2 wk old son dx'd

Mommy2Zeke · Mar 26, 2009

Hi, I'm Jen... mom to 2 week old Zeke (Ezekiel). He was born with meconium ileus and had surgery on his 4th day of life outside the womb to clear the bowel blockage. He's quite the little fighter and has recovered in record time and will be going home from NICU just 21 days after being born, and 18 days after surgery.

We were told the day he had surgery that his chances of having CF were around 80%, so we've had a couple of weeks to read up during his recovery and get a treatment plan worked out with his pulmonologist. The newborn screen came back positive last Saturday... so now all we need is to do the sweat test for further confirmation. His screen came back with homozygous Delta f508. My husband and I had no idea we were carriers, so this all has been a shock.

I figured the best thing we can do is find support and encouragement from other parents and patients living with the reality of CF.. so here I am. Any advice would definitely be appeciated. I know we have an unknown road ahead and all I want to do is make the most of life with our precious son.

Mommy2Zeke · Mar 26, 2009

Hi, I'm Jen... mom to 2 week old Zeke (Ezekiel). He was born with meconium ileus and had surgery on his 4th day of life outside the womb to clear the bowel blockage. He's quite the little fighter and has recovered in record time and will be going home from NICU just 21 days after being born, and 18 days after surgery.

We were told the day he had surgery that his chances of having CF were around 80%, so we've had a couple of weeks to read up during his recovery and get a treatment plan worked out with his pulmonologist. The newborn screen came back positive last Saturday... so now all we need is to do the sweat test for further confirmation. His screen came back with homozygous Delta f508. My husband and I had no idea we were carriers, so this all has been a shock.

I figured the best thing we can do is find support and encouragement from other parents and patients living with the reality of CF.. so here I am. Any advice would definitely be appeciated. I know we have an unknown road ahead and all I want to do is make the most of life with our precious son.

Mommy2Zeke · Mar 26, 2009

Hi, I'm Jen... mom to 2 week old Zeke (Ezekiel). He was born with meconium ileus and had surgery on his 4th day of life outside the womb to clear the bowel blockage. He's quite the little fighter and has recovered in record time and will be going home from NICU just 21 days after being born, and 18 days after surgery.

We were told the day he had surgery that his chances of having CF were around 80%, so we've had a couple of weeks to read up during his recovery and get a treatment plan worked out with his pulmonologist. The newborn screen came back positive last Saturday... so now all we need is to do the sweat test for further confirmation. His screen came back with homozygous Delta f508. My husband and I had no idea we were carriers, so this all has been a shock.

I figured the best thing we can do is find support and encouragement from other parents and patients living with the reality of CF.. so here I am. Any advice would definitely be appeciated. I know we have an unknown road ahead and all I want to do is make the most of life with our precious son.

Mommy2Zeke · Mar 26, 2009

Hi, I'm Jen... mom to 2 week old Zeke (Ezekiel). He was born with meconium ileus and had surgery on his 4th day of life outside the womb to clear the bowel blockage. He's quite the little fighter and has recovered in record time and will be going home from NICU just 21 days after being born, and 18 days after surgery.

We were told the day he had surgery that his chances of having CF were around 80%, so we've had a couple of weeks to read up during his recovery and get a treatment plan worked out with his pulmonologist. The newborn screen came back positive last Saturday... so now all we need is to do the sweat test for further confirmation. His screen came back with homozygous Delta f508. My husband and I had no idea we were carriers, so this all has been a shock.

I figured the best thing we can do is find support and encouragement from other parents and patients living with the reality of CF.. so here I am. Any advice would definitely be appeciated. I know we have an unknown road ahead and all I want to do is make the most of life with our precious son.

Mommy2Zeke · Mar 26, 2009

Hi, I'm Jen... mom to 2 week old Zeke (Ezekiel). He was born with meconium ileus and had surgery on his 4th day of life outside the womb to clear the bowel blockage. He's quite the little fighter and has recovered in record time and will be going home from NICU just 21 days after being born, and 18 days after surgery.
<br />
<br />We were told the day he had surgery that his chances of having CF were around 80%, so we've had a couple of weeks to read up during his recovery and get a treatment plan worked out with his pulmonologist. The newborn screen came back positive last Saturday... so now all we need is to do the sweat test for further confirmation. His screen came back with homozygous Delta f508. My husband and I had no idea we were carriers, so this all has been a shock.
<br />
<br />I figured the best thing we can do is find support and encouragement from other parents and patients living with the reality of CF.. so here I am. Any advice would definitely be appeciated. I know we have an unknown road ahead and all I want to do is make the most of life with our precious son.

