June 19th- I had my typical appointment of getting an ultrasound, although this took quite awhile today. Eric went along for today's appointment. After the tech did the typical ultrasound, she came back in and said the doctor wanted her to get some additional shots of the heart and get a few recordings of different heart sounds. So she came in and did that. Then the doctor came in and wanted to do another ultrasound to look at a few things himself. So I had ultrasound number 3 for the day.
He told us that he is pretty confident from today's ultrasound and looking back at previous ones that the baby actually has an omphalocele instead of gastroschisis. He said it has held more of a consistent shape and that usually the gastroschisis looks more like spaghetti floating around versus the rounded shape. He did say it is off to the right of the umbilical cord which is typical for gastroschisis, but is still thinking it is an omphalocele. He confirmed that the only thing in the omphalocele is bowel and no organs appear to be in the omphalocele. He said that the size of the omphalocele is not likely to change other than size relative to the baby. In a nutshell, this means that the bowel that is in a protective membrane so it is not subject to the amniotic fluid the way that the intestines are with gastroschisis. This is a positive, however, omphaloceles are very often connected with other genetic issues, specifically heart or spinal issues, whereas gastroschisis is a chance thing that is not genetically related. We are hopeful that we aren't looking into any major genetic issues. Nothing in the ultrasounds we have had show any real need for concern. They have done lots of looking at the heart and haven't seen anything that concerns them.
The doctor made it sound like the plan for the birth and after would be similar- C-section followed by surgery. He gave a little more detail into the actual C-section in terms of how long it will take and when we will schedule. He said roughly start to finish will be about 1 hour and that we will schedule it for between weeks 37 and 38. We are still going every two weeks for appointments and ultrasounds at this point. This doctor did make us feel a little more nervous about pre-term labor and said we have a higher probability than a typical pregnancy and stated multiple times that I should not do too much, but at the same time, I asked if there was anything I shouldn't be doing and he told me to just keep doing what I'm doing.
It sounds like 32 weeks will be a big week for us, we will meet with neonatalogy again that week, we will meet the pediatric surgeon or surgeons that will be working on our baby, and we will schedule the date for the C-section. We will also be able to set up a tour of the NICU so we have an idea of what to expect when we get there. Our next appointment is Monday, July 2nd and I will be 28 weeks.
Saturday, June 30, 2012
Our First 'Regular' Appointment
On June 4th, I went in for my first regular appointment with maternal fetal medicine (MFM) after finding out about the baby's gastroschisis. The ultrasound was pretty short, but they were able to get the images they wanted. After the ultrasound, I met shortly with one of the nurse practitioners in MFM. She didn't really have much to say, but told me that I was going to be meeting with the head of neonatalogy from Carle (our local hospital) that day. I was somewhat confused because at this point, we were planning on delivering and doing everything in Peoria.
The neonatalogist was very nice. I tried to remember all of our questions (I didn't realize I was meeting with him and so I didn't bring my questions for him or have Eric along). He brought some relief to us. The pediatric surgeons from the children's hospital in Peoria are working with Carle Hospital (where both Oliver & Parker were born) and so the baby will be able to have the surgery done at Carle and then stay in the NICU here (it is a level III NICU). He went through some of the logistics of what will happen. He said I will have a C-Section sometime after 37 weeks and that the baby would go immediately to surgery. Basically, they will get the baby out, then show us the baby, take the baby to NICU if any stabilization if needed, and then on to surgery. He said the baby will be intubated and will likely be for a few days after surgery while the lungs get used to a smaller amount of space in the abdomen.
He confirmed that the typical NICU stay is 1 month to 1 1/2 months. He also said that I should eventually be able to breastfeed the baby, but obviously not right away so they will provide me with a pump while I'm in the hospital and will store milk in the NICU for when the baby is able to eat. He said that the typical reason babies have to stay longer is that their intestines are not able to handle eating formula or breastmilk and they have to be able to eat on their own before going home.
I think I hit all the key points from this appointment. I am working on getting this caught up before my next appointment on July 2nd so that I can just do a quick update after each appointment and stay on top of things :)
The neonatalogist was very nice. I tried to remember all of our questions (I didn't realize I was meeting with him and so I didn't bring my questions for him or have Eric along). He brought some relief to us. The pediatric surgeons from the children's hospital in Peoria are working with Carle Hospital (where both Oliver & Parker were born) and so the baby will be able to have the surgery done at Carle and then stay in the NICU here (it is a level III NICU). He went through some of the logistics of what will happen. He said I will have a C-Section sometime after 37 weeks and that the baby would go immediately to surgery. Basically, they will get the baby out, then show us the baby, take the baby to NICU if any stabilization if needed, and then on to surgery. He said the baby will be intubated and will likely be for a few days after surgery while the lungs get used to a smaller amount of space in the abdomen.
