newly diagnosed at 5months old.

D

DEES4

New member
Hi Shawn,
I just wanted to say I feel your pain. My son was also born with a blockage (he is now 2 1/2 years old). We also had no family history of cf and we also have three other children who are 100% healthy. When they told us there was a chance the baby would have cystic fibrosis we were like there is no way it could be that. I thought about it alot while I was pregnant but still really didn't think that he would have cf. Well we were completely knocked out of our shoes when they told us that his genetic test came back and he did have cf. He was 2 weeks old when we found out. He had to have a few surgeries for the blockage and the first year was pretty rough. He is now a very active toddler who is into everything. He is the baby of the family and is so spoiled! We all adore him and he brings so much joy to me. I know this is a really hard time for you guys. Just know you are not alone....there are many others on here who have been where you are right now. I have learned so much on this board and I know you will as well!
Carrie
 
D

DEES4

New member
Hi Shawn,
I just wanted to say I feel your pain. My son was also born with a blockage (he is now 2 1/2 years old). We also had no family history of cf and we also have three other children who are 100% healthy. When they told us there was a chance the baby would have cystic fibrosis we were like there is no way it could be that. I thought about it alot while I was pregnant but still really didn't think that he would have cf. Well we were completely knocked out of our shoes when they told us that his genetic test came back and he did have cf. He was 2 weeks old when we found out. He had to have a few surgeries for the blockage and the first year was pretty rough. He is now a very active toddler who is into everything. He is the baby of the family and is so spoiled! We all adore him and he brings so much joy to me. I know this is a really hard time for you guys. Just know you are not alone....there are many others on here who have been where you are right now. I have learned so much on this board and I know you will as well!
Carrie
 
D

DEES4

New member
Hi Shawn,
I just wanted to say I feel your pain. My son was also born with a blockage (he is now 2 1/2 years old). We also had no family history of cf and we also have three other children who are 100% healthy. When they told us there was a chance the baby would have cystic fibrosis we were like there is no way it could be that. I thought about it alot while I was pregnant but still really didn't think that he would have cf. Well we were completely knocked out of our shoes when they told us that his genetic test came back and he did have cf. He was 2 weeks old when we found out. He had to have a few surgeries for the blockage and the first year was pretty rough. He is now a very active toddler who is into everything. He is the baby of the family and is so spoiled! We all adore him and he brings so much joy to me. I know this is a really hard time for you guys. Just know you are not alone....there are many others on here who have been where you are right now. I have learned so much on this board and I know you will as well!
Carrie
 
M

mneville

Guest
Shawn- I feel for you and your wife. It is so hard to find out the news. But keep the faith that it gets easier! I wish you could see Aidan now. When he was first diagnosed, I pictured a thin, sickly toddler. Aidan is the epitome of health if you can believe that! He is big for his age and is doing incredible. Early diagnosis saved his health. Aidan was already showing GI symptoms at a week old. I had actually called the doctor to report them (we were told it was fine). 2 hours later they called to say CF.

We are pursuing litigation with the OB. I asked to have the test done. For some reason, it was never done.

I pray that you and your wife get through this tough time. What state do you live in? Megan
 
M

mneville

Guest
Shawn- I feel for you and your wife. It is so hard to find out the news. But keep the faith that it gets easier! I wish you could see Aidan now. When he was first diagnosed, I pictured a thin, sickly toddler. Aidan is the epitome of health if you can believe that! He is big for his age and is doing incredible. Early diagnosis saved his health. Aidan was already showing GI symptoms at a week old. I had actually called the doctor to report them (we were told it was fine). 2 hours later they called to say CF.

We are pursuing litigation with the OB. I asked to have the test done. For some reason, it was never done.

