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Prenatal CF diagnosi
- Thread starter bwilliams395
- Start date
DS was diagnosed shortly after he was born due to a bowel obstruction, so ditto on the ultrasounds to keep an eye on your child. Not to frighten you, but is there a high level NICU and pediatric surgeon at the hospital you plan to deliver her at? DS had to be flown to the City for his surgery because the local pediatric surgeon was on vacation.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
DS was diagnosed shortly after he was born due to a bowel obstruction, so ditto on the ultrasounds to keep an eye on your child. Not to frighten you, but is there a high level NICU and pediatric surgeon at the hospital you plan to deliver her at? DS had to be flown to the City for his surgery because the local pediatric surgeon was on vacation.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
DS was diagnosed shortly after he was born due to a bowel obstruction, so ditto on the ultrasounds to keep an eye on your child. Not to frighten you, but is there a high level NICU and pediatric surgeon at the hospital you plan to deliver her at? DS had to be flown to the City for his surgery because the local pediatric surgeon was on vacation.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
DS was diagnosed shortly after he was born due to a bowel obstruction, so ditto on the ultrasounds to keep an eye on your child. Not to frighten you, but is there a high level NICU and pediatric surgeon at the hospital you plan to deliver her at? DS had to be flown to the City for his surgery because the local pediatric surgeon was on vacation.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
DS was diagnosed shortly after he was born due to a bowel obstruction, so ditto on the ultrasounds to keep an eye on your child. Not to frighten you, but is there a high level NICU and pediatric surgeon at the hospital you plan to deliver her at? DS had to be flown to the City for his surgery because the local pediatric surgeon was on vacation.
<br />
<br />As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
<br />
<br />We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
<br />
<br />DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
<br />
<br />As for lifestyle changes -- we basically took things one day at at time -- getting into a routine/schedule for meds, chest physiotherapy (CPT)... Enzymes and other medications.
<br />
<br />We asked about daycare -- figuring eventually DS will be going to school. My MIL asked about our dog (she never DID like him). We had a rule about if anyone wanted to hold ds they had to wash hands. I also became better about hand washing/sanitizing when I came home, went shopping -- before DS I really didn't pay attention to those sorts of things.
<br />
<br />DS leads a fairly normal life, just has some extra things we have to do to keep him healty. He goes to daycare preschool, gymnastics & skating lessons. He's taken swimming lessons, baseball... He asked me the other day when he'd be old enough to go to summer camp. Yikes, not sure I'm ready for that -- besides, he's only 5.
bwilliams395
New member
Thanks everyone for your suggestions and information! We are going for monthly ultrasounds to watch for a bowel obstruction, and we're meeting with a neonatologist next week to go over delievery options. So far the concensus seems to be that we can deliver at our intended hospital with our normal OB assuming we don't have an U/S that lead us to think otherwise.
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
bwilliams395
New member
Thanks everyone for your suggestions and information! We are going for monthly ultrasounds to watch for a bowel obstruction, and we're meeting with a neonatologist next week to go over delievery options. So far the concensus seems to be that we can deliver at our intended hospital with our normal OB assuming we don't have an U/S that lead us to think otherwise.
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
bwilliams395
New member
Thanks everyone for your suggestions and information! We are going for monthly ultrasounds to watch for a bowel obstruction, and we're meeting with a neonatologist next week to go over delievery options. So far the concensus seems to be that we can deliver at our intended hospital with our normal OB assuming we don't have an U/S that lead us to think otherwise.
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
bwilliams395
New member
Thanks everyone for your suggestions and information! We are going for monthly ultrasounds to watch for a bowel obstruction, and we're meeting with a neonatologist next week to go over delievery options. So far the concensus seems to be that we can deliver at our intended hospital with our normal OB assuming we don't have an U/S that lead us to think otherwise.
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
-Becca
bwilliams395
New member
Thanks everyone for your suggestions and information! We are going for monthly ultrasounds to watch for a bowel obstruction, and we're meeting with a neonatologist next week to go over delievery options. So far the concensus seems to be that we can deliver at our intended hospital with our normal OB assuming we don't have an U/S that lead us to think otherwise.