He confirmed that the typical NICU stay is 1 month to 1 1/2 months. He also said that I should eventually be able to breastfeed the baby, but obviously not right away so they will provide me with a pump while I'm in the hospital and will store milk in the NICU for when the baby is able to eat. He said that the typical reason babies have to stay longer is that their intestines are not able to handle eating formula or breastmilk and they have to be able to eat on their own before going home.
I think I hit all the key points from this appointment. I am working on getting this caught up before my next appointment on July 2nd so that I can just do a quick update after each appointment and stay on top of things :)
Tuesday, June 19, 2012
Finding out
On February 3rd we had a positive pregnancy test followed by our first prenatal consult on March 7th and prenatal appointment on March 8th. Everything moved along normally, Sara saw the midwives and she was able to skip the gestational diabetes test (yay!), because of morning sickness (not yay). We had a dating ultrasound on March 29th and we were told our due date was September 22nd. After another appointment, morning sickness began to subside and we went to the typical 20-week sonogram. After the sonogram one of the midwives came in, after a longer than typical wait, and said that the sonogram technician believed they saw an omphalocele. She gave us some information about omphaleceles and we were told that maternal-fetal medicine would call us the next week with an appointment for a follow up Level-2 sonogram. Essentially, this is a head-to-toe sonogram that is much more detailed and comprehensive than the typical 20-week sonogram where they would look at the (possible) omphalocele and look at everything else more closely.
After the appointment we went home and talked about what we heard at the appointment and went to our computers to look up information on omphalocele. During our reading we also read about a related condition called gastroschisis, but largely ignored this condition.
After internal-fedal medicine called we had an appointment date: May 21. At the appointment the doctor changed the diagnosis from omphalocele to gastroschisis. She said that this was a good change, which we somewhat disagreed with. Essentially, in the case of an omphalocele the organs are outside the abdomen, but still protected by a membrane; where as gastroschisis the organs float freely in the amniotic fluid. However, omphaloceles can also be associated with other genetic abnormalities such as heart defects, which is not the case for gastroschisis. The doctor looked at the heart closely and found no issues, which was great news.
After the confirmation of a gastroschisis we were told that we would need to switch from the midwives to maternal-fetal medicine as they handle these cases better compared to the midwives. We would also have bi-weekly sonograms to check the status of the baby. Furthermore, we learned that our hospital could not effectively handle delivering babies with a gastroschisis and that we would need to deliver in Peoria (a town 1.5 hours away) in their children's hospital. Basically, a baby with a gastroschisis requires a pediatric surgeon to reinsert the organs into the abdomen. After that, the baby will need to stay in the NICU for recovery from a few weeks to a few months.
After the appointment we went home and talked about what we heard at the appointment and went to our computers to look up information on omphalocele. During our reading we also read about a related condition called gastroschisis, but largely ignored this condition.
After internal-fedal medicine called we had an appointment date: May 21. At the appointment the doctor changed the diagnosis from omphalocele to gastroschisis. She said that this was a good change, which we somewhat disagreed with. Essentially, in the case of an omphalocele the organs are outside the abdomen, but still protected by a membrane; where as gastroschisis the organs float freely in the amniotic fluid. However, omphaloceles can also be associated with other genetic abnormalities such as heart defects, which is not the case for gastroschisis. The doctor looked at the heart closely and found no issues, which was great news.
After the confirmation of a gastroschisis we were told that we would need to switch from the midwives to maternal-fetal medicine as they handle these cases better compared to the midwives. We would also have bi-weekly sonograms to check the status of the baby. Furthermore, we learned that our hospital could not effectively handle delivering babies with a gastroschisis and that we would need to deliver in Peoria (a town 1.5 hours away) in their children's hospital. Basically, a baby with a gastroschisis requires a pediatric surgeon to reinsert the organs into the abdomen. After that, the baby will need to stay in the NICU for recovery from a few weeks to a few months.
From the beginning
This blog will discuss the progress of us, our kids, and our third baby as we maneuver doctor appointments, sonograms, the NICU, and then home. Our baby has a small omphalocele or gastroschisis (click on the words for more detailed descriptions), the doctors have not determined the exact diagnosis yet, which is a small hole in the baby's abdominal wall that allows the bowel and other organs to grow outside of the baby's abdomen.
The first few posts will primarily catch the blog up to the present.
The first few posts will primarily catch the blog up to the present.
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