Tuesday we drove to a children's hospital for a fetal MRI to check out baby's intracranial structures and anatomy. I lay down on a skinny gray bed and had a foam cushion put under my knees and right side, and a foam cage placed over my abdomen. Then the bed was moved into the MRI machine, which was huge and gray. It felt like starting to go down a water tube slide. It was a bit claustrophobic but not awful. It took about half an hour and was very loud, even with earplugs. Nick was in the room with me. Some noises were like fog horns and others vibrated. She said it would take about 48 hours for results, but it turned out to be half that time.
Today, Wednesday, Nick went to work and I stayed home with my feet up. We got a call from our genetic counselor around 5pm. She had the MRI results which showed normal brain and cerebellum size. They noticed enlarged kidneys, about 3.3 and 3.0 (cm? mm? I don't know.) And some blood results came back which measured afp or alphafetalprotein. They like to see a number closer to 1, a high number can indicate spina bifida trouble, and ours was 18. Crazy high. It can also indicate kidney issues, which we obviously have.
She threw out a name of a scary syndrome that it is possible baby has: Finnish nephrotic syndrome. Kidney issues didn't sound that terrifying at first and then she added that it is usually lethal to the baby, because it requires kidney transplants, and there are not usually ones available for newborns. He would be on dialysis which is also not good for them. She said that if this turns out to be the case, the hospital would probably consider suggesting a compassionate induction, where we have the baby and then keep him comfortable and say goodbye.
Nick feels like we should not be too concerned about this yet, and I mostly agree. The counselor said this is just a slim chance that he has it, and if he doesn't (test results will be back in about 4-5 weeks, after the amnio/micro array results because they need those chromosomes first), they can test for 10 other even rarer kidney problems. The really high afp is freaking me out though.
She will talk to the doctor and call us back tomorrow, since we need to get in for another ultrasound to monitor baby's fluids.
I feel really helpless. It's awful worrying like this and not knowing if we will bring home a baby. He's kicking right now and it breaks my heart that might be all we ever get of him.
Wednesday, May 13, 2015
Monday, May 11, 2015
Weekend Hospitalization
On Friday, two days after the amnio, I had a tiny bit of pink spotting in the morning. Knowing it is a side effect of the amnio but also knowing that placenta previa dictates any bleeding be reported to my doctor, I called in.
We spent 3 hours at Labor and Delivery at my normal hospital getting checked out. They did not see any active bleeding, and let us go home.
One of the doctors found out our Informaseq results (a Non-Invasive Prenatal...Something that is called NIPS, other tests in this category are the Harmony, Materniti21...etc.) We were negative for Trisomies 21, 13, and 18! And baby boy was definitely a boy. Yay! We were expecting this news because none of the ultrasounds showed typical indicators of these trisomies, but still. Sigh of relief.
I spent the day quietly and Nick went to work. That afternoon we saw Avengers 2 (awesome movie!) with some friends. Baby boy was incredibly active during the loud parts of the movie and even kicked me in the amnio spot (ow!) which was still tender.
We did a bit of walking but not a lot, and it was pretty slow. After the movie we went home and Nick called his parents and told them about the blood test results.
As soon as he hung up I stood up to go to bed. And then... I felt like I was...peeing myself? I felt a gush and quickly made my way to the bathroom. It felt like when your period starts unexpectedly. I sat down on the toilet and saw that my underwear was soaked with blood and it had leaked through my jean shorts. As I sat on the toilet, blood came out for about 10 seconds.
Surprisingly I was not scared, more resigned. Thankfully, the blood stopped pouring out so much. Nick got me a pad and new underwear and pants and I called labor and delivery again. We went right in.
They did another speculum exam and saw bleeding. They ran more blood tests (they had done some that morning too) and put in an IV (in the bend of my wrist--owwww. Do not let them do this. You can't move your hand.) Then they called paramedics to transport me to the 2nd opinion hospital which was better equipped to deal with a placenta previa bleed and potential preterm labor.
Preterm labor at 25 weeks is no joke. 23-24 weeks is the cutoff for viability. If baby boy is born now, he would have a fight to survive and develop normally. I was given a steroid shot in my back/butt area which helps his lung, neuro, and skin development in case he came out early. You can get 2 courses of steroid shots for preterm labor safely, and each course is 2 shots 24 hours apart.
The paramedics came and loaded me up into an ambulance. I felt really silly because I felt fine. Nick followed us to the hospital (ambulances are crazy bumpy, fyi).
We went into the hospital and into triage in a preterm/labor area. I had another exam done and they saw a blood clot at my cervix but not active bleeding. (Yay!) I was still spotting quite a bit. They moved us into a huge private room in the PICU (Preterm Intensive Care Unit). They re-did my IV because my arm was swollen from fluids and I couldn't move my wrist. This IV was on my forearm and was much better! They hooked monitors on for baby's heartbeat and to check contractions and left those on for 24 hours. At this point it was about 4 am and they brought in a chair for Nick to sleep in. He could have gone home but I was pretty nervous and he stayed for me.
We got about 2 hours sleep before doctors came in.
We were told that we would stay for 3 days to be monitored. They drew more blood for tests (at this point I counted, and I had been stuck about 10 times in five days).