grammakaky · Mar 26, 2009

Hello Jen, the people here are very helpful and you will learn alot of information. Also congratulations on your new arrival, you and your husband are blessed. Just take one day at atime and enjoy each stage with Zeke. Remember, Zeke is the joy of your lives; it's just that there's alittle extra work involved.

grammakaky · Mar 26, 2009

Hello Jen, the people here are very helpful and you will learn alot of information. Also congratulations on your new arrival, you and your husband are blessed. Just take one day at atime and enjoy each stage with Zeke. Remember, Zeke is the joy of your lives; it's just that there's alittle extra work involved.

grammakaky · Mar 26, 2009

Hello Jen, the people here are very helpful and you will learn alot of information. Also congratulations on your new arrival, you and your husband are blessed. Just take one day at atime and enjoy each stage with Zeke. Remember, Zeke is the joy of your lives; it's just that there's alittle extra work involved.

grammakaky · Mar 26, 2009

Hello Jen, the people here are very helpful and you will learn alot of information. Also congratulations on your new arrival, you and your husband are blessed. Just take one day at atime and enjoy each stage with Zeke. Remember, Zeke is the joy of your lives; it's just that there's alittle extra work involved.

grammakaky · Mar 26, 2009

Hello Jen, the people here are very helpful and you will learn alot of information. Also congratulations on your new arrival, you and your husband are blessed. Just take one day at atime and enjoy each stage with Zeke. Remember, Zeke is the joy of your lives; it's just that there's alittle extra work involved.

Rebjane · Mar 26, 2009

Hi Jen,

I am sorry about your baby son's diagnosis of CF. There is alot of support and information here. My daughter is now 6 with CF. She too was born with a meconium ileus and had surgery at 5 days old to fix the blockage. She is in public kindergarten school. Please ask any questions you have. A great place and resource of CF info that is reliable is the Cystic Fibrosis Foundation's website at www.cff.org If you do research on the web about CF some info is outdated and wrong, so be careful. Some doctor's are not up on the latest info on CF so it's very important to have your baby go to a CF center for his care. Wishing you all the best...

Rebjane · Mar 26, 2009

Hi Jen,

I am sorry about your baby son's diagnosis of CF. There is alot of support and information here. My daughter is now 6 with CF. She too was born with a meconium ileus and had surgery at 5 days old to fix the blockage. She is in public kindergarten school. Please ask any questions you have. A great place and resource of CF info that is reliable is the Cystic Fibrosis Foundation's website at www.cff.org If you do research on the web about CF some info is outdated and wrong, so be careful. Some doctor's are not up on the latest info on CF so it's very important to have your baby go to a CF center for his care. Wishing you all the best...

Rebjane · Mar 26, 2009

Hi Jen,

I am sorry about your baby son's diagnosis of CF. There is alot of support and information here. My daughter is now 6 with CF. She too was born with a meconium ileus and had surgery at 5 days old to fix the blockage. She is in public kindergarten school. Please ask any questions you have. A great place and resource of CF info that is reliable is the Cystic Fibrosis Foundation's website at www.cff.org If you do research on the web about CF some info is outdated and wrong, so be careful. Some doctor's are not up on the latest info on CF so it's very important to have your baby go to a CF center for his care. Wishing you all the best...

Rebjane · Mar 26, 2009

Hi Jen,

I am sorry about your baby son's diagnosis of CF. There is alot of support and information here. My daughter is now 6 with CF. She too was born with a meconium ileus and had surgery at 5 days old to fix the blockage. She is in public kindergarten school. Please ask any questions you have. A great place and resource of CF info that is reliable is the Cystic Fibrosis Foundation's website at www.cff.org If you do research on the web about CF some info is outdated and wrong, so be careful. Some doctor's are not up on the latest info on CF so it's very important to have your baby go to a CF center for his care. Wishing you all the best...

Rebjane · Mar 26, 2009

Hi Jen,

I am sorry about your baby son's diagnosis of CF. There is alot of support and information here. My daughter is now 6 with CF. She too was born with a meconium ileus and had surgery at 5 days old to fix the blockage. She is in public kindergarten school. Please ask any questions you have. A great place and resource of CF info that is reliable is the Cystic Fibrosis Foundation's website at www.cff.org If you do research on the web about CF some info is outdated and wrong, so be careful. Some doctor's are not up on the latest info on CF so it's very important to have your baby go to a CF center for his care. Wishing you all the best...

Ratatosk · Mar 26, 2009