Just a quick update...
We got the final results from the amniocentesis today. The results confirmed Trisomy 21 (Down Syndrome). Of course this isn't a surprise. I (Melissa) am making my summer to-do list and the top of the list is getting educated on DS and how we can best care for our baby. There is so much that we can do for our child to give him a better life and we plan to do all of it. :) We are blessed to live in a great school district that offers various services for special needs children, many that are FREE. It is amazing how God worked out taking the year off from teaching , long before we knew our child would have DS. Many people have asked if I will return to teaching in 2011. I honestly do not know. The plan was to go back part-time but now that Junior has DS, there is a good chance that I will not return for a few years. We will probably have a better idea after we figure out the severity of the DS and the kind of care that will be required. Our next doctor's appointment is June 1st. I will post another update then.
Monday, May 24, 2010
Sunday, May 23, 2010
Monday, May 17, 2010
Expecting the Unexpected
We got our amniocentesis test results this afternoon. Our baby does in fact have Down Syndrome. We are overwhelmed by the news but we know that God gave us this precious baby boy and we are so excited to be his parents. Now we pick out a name, continue registering, and do everything else first time parents do. We are so thankful for the support we have received from our incredible family and friends! Please continue to pray for us as we process this news and prepare to be parents to a special needs child.
Saturday, May 15, 2010
Now What?
Now we wait for the results of the amnio test. By Monday (May 17th) we should know whether or not the baby has Down's Syndrome, Trisomy 13, or Trisomy 18 (although at this point it seems like 13 and 18 have essentially been ruled out). A week later, we'll get the rest of the results, although Down's is the primary concern so Monday is really the big day.
The truth is that we really hope the baby doesn't have Down's. If it ends up that he does have Down's, we're ready to accept it and plan for it, as hard as it would be. We'd strive to be thankful that God entrusted us with the care of a baby with special needs, and we know we'd love him just as much either way. It's amazing how much we've already connected with this little life, how much we love him, and how big of a part of our family he is.
We're so thankful for all the prayers, support, and encouragement that we've gotten from family and friends in the past few days. It's been a challenging 3 days and we couldn't have gotten through it alone. I think we're both surprised at how well we're doing. We had about 15 people over last night to play cards and today we're going to the Rockies game and planting our garden! We would love your continued prayers during the upcoming weeks and months until our baby is safely home.
The truth is that we really hope the baby doesn't have Down's. If it ends up that he does have Down's, we're ready to accept it and plan for it, as hard as it would be. We'd strive to be thankful that God entrusted us with the care of a baby with special needs, and we know we'd love him just as much either way. It's amazing how much we've already connected with this little life, how much we love him, and how big of a part of our family he is.
We're so thankful for all the prayers, support, and encouragement that we've gotten from family and friends in the past few days. It's been a challenging 3 days and we couldn't have gotten through it alone. I think we're both surprised at how well we're doing. We had about 15 people over last night to play cards and today we're going to the Rockies game and planting our garden! We would love your continued prayers during the upcoming weeks and months until our baby is safely home.
More Ultrasounds - More Doctors
On Thursday at 1pm we had our appointment with the perinatologist, Dr Stettler. A perinatologist is a doctor that specializes in high risk pregnancies. They did an additional ultrasound and basically re-did everything that was had been done the day before. The findings were similar, although Dr Stettler was much less concerned about the heart, but he did have us visit a pediatric cardiologist, later that day.
The main issue with the new ultrasound was the baby's intestines. The baby has a duodenal atresia, which means the small intestine doesn't connect to the stomach. The fact that they can see this on an ultrasound is pretty amazing to us. The duodenal atresia is the reason why the stomach is enlarged. 30% of all babies with duodenal atresias also have Down's Syndrome. Dr Stettler confirmed that babies with chromosomal abnormalities tend to be smaller. Because of that, he recommended that we get an amniocentesis, which would test all of the baby's chromosomes and determine whether or not there are any abnormalities. We'll have some results early next week, and then the rest a week later. The primary concern (in terms of chromosomal abnormalities) is Down's Syndrome.