I pray that you and your wife get through this tough time. What state do you live in? Megan
 
M

mneville

Guest
Shawn- I feel for you and your wife. It is so hard to find out the news. But keep the faith that it gets easier! I wish you could see Aidan now. When he was first diagnosed, I pictured a thin, sickly toddler. Aidan is the epitome of health if you can believe that! He is big for his age and is doing incredible. Early diagnosis saved his health. Aidan was already showing GI symptoms at a week old. I had actually called the doctor to report them (we were told it was fine). 2 hours later they called to say CF.

We are pursuing litigation with the OB. I asked to have the test done. For some reason, it was never done.

I pray that you and your wife get through this tough time. What state do you live in? Megan
 
N

Nicole

New member
Shawn,

Our son (27 months) was born with a bowel blockage as well. We began to see it on my 20 week ultrasound. The drs sent us for carrier testing which we both came back positive for. However, we decided not to have an amnio to see if he had CF for sure. So the rest of the preganacy was spent worring, wondering, researching, and praying that he would not have CF. I was induced at 39 weeks and at his birth the docs took cord blood so they could test him right away. His birth went fine. There were pediatricians there just in case. They took him to do an x-ray pretty quick whick looked okay I guess because they decided to go ahead and try and feed him. His first day he was with me in my room and ate okay but no stool. By the middle of the night his belly began to get distended and he would spit up, not bile, just formula. The next morning they did another x-ray which didn't look good so they decided to admit him to the children's hospital. They were going to try some enemas to see if that would make him go. After 5 days and no luck with that the surgeon decided to go ahead and do surgery. He did well and was given an ostomy. However, because of issues with feeding, weight gain, liver problems and a blood infection he was in the hospital for 49 days. I am not saying this to scare you, just so that you might have some idea what to expect. I know we were not expecting anything like that. Today our son is doing very well. He has not been hospitaized and is growing near the 90%. He's happy, funny, and we all love him to death! I know how difficult this time will be for you and your wife and I truly wish you both all the best and pray that your baby will not have CF.
 
N

Nicole

New member
Shawn,

Our son (27 months) was born with a bowel blockage as well. We began to see it on my 20 week ultrasound. The drs sent us for carrier testing which we both came back positive for. However, we decided not to have an amnio to see if he had CF for sure. So the rest of the preganacy was spent worring, wondering, researching, and praying that he would not have CF. I was induced at 39 weeks and at his birth the docs took cord blood so they could test him right away. His birth went fine. There were pediatricians there just in case. They took him to do an x-ray pretty quick whick looked okay I guess because they decided to go ahead and try and feed him. His first day he was with me in my room and ate okay but no stool. By the middle of the night his belly began to get distended and he would spit up, not bile, just formula. The next morning they did another x-ray which didn't look good so they decided to admit him to the children's hospital. They were going to try some enemas to see if that would make him go. After 5 days and no luck with that the surgeon decided to go ahead and do surgery. He did well and was given an ostomy. However, because of issues with feeding, weight gain, liver problems and a blood infection he was in the hospital for 49 days. I am not saying this to scare you, just so that you might have some idea what to expect. I know we were not expecting anything like that. Today our son is doing very well. He has not been hospitaized and is growing near the 90%. He's happy, funny, and we all love him to death! I know how difficult this time will be for you and your wife and I truly wish you both all the best and pray that your baby will not have CF.
 
N

Nicole

New member
Shawn,

Our son (27 months) was born with a bowel blockage as well. We began to see it on my 20 week ultrasound. The drs sent us for carrier testing which we both came back positive for. However, we decided not to have an amnio to see if he had CF for sure. So the rest of the preganacy was spent worring, wondering, researching, and praying that he would not have CF. I was induced at 39 weeks and at his birth the docs took cord blood so they could test him right away. His birth went fine. There were pediatricians there just in case. They took him to do an x-ray pretty quick whick looked okay I guess because they decided to go ahead and try and feed him. His first day he was with me in my room and ate okay but no stool. By the middle of the night his belly began to get distended and he would spit up, not bile, just formula. The next morning they did another x-ray which didn't look good so they decided to admit him to the children's hospital. They were going to try some enemas to see if that would make him go. After 5 days and no luck with that the surgeon decided to go ahead and do surgery. He did well and was given an ostomy. However, because of issues with feeding, weight gain, liver problems and a blood infection he was in the hospital for 49 days. I am not saying this to scare you, just so that you might have some idea what to expect. I know we were not expecting anything like that. Today our son is doing very well. He has not been hospitaized and is growing near the 90%. He's happy, funny, and we all love him to death! I know how difficult this time will be for you and your wife and I truly wish you both all the best and pray that your baby will not have CF.
 
