Prenatal diagnosis for CF

[NanaOf8GirlsAndCounting]

My daughter also found out around 23weeks through ultrasound that Graycie would be born with CF. The ultrasound tech found a bright spot on the baby's bowel and sent us for further testing. They did an amino test that confirmed that Grayice did in fact have CF DDF508 and had meconium ileus. Soon after her birth she had to have surgery to fix this and now has a short gut. She is doing fine now but it was a rough start for her little life. She stayed in the hospital for 6 months after her birth due to complications from surgery and failure to thrive. After getting a G-tube she gained weight and was able to finally come home. She is now almost 20 mo's and doing well. She did have to go back into the hospital for a 2 week stay since then but its been around a yr now with no hospitalizations. This place has helped my whole family learn and deal with CF. Things in the beginning seemed alittle overwhelming but now its all normal and routine for us. If you don't mind me asking how did they come to the diagnosis of CF for your baby?

 

[NanaOf8GirlsAndCounting]

My daughter also found out around 23weeks through ultrasound that Graycie would be born with CF. The ultrasound tech found a bright spot on the baby's bowel and sent us for further testing. They did an amino test that confirmed that Grayice did in fact have CF DDF508 and had meconium ileus. Soon after her birth she had to have surgery to fix this and now has a short gut. She is doing fine now but it was a rough start for her little life. She stayed in the hospital for 6 months after her birth due to complications from surgery and failure to thrive. After getting a G-tube she gained weight and was able to finally come home. She is now almost 20 mo's and doing well. She did have to go back into the hospital for a 2 week stay since then but its been around a yr now with no hospitalizations. This place has helped my whole family learn and deal with CF. Things in the beginning seemed alittle overwhelming but now its all normal and routine for us. If you don't mind me asking how did they come to the diagnosis of CF for your baby?

 

[NanaOf8GirlsAndCounting]

My daughter also found out around 23weeks through ultrasound that Graycie would be born with CF. The ultrasound tech found a bright spot on the baby's bowel and sent us for further testing. They did an amino test that confirmed that Grayice did in fact have CF DDF508 and had meconium ileus. Soon after her birth she had to have surgery to fix this and now has a short gut. She is doing fine now but it was a rough start for her little life. She stayed in the hospital for 6 months after her birth due to complications from surgery and failure to thrive. After getting a G-tube she gained weight and was able to finally come home. She is now almost 20 mo's and doing well. She did have to go back into the hospital for a 2 week stay since then but its been around a yr now with no hospitalizations. This place has helped my whole family learn and deal with CF. Things in the beginning seemed alittle overwhelming but now its all normal and routine for us. If you don't mind me asking how did they come to the diagnosis of CF for your baby?

 

[NanaOf8GirlsAndCounting]

My daughter also found out around 23weeks through ultrasound that Graycie would be born with CF. The ultrasound tech found a bright spot on the baby's bowel and sent us for further testing. They did an amino test that confirmed that Grayice did in fact have CF DDF508 and had meconium ileus. Soon after her birth she had to have surgery to fix this and now has a short gut. She is doing fine now but it was a rough start for her little life. She stayed in the hospital for 6 months after her birth due to complications from surgery and failure to thrive. After getting a G-tube she gained weight and was able to finally come home. She is now almost 20 mo's and doing well. She did have to go back into the hospital for a 2 week stay since then but its been around a yr now with no hospitalizations. This place has helped my whole family learn and deal with CF. Things in the beginning seemed alittle overwhelming but now its all normal and routine for us. If you don't mind me asking how did they come to the diagnosis of CF for your baby?

 

[NanaOf8GirlsAndCounting]

My daughter also found out around 23weeks through ultrasound that Graycie would be born with CF. The ultrasound tech found a bright spot on the baby's bowel and sent us for further testing. They did an amino test that confirmed that Grayice did in fact have CF DDF508 and had meconium ileus. Soon after her birth she had to have surgery to fix this and now has a short gut. She is doing fine now but it was a rough start for her little life. She stayed in the hospital for 6 months after her birth due to complications from surgery and failure to thrive. After getting a G-tube she gained weight and was able to finally come home. She is now almost 20 mo's and doing well. She did have to go back into the hospital for a 2 week stay since then but its been around a yr now with no hospitalizations. This place has helped my whole family learn and deal with CF. Things in the beginning seemed alittle overwhelming but now its all normal and routine for us. If you don't mind me asking how did they come to the diagnosis of CF for your baby?