So what about this duodenal atresia? The duodenal atresia can be fixed! Shortly after birth (within a few days), the baby will have a surgery to connect the small intestine to the stomach. Based on what I've read online, it will take about 2 hours, and has a very high success rate and rarely comes with complications. I've also read that depending on how things go, he could be in the hospital for 2 weeks or longer after the surgery. That sucks. Basically, he won't be able to poop until the small intestine is connected to the stomach, and it takes some time for the surgery to heal and everything to start working correctly. This also means that he won't be able to eat, so he will be fed through an IV in the beginning.
Another issue with the duodenal atresia is due to the baby's stomach issues, he won't be able to swallow very well in the womb. That results in the amniotic fluid building up faster than normal, which usually means premature delivery. Most of the cases I read about online ended up delivering 2 weeks to a month early. Because our baby needs surgery right after birth, he'll now be born at Presbyterian St Luke's in downtown Denver, instead of Skyridge. Our prenatal care has been transferred to Dr Stettler, since this is now considered a higher risk pregnancy.
Lastly, the best news of the day. After seeing Dr Stettler, we went to see the pediatric cardiologist (Dr Miller) on the other side of the hospital. Long story short, there's really nothing wrong with our baby's heart. Due to the way the chambers pump before birth, one chamber appeared to be slightly enlarged, but Dr Miller said it really wasn't enlarged and everything is fine. He predicted that he'll never see us again. Woohoo!! Because 50% of Down's babies have heart problems, he said that might be an argument that our chance of Down's is less than 30%. At this point, we're much more interest in the results of the amnio as opposed to statistics!
The main issue with the new ultrasound was the baby's intestines. The baby has a duodenal atresia, which means the small intestine doesn't connect to the stomach. The fact that they can see this on an ultrasound is pretty amazing to us. The duodenal atresia is the reason why the stomach is enlarged. 30% of all babies with duodenal atresias also have Down's Syndrome. Dr Stettler confirmed that babies with chromosomal abnormalities tend to be smaller. Because of that, he recommended that we get an amniocentesis, which would test all of the baby's chromosomes and determine whether or not there are any abnormalities. We'll have some results early next week, and then the rest a week later. The primary concern (in terms of chromosomal abnormalities) is Down's Syndrome.
So what about this duodenal atresia? The duodenal atresia can be fixed! Shortly after birth (within a few days), the baby will have a surgery to connect the small intestine to the stomach. Based on what I've read online, it will take about 2 hours, and has a very high success rate and rarely comes with complications. I've also read that depending on how things go, he could be in the hospital for 2 weeks or longer after the surgery. That sucks. Basically, he won't be able to poop until the small intestine is connected to the stomach, and it takes some time for the surgery to heal and everything to start working correctly. This also means that he won't be able to eat, so he will be fed through an IV in the beginning.
Another issue with the duodenal atresia is due to the baby's stomach issues, he won't be able to swallow very well in the womb. That results in the amniotic fluid building up faster than normal, which usually means premature delivery. Most of the cases I read about online ended up delivering 2 weeks to a month early. Because our baby needs surgery right after birth, he'll now be born at Presbyterian St Luke's in downtown Denver, instead of Skyridge. Our prenatal care has been transferred to Dr Stettler, since this is now considered a higher risk pregnancy.
Lastly, the best news of the day. After seeing Dr Stettler, we went to see the pediatric cardiologist (Dr Miller) on the other side of the hospital. Long story short, there's really nothing wrong with our baby's heart. Due to the way the chambers pump before birth, one chamber appeared to be slightly enlarged, but Dr Miller said it really wasn't enlarged and everything is fine. He predicted that he'll never see us again. Woohoo!! Because 50% of Down's babies have heart problems, he said that might be an argument that our chance of Down's is less than 30%. At this point, we're much more interest in the results of the amnio as opposed to statistics!
