Our Expected Surprise
We decided on March 19, 2009 that it was time...we were ready to be parents! So, excitedly, we chucked "the pills" and let nature take it from there. One short month later, Friday April 24 to be exact, Jim subtly suggested I take a home pregnancy test as I was a full week "late". A few minutes later, we got the expected surprise!
Half Over...Already???
From day one, everyone has told me how lucky I've been with this pregnancy, especially since it's our first. No morning sickness (a little nauseousness, but not sick!) and no extreme fatigue. We got our first ultrasound at 10 weeks, where our little fetus looked like a gummy bear with its little nubbin arms and legs :) I didn't "feel" pregnant for a long time, either, until around 18-20 weeks. We found out on July 26 (exactly 18 weeks), through an elective, non-medical ultrasound facility, that we were having a boy! By the time we got home, we had decided on Tyler (because it was the only name in the universe we could agree on!) and a few days later decided on Andrew for his middle name, after my grandpa Cuchiara. Within the next week, I could feel him move and kick, but not from the outside yet. I couldn't suck in that gut around the end of my 19th and beginning of my 20th week, which is about the time Jim could feel little Tyler kicking! I had only gained about 2 lbs. by my 20 week check up, but my doctor wasn't worried as long as I wasn't losing weight. During that appointment, we scheduled the customary 20 week ultrasound where they check all the organs and size of the baby. We actually had the ultrasound at 21 weeks (August 17) at the hospital. After the first 30 minutes, I felt a little nervous as to why it was taking so long. Tyler was curled up and facing my back, which was the same position he was in while we were trying to find out the sex, so it was hard to get a measurement of his head. After an hour and a half, we finally got a few pictures of our little guy and were able to leave.
Devastating News
The next day I got a phone call from my doctor's office "about the ultrasound" I had the day before. When I was finally able to talk to someone, she told me that I "might" have low amniotic fluid and my doctor was referring me to a perinatologist in Peoria to have a level II ultrasound done. Panic doesn't even begin to describe my initial reaction. But she didn't sound worried, so I requested the appointment be scheduled for a Monday, as that was more convenient for my job. I called Jim to let him know what I found out and decided against googling what this could mean. I got a phone call back from my doctor's office and my level II was scheduled for the following Monday at 9:45 a.m. By the next morning, I couldn't keep myself from the internet anymore! I googled "low amniotic fluid" and was horrified at the results! I panicked and called the office of the perinatologist, to see if I could get in any sooner. They claimed that there were no openings, but only after asking if I was "a new patient"! Hysterically, I called Jim and he called the office again. (Overkill, I know.) He called me back to reassure me that there was no concern. When doctors are worried, they ask to have their patients squeezed in immediately, and that was definitely NOT the case when my doctor called. That made me feel so much better and we both relaxed a bit. On the way to Peoria on the 24th, Jim and I were planning our day of Olive Garden and car shopping. We got in to see the doctor quickly after filling out paperwork and began the ultrasound. After about 10 minutes, the perinatologist told us that the "pockets" they initially thought were fluid, were actually umbilical cord. I was supposed to have 15 cm of fluid and, after using the heat sensing option on the machine, he discovered I had only 1 cm. He said that it was definitely "cause for concern" and there were a few other things he wasn't happy about. He confirmed "boy" and said Tyler had a strong heartbeat, but he asked us to go downstairs to walk around a little and come back up in about 15 minutes so "Amy" could take a look because she is better at finding the organs he was looking for. That's never good, but Jim assured me that everything would be fine...as it always is. We went to a different room when we got back upstairs and got started on the second ultrasound. Amy pointed out the adrenal glands that were "laying on their sides" to the doctor and he said, "Oh, I didn't see that before," and left the room. Another few minutes and she was done, telling us she'd be back in with the doctor. I was beyond nervous or worried, but Jim stayed calm. The doctor came back into the room, handed me the box of tissues and sat down. He explained that he was very sorry, but the baby doesn't have kidneys or a bladder, which is "incompatible with life". The adrenal glands that Amy mentioned are supposed to drape over the kidneys, which is why seeing them laying flat was confirmation of what he didn't find. He is absolutely, 100% certain about what he found, or didn't find, and there is no cure, no chance of survival. Before we had a chance to process the information, he told us it was nothing we did wrong (which was my first reaction). There is no prevention, there is no cause. It's a fluke, a bolt of lighting, and there is about no chance it would happen in subsequent pregnancies. Amniotic fluid, at that point, is made up mostly of fetal urine. Since Tyler couldn't excrete it, this caused the extremely low levels. These low levels, from now on, will prohibit growth of his lungs as well. He gave us two options: terminate the pregnancy or carry full term. At that moment, one sounded just as horrible and excruciating as the other. On one hand, we eliminate all possibility for a miracle and do what we so strongly believe against. On the other hand, I carry him the next 4 months knowing we will have a few hours with him AT MOST?!? What kind of decision is that to make? Amy led us into a private room to let us be alone for a few minutes before we left the building. We held each other. We cried. What kind of hand were we just dealt? Is this a bad dream? Our hearts physically ached as we drove straight home. We were devastated, our parents were devastated. I had just finished the gift registries a few weeks before; made the guest list for the shower our moms were having back home; picked up the paint for his nursery the day before; put all of his clothes, diapers, lotions and wipes in the top of his closet...and he wasn't coming home. The following 24 hours made for the longest day of our lives.