 

[NanaOf8GirlsAndCounting]

Oops sorry about the large pix. Gonna fix that!!

 

[NanaOf8GirlsAndCounting]

Oops sorry about the large pix. Gonna fix that!!

 

[NanaOf8GirlsAndCounting]

Oops sorry about the large pix. Gonna fix that!!

 

[NanaOf8GirlsAndCounting]

Oops sorry about the large pix. Gonna fix that!!

 

[NanaOf8GirlsAndCounting]

Oops sorry about the large pix. Gonna fix that!!

 

[Rebjane]

Welcome. First off you've already got some great information. My daughter was prenatally diagnosed over 7 years ago.. SHe just turned 7 and is in first grade at our public school. The genetic mutations are only part of how to define how severe your baby's CF will be. My daughter has 2 mutations that are classified as class 1 and class 2(I think) Anyway, her mutations give her severe CF.She had a rocky beginning but we are in a good heathcare regime and her care is manageable. My daughter goes to school, dance class, skiing, skating, just started pee-wee chearleading....the list goes on. We manage her nebulizer treatments, VEST therapy(the chest PT), meds etc around school and her activites. It definately took a few years to get used to what must be done but now this is "our normal". I also have a son without CF. I did not work for 4 years after my daughter was born. But now I work(perdiem) and of course my husband works. We have traveled long car rides, gone to Disney world, my daughter swims. In fact, keeping your child healthy with activites and exersize is really important. Surrounding yourself with experienced CF doctors and an experienced CF team, as well as providing good nutrition, exersize, doing airway clearance to keep your baby's lung healthy from day one will give your baby a good start. I am a firm believer that"Knowledge is Power" Educate yourself on CF, though the reliable information is on the Cystic FIbrosis Foundation's website at www.cff.org. Know that not all doctors have up to date info on CF and in fact there will come a day when you will know much more about CF than a general doctor. Remember that baby is still a baby with regular baby needs. Please ask any questions and enjoy your new baby. While having a child with CF is time-consuming and stressful; know that from my daughter I have such a special and joyful child who has taught me so much about what life is really about and how to truly enjoy life.

 

[Rebjane]

Welcome. First off you've already got some great information. My daughter was prenatally diagnosed over 7 years ago.. SHe just turned 7 and is in first grade at our public school. The genetic mutations are only part of how to define how severe your baby's CF will be. My daughter has 2 mutations that are classified as class 1 and class 2(I think) Anyway, her mutations give her severe CF.She had a rocky beginning but we are in a good heathcare regime and her care is manageable. My daughter goes to school, dance class, skiing, skating, just started pee-wee chearleading....the list goes on. We manage her nebulizer treatments, VEST therapy(the chest PT), meds etc around school and her activites. It definately took a few years to get used to what must be done but now this is "our normal". I also have a son without CF. I did not work for 4 years after my daughter was born. But now I work(perdiem) and of course my husband works. We have traveled long car rides, gone to Disney world, my daughter swims. In fact, keeping your child healthy with activites and exersize is really important. Surrounding yourself with experienced CF doctors and an experienced CF team, as well as providing good nutrition, exersize, doing airway clearance to keep your baby's lung healthy from day one will give your baby a good start. I am a firm believer that"Knowledge is Power" Educate yourself on CF, though the reliable information is on the Cystic FIbrosis Foundation's website at www.cff.org. Know that not all doctors have up to date info on CF and in fact there will come a day when you will know much more about CF than a general doctor. Remember that baby is still a baby with regular baby needs. Please ask any questions and enjoy your new baby. While having a child with CF is time-consuming and stressful; know that from my daughter I have such a special and joyful child who has taught me so much about what life is really about and how to truly enjoy life.

 

[Rebjane]

Welcome. First off you've already got some great information. My daughter was prenatally diagnosed over 7 years ago.. SHe just turned 7 and is in first grade at our public school. The genetic mutations are only part of how to define how severe your baby's CF will be. My daughter has 2 mutations that are classified as class 1 and class 2(I think) Anyway, her mutations give her severe CF.She had a rocky beginning but we are in a good heathcare regime and her care is manageable. My daughter goes to school, dance class, skiing, skating, just started pee-wee chearleading....the list goes on. We manage her nebulizer treatments, VEST therapy(the chest PT), meds etc around school and her activites. It definately took a few years to get used to what must be done but now this is "our normal". I also have a son without CF. I did not work for 4 years after my daughter was born. But now I work(perdiem) and of course my husband works. We have traveled long car rides, gone to Disney world, my daughter swims. In fact, keeping your child healthy with activites and exersize is really important. Surrounding yourself with experienced CF doctors and an experienced CF team, as well as providing good nutrition, exersize, doing airway clearance to keep your baby's lung healthy from day one will give your baby a good start. I am a firm believer that"Knowledge is Power" Educate yourself on CF, though the reliable information is on the Cystic FIbrosis Foundation's website at www.cff.org. Know that not all doctors have up to date info on CF and in fact there will come a day when you will know much more about CF than a general doctor. Remember that baby is still a baby with regular baby needs. Please ask any questions and enjoy your new baby. While having a child with CF is time-consuming and stressful; know that from my daughter I have such a special and joyful child who has taught me so much about what life is really about and how to truly enjoy life.