Honestly, the days kind of blended together. I had lovely nurses. The first day I had red spotting still, and may have had another speculum exam, I can't remember. Nick and I had been up for over 30 hours with 2 hours sleep. He went home to sleep for a while and I tried but couldn't. We spent the day quietly with lots of pop-ins from nurses and doctors, and lots of monitoring. I was not allowed to eat until midnight of that night in case we needed an emergency c-section. Liquid diets are no fun, fyi.
We talked to a NICU doctor who was perfectly lovely and the NICU sounds amazing... but 25 weeks is too early. 26 weeks is slightly better because he'd have more surfactant in his lungs, but still the first goal is to make it to 28 weeks. After that, 32 weeks. They told us they had a baby born at 23 weeks who was in the NICU right then. It's amazing what they can do, but there are still lots of potential complications that we want to try to avoid. Keep cooking, little guy!
At midnight I received my second steroid shot (I learned to rub the heck out of that sore spot for like 5-10 minutes. That one hardly hurt the next day but the first shot I didn't rub hurt all the next day). I got about 6 hours sleep that night with all the checks for vitals. I was also moved to a more stable area for monitoring, a smaller private room with a more comfortable bed and moon walk booties (compression tubes for your calves to prevent blood clots). I was taken off of continuous monitoring (which was nice, baby boy likes to move away from the monitors and kick them, which was hilarious but made the nurses come in all the time to adjust them!).
Sunday and Monday were quiet days. Nick and I played some card games Sunday and spent a lot of time talking to parents and friends. The spotting continued to decrease which was perfect. I was also allowed to eat and totally took advantage!
Monday Nick had to go to work and I took it easy, but the time really flew! I was busy making phone calls and writing up this blog, as well as helping my mom work on redoing our vacation. We were going to go to Disney World a week from the bleeding episode, but my doctors forbade travel. We need to stay close in case of more bleeding, and stay close to a NICU.
I got a prescription for macrobid for a tiny bladder infection and talked to my doctor at the original hospital. Monday at 7pm my IV was removed and we got to go home! This hospital was wonderful but I am exhausted from all the resting. I'm very happy to be home! Now the goal is to take it easy and keep baby boy cooking away.
Tomorrow we have a fetal MRI an hour away at a children's hospital. This will hopefully give us more answers about what is going on with our boy!
We spent 3 hours at Labor and Delivery at my normal hospital getting checked out. They did not see any active bleeding, and let us go home.
One of the doctors found out our Informaseq results (a Non-Invasive Prenatal...Something that is called NIPS, other tests in this category are the Harmony, Materniti21...etc.) We were negative for Trisomies 21, 13, and 18! And baby boy was definitely a boy. Yay! We were expecting this news because none of the ultrasounds showed typical indicators of these trisomies, but still. Sigh of relief.
I spent the day quietly and Nick went to work. That afternoon we saw Avengers 2 (awesome movie!) with some friends. Baby boy was incredibly active during the loud parts of the movie and even kicked me in the amnio spot (ow!) which was still tender.
We did a bit of walking but not a lot, and it was pretty slow. After the movie we went home and Nick called his parents and told them about the blood test results.
As soon as he hung up I stood up to go to bed. And then... I felt like I was...peeing myself? I felt a gush and quickly made my way to the bathroom. It felt like when your period starts unexpectedly. I sat down on the toilet and saw that my underwear was soaked with blood and it had leaked through my jean shorts. As I sat on the toilet, blood came out for about 10 seconds.
Surprisingly I was not scared, more resigned. Thankfully, the blood stopped pouring out so much. Nick got me a pad and new underwear and pants and I called labor and delivery again. We went right in.
They did another speculum exam and saw bleeding. They ran more blood tests (they had done some that morning too) and put in an IV (in the bend of my wrist--owwww. Do not let them do this. You can't move your hand.) Then they called paramedics to transport me to the 2nd opinion hospital which was better equipped to deal with a placenta previa bleed and potential preterm labor.
Preterm labor at 25 weeks is no joke. 23-24 weeks is the cutoff for viability. If baby boy is born now, he would have a fight to survive and develop normally. I was given a steroid shot in my back/butt area which helps his lung, neuro, and skin development in case he came out early. You can get 2 courses of steroid shots for preterm labor safely, and each course is 2 shots 24 hours apart.
The paramedics came and loaded me up into an ambulance. I felt really silly because I felt fine. Nick followed us to the hospital (ambulances are crazy bumpy, fyi).
We went into the hospital and into triage in a preterm/labor area. I had another exam done and they saw a blood clot at my cervix but not active bleeding. (Yay!) I was still spotting quite a bit. They moved us into a huge private room in the PICU (Preterm Intensive Care Unit). They re-did my IV because my arm was swollen from fluids and I couldn't move my wrist. This IV was on my forearm and was much better! They hooked monitors on for baby's heartbeat and to check contractions and left those on for 24 hours. At this point it was about 4 am and they brought in a chair for Nick to sleep in. He could have gone home but I was pretty nervous and he stayed for me.
We got about 2 hours sleep before doctors came in.
We were told that we would stay for 3 days to be monitored. They drew more blood for tests (at this point I counted, and I had been stuck about 10 times in five days).