There's No Shortcut to Any Place Worth Going
We did a lot of talking over the next week between us and our families. When we talked to our doctor on Tuesday, he told us that since Tyler's condition is so rare he needed some more time to do research before making any decisions or plans. He called Thursday night to let us know he was attending a conference with other OBs and a specialist from Peoria the next day and he'd have more answers then. Friday afternoon he called and gave us some hope. He said he had a much better understanding of all the possible avenues we could take, what to expect and a clear direction of where he wanted to direct us, medically. We agreed to meet at his office after hours to talk it out and see what we wanted to do. By the time we went in, we had made our decision, but were curious as to what the doctor had to say. As our luck had been over the past week, I just knew he was going to tell me that, medically, we should do exactly what we didn't morally want to do. Luckily, that wasn't the case. After a week of discussion and a 2 hour consultation with our doctor, we decided to continue the pregnancy and put Tyler into God's hands, where he needs to be. When we decided to be parents, we made the choice to take the good with the bad. I don't know who said it, but I firmly believe that there isn't a shortcut to any place worth going. This is a long, rough road, but no choice is easy when given the information that we've been given. Leaving our doctor's office, I had such a feeling of peace. Like if there is a "right" thing to do in this situation, we were doing it. We were on the right path and I could smile. That night, our pastor and his wife came to our house and we had a VERY long talk with them, as well. They, of course, feel the same as we do about abortion and gave us continued comfort and support about our decision. We aren't hoping for a miracle, only praying for one. We've gotten so much support from both of our jobs, as well. They've told both of us to take as long as we need. Jim went back on Monday August 31 full days, after coming home at noon the week before. Of course, there was no way I was going back until we decided what to do and how I am going to deal with the public, which is part of the reason we decided to create this website. I will be cutting down my hours there for the remainder of this pregnancy. I'm trying to stay positive, but how do you answer questions about your pregnancy when all that's doing is involving more people in your life? Genuine concern doesn't feel the same when questions are asked repeatedly with an outcome like Tyler's.
From day one, everyone has told me how lucky I've been with this pregnancy, especially since it's our first. No morning sickness (a little nauseousness, but not sick!) and no extreme fatigue. We got our first ultrasound at 10 weeks, where our little fetus looked like a gummy bear with its little nubbin arms and legs :) I didn't "feel" pregnant for a long time, either, until around 18-20 weeks. We found out on July 26 (exactly 18 weeks), through an elective, non-medical ultrasound facility, that we were having a boy! By the time we got home, we had decided on Tyler (because it was the only name in the universe we could agree on!) and a few days later decided on Andrew for his middle name, after my grandpa Cuchiara. Within the next week, I could feel him move and kick, but not from the outside yet. I couldn't suck in that gut around the end of my 19th and beginning of my 20th week, which is about the time Jim could feel little Tyler kicking! I had only gained about 2 lbs. by my 20 week check up, but my doctor wasn't worried as long as I wasn't losing weight. During that appointment, we scheduled the customary 20 week ultrasound where they check all the organs and size of the baby. We actually had the ultrasound at 21 weeks (August 17) at the hospital. After the first 30 minutes, I felt a little nervous as to why it was taking so long. Tyler was curled up and facing my back, which was the same position he was in while we were trying to find out the sex, so it was hard to get a measurement of his head. After an hour and a half, we finally got a few pictures of our little guy and were able to leave.