 

[Rebjane]

Welcome. First off you've already got some great information. My daughter was prenatally diagnosed over 7 years ago.. SHe just turned 7 and is in first grade at our public school. The genetic mutations are only part of how to define how severe your baby's CF will be. My daughter has 2 mutations that are classified as class 1 and class 2(I think) Anyway, her mutations give her severe CF.She had a rocky beginning but we are in a good heathcare regime and her care is manageable. My daughter goes to school, dance class, skiing, skating, just started pee-wee chearleading....the list goes on. We manage her nebulizer treatments, VEST therapy(the chest PT), meds etc around school and her activites. It definately took a few years to get used to what must be done but now this is "our normal". I also have a son without CF. I did not work for 4 years after my daughter was born. But now I work(perdiem) and of course my husband works. We have traveled long car rides, gone to Disney world, my daughter swims. In fact, keeping your child healthy with activites and exersize is really important. Surrounding yourself with experienced CF doctors and an experienced CF team, as well as providing good nutrition, exersize, doing airway clearance to keep your baby's lung healthy from day one will give your baby a good start. I am a firm believer that"Knowledge is Power" Educate yourself on CF, though the reliable information is on the Cystic FIbrosis Foundation's website at www.cff.org. Know that not all doctors have up to date info on CF and in fact there will come a day when you will know much more about CF than a general doctor. Remember that baby is still a baby with regular baby needs. Please ask any questions and enjoy your new baby. While having a child with CF is time-consuming and stressful; know that from my daughter I have such a special and joyful child who has taught me so much about what life is really about and how to truly enjoy life.

 

[Rebjane]

Welcome. First off you've already got some great information. My daughter was prenatally diagnosed over 7 years ago.. SHe just turned 7 and is in first grade at our public school. The genetic mutations are only part of how to define how severe your baby's CF will be. My daughter has 2 mutations that are classified as class 1 and class 2(I think) Anyway, her mutations give her severe CF.She had a rocky beginning but we are in a good heathcare regime and her care is manageable. My daughter goes to school, dance class, skiing, skating, just started pee-wee chearleading....the list goes on. We manage her nebulizer treatments, VEST therapy(the chest PT), meds etc around school and her activites. It definately took a few years to get used to what must be done but now this is "our normal". I also have a son without CF. I did not work for 4 years after my daughter was born. But now I work(perdiem) and of course my husband works. We have traveled long car rides, gone to Disney world, my daughter swims. In fact, keeping your child healthy with activites and exersize is really important. Surrounding yourself with experienced CF doctors and an experienced CF team, as well as providing good nutrition, exersize, doing airway clearance to keep your baby's lung healthy from day one will give your baby a good start. I am a firm believer that"Knowledge is Power" Educate yourself on CF, though the reliable information is on the Cystic FIbrosis Foundation's website at www.cff.org. Know that not all doctors have up to date info on CF and in fact there will come a day when you will know much more about CF than a general doctor. Remember that baby is still a baby with regular baby needs. Please ask any questions and enjoy your new baby. While having a child with CF is time-consuming and stressful; know that from my daughter I have such a special and joyful child who has taught me so much about what life is really about and how to truly enjoy life.

 

[KAC1210]

My son Trevor was diagnosed when he was about a month old. We knew we were both carriers, but never in a million years did we ever think he would get it. I guess it was one of those "it will never happen to me things". We had level 2 ultrasound to check for the spot in the bowel, but they always said everything was fine. I had a C-section at a regular hospital. It didn't even have a NICU. Everything was fine. He was a little junky sounding, but c-section babies tend to be that way anyway so I didn't anything of it. We were home about a week when we got the call that his IRT was elevated on his newborn screen and we would have to have it repeated ASAP. It repeated the same. We had a sweat test schedule for the next month. His sweat test was positive. We were contacted by his clinic, which is about an hour and a half away, and had an appointment the following month.