Honestly, the days kind of blended together. I had lovely nurses. The first day I had red spotting still, and may have had another speculum exam, I can't remember. Nick and I had been up for over 30 hours with 2 hours sleep. He went home to sleep for a while and I tried but couldn't. We spent the day quietly with lots of pop-ins from nurses and doctors, and lots of monitoring. I was not allowed to eat until midnight of that night in case we needed an emergency c-section. Liquid diets are no fun, fyi.
We talked to a NICU doctor who was perfectly lovely and the NICU sounds amazing... but 25 weeks is too early. 26 weeks is slightly better because he'd have more surfactant in his lungs, but still the first goal is to make it to 28 weeks. After that, 32 weeks. They told us they had a baby born at 23 weeks who was in the NICU right then. It's amazing what they can do, but there are still lots of potential complications that we want to try to avoid. Keep cooking, little guy!
Sunday and Monday were quiet days. Nick and I played some card games Sunday and spent a lot of time talking to parents and friends. The spotting continued to decrease which was perfect. I was also allowed to eat and totally took advantage!
Monday Nick had to go to work and I took it easy, but the time really flew! I was busy making phone calls and writing up this blog, as well as helping my mom work on redoing our vacation. We were going to go to Disney World a week from the bleeding episode, but my doctors forbade travel. We need to stay close in case of more bleeding, and stay close to a NICU.
I got a prescription for macrobid for a tiny bladder infection and talked to my doctor at the original hospital. Monday at 7pm my IV was removed and we got to go home! This hospital was wonderful but I am exhausted from all the resting. I'm very happy to be home! Now the goal is to take it easy and keep baby boy cooking away.
Tomorrow we have a fetal MRI an hour away at a children's hospital. This will hopefully give us more answers about what is going on with our boy!
Amniocentesis
Two days after our 2nd opinion visit, we went back in for an amniocentesis.
I was not looking forward to this.
Essentially they take a long thin needle and insert it through my belly, into the uterus, and take a sample of amniotic fluid. 20 cc is about a shot glass and a half (how I explained it to my dad). Considering we already had low fluid, I was concerned about them taking more.
The procedure started with an ultrasound to see where baby was and if there were pockets of fluid for them to take. The tech measured fluid at 11, which is normal (over 10 is okay) but when the Dr came in she was shocked at how low it looked visually. She was confident she could get a sample for the amnio however.
We also wanted a little extra fluid drawn for the FISH results, which is essentially a really fast amnio result. It uses fluorescent staining to see if baby has any of the trisomy genetic problems. Results come in 3 days instead of 7-14.
This scan gave us a little bit of brighter news! Dr. K thought that the brain looked just fine--no worries about that lateral ventricle. She also thought the fluid looked a little better--perhaps he was replenishing it! Baby boy always has some in his bladder and is peeing it out like he is supposed to, which is awesome. She did note the enlarged kidneys and also noticed his bowels are slightly echogenic as well. Again, this could be normal or could not. (Sigh.)
Then it was time for the procedure. (EEEk.)
They scrubbed my belly with betadine a few times and covered the ultrasound wand to make it sterile. They kept the ultrasound going the whole time so that they could see where they were and see where baby was. Dr. K did say not to worry, because if baby bumped the needle he would do what we do--move away! Whew. She brought over a truly gigantic needle (maybe 4 inches?) and I decided I should look at the picture on the wall and now what they were doing.
They held the wand on the left side of my belly where they had a good pocket of fluid. The doctor warned me that I would feel the needle but it was like getting blood drawn--however, sometimes the needle caused cramping when it went in the uterus.
She did not lie. I felt it go through skin, then the uterus (ow ow ow). It was right by the ulrasound wand and it was not pleasant at all. I felt a lot of pressure and a bit of pain. It was not unbearable by any means, but it was highly unpleasant. I believe it lasted about 2 minutes because my fluid was so low it took a while longer to get enough. Towards the end I had to ask Nick to distract me by talking. He was so good and held my hand the whole time, though he couldn't look at the needle either. I did look up at the ultrasound screen once or twice--it showed baby boy's head and the needle quite close to it! He stayed far enough away, thank goodness, because if they had to poke me again for more I would not have been happy.
The needle removal was painless, thank goodness. Then I got to roll on my side for a rhogam shot because my blood type is negative rh factor (you know that plus or minus after your blood type? If you have negative, and you partner is positive, your baby may be positive. Your body can form antibodies that attack baby and cause anemia and other bad things. It usually doesn't happen until baby number 2 because you have to have your blood mix, and that usually happens at birth. With a shot of rhogam a few times, that risk is mitigated.) Because the amnio caused our blood to mix, I got a shot of rhogam right above my butt. Lovely.
Then I got to have my blood drawn for the micro array. I was confused because I thought it was done with the amnio, but apparently not. Or maybe both. Honestly, I was so light-headed and shaky that I didn't care. It took forever for this lady to get my blood out. Nick guessed my blood pressure was low from the procedure which is why it took so long.
FINALLY we were done. We went back home and I went to the couch and Nick brought me some delicious sugary tart lemonade. I wasn't too uncomfortable any more but I did have some tenderness.
