January 9, 2012, at our 20 week ultrasound, we learned not only were we having a girl, but that she had an omphalocele. That ultrasound was a pivoting point. Everything about how we were viewing our pregnancy changed. We would no longer be able to give birth naturally, we'd be delivering by c-section in Denver.
The next months were filled with endless research. Ryan and I both process bad news this way... Sure emotions set in and we were devistated to learn of our unborn daughter's birth defect, but we needed to learn everything there was to know about the condition she was to be born with and what to expect after delivering her. What a roller coaster the next 4 months were!
At about 10 weeks gestationally, the baby's organs are forming outside of the body. At about 12 weeks, the body begins to grow around the organs, sealing them in place in the abdominal cavity. When the abdominal wall doesn't close propery, organs are trapped outside the body, creating an omphalocele. Basically, the organs that didn't make it into the body have been trapped in the umbilical cord opening... So in photos the umbilical cord looks normal, then as it gets closer to the body it flares out into a large round sac containing the organs that couldn't fit within the abdominal cavity. In Kaylee's case, that sac just contained intestine, but omphaloceles can include any internal organs, the most common being intestine, gall badder, kidneys, liver and stomach. There are two kinds of omphaloceles, a giant omphalocele and a small omphalocele. A giant happens in 1 in every 10,000 births and contains most of the liver (in addition to bowel) and possibly other organs. A small happens in 1 in every 5,000 births and contains just bowel. They were calling Kaylee's moderate. It contained just bowel,but was larger than the typical small omphalocele. She had a lot of extra fluid in her sac.
Omphaloceles have no known cause. Sometimes (25-40% of the time), as in Kaylee's case, they are a part of a larger defect. Once they found the omphalocele (which looked like a round ball on the baby's stomach in the ultrasound) we began seeing a high risk doctor who came from Denver once a month. He monitored the growth of the omphalocele and performed an amniocentesis (where a sample of the amniotic fluid the baby is in is sent for testing). They confirmed that there was nothing else seriously wrong with the baby. They mentioned continuously that she may have Beckwith-Wiedemann Syndrome, but never tested for it.
The risk of the omphalocele ripping in birth is high, so it is important, if it's known about to deliver at a hospital prepared to take care of the baby. When I went into labor early, Mercy Regional Medical Center in Durango confirmed I was in fact in labor and started giving me drugs to slow things down so they wouldn't have to perform the c-section. The ladies on the flight crew that picked us up and flew us to Denver told us that Mercy kept calling to see how far out they were. Mercy was getting nervous! :)
When Kaylee was born in Denver, the very first thing they did was stabilize her and wrap her body in plastic. As you could imagine, a large hole in the body core loses a lot of heat. They had to insulate her because there is a large risk of hypothermia. We got to kiss her on the forehead before she was whisked away to her climate controlled isolette. The next morning we got to hold her little hand before she went into surgery at 14 hours old. Kaylee's surgery was relatively easy. They just increased the opening at her belly button and tucked everything back into place, leaving a scar they had shaped to resemble a belly button. It was, in a sense, the opposite of the abdominal surgery I had just gone through to have her. :) They were taking stuff out of me, bu t putting stuff back in her. :)
Omphaloceles are repaired through surgery. Kaylee's surgery was minor. Many omphaloceles are repaired over the course of months or years, and multiple surgeries. They typically cover the sac in a man made material, slowly pushing the organs back into the body, letting the body grow around them (much of the time the body is small because it was formed without everything in place, so there is physically no room to put everything in place like they did Kaylee's). Complete recovery is expected after closure surgery. Occassionally these kiddos deal with some bowel problems from scar tissue, but most of the time all they are left with as a reminder of all this is a scar, or in Kaylee's case, a hand crafted belly button.
The surgery was the easy part of her welcome into the world. Because her organs were manipulated by doctors to make everything fit, they worry about something being twisted and not working properly. So after a day or so of making sure she was stable, they began introducing breast milk to her, literally by drops at a time. Once she proved her body could process those drops, they'd add a couple more. It was a long process that I won't bore you with here... If you are interested, it's all accounted for in detail in older posts on this blog. Fast forward one month and Kaylee was eating like a champ and we were making the drive to Durango!
We were blessed to have delivered Kaylee at Presbyterian St. Luke's in Denver. We will forever sing their praise. They are an amazing hospital! The staff was the best we've seen anywhere. Considering the circumstances, we had the best possible experience with them.
It's been a rough road for this little girl, but man, she is a fighter!! She's been through more in her 9 months than most of us have ever been through. We are honored she chose us to help her along her journey... She has been such a joy in our lives!
Below are a few pictures we haven't published before, showing the ompalocele. Fair warning: they are graphic. Again, her's is relatively minor... do a simple search online and you can see just how minor Kaylee's was.
Also, the Mother of Omphaloceles support group we are apart of puts together a slideshow every year. Here is the link to that if you are interested:
http://www.youtube.com/watch?v=nNU7C_3gRjc&feature=share
And our last photo is our precious omphalocele baby sporting the colors of awareness for our day today: cow print.