S

scheesman

Guest
Hi Megan,<br>
   We live in Titusville, Florida east of
Orlando.<br>
<br>
  We knew nothing about cf until week 30. The first sign
of the blockage was at 24 weeks.They said they thought it was a
shadow. Well they were wrong.<br>
<br>
   The story with the OB is this. We had one up
until July and she wasn't answering our ?'s,so we switched. She was
the one to do all of Liz's blood work,witch included the cf test on
3/29. Well she never gave us the results. We got the results on
week 30 (9/11) after having to go to her office and records office
at the hospital. First we went to her office and she thought we
were another couple that had seen her the week before, when in fact
we had not seen her in about 2 months. We corrected her and she
read some results of a test to us and said it was negative for cf.
So we left happy and we called the the lab that did the test,
because again she did not explain it. The lab said the cf test
wasn't even done on that test,that it was done on 3/29. So we get
the test results and go straight to the new OB and get me tested.
We had to wait over a week and it came back positive for cf. We had
a really bad day.<br>
<br>
   On 10/11 Lily weighed 5lb 3oz. We don't know how
big the blockage is. I never knew if it was important . Now I know
everything is important to ask.<br>
<br>
   If you guys can think of ?'s to ask the doc
please list them.<br>
<br>
                          THANKS
TO EVERYONE FOR BEING HERE
 
S

scheesman

Guest
Hi Megan,<br>
   We live in Titusville, Florida east of
Orlando.<br>
<br>
  We knew nothing about cf until week 30. The first sign
of the blockage was at 24 weeks.They said they thought it was a
shadow. Well they were wrong.<br>
<br>
   The story with the OB is this. We had one up
until July and she wasn't answering our ?'s,so we switched. She was
the one to do all of Liz's blood work,witch included the cf test on
3/29. Well she never gave us the results. We got the results on
week 30 (9/11) after having to go to her office and records office
at the hospital. First we went to her office and she thought we
were another couple that had seen her the week before, when in fact
we had not seen her in about 2 months. We corrected her and she
read some results of a test to us and said it was negative for cf.
So we left happy and we called the the lab that did the test,
because again she did not explain it. The lab said the cf test
wasn't even done on that test,that it was done on 3/29. So we get
the test results and go straight to the new OB and get me tested.
We had to wait over a week and it came back positive for cf. We had
a really bad day.<br>
<br>
   On 10/11 Lily weighed 5lb 3oz. We don't know how
big the blockage is. I never knew if it was important . Now I know
everything is important to ask.<br>
<br>
   If you guys can think of ?'s to ask the doc
please list them.<br>
<br>
                          THANKS
TO EVERYONE FOR BEING HERE
 
S

scheesman

Guest
Hi Megan,<br>
   We live in Titusville, Florida east of
Orlando.<br>
<br>
  We knew nothing about cf until week 30. The first sign
of the blockage was at 24 weeks.They said they thought it was a
shadow. Well they were wrong.<br>
<br>
   The story with the OB is this. We had one up
until July and she wasn't answering our ?'s,so we switched. She was
the one to do all of Liz's blood work,witch included the cf test on
3/29. Well she never gave us the results. We got the results on
week 30 (9/11) after having to go to her office and records office
at the hospital. First we went to her office and she thought we
were another couple that had seen her the week before, when in fact
we had not seen her in about 2 months. We corrected her and she
read some results of a test to us and said it was negative for cf.
So we left happy and we called the the lab that did the test,
because again she did not explain it. The lab said the cf test
wasn't even done on that test,that it was done on 3/29. So we get
the test results and go straight to the new OB and get me tested.
We had to wait over a week and it came back positive for cf. We had
a really bad day.<br>
<br>
   On 10/11 Lily weighed 5lb 3oz. We don't know how
big the blockage is. I never knew if it was important . Now I know
everything is important to ask.<br>
<br>
   If you guys can think of ?'s to ask the doc
please list them.<br>
<br>
                          THANKS
TO EVERYONE FOR BEING HERE
 
