Sunday, December 4, 2011
C-section scheduled!!
Last week's appointments went well, the ultrasound showed Chistopher's bowel to be the same as two weeks ago so I take that as good news. I go back to both doctors Dec 15th and 16th for the next two week checkups. I am really excited though to report that we have a date scheduled for his delivery..... January 24th, 2012. I sure hope our niece Kiera doesn't mind sharing that special day with him. :) Now the panic is starting to set in though, I mean 1 month after Christmas and he will be here. Ahhhh!!! Let the countdown begin, lol.
Wednesday, November 30, 2011
Dec 1st 2011
Can't believe it's been two weeks already, two Dr's appointments scheduled tomorrow. I'm looking forward to seeing our little guy again, my hope is he won't be as shy this time as he was during the last ultrasound. Everyone say a prayer that things are the same as the last appointment and his bowels look normal. I will post as soon as I can after the appointment and let everyone know how things went. :)
Monday, November 21, 2011
Dr Appointment last week
I had my two week check up last Tuesday and didn't really get to see Christopher very well. In the two weeks between appointments he flipped around and was head down and facing my spine. No cute facial shots, all I got to see was the back of his head. LOL The ultrasound tech and Dr felt like his bowel did not look as echogenic as it had on the prior ultrasound. I think that is a good thing, doesn't mean we are totally in the clear, but definitely a better result than his bowel being in worse shape. They want me to come back in another 2 weeks which will be Dec. 1st, hard to believe! Nothing else really to report, so keep the prayers and positive thoughts coming!!! Will check back after my next appointment and will hopefully have some new pictures to show off. :)
Friday, November 4, 2011
Follow by email
For those people who are checking out my blog (first of all thank you!) that don't happen to have a google, twitter or yahoo account, you can still follow the blog postings by email. Basically, whenever I write a new post it will notify you by email that new info has been added. Submit your email address on the right side of the webpage where it says Follow by Email. If you already have a google, twitter or yahoo account you can become a "follower" and I hope you will!
Tuesday, November 1, 2011
Dr's Appointment today
I got to see our little man today on the big screen. :) Today's appointment was a check up with the high risk doctor to compare his growth from 8 weeks ago. He put on quite a show and had the ultrasound technician chasing him at one point just to get some good shots. He really is a busy body in his cramped space that's for sure. Everything is growing and progressing as it should, he is a whole 2 lbs 8 oz currently.
When Dr. Wright came in to talk with me after reviewing the ultrasound results, she admitted she had to look back at my file to see whether or not we were aware of the CF. When I was there 8 weeks ago the amnio results were still pending so this was the first visit since finding out. She began to explain that they are going to closely monitor his bowel and looking at his bowel today would have been confirmation enough for her even without amnio results. His bowel is dilated which is a clear indication he will have intestinal "issues". Really, anyone who wants to volunteer to change diapers, please feel free! Here is how she explained a dilated bowel (I found this similar statement online).
You may have undergone a routine ultrasound which showed a segment of bowel which was dilated, or larger than normal. This is a clue to your doctor that there is a problem with the intestine. This dilation happens because while in the uterus the fetus constantly swallows amniotic fluid. This narrowing can slow down or stop the flow of amniotic fluid in the intestine causing it to swell, so that is appears too large in an ultrasound.
So, they are going to monitor how large the bowel dilates and also the amount of amniotic fluid present compared to the amount there today. I am due to go back in 2 weeks for another ultrasound. Sounds like I am going to be starting my every 2 weeks visits sooner than normal, but I am excited to see him again already. Well, I am practically falling asleep while typing this, I clearly need to head to bed! Good night!!
When Dr. Wright came in to talk with me after reviewing the ultrasound results, she admitted she had to look back at my file to see whether or not we were aware of the CF. When I was there 8 weeks ago the amnio results were still pending so this was the first visit since finding out. She began to explain that they are going to closely monitor his bowel and looking at his bowel today would have been confirmation enough for her even without amnio results. His bowel is dilated which is a clear indication he will have intestinal "issues". Really, anyone who wants to volunteer to change diapers, please feel free! Here is how she explained a dilated bowel (I found this similar statement online).
You may have undergone a routine ultrasound which showed a segment of bowel which was dilated, or larger than normal. This is a clue to your doctor that there is a problem with the intestine. This dilation happens because while in the uterus the fetus constantly swallows amniotic fluid. This narrowing can slow down or stop the flow of amniotic fluid in the intestine causing it to swell, so that is appears too large in an ultrasound.
So, they are going to monitor how large the bowel dilates and also the amount of amniotic fluid present compared to the amount there today. I am due to go back in 2 weeks for another ultrasound. Sounds like I am going to be starting my every 2 weeks visits sooner than normal, but I am excited to see him again already. Well, I am practically falling asleep while typing this, I clearly need to head to bed! Good night!!
Wednesday, October 26, 2011
"CF"
Concerned Family
and
Caring Friends
will
Continue Fighting
with
Courageous Faith
until
Cystic Fibrosis
is
Cured Forever
and
Caring Friends
will
Continue Fighting
with
Courageous Faith
until
Cystic Fibrosis
is
Cured Forever
Saturday, October 22, 2011
Here goes nothing...