Devastating News
The next day I got a phone call from my doctor's office "about the ultrasound" I had the day before. When I was finally able to talk to someone, she told me that I "might" have low amniotic fluid and my doctor was referring me to a perinatologist in Peoria to have a level II ultrasound done. Panic doesn't even begin to describe my initial reaction. But she didn't sound worried, so I requested the appointment be scheduled for a Monday, as that was more convenient for my job. I called Jim to let him know what I found out and decided against googling what this could mean. I got a phone call back from my doctor's office and my level II was scheduled for the following Monday at 9:45 a.m. By the next morning, I couldn't keep myself from the internet anymore! I googled "low amniotic fluid" and was horrified at the results! I panicked and called the office of the perinatologist, to see if I could get in any sooner. They claimed that there were no openings, but only after asking if I was "a new patient"! Hysterically, I called Jim and he called the office again. (Overkill, I know.) He called me back to reassure me that there was no concern. When doctors are worried, they ask to have their patients squeezed in immediately, and that was definitely NOT the case when my doctor called. That made me feel so much better and we both relaxed a bit. On the way to Peoria on the 24th, Jim and I were planning our day of Olive Garden and car shopping. We got in to see the doctor quickly after filling out paperwork and began the ultrasound. After about 10 minutes, the perinatologist told us that the "pockets" they initially thought were fluid, were actually umbilical cord. I was supposed to have 15 cm of fluid and, after using the heat sensing option on the machine, he discovered I had only 1 cm. He said that it was definitely "cause for concern" and there were a few other things he wasn't happy about. He confirmed "boy" and said Tyler had a strong heartbeat, but he asked us to go downstairs to walk around a little and come back up in about 15 minutes so "Amy" could take a look because she is better at finding the organs he was looking for. That's never good, but Jim assured me that everything would be fine...as it always is. We went to a different room when we got back upstairs and got started on the second ultrasound. Amy pointed out the adrenal glands that were "laying on their sides" to the doctor and he said, "Oh, I didn't see that before," and left the room. Another few minutes and she was done, telling us she'd be back in with the doctor. I was beyond nervous or worried, but Jim stayed calm. The doctor came back into the room, handed me the box of tissues and sat down. He explained that he was very sorry, but the baby doesn't have kidneys or a bladder, which is "incompatible with life". The adrenal glands that Amy mentioned are supposed to drape over the kidneys, which is why seeing them laying flat was confirmation of what he didn't find. He is absolutely, 100% certain about what he found, or didn't find, and there is no cure, no chance of survival. Before we had a chance to process the information, he told us it was nothing we did wrong (which was my first reaction). There is no prevention, there is no cause. It's a fluke, a bolt of lighting, and there is about no chance it would happen in subsequent pregnancies. Amniotic fluid, at that point, is made up mostly of fetal urine. Since Tyler couldn't excrete it, this caused the extremely low levels. These low levels, from now on, will prohibit growth of his lungs as well. He gave us two options: terminate the pregnancy or carry full term. At that moment, one sounded just as horrible and excruciating as the other. On one hand, we eliminate all possibility for a miracle and do what we so strongly believe against. On the other hand, I carry him the next 4 months knowing we will have a few hours with him AT MOST?!? What kind of decision is that to make? Amy led us into a private room to let us be alone for a few minutes before we left the building. We held each other. We cried. What kind of hand were we just dealt? Is this a bad dream? Our hearts physically ached as we drove straight home. We were devastated, our parents were devastated. I had just finished the gift registries a few weeks before; made the guest list for the shower our moms were having back home; picked up the paint for his nursery the day before; put all of his clothes, diapers, lotions and wipes in the top of his closet...and he wasn't coming home. The following 24 hours made for the longest day of our lives.
There's No Shortcut to Any Place Worth Going
We did a lot of talking over the next week between us and our families. When we talked to our doctor on Tuesday, he told us that since Tyler's condition is so rare he needed some more time to do research before making any decisions or plans. He called Thursday night to let us know he was attending a conference with other OBs and a specialist from Peoria the next day and he'd have more answers then. Friday afternoon he called and gave us some hope. He said he had a much better understanding of all the possible avenues we could take, what to expect and a clear direction of where he wanted to direct us, medically. We agreed to meet at his office after hours to talk it out and see what we wanted to do. By the time we went in, we had made our decision, but were curious as to what the doctor had to say. As our luck had been over the past week, I just knew he was going to tell me that, medically, we should do exactly what we didn't morally want to do. Luckily, that wasn't the case. After a week of discussion and a 2 hour consultation with our doctor, we decided to continue the pregnancy and put Tyler into God's hands, where he needs to be. When we decided to be parents, we made the choice to take the good with the bad. I don't know who said it, but I firmly believe that there isn't a shortcut to any place worth going. This is a long, rough road, but no choice is easy when given the information that we've been given. Leaving our doctor's office, I had such a feeling of peace. Like if there is a "right" thing to do in this situation, we were doing it. We were on the right path and I could smile. That night, our pastor and his wife came to our house and we had a VERY long talk with them, as well. They, of course, feel the same as we do about abortion and gave us continued comfort and support about our decision. We aren't hoping for a miracle, only praying for one. We've gotten so much support from both of our jobs, as well. They've told both of us to take as long as we need. Jim went back on Monday August 31 full days, after coming home at noon the week before. Of course, there was no way I was going back until we decided what to do and how I am going to deal with the public, which is part of the reason we decided to create this website. I will be cutting down my hours there for the remainder of this pregnancy. I'm trying to stay positive, but how do you answer questions about your pregnancy when all that's doing is involving more people in your life? Genuine concern doesn't feel the same when questions are asked repeatedly with an outcome like Tyler's.