the majority of the time, about 24 out of 25 times, the results come back negative for Down Syndrome. He left us alone for a few minutes, during which time ArtyBee fetched my mom from the waiting room. It was agony to even try to put into words what we'd just heard, but even though my mom was anxious, she was quite confident the baby would be negative for DS. Apparently, my mother's sister was told the exact same thing about her first pregnancy. She was scared sh**less, cried many tears, had the test, worried for a week and it came back negative. When they told her the same thing for her second pregnancy, she didn't even bother to have the tests. Both of my cousins are what you would call "normal".
I didn't feel like I should take the chance of not knowing. Not knowing and worrying for the next 5 months would only make me more sick, and I didn't need that stress on top of everything else. After a very brief discussion between the three of us, we decided to find out more about the amnio. Dr. K returned to the room and ArtyBee asked about the amnio - when could it be performed, what did it entail, and how long before the results would be known?
Dr. K insisted we could do the amnio right now, that the U.T. could clear the schedule for the next hour. He stated that to perform the amniocentesis, my abdomen would be sterilized and the U.T. would perform an ultrasound to find where the fetus was and guide Dr. K to the best place (as far away from the fetus as possible) to remove amniotic fluid. He would then insert a long needle all the way through my abdomen into the amniotic sac, and pull out the plunger to fill the syringe with fluid. He would then unscrew the first syringe and attach a second one, all the while keeping the needle in place, and remove more fluid. Then he would fill a third syringe. Finally, he would remove the needle. During the procedure, I would be most uncomfortable - I would have moderate to severe cramping as the needle penetrated the sac and for the duration of the procedure. It was not without risk either: there was a 1 in 400 chance the procedure would cause a miscarriage. Dr. K was very confident, though, stating that in his practice the odds were even better than that and that he didn't foresee any problems. As long as I took it easy for the next few days, I should have no problems. This was on a Wednesday - the results may be in as early as Friday, but no later than Monday.
Back in the procedure room, I felt confident in Dr. K's confidence that everything would go smoothly. That's where my confidence ended and I was more scared than I've ever been in my life. I won't lie to you - when I saw the length of the needle (it was at least 8 inches long, if not 10), I panicked. I started to shake, and I squeezed ArtyBee's hand so tight I'm sure I hurt him, but he never once complained. As the needle penetrated my skin and the cramping started, my eyes filled with tears and they silently slid down my cheeks. The only thing that kept me from screaming and telling him to stop was the sight of my baby on the screen in front of me. No longer squished by my bladder, it was like she knew she needed to stay to one side of my uterus as the needle penetrated the sac on the other side. I was determined to stay still so she wouldn't be startled and move closer to the needle. I counted to 15 as the first syringe filled with fluid, then I counted to 30 as Dr. K unscrewed the first syringe and attached the second. The counting helped keep me calm and by the time it was all over the tears had stopped.
Dr. K showed us one of the vials of amniotic fluid and held it against my arm so I could feel the warmth. "Here's your baby's pee... and other stuff too." He went on to say that everything went according to plan, that I still had more than enough fluid to keep the baby safe, and that he expected no complications. But due to the fact that I've been as sick as I have been, I shouldn't go to work for the rest of the week. "No problem," I said, "I'm pretty sure they're getting used to me not being there."
There was one last thing Dr. K wanted to do before we left his office. He wanted to draw some blood to test me for Thalassemia, which is a hereditary genetic defect which causes anemia. Since I am anemic (and have been for as long as I can remember) he wanted to make sure it wasn't something that could be passed along to the fetus. So I had the priviledge of having another needle inserted into me - but this one was almost pleasant compared to the last one.
And so we went home - to wait, to research, to worry, to rest, and to cry.
I didn't feel like I should take the chance of not knowing. Not knowing and worrying for the next 5 months would only make me more sick, and I didn't need that stress on top of everything else. After a very brief discussion between the three of us, we decided to find out more about the amnio. Dr. K returned to the room and ArtyBee asked about the amnio - when could it be performed, what did it entail, and how long before the results would be known?
