New to CF-need advice!

Mommy2Zeke · May 9, 2009

Congrats on having your son. I know all of this is so scary and it can be devastating at first. Just know you will get through this time and you'll be able to take your baby home and have happy times with him.

I too have been through the same thing and the wait for the first poopy diaper is eternity. Zeke had surgery for MI at 3 days old and didn't poop for 3 days following the surgery and it was another week after that before he had a transitional poopy diaper (where it wasn't meconium).

I am a bit surprised they are feeding him this early, but I know each doc has their own method of getting the bowels working after MI surgery. Take care and PM if you need to talk.

Mommy2Zeke · May 9, 2009

Congrats on having your son. I know all of this is so scary and it can be devastating at first. Just know you will get through this time and you'll be able to take your baby home and have happy times with him.

I too have been through the same thing and the wait for the first poopy diaper is eternity. Zeke had surgery for MI at 3 days old and didn't poop for 3 days following the surgery and it was another week after that before he had a transitional poopy diaper (where it wasn't meconium).

I am a bit surprised they are feeding him this early, but I know each doc has their own method of getting the bowels working after MI surgery. Take care and PM if you need to talk.

Mommy2Zeke · May 9, 2009

Congrats on having your son. I know all of this is so scary and it can be devastating at first. Just know you will get through this time and you'll be able to take your baby home and have happy times with him.

I too have been through the same thing and the wait for the first poopy diaper is eternity. Zeke had surgery for MI at 3 days old and didn't poop for 3 days following the surgery and it was another week after that before he had a transitional poopy diaper (where it wasn't meconium).

I am a bit surprised they are feeding him this early, but I know each doc has their own method of getting the bowels working after MI surgery. Take care and PM if you need to talk.

Mommy2Zeke · May 9, 2009

Congrats on having your son. I know all of this is so scary and it can be devastating at first. Just know you will get through this time and you'll be able to take your baby home and have happy times with him.

I too have been through the same thing and the wait for the first poopy diaper is eternity. Zeke had surgery for MI at 3 days old and didn't poop for 3 days following the surgery and it was another week after that before he had a transitional poopy diaper (where it wasn't meconium).

I am a bit surprised they are feeding him this early, but I know each doc has their own method of getting the bowels working after MI surgery. Take care and PM if you need to talk.

Mommy2Zeke · May 9, 2009

Congrats on having your son. I know all of this is so scary and it can be devastating at first. Just know you will get through this time and you'll be able to take your baby home and have happy times with him.
 
 I too have been through the same thing and the wait for the first poopy diaper is eternity. Zeke had surgery for MI at 3 days old and didn't poop for 3 days following the surgery and it was another week after that before he had a transitional poopy diaper (where it wasn't meconium).
 
 I am a bit surprised they are feeding him this early, but I know each doc has their own method of getting the bowels working after MI surgery. Take care and PM if you need to talk.

fuel1316 · May 12, 2009

congrats on your son!

my DD is 2 months old now and was born with MI as well. we didnt know right away. she started to get distended and was sent for an enima. nothing happened. she was sent for a barrium enima 3 times. still no stool. she went in for surgery at 2 weeks old. they removed 2 feet of meconium block. she started eating 4 days later and spent a total 23 days in the nicu.

shes home with us now. on 2 pills of creon before each feed and 3 lung treatments a day.

i know what your going through. hang in there. your son is going to be home before you know it. its long adn slow and you get them home and everything gets better.

fuel1316 · May 12, 2009

congrats on your son!

my DD is 2 months old now and was born with MI as well. we didnt know right away. she started to get distended and was sent for an enima. nothing happened. she was sent for a barrium enima 3 times. still no stool. she went in for surgery at 2 weeks old. they removed 2 feet of meconium block. she started eating 4 days later and spent a total 23 days in the nicu.

shes home with us now. on 2 pills of creon before each feed and 3 lung treatments a day.

i know what your going through. hang in there. your son is going to be home before you know it. its long adn slow and you get them home and everything gets better.

fuel1316 · May 12, 2009

congrats on your son!

my DD is 2 months old now and was born with MI as well. we didnt know right away. she started to get distended and was sent for an enima. nothing happened. she was sent for a barrium enima 3 times. still no stool. she went in for surgery at 2 weeks old. they removed 2 feet of meconium block. she started eating 4 days later and spent a total 23 days in the nicu.

shes home with us now. on 2 pills of creon before each feed and 3 lung treatments a day.

i know what your going through. hang in there. your son is going to be home before you know it. its long adn slow and you get them home and everything gets better.

fuel1316 · May 12, 2009

congrats on your son!

my DD is 2 months old now and was born with MI as well. we didnt know right away. she started to get distended and was sent for an enima. nothing happened. she was sent for a barrium enima 3 times. still no stool. she went in for surgery at 2 weeks old. they removed 2 feet of meconium block. she started eating 4 days later and spent a total 23 days in the nicu.

shes home with us now. on 2 pills of creon before each feed and 3 lung treatments a day.

i know what your going through. hang in there. your son is going to be home before you know it. its long adn slow and you get them home and everything gets better.

fuel1316 · May 12, 2009

congrats on your son!
 
 my DD is 2 months old now and was born with MI as well. we didnt know right away. she started to get distended and was sent for an enima. nothing happened. she was sent for a barrium enima 3 times. still no stool. she went in for surgery at 2 weeks old. they removed 2 feet of meconium block. she started eating 4 days later and spent a total 23 days in the nicu.
 
 shes home with us now. on 2 pills of creon before each feed and 3 lung treatments a day.
 
 i know what your going through. hang in there. your son is going to be home before you know it. its long adn slow and you get them home and everything gets better.