At the first appointment they repeated the sweat test, did a chest x-ray, and did genetic testing. We met with his pulmonologist, respiratory therapist, nutritionist, social worker, and nurse practitioner. They gave us alot of information. The first thing his pulmonologist said to us when he walked in the room was "I want you to plan for Trevor's college, and he will need a car when he turns 16 and someday he will get married." That was the best thing he could have said. It was soo scary not knowing enough about a disease that your child has. He reassured us that Trevor can have a normal life and do things just like the other kids. ahh big sigh of relief. They start him on creon (enzymes) at that appointment. The next appointment the following month we started doing all the nebs and CPT.

Trevor's daily well rountine consists of nubulized Pulmicort and Albuterol twice a day and Pulmozyme once a day. That is followed by CPT twice a day. He gets enzymes before every bottle. He gets a multi-vitamin once a day. and salt in one bottle a day. I hadn't really established a good routine before all of this was added, so it's just what I do everyday with him. It doesn't really seem like extra. When Trevor is sick or more congested than normal, his nebs get increased to 4 times a day.

Trevor just looks like any other little boy, you wouldn't know that he has CF. Our biggest obstacle has been smokers. All of his grandparents are smokers, so that is always an issue cause you want to make the air he breaths the cleanest regardless. I don't usually take him out in this weather unless I have to, just to avoid as many germs as possible. You will be going to the doctor quite a bit. Trevor goes to clinic once a month. Plus, has all the regular baby well-check up with his pediatrician. He also get the synagis shots once a month for RSV, which is another pediatrician appointment. Along with doctor's visit and perscriptions comes co-pays and alot of them. So also be prepared for that.

It's the what if's that scare you. Try not to dwell on them so much. Everything will be ok. Your gonna have days where that is all you can think about and thats fine, just remember to not let it get bottled up. It's important to have soemone to talk to, even tho sometimes it will feel like no one understands. I find that talking on here is great!
Best of luck to you and your family! I hope I was helpful. It is not the end of the world, even tho it may feel like it from time to time. You are going to have a beautiful baby soon. Best wishes!

 

[KAC1210]

My son Trevor was diagnosed when he was about a month old. We knew we were both carriers, but never in a million years did we ever think he would get it. I guess it was one of those "it will never happen to me things". We had level 2 ultrasound to check for the spot in the bowel, but they always said everything was fine. I had a C-section at a regular hospital. It didn't even have a NICU. Everything was fine. He was a little junky sounding, but c-section babies tend to be that way anyway so I didn't anything of it. We were home about a week when we got the call that his IRT was elevated on his newborn screen and we would have to have it repeated ASAP. It repeated the same. We had a sweat test schedule for the next month. His sweat test was positive. We were contacted by his clinic, which is about an hour and a half away, and had an appointment the following month.

At the first appointment they repeated the sweat test, did a chest x-ray, and did genetic testing. We met with his pulmonologist, respiratory therapist, nutritionist, social worker, and nurse practitioner. They gave us alot of information. The first thing his pulmonologist said to us when he walked in the room was "I want you to plan for Trevor's college, and he will need a car when he turns 16 and someday he will get married." That was the best thing he could have said. It was soo scary not knowing enough about a disease that your child has. He reassured us that Trevor can have a normal life and do things just like the other kids. ahh big sigh of relief. They start him on creon (enzymes) at that appointment. The next appointment the following month we started doing all the nebs and CPT.

Trevor's daily well rountine consists of nubulized Pulmicort and Albuterol twice a day and Pulmozyme once a day. That is followed by CPT twice a day. He gets enzymes before every bottle. He gets a multi-vitamin once a day. and salt in one bottle a day. I hadn't really established a good routine before all of this was added, so it's just what I do everyday with him. It doesn't really seem like extra. When Trevor is sick or more congested than normal, his nebs get increased to 4 times a day.

Trevor just looks like any other little boy, you wouldn't know that he has CF. Our biggest obstacle has been smokers. All of his grandparents are smokers, so that is always an issue cause you want to make the air he breaths the cleanest regardless. I don't usually take him out in this weather unless I have to, just to avoid as many germs as possible. You will be going to the doctor quite a bit. Trevor goes to clinic once a month. Plus, has all the regular baby well-check up with his pediatrician. He also get the synagis shots once a month for RSV, which is another pediatrician appointment. Along with doctor's visit and perscriptions comes co-pays and alot of them. So also be prepared for that.