Dr. K insisted we could do the amnio right now, that the U.T. could clear the schedule for the next hour. He stated that to perform the amniocentesis, my abdomen would be sterilized and the U.T. would perform an ultrasound to find where the fetus was and guide Dr. K to the best place (as far away from the fetus as possible) to remove amniotic fluid. He would then insert a long needle all the way through my abdomen into the amniotic sac, and pull out the plunger to fill the syringe with fluid. He would then unscrew the first syringe and attach a second one, all the while keeping the needle in place, and remove more fluid. Then he would fill a third syringe. Finally, he would remove the needle. During the procedure, I would be most uncomfortable - I would have moderate to severe cramping as the needle penetrated the sac and for the duration of the procedure. It was not without risk either: there was a 1 in 400 chance the procedure would cause a miscarriage. Dr. K was very confident, though, stating that in his practice the odds were even better than that and that he didn't foresee any problems. As long as I took it easy for the next few days, I should have no problems. This was on a Wednesday - the results may be in as early as Friday, but no later than Monday.
Back in the procedure room, I felt confident in Dr. K's confidence that everything would go smoothly. That's where my confidence ended and I was more scared than I've ever been in my life. I won't lie to you - when I saw the length of the needle (it was at least 8 inches long, if not 10), I panicked. I started to shake, and I squeezed ArtyBee's hand so tight I'm sure I hurt him, but he never once complained. As the needle penetrated my skin and the cramping started, my eyes filled with tears and they silently slid down my cheeks. The only thing that kept me from screaming and telling him to stop was the sight of my baby on the screen in front of me. No longer squished by my bladder, it was like she knew she needed to stay to one side of my uterus as the needle penetrated the sac on the other side. I was determined to stay still so she wouldn't be startled and move closer to the needle. I counted to 15 as the first syringe filled with fluid, then I counted to 30 as Dr. K unscrewed the first syringe and attached the second. The counting helped keep me calm and by the time it was all over the tears had stopped.
Dr. K showed us one of the vials of amniotic fluid and held it against my arm so I could feel the warmth. "Here's your baby's pee... and other stuff too." He went on to say that everything went according to plan, that I still had more than enough fluid to keep the baby safe, and that he expected no complications. But due to the fact that I've been as sick as I have been, I shouldn't go to work for the rest of the week. "No problem," I said, "I'm pretty sure they're getting used to me not being there."
There was one last thing Dr. K wanted to do before we left his office. He wanted to draw some blood to test me for Thalassemia, which is a hereditary genetic defect which causes anemia. Since I am anemic (and have been for as long as I can remember) he wanted to make sure it wasn't something that could be passed along to the fetus. So I had the priviledge of having another needle inserted into me - but this one was almost pleasant compared to the last one.
And so we went home - to wait, to research, to worry, to rest, and to cry.
Thursday, January 8, 2009
Part 5 - Goin' to the doctor and we're..gonna see our baby...
It was a beautiful Florida October day, and my mom, my husband, ArtyBee (he'll kill me if he knows I'm calling him that!) and I are sitting in the waiting room of the Perinatologist. First off, I have to tell you that I was told to drink 32 oz of water prior to the appointment, because enlarging the bladder helps bring the baby closer to the ultrasound wand. So I'm sitting there, in agony, because I have to pee like I've never had to pee before. And they are running late!! After what seems like an hour (but was probably only 15 minutes) of me holding it in, feeling sick and actually starting to sweat, the sweetest of all ultrasound technicians comes to get me. I couldn't be mad at her, for one because I know that going to the doctor is not like going through the drive through at McDonald's - not everything is on the menu, and two because the U.T. was just SO NICE. I told her immediately that I was really uncomfortable and she said, "Let's take a quick look and see if we can let you release some of that urine."