N

Nicole

New member
Is your wife having regular ultrasounds, meaning every week or so? Non-stress tests? My care was transferred to a perinatologist who wanted to see me quite often so he could keep a close eye on the baby and watch for any signs of distress. Are you scheduled to deliver the baby where they have a good NICU and pediatric surgeon in case that is needed? Do they have a plan to get the baby tested as soon as possible? Do you know what mutations you and your wife have?That info could speed up the testing.
 
N

Nicole

New member
Is your wife having regular ultrasounds, meaning every week or so? Non-stress tests? My care was transferred to a perinatologist who wanted to see me quite often so he could keep a close eye on the baby and watch for any signs of distress. Are you scheduled to deliver the baby where they have a good NICU and pediatric surgeon in case that is needed? Do they have a plan to get the baby tested as soon as possible? Do you know what mutations you and your wife have?That info could speed up the testing.
 
N

Nicole

New member
Is your wife having regular ultrasounds, meaning every week or so? Non-stress tests? My care was transferred to a perinatologist who wanted to see me quite often so he could keep a close eye on the baby and watch for any signs of distress. Are you scheduled to deliver the baby where they have a good NICU and pediatric surgeon in case that is needed? Do they have a plan to get the baby tested as soon as possible? Do you know what mutations you and your wife have?That info could speed up the testing.
 
S

scheesman

Guest
We have been going to the perinatologist every 4 weeks. Our next
visit is 11/8 . We go to the regular OB this Wednesday . Lily is
going to delivered at Winnie Palmer Hospital in Orlando, and they
say it is the 2nd largest NICU in the country. Florida does newborn
screening for several things. Do you think it is better to take the
blood from the umbilical cord, rather than the heel? We both have
the 508 mutations. We still don't really know what that means. They
gave us a number for a pediatric surgeon but we haven't called yet.
 
S

scheesman

Guest
We have been going to the perinatologist every 4 weeks. Our next
visit is 11/8 . We go to the regular OB this Wednesday . Lily is
going to delivered at Winnie Palmer Hospital in Orlando, and they
say it is the 2nd largest NICU in the country. Florida does newborn
screening for several things. Do you think it is better to take the
blood from the umbilical cord, rather than the heel? We both have
the 508 mutations. We still don't really know what that means. They
gave us a number for a pediatric surgeon but we haven't called yet.
 
S

scheesman

Guest
We have been going to the perinatologist every 4 weeks. Our next
visit is 11/8 . We go to the regular OB this Wednesday . Lily is
going to delivered at Winnie Palmer Hospital in Orlando, and they
say it is the 2nd largest NICU in the country. Florida does newborn
screening for several things. Do you think it is better to take the
blood from the umbilical cord, rather than the heel? We both have
the 508 mutations. We still don't really know what that means. They
gave us a number for a pediatric surgeon but we haven't called yet.
 
M

mneville

Guest
Shawn- my husband and I also both have the Deltaf508 mutations. That means that your baby will need pancreatic enzymes if she does have CF. Any questions- please ask. I gotta run as my 2 year old terror is raising hell!
Megan
 
M

mneville

Guest
Shawn- my husband and I also both have the Deltaf508 mutations. That means that your baby will need pancreatic enzymes if she does have CF. Any questions- please ask. I gotta run as my 2 year old terror is raising hell!
Megan
 
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