It's the what if's that scare you. Try not to dwell on them so much. Everything will be ok. Your gonna have days where that is all you can think about and thats fine, just remember to not let it get bottled up. It's important to have soemone to talk to, even tho sometimes it will feel like no one understands. I find that talking on here is great!
Best of luck to you and your family! I hope I was helpful. It is not the end of the world, even tho it may feel like it from time to time. You are going to have a beautiful baby soon. Best wishes!

 

[KAC1210]

My son Trevor was diagnosed when he was about a month old. We knew we were both carriers, but never in a million years did we ever think he would get it. I guess it was one of those "it will never happen to me things". We had level 2 ultrasound to check for the spot in the bowel, but they always said everything was fine. I had a C-section at a regular hospital. It didn't even have a NICU. Everything was fine. He was a little junky sounding, but c-section babies tend to be that way anyway so I didn't anything of it. We were home about a week when we got the call that his IRT was elevated on his newborn screen and we would have to have it repeated ASAP. It repeated the same. We had a sweat test schedule for the next month. His sweat test was positive. We were contacted by his clinic, which is about an hour and a half away, and had an appointment the following month.

At the first appointment they repeated the sweat test, did a chest x-ray, and did genetic testing. We met with his pulmonologist, respiratory therapist, nutritionist, social worker, and nurse practitioner. They gave us alot of information. The first thing his pulmonologist said to us when he walked in the room was "I want you to plan for Trevor's college, and he will need a car when he turns 16 and someday he will get married." That was the best thing he could have said. It was soo scary not knowing enough about a disease that your child has. He reassured us that Trevor can have a normal life and do things just like the other kids. ahh big sigh of relief. They start him on creon (enzymes) at that appointment. The next appointment the following month we started doing all the nebs and CPT.

Trevor's daily well rountine consists of nubulized Pulmicort and Albuterol twice a day and Pulmozyme once a day. That is followed by CPT twice a day. He gets enzymes before every bottle. He gets a multi-vitamin once a day. and salt in one bottle a day. I hadn't really established a good routine before all of this was added, so it's just what I do everyday with him. It doesn't really seem like extra. When Trevor is sick or more congested than normal, his nebs get increased to 4 times a day.

Trevor just looks like any other little boy, you wouldn't know that he has CF. Our biggest obstacle has been smokers. All of his grandparents are smokers, so that is always an issue cause you want to make the air he breaths the cleanest regardless. I don't usually take him out in this weather unless I have to, just to avoid as many germs as possible. You will be going to the doctor quite a bit. Trevor goes to clinic once a month. Plus, has all the regular baby well-check up with his pediatrician. He also get the synagis shots once a month for RSV, which is another pediatrician appointment. Along with doctor's visit and perscriptions comes co-pays and alot of them. So also be prepared for that.

It's the what if's that scare you. Try not to dwell on them so much. Everything will be ok. Your gonna have days where that is all you can think about and thats fine, just remember to not let it get bottled up. It's important to have soemone to talk to, even tho sometimes it will feel like no one understands. I find that talking on here is great!
Best of luck to you and your family! I hope I was helpful. It is not the end of the world, even tho it may feel like it from time to time. You are going to have a beautiful baby soon. Best wishes!

 

[KAC1210]

My son Trevor was diagnosed when he was about a month old. We knew we were both carriers, but never in a million years did we ever think he would get it. I guess it was one of those "it will never happen to me things". We had level 2 ultrasound to check for the spot in the bowel, but they always said everything was fine. I had a C-section at a regular hospital. It didn't even have a NICU. Everything was fine. He was a little junky sounding, but c-section babies tend to be that way anyway so I didn't anything of it. We were home about a week when we got the call that his IRT was elevated on his newborn screen and we would have to have it repeated ASAP. It repeated the same. We had a sweat test schedule for the next month. His sweat test was positive. We were contacted by his clinic, which is about an hour and a half away, and had an appointment the following month.

At the first appointment they repeated the sweat test, did a chest x-ray, and did genetic testing. We met with his pulmonologist, respiratory therapist, nutritionist, social worker, and nurse practitioner. They gave us alot of information. The first thing his pulmonologist said to us when he walked in the room was "I want you to plan for Trevor's college, and he will need a car when he turns 16 and someday he will get married." That was the best thing he could have said. It was soo scary not knowing enough about a disease that your child has. He reassured us that Trevor can have a normal life and do things just like the other kids. ahh big sigh of relief. They start him on creon (enzymes) at that appointment. The next appointment the following month we started doing all the nebs and CPT.