I keep trying to figure out a way to start this blog. I feel like this will be a great tool for me to share info and experiences with family and friends. Let's face it, our lives are busy and I hate to admit it, but I am AWFUL at picking up the phone and chatting for a few minutes with those who matter most to me. You all know me, I definitely love to talk and inevitably phone conversations when they do happen, end up being hour long sessions just to catch up. This way I can still tell you all what is going on without burning up the phone minutes. LOL
So, here is what we know so far about Cystic Fibrosis and our little guy.
The gene mutation I carry is the Delta F508 and Chris carries the N1303K mutation. Both of these mutations are listed as being in the top 40 most common mutations seen. There are over 1500 different mutations though, so the combinations are endless and make it hard to really say exactly what problems CF patients will experience.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
Gotta love copy and paste. :) Early diagnosis and care is definitely going to be a benefit for us. Nothing will change as far as the rest of the pregnancy other than maybe more ultrasounds closer to when he is due to arrive. Let's just hope my blood pressure stays in check too. They can watch for a "brightenend bowel" on ultrasound which could mean Christopher would be born with Meconium Ileus which is basically a bowel obstruction where he can't pass his poop. This is something they find with about 20% of children born with CF, in fact that is sometimes how kids were first diagnosed after they have the surgery to correct the problem. We will really be hoping for that nasty poop to come out after he is born, that will be a huge relief.
I met yesterday with the Pulmonary Pediatric Dr. that will treat Christopher once he is here and I like her alot. Dr. Dellon and I talked for probably close to an hour and a half and she gave me lots of info. They gave me some reading material as well and a DVD in case I can't read I guess. JK!! Here is what she was able to tell me will happen for sure. He will have to take his first trip to Chapel Hill within his first week here and then they will see him once a month for his first 6 months and if all is going well he will then go to every 3 months. She did explain that immediately he will be put on enzymes to help him absorb the nutrients that would otherwise just pass right through him. (Can't wait to change his diapers, lol) He will also have to take liquid vitamins right from the beginning so he develops and grows properly. Chris and I will have to learn how to do the respiratory therapies to help him clear the mucus that will stick in his lungs until he is old enough to cough it up himself. Dr. Dellon also explained that most if not all males born with CF are not able to reproduce when they are adults. But who knows what will be going on when that time comes. It could be by the time he is an adult there might even be a cure.
Really though, we won't know much until he gets here and can be evaluated. I feel like January should be a long time from now, but in reality he will be here before we know it! My next Dr's appointment is with the high-risk Dr. on November 1st for the next ultrasound. So far my blood pressure has been good, they have asked that I keep track of it between appointments and no issues have come up yet.
I hope everyone will understand my reasoning behind this blog. I know how busy everyone's lives are and we just don't always connect at the right times. Our families are stretched out now all over the place and where would we be without the internet? :)
So, here is what we know so far about Cystic Fibrosis and our little guy.
The gene mutation I carry is the Delta F508 and Chris carries the N1303K mutation. Both of these mutations are listed as being in the top 40 most common mutations seen. There are over 1500 different mutations though, so the combinations are endless and make it hard to really say exactly what problems CF patients will experience.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Gotta love copy and paste. :) Early diagnosis and care is definitely going to be a benefit for us. Nothing will change as far as the rest of the pregnancy other than maybe more ultrasounds closer to when he is due to arrive. Let's just hope my blood pressure stays in check too. They can watch for a "brightenend bowel" on ultrasound which could mean Christopher would be born with Meconium Ileus which is basically a bowel obstruction where he can't pass his poop. This is something they find with about 20% of children born with CF, in fact that is sometimes how kids were first diagnosed after they have the surgery to correct the problem. We will really be hoping for that nasty poop to come out after he is born, that will be a huge relief.
I met yesterday with the Pulmonary Pediatric Dr. that will treat Christopher once he is here and I like her alot. Dr. Dellon and I talked for probably close to an hour and a half and she gave me lots of info. They gave me some reading material as well and a DVD in case I can't read I guess. JK!! Here is what she was able to tell me will happen for sure. He will have to take his first trip to Chapel Hill within his first week here and then they will see him once a month for his first 6 months and if all is going well he will then go to every 3 months. She did explain that immediately he will be put on enzymes to help him absorb the nutrients that would otherwise just pass right through him. (Can't wait to change his diapers, lol) He will also have to take liquid vitamins right from the beginning so he develops and grows properly. Chris and I will have to learn how to do the respiratory therapies to help him clear the mucus that will stick in his lungs until he is old enough to cough it up himself. Dr. Dellon also explained that most if not all males born with CF are not able to reproduce when they are adults. But who knows what will be going on when that time comes. It could be by the time he is an adult there might even be a cure.
Really though, we won't know much until he gets here and can be evaluated. I feel like January should be a long time from now, but in reality he will be here before we know it! My next Dr's appointment is with the high-risk Dr. on November 1st for the next ultrasound. So far my blood pressure has been good, they have asked that I keep track of it between appointments and no issues have come up yet.
I hope everyone will understand my reasoning behind this blog. I know how busy everyone's lives are and we just don't always connect at the right times. Our families are stretched out now all over the place and where would we be without the internet? :)
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