So, she puts on some of the freezing blue jelly and touches the ultrasound wand to my abdomen and immediately starts laughing. There is a screen to the side of my head that she is looking at, and there is one directly in front of me, and there on the screen is the shape and size of a football. My bladder! The amniotic sac and baby are way down in the corner of the screen, looking like they are being squished by my football of a bladder. "Yeah, you should probably just go ahead and empty your entire bladder," she told me. I was SO relieved that I could relieve myself!
Finally, when the ultrasound was underway, the U.T. was taking measurements of various things - the brain, the kidneys, the stomach, the length of the baby, and so much more. She then asked, did we want to know the sex of the baby? I almost said, I know it's going to be a girl, but I didn't, because then I probably would have been wrong. After confirmation, she showed us an image on the screen and said, "Do you see these three things?" And immediately, I felt crushed - I thought, Oh, no! It's a boy! She's going to say it's a winkie and testicles! I looked at ArtyBee and our eyes met and I knew I must have looked so disappointed. Then the U.T. said, "Those are little girl parts!"
I think I squealed with delight and for the second time in a half an hour, I was relieved! Then I started to cry I was so thrilled. Finally, the U.T. put an image up on the screen that I could actually make out what it was - it was a side profile of the baby's head/face, and she was beautiful.
The U.T. excused herself so she could meet with Dr. K, and discuss the ultrasound film that he will be interested in (and view on a computer in his office.) After a few minutes, and another round of introductions, Dr. K took a few more images that he wanted to double check on, then stated that I should go ahead and wipe off the jelly and we should meet him in their conference room. He was very pleasant and calm, as was the U.T., so I had no reason to believe that this was out of the ordinary. My mom excused herself to make a few work related phone calls while we met privately with Dr. K.
In the private room, we all were seated around a large round table. Dr. K took a deep breath, and that's when I got a chill at the back of my neck. My eyes got blurry and a high pitched tone invaded my hearing. I heard things like "excessive fluid in the ventricles of the brain," and "absent nasal bone". What does any of that indicate? I'm not sure if I ever asked the question, but I got the answer anyway. "If it were just one of these alone, I wouldn't even mention it, but both of them together are indicative of Down Syndrome."
So, she puts on some of the freezing blue jelly and touches the ultrasound wand to my abdomen and immediately starts laughing. There is a screen to the side of my head that she is looking at, and there is one directly in front of me, and there on the screen is the shape and size of a football. My bladder! The amniotic sac and baby are way down in the corner of the screen, looking like they are being squished by my football of a bladder. "Yeah, you should probably just go ahead and empty your entire bladder," she told me. I was SO relieved that I could relieve myself!
Finally, when the ultrasound was underway, the U.T. was taking measurements of various things - the brain, the kidneys, the stomach, the length of the baby, and so much more. She then asked, did we want to know the sex of the baby? I almost said, I know it's going to be a girl, but I didn't, because then I probably would have been wrong. After confirmation, she showed us an image on the screen and said, "Do you see these three things?" And immediately, I felt crushed - I thought, Oh, no! It's a boy! She's going to say it's a winkie and testicles! I looked at ArtyBee and our eyes met and I knew I must have looked so disappointed. Then the U.T. said, "Those are little girl parts!"
I think I squealed with delight and for the second time in a half an hour, I was relieved! Then I started to cry I was so thrilled. Finally, the U.T. put an image up on the screen that I could actually make out what it was - it was a side profile of the baby's head/face, and she was beautiful.
The U.T. excused herself so she could meet with Dr. K, and discuss the ultrasound film that he will be interested in (and view on a computer in his office.) After a few minutes, and another round of introductions, Dr. K took a few more images that he wanted to double check on, then stated that I should go ahead and wipe off the jelly and we should meet him in their conference room. He was very pleasant and calm, as was the U.T., so I had no reason to believe that this was out of the ordinary. My mom excused herself to make a few work related phone calls while we met privately with Dr. K.
In the private room, we all were seated around a large round table. Dr. K took a deep breath, and that's when I got a chill at the back of my neck. My eyes got blurry and a high pitched tone invaded my hearing. I heard things like "excessive fluid in the ventricles of the brain," and "absent nasal bone". What does any of that indicate? I'm not sure if I ever asked the question, but I got the answer anyway. "If it were just one of these alone, I wouldn't even mention it, but both of them together are indicative of Down Syndrome."