All in all, I dislike amnios. However, the results it gives are important and if it is a test you need done.... I guess just bite the bullet and get 'er done. I would do it again for the peace of mind the results would give. But I might ask for a local anesthetic or numbing spray ahead of time!
That night my uncle was in town so we went out for a quiet dinner at a hole-in-the-wall Mexican place. It was lovely to see him and a great distraction!
I was not looking forward to this.
Essentially they take a long thin needle and insert it through my belly, into the uterus, and take a sample of amniotic fluid. 20 cc is about a shot glass and a half (how I explained it to my dad). Considering we already had low fluid, I was concerned about them taking more.
The procedure started with an ultrasound to see where baby was and if there were pockets of fluid for them to take. The tech measured fluid at 11, which is normal (over 10 is okay) but when the Dr came in she was shocked at how low it looked visually. She was confident she could get a sample for the amnio however.
We also wanted a little extra fluid drawn for the FISH results, which is essentially a really fast amnio result. It uses fluorescent staining to see if baby has any of the trisomy genetic problems. Results come in 3 days instead of 7-14.
This scan gave us a little bit of brighter news! Dr. K thought that the brain looked just fine--no worries about that lateral ventricle. She also thought the fluid looked a little better--perhaps he was replenishing it! Baby boy always has some in his bladder and is peeing it out like he is supposed to, which is awesome. She did note the enlarged kidneys and also noticed his bowels are slightly echogenic as well. Again, this could be normal or could not. (Sigh.)
Then it was time for the procedure. (EEEk.)
They scrubbed my belly with betadine a few times and covered the ultrasound wand to make it sterile. They kept the ultrasound going the whole time so that they could see where they were and see where baby was. Dr. K did say not to worry, because if baby bumped the needle he would do what we do--move away! Whew. She brought over a truly gigantic needle (maybe 4 inches?) and I decided I should look at the picture on the wall and now what they were doing.
They held the wand on the left side of my belly where they had a good pocket of fluid. The doctor warned me that I would feel the needle but it was like getting blood drawn--however, sometimes the needle caused cramping when it went in the uterus.
She did not lie. I felt it go through skin, then the uterus (ow ow ow). It was right by the ulrasound wand and it was not pleasant at all. I felt a lot of pressure and a bit of pain. It was not unbearable by any means, but it was highly unpleasant. I believe it lasted about 2 minutes because my fluid was so low it took a while longer to get enough. Towards the end I had to ask Nick to distract me by talking. He was so good and held my hand the whole time, though he couldn't look at the needle either. I did look up at the ultrasound screen once or twice--it showed baby boy's head and the needle quite close to it! He stayed far enough away, thank goodness, because if they had to poke me again for more I would not have been happy.
The needle removal was painless, thank goodness. Then I got to roll on my side for a rhogam shot because my blood type is negative rh factor (you know that plus or minus after your blood type? If you have negative, and you partner is positive, your baby may be positive. Your body can form antibodies that attack baby and cause anemia and other bad things. It usually doesn't happen until baby number 2 because you have to have your blood mix, and that usually happens at birth. With a shot of rhogam a few times, that risk is mitigated.) Because the amnio caused our blood to mix, I got a shot of rhogam right above my butt. Lovely.
Then I got to have my blood drawn for the micro array. I was confused because I thought it was done with the amnio, but apparently not. Or maybe both. Honestly, I was so light-headed and shaky that I didn't care. It took forever for this lady to get my blood out. Nick guessed my blood pressure was low from the procedure which is why it took so long.
FINALLY we were done. We went back home and I went to the couch and Nick brought me some delicious sugary tart lemonade. I wasn't too uncomfortable any more but I did have some tenderness.
All in all, I dislike amnios. However, the results it gives are important and if it is a test you need done.... I guess just bite the bullet and get 'er done. I would do it again for the peace of mind the results would give. But I might ask for a local anesthetic or numbing spray ahead of time!
That night my uncle was in town so we went out for a quiet dinner at a hole-in-the-wall Mexican place. It was lovely to see him and a great distraction!
2nd Opinion Visit
So after a week of worry, we made our way to our second opinion doctors appointment. This was at a highly respected hospital right by our house, with a great NICU if we needed it. (Let's hope not!)
We went to their ultrasound and genetic clinic. We had a very thorough level II ultrasound with a lovely young technician. She measured everything and was very calming. Then Dr. S came in and discussed with us what he'd seen in the ultrasound after reviewing it. He also took some measurements.
He noticed that yes, the head circumference and long bones were lagging. The lateral ventricle in the brain also looked a little enlarged--could be normal, could not. (The story of this pregnancy.) The kidneys were slightly enlarged and slightly echogenic (bright). The foot to femur ratio was a little low but not abnormal.
He felt that it could be a syndrome of some kind. It might not, but it looked that way.
Then we met with a genetic counsellor. She was lovely and kind, and explained in more detail what these findings could mean. She discussed how we all have 46 chromosomes, and talked about what trisomies were and how they could impact the baby if that's what it was. She talked about how each chromosome is made up of tiny genes, and how the genes could be in the wrong spot (translocation), duplicated, or deleted. And these genes being wrong makes a syndrome.
We sat and absorbed and asked what questions we could. It was hard.