Abnormalities
The joy and excitement of finding out that our baby was a boy came to a screeching halt about 30 minutes after we found out. Our ultrasound appointment was this past Wednesday (May 12th) at 3pm. We were scheduled to see our OB (Dr Voss) at 4pm. While we were waiting for the OB, we called our moms, sent text messages, updated Facebook, etc, so the whole world would know that Baby Johnson is a boy. That's when the OB came in and said "we need to talk about the results of the ultrasound". It was pretty clear that something was wrong.
To back up - Our due date is September 23rd. As the ultrasound tech was taking different measurements, the screen kept displaying estimated delivery dates around October 10th (just over 2 weeks later than our actual due date). I looked at the calendar on my phone and we knew for sure that those dates were wrong. But we just figured that the baby was small. That seemed to make sense since his momma's small.
As it turns out, there's not a ton of variance in size for babies this early (21 weeks), as opposed to the last 2 months of a pregnancy where growth can vary significantly from baby to baby. It could be completely normal to be a little small, but it could also be a sign of chromosomal abnormalities. In addition to the baby being small, the ultrasound also revealed an enlarged stomach and a "prominent" heart. The OB at first said the heart was enlarged but then changed her wording to prominent.
According to Dr Voss, each of these issues individually can be indicators of chromosomal abnormalities such as Down's Syndrome, Trisomy 13, and Trisomy 18. Trisomy 13 and 18 are very serious abnormalities that have very high miscarriage/stillbirth rates and babies with those conditions have less than a 1% chance of living past their first birthday (which we didn't know until later that evening).
So this was all very shocking to us, and very frightening. Dr Voss was able to call a perinatologist (located just down the hall), who was able to get us in the very next day (Thursday May 13th). So we went home pretty teary eyed and in total shock. 30 minutes earlier we were ecstatic to finally know the sex of our baby, and now we were scared, devastated, and in shock.
That night we called family and did lots of research on various chromosomal abnormalities. Learning about Trisomy 13 and 18 made the situation even more frightening. Despite our fear, we tried our best to trust God's sovereignty over the situation, although I'm not so sure we did a great job of it that night!
To back up - Our due date is September 23rd. As the ultrasound tech was taking different measurements, the screen kept displaying estimated delivery dates around October 10th (just over 2 weeks later than our actual due date). I looked at the calendar on my phone and we knew for sure that those dates were wrong. But we just figured that the baby was small. That seemed to make sense since his momma's small.
As it turns out, there's not a ton of variance in size for babies this early (21 weeks), as opposed to the last 2 months of a pregnancy where growth can vary significantly from baby to baby. It could be completely normal to be a little small, but it could also be a sign of chromosomal abnormalities. In addition to the baby being small, the ultrasound also revealed an enlarged stomach and a "prominent" heart. The OB at first said the heart was enlarged but then changed her wording to prominent.
According to Dr Voss, each of these issues individually can be indicators of chromosomal abnormalities such as Down's Syndrome, Trisomy 13, and Trisomy 18. Trisomy 13 and 18 are very serious abnormalities that have very high miscarriage/stillbirth rates and babies with those conditions have less than a 1% chance of living past their first birthday (which we didn't know until later that evening).
So this was all very shocking to us, and very frightening. Dr Voss was able to call a perinatologist (located just down the hall), who was able to get us in the very next day (Thursday May 13th). So we went home pretty teary eyed and in total shock. 30 minutes earlier we were ecstatic to finally know the sex of our baby, and now we were scared, devastated, and in shock.
That night we called family and did lots of research on various chromosomal abnormalities. Learning about Trisomy 13 and 18 made the situation even more frightening. Despite our fear, we tried our best to trust God's sovereignty over the situation, although I'm not so sure we did a great job of it that night!
It's a boy!
At long last, we have learned that our first baby will be a boy. Being first time parents, we had no idea that the ultrasound would take an hour, and that the gender would be the last thing they looked at. But after waiting for an hour, we finally learned that our baby is a boy. Like most first time parents, we didn't really have a preference and knew we would be excited either way.
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