Trevor's daily well rountine consists of nubulized Pulmicort and Albuterol twice a day and Pulmozyme once a day. That is followed by CPT twice a day. He gets enzymes before every bottle. He gets a multi-vitamin once a day. and salt in one bottle a day. I hadn't really established a good routine before all of this was added, so it's just what I do everyday with him. It doesn't really seem like extra. When Trevor is sick or more congested than normal, his nebs get increased to 4 times a day.

Trevor just looks like any other little boy, you wouldn't know that he has CF. Our biggest obstacle has been smokers. All of his grandparents are smokers, so that is always an issue cause you want to make the air he breaths the cleanest regardless. I don't usually take him out in this weather unless I have to, just to avoid as many germs as possible. You will be going to the doctor quite a bit. Trevor goes to clinic once a month. Plus, has all the regular baby well-check up with his pediatrician. He also get the synagis shots once a month for RSV, which is another pediatrician appointment. Along with doctor's visit and perscriptions comes co-pays and alot of them. So also be prepared for that.

It's the what if's that scare you. Try not to dwell on them so much. Everything will be ok. Your gonna have days where that is all you can think about and thats fine, just remember to not let it get bottled up. It's important to have soemone to talk to, even tho sometimes it will feel like no one understands. I find that talking on here is great!
Best of luck to you and your family! I hope I was helpful. It is not the end of the world, even tho it may feel like it from time to time. You are going to have a beautiful baby soon. Best wishes!

 

[KAC1210]

My son Trevor was diagnosed when he was about a month old. We knew we were both carriers, but never in a million years did we ever think he would get it. I guess it was one of those "it will never happen to me things". We had level 2 ultrasound to check for the spot in the bowel, but they always said everything was fine. I had a C-section at a regular hospital. It didn't even have a NICU. Everything was fine. He was a little junky sounding, but c-section babies tend to be that way anyway so I didn't anything of it. We were home about a week when we got the call that his IRT was elevated on his newborn screen and we would have to have it repeated ASAP. It repeated the same. We had a sweat test schedule for the next month. His sweat test was positive. We were contacted by his clinic, which is about an hour and a half away, and had an appointment the following month.
<br />
<br />At the first appointment they repeated the sweat test, did a chest x-ray, and did genetic testing. We met with his pulmonologist, respiratory therapist, nutritionist, social worker, and nurse practitioner. They gave us alot of information. The first thing his pulmonologist said to us when he walked in the room was "I want you to plan for Trevor's college, and he will need a car when he turns 16 and someday he will get married." That was the best thing he could have said. It was soo scary not knowing enough about a disease that your child has. He reassured us that Trevor can have a normal life and do things just like the other kids. ahh big sigh of relief. They start him on creon (enzymes) at that appointment. The next appointment the following month we started doing all the nebs and CPT.
<br />
<br />Trevor's daily well rountine consists of nubulized Pulmicort and Albuterol twice a day and Pulmozyme once a day. That is followed by CPT twice a day. He gets enzymes before every bottle. He gets a multi-vitamin once a day. and salt in one bottle a day. I hadn't really established a good routine before all of this was added, so it's just what I do everyday with him. It doesn't really seem like extra. When Trevor is sick or more congested than normal, his nebs get increased to 4 times a day.
<br />
<br />Trevor just looks like any other little boy, you wouldn't know that he has CF. Our biggest obstacle has been smokers. All of his grandparents are smokers, so that is always an issue cause you want to make the air he breaths the cleanest regardless. I don't usually take him out in this weather unless I have to, just to avoid as many germs as possible. You will be going to the doctor quite a bit. Trevor goes to clinic once a month. Plus, has all the regular baby well-check up with his pediatrician. He also get the synagis shots once a month for RSV, which is another pediatrician appointment. Along with doctor's visit and perscriptions comes co-pays and alot of them. So also be prepared for that.
<br />
<br />It's the what if's that scare you. Try not to dwell on them so much. Everything will be ok. Your gonna have days where that is all you can think about and thats fine, just remember to not let it get bottled up. It's important to have soemone to talk to, even tho sometimes it will feel like no one understands. I find that talking on here is great!
<br />Best of luck to you and your family! I hope I was helpful. It is not the end of the world, even tho it may feel like it from time to time. You are going to have a beautiful baby soon. Best wishes!
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