Part 4 - Still very early middle...
Around the end of August, I started to suffer morning sickness. Except that it wasn't just morning - it was ALL DAY LONG. I had a job as a doctor's office receptionist (but oh so much more than that) and I was always the first one in. I would wake up at 6 a.m., and before I even made it out of bed I would start gagging. (You know what follows that.) No matter what I ate or drank, I threw up. If I didn't have anything to eat or drink, I had the pleasure of spewing stomach acid.
From the end of August to my birthday at the end of September, I was hospitalized 3 times (including on my 29th birthday). The first two times, I was given IV fluids and IV Phenergen, then when I was discharged, I was given the pill form of Phenergen. The medication made me a zombie. I was still being sick, but I was so drowsy I could no longer get myself out of bed to make it to the bathroom in time, so I had to have a wastebasket next to me at all times. It got to the point where I had to make the decision - either take the Phenergen, and still be sick or get out of bed for the day and still be sick. At least off the medication I could think clearly, and tried to work - but I was lucky if I made it through the day at the office. On my 29th birthday, I woke up the same way as I always did, but I was feeling even worse than usual. I knew my husband had arranged flowers to be delivered to me at the office (as was his ritual), and I wanted to be there to get them. I got to the office at 7:30 a.m. and the next thing I remembered was waking up face-down on the floor next to stacks of charts, just as one of my coworkers was arriving. I immediately called my husband, who came to pick me up and took me to Dr. J's office (which was just a few doors down). Dr. J was in surgery at the time, so I saw one of his partners, who barely looked at my face, let alone talked or listened to me and just told me to go to the hospital again so they could give me IV fluids.
This time at the hospital, I was given IV Zofran in addition to the fluids. I had absolutely no side effects and felt better almost immediately. I was given a prescription for the pill form of Zofran, which is dissolved on the tongue, then swallowed. It worked! For 2 weeks. Then it all started over again. I barely worked, I barely ate, but I tried to drink as much as possible so I wouldn't have to go to the hospital again.
By the first week in October, I had lost 20 lbs. I'm not saying I didn't need to lose it... but you have to figure during pregnancy is the WRONG time to lose weight. Dr. J alleviated my fears that the baby was being harmed. He put it this way. "Your baby, the little cute little critter that it is, is a parasite. You're the host. The parasite takes everything it needs to live from the host."
As crude a remark as it was, it was true. (I've long forgiven him for calling my baby a parasite - he's truly made up for it, as you'll see in posts to come.) If I could just get through the next week, it would all be worth it when I go to see the perinatologist. We'll get an ultrasound, and see our little "critter" - in 3d!
From the end of August to my birthday at the end of September, I was hospitalized 3 times (including on my 29th birthday). The first two times, I was given IV fluids and IV Phenergen, then when I was discharged, I was given the pill form of Phenergen. The medication made me a zombie. I was still being sick, but I was so drowsy I could no longer get myself out of bed to make it to the bathroom in time, so I had to have a wastebasket next to me at all times. It got to the point where I had to make the decision - either take the Phenergen, and still be sick or get out of bed for the day and still be sick. At least off the medication I could think clearly, and tried to work - but I was lucky if I made it through the day at the office. On my 29th birthday, I woke up the same way as I always did, but I was feeling even worse than usual. I knew my husband had arranged flowers to be delivered to me at the office (as was his ritual), and I wanted to be there to get them. I got to the office at 7:30 a.m. and the next thing I remembered was waking up face-down on the floor next to stacks of charts, just as one of my coworkers was arriving. I immediately called my husband, who came to pick me up and took me to Dr. J's office (which was just a few doors down). Dr. J was in surgery at the time, so I saw one of his partners, who barely looked at my face, let alone talked or listened to me and just told me to go to the hospital again so they could give me IV fluids.