<br />I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
<br />-Becca
<br />I am so glad I found this site, it seems to be a great source of information and support! It is so comforting to know so many other people are going through this and LIVING such normal lives with this disease! Our first thoughts when we received the diagnosis was that this is a death sentence for our daughter. I'm so glad to know we were wrong.
<br />-Becca
lilyclairesmom
New member
Hi, I am Christian, mother to be to my third child, of which has been diagnosed with CF by amnio. They have seen hypogenic bowel which indicated bowel obstruction so we are preparing to deliver at the CF Clinic with a NEO surgeon. They have told us that more than likely my baby will need surgery when she arrives. I am very emotional and right now I am 24 weeks pregnant. I am currently on bedrest and it allows alot of time to wonder about what is going to take place in the next few months. I am very scared and uncertain about what to expect. I am also unsure of how I will afford her care. Do you know if there is help out there to assist with medical expenses? I have been laid off as soon as my FMLA runs out and I am not sure if I can get help or not. I wish you much luck and you will be in my prayers. My other two do not have CF I was very shocked to find out that my baby girl will have it..... May God Bless
lilyclairesmom
New member
Hi, I am Christian, mother to be to my third child, of which has been diagnosed with CF by amnio. They have seen hypogenic bowel which indicated bowel obstruction so we are preparing to deliver at the CF Clinic with a NEO surgeon. They have told us that more than likely my baby will need surgery when she arrives. I am very emotional and right now I am 24 weeks pregnant. I am currently on bedrest and it allows alot of time to wonder about what is going to take place in the next few months. I am very scared and uncertain about what to expect. I am also unsure of how I will afford her care. Do you know if there is help out there to assist with medical expenses? I have been laid off as soon as my FMLA runs out and I am not sure if I can get help or not. I wish you much luck and you will be in my prayers. My other two do not have CF I was very shocked to find out that my baby girl will have it..... May God Bless
lilyclairesmom
New member
Hi, I am Christian, mother to be to my third child, of which has been diagnosed with CF by amnio. They have seen hypogenic bowel which indicated bowel obstruction so we are preparing to deliver at the CF Clinic with a NEO surgeon. They have told us that more than likely my baby will need surgery when she arrives. I am very emotional and right now I am 24 weeks pregnant. I am currently on bedrest and it allows alot of time to wonder about what is going to take place in the next few months. I am very scared and uncertain about what to expect. I am also unsure of how I will afford her care. Do you know if there is help out there to assist with medical expenses? I have been laid off as soon as my FMLA runs out and I am not sure if I can get help or not. I wish you much luck and you will be in my prayers. My other two do not have CF I was very shocked to find out that my baby girl will have it..... May God Bless
lilyclairesmom
New member
Hi, I am Christian, mother to be to my third child, of which has been diagnosed with CF by amnio. They have seen hypogenic bowel which indicated bowel obstruction so we are preparing to deliver at the CF Clinic with a NEO surgeon. They have told us that more than likely my baby will need surgery when she arrives. I am very emotional and right now I am 24 weeks pregnant. I am currently on bedrest and it allows alot of time to wonder about what is going to take place in the next few months. I am very scared and uncertain about what to expect. I am also unsure of how I will afford her care. Do you know if there is help out there to assist with medical expenses? I have been laid off as soon as my FMLA runs out and I am not sure if I can get help or not. I wish you much luck and you will be in my prayers. My other two do not have CF I was very shocked to find out that my baby girl will have it..... May God Bless
lilyclairesmom
New member
Hi, I am Christian, mother to be to my third child, of which has been diagnosed with CF by amnio. They have seen hypogenic bowel which indicated bowel obstruction so we are preparing to deliver at the CF Clinic with a NEO surgeon. They have told us that more than likely my baby will need surgery when she arrives. I am very emotional and right now I am 24 weeks pregnant. I am currently on bedrest and it allows alot of time to wonder about what is going to take place in the next few months. I am very scared and uncertain about what to expect. I am also unsure of how I will afford her care. Do you know if there is help out there to assist with medical expenses? I have been laid off as soon as my FMLA runs out and I am not sure if I can get help or not. I wish you much luck and you will be in my prayers. My other two do not have CF I was very shocked to find out that my baby girl will have it..... May God Bless