Then Dr. S came in again. He recommended we get a fetal MRI to look at baby more closely. An MRI can give us so much more detail about what is going on with baby than an ultrasound, so we jumped on it. He also recommended an amniocentesis, which is a genetic testing procedure where a needle is inserted through my stomach and into the uterus and withdraws about 20 cc of amniotic fluid. This fluid is then karyotyped into chromosomes for them to look for trisomies. They can also test for genes by doing a micro array and looking really closely at those.
We agreed. We could have done it the same day but honestly we were so overwhelmed we thought maybe we would wait a day. Plus we were waiting on the blood test results my doctor had ordered already, which would tell us trisomy risk.
We went home in a fog. Still no answers. Still only worry.
We went to their ultrasound and genetic clinic. We had a very thorough level II ultrasound with a lovely young technician. She measured everything and was very calming. Then Dr. S came in and discussed with us what he'd seen in the ultrasound after reviewing it. He also took some measurements.
He noticed that yes, the head circumference and long bones were lagging. The lateral ventricle in the brain also looked a little enlarged--could be normal, could not. (The story of this pregnancy.) The kidneys were slightly enlarged and slightly echogenic (bright). The foot to femur ratio was a little low but not abnormal.
He felt that it could be a syndrome of some kind. It might not, but it looked that way.
Then we met with a genetic counsellor. She was lovely and kind, and explained in more detail what these findings could mean. She discussed how we all have 46 chromosomes, and talked about what trisomies were and how they could impact the baby if that's what it was. She talked about how each chromosome is made up of tiny genes, and how the genes could be in the wrong spot (translocation), duplicated, or deleted. And these genes being wrong makes a syndrome.
We sat and absorbed and asked what questions we could. It was hard.
Then Dr. S came in again. He recommended we get a fetal MRI to look at baby more closely. An MRI can give us so much more detail about what is going on with baby than an ultrasound, so we jumped on it. He also recommended an amniocentesis, which is a genetic testing procedure where a needle is inserted through my stomach and into the uterus and withdraws about 20 cc of amniotic fluid. This fluid is then karyotyped into chromosomes for them to look for trisomies. They can also test for genes by doing a micro array and looking really closely at those.
We agreed. We could have done it the same day but honestly we were so overwhelmed we thought maybe we would wait a day. Plus we were waiting on the blood test results my doctor had ordered already, which would tell us trisomy risk.
We went home in a fog. Still no answers. Still only worry.
Thinking About Difficult Decisions
The week wait for our second opinion was hard. I was constantly on the edge of tears. No one wants to be told their baby may not be healthy, and I'm sure everyone would deal with it differently.
In the beginning of this pregnancy, Nick and I agreed that our personal choice would be to terminate the pregnancy in the case of severe genetic defects. We had a sequential screening done, which consists of two blood tests at 12 and 16 weeks of pregnancy, and an ultrasound at 12 weeks that measures the nuchal fold--the space behind the baby's neck. These tests can indicate down syndrome (Trisomy 21) or Trisomy 13 or 18, of which the last two are often fatal in utero or shortly after birth. Our results came back with a very low probability of our baby having these chromosomal issues.
Now we found ourselves faced with an even more difficult choice. Something is wrong. It may be nothing serious, it may be mild, or it may be severe. It may result in developmental delays, or cognitive or physical restrictions. This awful gray area gave us no room to breathe, and no room to plan. It was all "What If's?"
What if the baby has a placental issue? Well, then we monitor growth and take him out when he isn't growing. Maybe spend time in the NICU.
What if the baby has an infection? Well depending on that infection, it could result in blindness, developmental delays, mental retardation, or physical deformities. (Holy crap did that accelerate. The only thing stopping blind panic there is that our ultrasound showed no deformities, just lags).
What if the baby has a genetic problem? Well, then it gets tricky. If he had a fatal abnormality, I would probably want to terminate. It seems to me that our responsibility as parents is to keep our babies safe, and the grief of the decision would be less than the grief of knowing he was suffering as he grew or as he was born. There are many syndromes (I believe over 200) and they also range from mild inconveniences to life altering problems. Depending on the severity, we would again consider terminating.
But at 24 weeks, that choice seemed like it may not be a possibility. Many states impose 22 week restrictions for abortions, including the state we are in. There are a few scattered clinics in the United States that will do late-term abortions for fetal abnormalities. We later learned the costs range from $7,000 to over $25,000. The procedure itself is not as bad as the media seems to portray--the fluid or the baby is injected with something that stops their heart, and they pass away inside. Then the mother is given medications that cause her to go into labor, and the baby is delivered stillborn. With my previa, however, I have to wonder if this procedure is even possible, or if it would become even more prohibitively expensive.
This is an intensely personal decision. Our choice to terminate early on in pregnancy for a genetic abnormality was now being tested even further. We have felt this baby move, we have heard his heart, and he has been given a name. We have baby items and are planning a nursery; talk about how we will take him on vacations and to the park; discuss how our lives will be different. We want this little boy. We really, really do.
The thought of having a late-term abortion is wrenching. Aside from the societal prejudices (and dangers--one late-term abortion provider was murdered just a few years ago), it is time-consuming, expensive, and would weigh on me for the rest of my life.