The next months were filled with endless research. Ryan and I both process bad news this way... Sure emotions set in and we were devistated to learn of our unborn daughter's birth defect, but we needed to learn everything there was to know about the condition she was to be born with and what to expect after delivering her. What a roller coaster the next 4 months were!
At about 10 weeks gestationally, the baby's organs are forming outside of the body. At about 12 weeks, the body begins to grow around the organs, sealing them in place in the abdominal cavity. When the abdominal wall doesn't close propery, organs are trapped outside the body, creating an omphalocele. Basically, the organs that didn't make it into the body have been trapped in the umbilical cord opening... So in photos the umbilical cord looks normal, then as it gets closer to the body it flares out into a large round sac containing the organs that couldn't fit within the abdominal cavity. In Kaylee's case, that sac just contained intestine, but omphaloceles can include any internal organs, the most common being intestine, gall badder, kidneys, liver and stomach. There are two kinds of omphaloceles, a giant omphalocele and a small omphalocele. A giant happens in 1 in every 10,000 births and contains most of the liver (in addition to bowel) and possibly other organs. A small happens in 1 in every 5,000 births and contains just bowel. They were calling Kaylee's moderate. It contained just bowel,but was larger than the typical small omphalocele. She had a lot of extra fluid in her sac.
Omphaloceles have no known cause. Sometimes (25-40% of the time), as in Kaylee's case, they are a part of a larger defect. Once they found the omphalocele (which looked like a round ball on the baby's stomach in the ultrasound) we began seeing a high risk doctor who came from Denver once a month. He monitored the growth of the omphalocele and performed an amniocentesis (where a sample of the amniotic fluid the baby is in is sent for testing). They confirmed that there was nothing else seriously wrong with the baby. They mentioned continuously that she may have Beckwith-Wiedemann Syndrome, but never tested for it.
The risk of the omphalocele ripping in birth is high, so it is important, if it's known about to deliver at a hospital prepared to take care of the baby. When I went into labor early, Mercy Regional Medical Center in Durango confirmed I was in fact in labor and started giving me drugs to slow things down so they wouldn't have to perform the c-section. The ladies on the flight crew that picked us up and flew us to Denver told us that Mercy kept calling to see how far out they were. Mercy was getting nervous! :)
When Kaylee was born in Denver, the very first thing they did was stabilize her and wrap her body in plastic. As you could imagine, a large hole in the body core loses a lot of heat. They had to insulate her because there is a large risk of hypothermia. We got to kiss her on the forehead before she was whisked away to her climate controlled isolette. The next morning we got to hold her little hand before she went into surgery at 14 hours old. Kaylee's surgery was relatively easy. They just increased the opening at her belly button and tucked everything back into place, leaving a scar they had shaped to resemble a belly button. It was, in a sense, the opposite of the abdominal surgery I had just gone through to have her. :) They were taking stuff out of me, bu t putting stuff back in her. :)
Omphaloceles are repaired through surgery. Kaylee's surgery was minor. Many omphaloceles are repaired over the course of months or years, and multiple surgeries. They typically cover the sac in a man made material, slowly pushing the organs back into the body, letting the body grow around them (much of the time the body is small because it was formed without everything in place, so there is physically no room to put everything in place like they did Kaylee's). Complete recovery is expected after closure surgery. Occassionally these kiddos deal with some bowel problems from scar tissue, but most of the time all they are left with as a reminder of all this is a scar, or in Kaylee's case, a hand crafted belly button.
The surgery was the easy part of her welcome into the world. Because her organs were manipulated by doctors to make everything fit, they worry about something being twisted and not working properly. So after a day or so of making sure she was stable, they began introducing breast milk to her, literally by drops at a time. Once she proved her body could process those drops, they'd add a couple more. It was a long process that I won't bore you with here... If you are interested, it's all accounted for in detail in older posts on this blog. Fast forward one month and Kaylee was eating like a champ and we were making the drive to Durango!
We were blessed to have delivered Kaylee at Presbyterian St. Luke's in Denver. We will forever sing their praise. They are an amazing hospital! The staff was the best we've seen anywhere. Considering the circumstances, we had the best possible experience with them.
It's been a rough road for this little girl, but man, she is a fighter!! She's been through more in her 9 months than most of us have ever been through. We are honored she chose us to help her along her journey... She has been such a joy in our lives!
Below are a few pictures we haven't published before, showing the ompalocele. Fair warning: they are graphic. Again, her's is relatively minor... do a simple search online and you can see just how minor Kaylee's was.
Also, the Mother of Omphaloceles support group we are apart of puts together a slideshow every year. Here is the link to that if you are interested:
http://www.youtube.com/watch?v=nNU7C_3gRjc&feature=share
And our last photo is our precious omphalocele baby sporting the colors of awareness for our day today: cow print.