This time at the hospital, I was given IV Zofran in addition to the fluids. I had absolutely no side effects and felt better almost immediately. I was given a prescription for the pill form of Zofran, which is dissolved on the tongue, then swallowed. It worked! For 2 weeks. Then it all started over again. I barely worked, I barely ate, but I tried to drink as much as possible so I wouldn't have to go to the hospital again.
By the first week in October, I had lost 20 lbs. I'm not saying I didn't need to lose it... but you have to figure during pregnancy is the WRONG time to lose weight. Dr. J alleviated my fears that the baby was being harmed. He put it this way. "Your baby, the little cute little critter that it is, is a parasite. You're the host. The parasite takes everything it needs to live from the host."
As crude a remark as it was, it was true. (I've long forgiven him for calling my baby a parasite - he's truly made up for it, as you'll see in posts to come.) If I could just get through the next week, it would all be worth it when I go to see the perinatologist. We'll get an ultrasound, and see our little "critter" - in 3d!
Friday, January 2, 2009
Part 3 - Somewhere in the middle...
When I called to schedule an appointment with my OB, I was told to schedule my first appointment for when I would be 8 weeks along. When the second week of August came around I was getting extremely impatient to see Dr. J. I was very lucky to have been referred to him the previous year after my old OB/GYN went out of practice. At the time, I was very hesitant to return to having a male doctor, but at my first appointment with him for an annual exam, we had a very nice chat during which he made me feel very comfortable, and I was pleased to find out he was as gentle during procedures as he was during conversation.
When my husband and I arrived at the appointment, the nurse took my vitals and asked a million routine questions. Dr. J. came into the room and performed an exam, and was able to actually feel my "little pouch of pregnancy" as he liked to call it. He performed an ultrasound which was just what everyone expects - a little kidney bean floating around in a lot of fluid. The amazing thing was, even though our little bean was extremely tiny, we could see the even tinier heart fluttering on the screen. My husband and I shared one of those looks (that a month before I would've sworn only existed in romance films) and a single tear rolled down my husband's cheek. That's all it took for my floodgates to burst, and I cried - unashamed.
Dr. J. wanted to see us every 4 weeks, and of course there was blood work I needed to have done. He told me that if I had any problems, to call him immediately, and gave me his direct cell phone number. He told me he didn't do that for everyone, that he has an answering service for that, but for reasons he didn't (or couldn't?) explain, he wanted us to call him directly.
That evening, lying in bed embracing my sweet husband, I pictured us with our baby in the middle of our bed. In my vision, I saw a tow-headed baby with skin the color of cream, and chubby cheeks the color of peaches, wearing a pink sleeper and matching pink hat.
I said to my husband, "We're going to have a girl, I just know it - and I think we should call her SoBee."
When my husband and I arrived at the appointment, the nurse took my vitals and asked a million routine questions. Dr. J. came into the room and performed an exam, and was able to actually feel my "little pouch of pregnancy" as he liked to call it. He performed an ultrasound which was just what everyone expects - a little kidney bean floating around in a lot of fluid. The amazing thing was, even though our little bean was extremely tiny, we could see the even tinier heart fluttering on the screen. My husband and I shared one of those looks (that a month before I would've sworn only existed in romance films) and a single tear rolled down my husband's cheek. That's all it took for my floodgates to burst, and I cried - unashamed.
Dr. J. wanted to see us every 4 weeks, and of course there was blood work I needed to have done. He told me that if I had any problems, to call him immediately, and gave me his direct cell phone number. He told me he didn't do that for everyone, that he has an answering service for that, but for reasons he didn't (or couldn't?) explain, he wanted us to call him directly.
That evening, lying in bed embracing my sweet husband, I pictured us with our baby in the middle of our bed. In my vision, I saw a tow-headed baby with skin the color of cream, and chubby cheeks the color of peaches, wearing a pink sleeper and matching pink hat.
I said to my husband, "We're going to have a girl, I just know it - and I think we should call her SoBee."
Subscribe to:
Posts (Atom)