It has to be compared, however, to the costs of keeping a special needs child. Parents of children with special needs are more likely to divorce, have financial trouble, and deal with long-term stress. Usually one parent quits their job and becomes a full time caregiver--doctors appointments, therapies, day-to-day living requirements... our lives would never again be our own. Of course there is no guarantee with a typical developing child, but there is a general expectation of having some more freedom with an "empty nest". The ability to travel, to focus on our own relationship, to give energy to our other potential children... the pros and cons have to be weighed.
My experience with special needs children is low to moderate. I have worked with a variety of special needs in my schooling to get my teaching degree, and volunteered in an after-school program for special needs kids. I enjoyed my time with them--because I was only with them for a few hours. But when I think of the work that they would need in their everyday lives, I feel terrified. A girl I volunteered specifically with had a nurse nanny every day. She was missing parts of her brain and had seizures, was on tons of medication, and was incapable of living without others taking care of her. That is not the life I want for Nick and I.
So we wait. We know that late-term abortions are a possibility up to at least 30 weeks, and some can go up even farther. It would drain our bank accounts and our hearts.
After turning these "what if's" over in my mind... I've had to put them away. We know it is a possibility. We know. And now we have to wait and see what happens. And hope for the best.
In the beginning of this pregnancy, Nick and I agreed that our personal choice would be to terminate the pregnancy in the case of severe genetic defects. We had a sequential screening done, which consists of two blood tests at 12 and 16 weeks of pregnancy, and an ultrasound at 12 weeks that measures the nuchal fold--the space behind the baby's neck. These tests can indicate down syndrome (Trisomy 21) or Trisomy 13 or 18, of which the last two are often fatal in utero or shortly after birth. Our results came back with a very low probability of our baby having these chromosomal issues.
Now we found ourselves faced with an even more difficult choice. Something is wrong. It may be nothing serious, it may be mild, or it may be severe. It may result in developmental delays, or cognitive or physical restrictions. This awful gray area gave us no room to breathe, and no room to plan. It was all "What If's?"
What if the baby has a placental issue? Well, then we monitor growth and take him out when he isn't growing. Maybe spend time in the NICU.
What if the baby has an infection? Well depending on that infection, it could result in blindness, developmental delays, mental retardation, or physical deformities. (Holy crap did that accelerate. The only thing stopping blind panic there is that our ultrasound showed no deformities, just lags).
What if the baby has a genetic problem? Well, then it gets tricky. If he had a fatal abnormality, I would probably want to terminate. It seems to me that our responsibility as parents is to keep our babies safe, and the grief of the decision would be less than the grief of knowing he was suffering as he grew or as he was born. There are many syndromes (I believe over 200) and they also range from mild inconveniences to life altering problems. Depending on the severity, we would again consider terminating.
But at 24 weeks, that choice seemed like it may not be a possibility. Many states impose 22 week restrictions for abortions, including the state we are in. There are a few scattered clinics in the United States that will do late-term abortions for fetal abnormalities. We later learned the costs range from $7,000 to over $25,000. The procedure itself is not as bad as the media seems to portray--the fluid or the baby is injected with something that stops their heart, and they pass away inside. Then the mother is given medications that cause her to go into labor, and the baby is delivered stillborn. With my previa, however, I have to wonder if this procedure is even possible, or if it would become even more prohibitively expensive.
This is an intensely personal decision. Our choice to terminate early on in pregnancy for a genetic abnormality was now being tested even further. We have felt this baby move, we have heard his heart, and he has been given a name. We have baby items and are planning a nursery; talk about how we will take him on vacations and to the park; discuss how our lives will be different. We want this little boy. We really, really do.
The thought of having a late-term abortion is wrenching. Aside from the societal prejudices (and dangers--one late-term abortion provider was murdered just a few years ago), it is time-consuming, expensive, and would weigh on me for the rest of my life.
It has to be compared, however, to the costs of keeping a special needs child. Parents of children with special needs are more likely to divorce, have financial trouble, and deal with long-term stress. Usually one parent quits their job and becomes a full time caregiver--doctors appointments, therapies, day-to-day living requirements... our lives would never again be our own. Of course there is no guarantee with a typical developing child, but there is a general expectation of having some more freedom with an "empty nest". The ability to travel, to focus on our own relationship, to give energy to our other potential children... the pros and cons have to be weighed.
My experience with special needs children is low to moderate. I have worked with a variety of special needs in my schooling to get my teaching degree, and volunteered in an after-school program for special needs kids. I enjoyed my time with them--because I was only with them for a few hours. But when I think of the work that they would need in their everyday lives, I feel terrified. A girl I volunteered specifically with had a nurse nanny every day. She was missing parts of her brain and had seizures, was on tons of medication, and was incapable of living without others taking care of her. That is not the life I want for Nick and I.
So we wait. We know that late-term abortions are a possibility up to at least 30 weeks, and some can go up even farther. It would drain our bank accounts and our hearts.
After turning these "what if's" over in my mind... I've had to put them away. We know it is a possibility. We know. And now we have to wait and see what happens. And hope for the best.
High Risk Obstetrician Visit
At about 24 weeks of pregnancy I had my first high-risk ob visit for complete placenta previa. I was expecting the visit to be all discussion, and that I probably would be put on pelvic rest (no fun.) I even told Nick to stay at work since it would be all talk and I would be in and out! I was soooo wrong.
I had an ultrasound done and the technician noted that I had very low amniotic fluid, as well as some of his bone growth was not where we wanted it to be. At 24 weeks, his head circumference, femur length, humerus, tibia and fibula were all about 1.5 weeks behind. His cord only had 2 vessels instead of 3. His brain and heart looked great but there was definite cause for concern.
So I'm sitting there, shivering with nerves, wishing I'd brought my darn phone in from the car so I could try to get a hold of Nick, and surrounded by my doctor, the technician, and a nurse who check me to make sure I'm not leaking fluid, and start discussing what these results could mean.
It was awful. Basically, all of his measurements and all of these odd things (placenta previa, placenta looks "thick" and globular, low fluid, lagging measurements) were within normal limits on their own--but having so many odd things meant it could be something serious.
There were three main ideas of what could be wrong:
1) Placental problems for some odd reason, which means he is not growing the way he should. Could indicate IUGR (intra-uterine growth restriction [doesn't grow right because of lack of nutrients, etc.])
2) Exposure to some kind of infection during pregnancy: toxoplasmosis, parvo (Fifths disease, that red cheek disease kids can get), cytomegalovirus (cmv, a very common virus many adults are exposed to). These diseases could cause the problems we were seeing and could result in serious problems for baby.
3) Genetic issue: something in the chromosomes or genes is wrong and is causing the placenta to be odd and fluid to be low and baby growth to lag. This is the scariest one for us because there are so many possibilities, and we are uncomfortable with the idea of having to raise a special needs child.
I had blood drawn for many tests and sat there feeling sick as the doctor told me she feels we should get a second opinion. She referred us to a great hospital with a fantastic NICU right by our house. We were slotted in less than a week later.
I had an ultrasound done and the technician noted that I had very low amniotic fluid, as well as some of his bone growth was not where we wanted it to be. At 24 weeks, his head circumference, femur length, humerus, tibia and fibula were all about 1.5 weeks behind. His cord only had 2 vessels instead of 3. His brain and heart looked great but there was definite cause for concern.
So I'm sitting there, shivering with nerves, wishing I'd brought my darn phone in from the car so I could try to get a hold of Nick, and surrounded by my doctor, the technician, and a nurse who check me to make sure I'm not leaking fluid, and start discussing what these results could mean.
It was awful. Basically, all of his measurements and all of these odd things (placenta previa, placenta looks "thick" and globular, low fluid, lagging measurements) were within normal limits on their own--but having so many odd things meant it could be something serious.
There were three main ideas of what could be wrong:
1) Placental problems for some odd reason, which means he is not growing the way he should. Could indicate IUGR (intra-uterine growth restriction [doesn't grow right because of lack of nutrients, etc.])
2) Exposure to some kind of infection during pregnancy: toxoplasmosis, parvo (Fifths disease, that red cheek disease kids can get), cytomegalovirus (cmv, a very common virus many adults are exposed to). These diseases could cause the problems we were seeing and could result in serious problems for baby.
3) Genetic issue: something in the chromosomes or genes is wrong and is causing the placenta to be odd and fluid to be low and baby growth to lag. This is the scariest one for us because there are so many possibilities, and we are uncomfortable with the idea of having to raise a special needs child.
I had blood drawn for many tests and sat there feeling sick as the doctor told me she feels we should get a second opinion. She referred us to a great hospital with a fantastic NICU right by our house. We were slotted in less than a week later.
Baby Boy
We found out we were expecting a baby December 11th, 2014! We were terrified and excited. Even with deciding we were ready, seeing those two lines and the word "pregnant" is a life-changer.
This has not been the easiest pregnancy in the world, starting off with a sub-chorionic hematoma (a bleed by the utrerus) that we actually thought may be a miscarriage. But the next week we saw a little blob with a heartbeat!
I had some nausea, the worst was through weeks 9 through about 12, and only threw up once. I was super tired and picky with my food but always hungry!
Our anatomy ultrasound was done between 21-22 weeks, and we found out we were having a boy!!! We were thrilled and started discussing names (which we haven't shared, deciding to keep it to ourselves. We do share silly names like "Nope" with our families though!)
At that ultrasound they thought I had marginal placenta previa, which means the placenta is too close to the cervix for comfort. They scheduled another ultrasound in a week to check and because baby boy wasn't cooperating for all of his pictures.
A week later we confirmed he most definitely had boy parts! And we found instead of marginal previa, I had complete placenta previa--totally covering my cervix. This raises the risk of bleeding, preterm labor, and requires a c-section since you can't push a baby out through a placenta.
Complete placenta previa placed us in the high-risk category, so I was fit in a week later for a visit with a high-risk ob at my hospital. I spent the week fretting about not being able to labor--not the end of the world, but still a part of pregnancy that I probably would not be able to experience.
The high risk ob visit, however, made previa the least of my concerns.
This has not been the easiest pregnancy in the world, starting off with a sub-chorionic hematoma (a bleed by the utrerus) that we actually thought may be a miscarriage. But the next week we saw a little blob with a heartbeat!
I had some nausea, the worst was through weeks 9 through about 12, and only threw up once. I was super tired and picky with my food but always hungry!
Our anatomy ultrasound was done between 21-22 weeks, and we found out we were having a boy!!! We were thrilled and started discussing names (which we haven't shared, deciding to keep it to ourselves. We do share silly names like "Nope" with our families though!)
At that ultrasound they thought I had marginal placenta previa, which means the placenta is too close to the cervix for comfort. They scheduled another ultrasound in a week to check and because baby boy wasn't cooperating for all of his pictures.
A week later we confirmed he most definitely had boy parts! And we found instead of marginal previa, I had complete placenta previa--totally covering my cervix. This raises the risk of bleeding, preterm labor, and requires a c-section since you can't push a baby out through a placenta.
Complete placenta previa placed us in the high-risk category, so I was fit in a week later for a visit with a high-risk ob at my hospital. I spent the week fretting about not being able to labor--not the end of the world, but still a part of pregnancy that I probably would not be able to experience.
The high risk ob visit, however, made previa the least of my concerns.
Tuesday, October 14, 2014
First Two Days of OTS
Nick has had 1 1/2 days of Officer Training School so far! He is only allowed to have his phone for a very short time at night before lights out.
He sounds exhausted and stressed, which I think will be the norm for the next few weeks.
He sounds exhausted and stressed, which I think will be the norm for the next few weeks.
Wednesday, August 6, 2014
First Military PCS--Our Move to Ohio from California
This has been the craziest few weeks of my life. We got our PCS--or Permanent Change of Station--orders from the Air Force on July 14th. One week later, we had packed up all our belongings in our one-bedroom apartment and shipped them off to Ohio in moving pods. Four days after our things left, we started our drive. We left on a Friday morning and arrived Monday afternoon, averaging about ten hour days.
The next two days, we frantically house-hunted, looking for a rental house that would suit our needs. We chose one in a kind of sketchy area that had been renovated and is just beautiful on the inside. Wednesday morning, we had the keys. The next days were a blur of turning on utilities (we had no hot showers until after the weekend!). Friday afternoon saw our belongings delivered in the pods for us to unpack, and we were done by Monday, including hiring two guys to move our couch and upright piano. Whew!
Tuesday morning, I dropped Nick off at the airport. He is now in Maxwell, Alabama for Officer Training School, a 9 week program that will have him graduate as a 2nd lieutenant.
... this is not normally how the Air Force works, to my understanding. Usually, one receives at least 2 months notice for a move. Furthermore, it is unusual for the officer trainee to move before the training starts, not to mention toting his spouse along for the ride.
Basically, because Nick is in this weird program called TDSP (Technical-Degree Sponsorship Program), where he was a part of the air force but essentially still finishing his degree as an engineer before having to really participate, his situation is really confusing to people. And somehow mixed messages came across, and we ended up moving earlier than we probably should have.
So, now I am in Ohio all by my lonesome, unpacking a house and searching for a job.
On the bright side, I totally have an excuse to get a cat. And a dog. Yay!
On the even brighter side, my cousin Jessica is coming out to stay with me because I am sad to live all by myself in a gigantic house in a new place. Yayyayyay!
Whew, that was a lot of words. How about some pictures of our drive? We actually enjoyed it, even though it was so stressful thinking of all we had to do!
Sunday, April 27, 2014
Bikini Body Challenge
Summer is a-coming, and unfortunately, married life has gifted me with an extra 20 pounds. (Bummer!) My brand spankin-new husband is pretty amazing, but after the wedding craze (MUST FIT INTO DRESS) I slacked. I've been super busy with my teaching credential program as well, and there is a handy Taco Bell right by my school, and...
Well, yeah.
In any case, it is time to begin the Bikini Body Challenge (BBC) of 2014! We might be moving to Florida and I would really like to be able to wear a bikini without hiding behind my sundress. I graduate in June and then we are moving (somewhere!) for Nick's career in the Air Force as an engineer (the cutest engineer you have EVER seen), and basically now life has simmered down from the rapid boil it was at over the last 10 months, and it is time to focus on health.
I'll be tracking my meals on my ipad, exercising as much as I can (when I convince my sorry behind to go to the gym or for a run, argh) and trying to get to my goal weight of 150! (Sad note: That is farther away than I would like.) If I lose 1-2 pounds a week that is.... a long time. But I can do it! (Probably!)
PS: I used to write on my old blog, Serendipity of a Symington, but I liked where I ended it--with my engagement. This is a new start, with plenty of adventures ahead!
Well, yeah.
In any case, it is time to begin the Bikini Body Challenge (BBC) of 2014! We might be moving to Florida and I would really like to be able to wear a bikini without hiding behind my sundress. I graduate in June and then we are moving (somewhere!) for Nick's career in the Air Force as an engineer (the cutest engineer you have EVER seen), and basically now life has simmered down from the rapid boil it was at over the last 10 months, and it is time to focus on health.
I'll be tracking my meals on my ipad, exercising as much as I can (when I convince my sorry behind to go to the gym or for a run, argh) and trying to get to my goal weight of 150! (Sad note: That is farther away than I would like.) If I lose 1-2 pounds a week that is.... a long time. But I can do it! (Probably!)
PS: I used to write on my old blog, Serendipity of a Symington, but I liked where I ended it--with my engagement. This is a new start, with plenty of adventures ahead!
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