Tammy15 · May 17, 2009

When my son was born we had no idea CF existed in either family he was 1 mos early and the NCIU unit had told us he had a bowl movement but had to be taught how to suck a bottle. They transferred him to another hospital which we did not want to happen, which thank god it did. 3 hrs later we get a call from a surgeon, the nurse there noticed stomach distended when I told her and surgeon what the prior nurse had told me they looked at me like I was crazy. My son had never had a bowel movement and apparently all babies know how to suck. He was my first so I had no clue. They did surgery and I remember them putting enzymes in when they wanted to feed him, which was I think about 3 days after. He had gotten a hold of the tube and pulled it so when the powder went in it went to his lungs and he stopped breating. When they got him back he just kinda looked at me like mom did you see what I did? It was about 3-4weeks before bowel movement . I know its scary and it will probaby seem like for everytime you go forward you take a few steps back. They told me my son would not see 2 yrs old then it was 8 then it was he would never graduate. Today he is 28 and doing well so take heart. I hope all goes well and will say a prayer for you and your family.

Tammy15 · May 17, 2009

When my son was born we had no idea CF existed in either family he was 1 mos early and the NCIU unit had told us he had a bowl movement but had to be taught how to suck a bottle. They transferred him to another hospital which we did not want to happen, which thank god it did. 3 hrs later we get a call from a surgeon, the nurse there noticed stomach distended when I told her and surgeon what the prior nurse had told me they looked at me like I was crazy. My son had never had a bowel movement and apparently all babies know how to suck. He was my first so I had no clue. They did surgery and I remember them putting enzymes in when they wanted to feed him, which was I think about 3 days after. He had gotten a hold of the tube and pulled it so when the powder went in it went to his lungs and he stopped breating. When they got him back he just kinda looked at me like mom did you see what I did? It was about 3-4weeks before bowel movement . I know its scary and it will probaby seem like for everytime you go forward you take a few steps back. They told me my son would not see 2 yrs old then it was 8 then it was he would never graduate. Today he is 28 and doing well so take heart. I hope all goes well and will say a prayer for you and your family.

Tammy15 · May 17, 2009

When my son was born we had no idea CF existed in either family he was 1 mos early and the NCIU unit had told us he had a bowl movement but had to be taught how to suck a bottle. They transferred him to another hospital which we did not want to happen, which thank god it did. 3 hrs later we get a call from a surgeon, the nurse there noticed stomach distended when I told her and surgeon what the prior nurse had told me they looked at me like I was crazy. My son had never had a bowel movement and apparently all babies know how to suck. He was my first so I had no clue. They did surgery and I remember them putting enzymes in when they wanted to feed him, which was I think about 3 days after. He had gotten a hold of the tube and pulled it so when the powder went in it went to his lungs and he stopped breating. When they got him back he just kinda looked at me like mom did you see what I did? It was about 3-4weeks before bowel movement . I know its scary and it will probaby seem like for everytime you go forward you take a few steps back. They told me my son would not see 2 yrs old then it was 8 then it was he would never graduate. Today he is 28 and doing well so take heart. I hope all goes well and will say a prayer for you and your family.

Tammy15 · May 17, 2009

When my son was born we had no idea CF existed in either family he was 1 mos early and the NCIU unit had told us he had a bowl movement but had to be taught how to suck a bottle. They transferred him to another hospital which we did not want to happen, which thank god it did. 3 hrs later we get a call from a surgeon, the nurse there noticed stomach distended when I told her and surgeon what the prior nurse had told me they looked at me like I was crazy. My son had never had a bowel movement and apparently all babies know how to suck. He was my first so I had no clue. They did surgery and I remember them putting enzymes in when they wanted to feed him, which was I think about 3 days after. He had gotten a hold of the tube and pulled it so when the powder went in it went to his lungs and he stopped breating. When they got him back he just kinda looked at me like mom did you see what I did? It was about 3-4weeks before bowel movement . I know its scary and it will probaby seem like for everytime you go forward you take a few steps back. They told me my son would not see 2 yrs old then it was 8 then it was he would never graduate. Today he is 28 and doing well so take heart. I hope all goes well and will say a prayer for you and your family.

Tammy15 · May 17, 2009

When my son was born we had no idea CF existed in either family he was 1 mos early and the NCIU unit had told us he had a bowl movement but had to be taught how to suck a bottle. They transferred him to another hospital which we did not want to happen, which thank god it did. 3 hrs later we get a call from a surgeon, the nurse there noticed stomach distended when I told her and surgeon what the prior nurse had told me they looked at me like I was crazy. My son had never had a bowel movement and apparently all babies know how to suck. He was my first so I had no clue. They did surgery and I remember them putting enzymes in when they wanted to feed him, which was I think about 3 days after. He had gotten a hold of the tube and pulled it so when the powder went in it went to his lungs and he stopped breating. When they got him back he just kinda looked at me like mom did you see what I did? It was about 3-4weeks before bowel movement . I know its scary and it will probaby seem like for everytime you go forward you take a few steps back. They told me my son would not see 2 yrs old then it was 8 then it was he would never graduate. Today he is 28 and doing well so take heart. I hope all goes well and will say a prayer for you and your family.

LisaGreene · May 18, 2009

Hi Jenny,
I just wanted to add a word of encouragement to you along with the others. We went through the same thing with our firstborn, Jacob. MI, surgery, and nearly a month in NICU. It took that long for him to have his first poop. And, boy did we celebrate!

And, you'll be celebrating too, before you know it.

Hang in there. It can be a tough time. Grief is normal and a process. The important thing is to have support and take good care of yourself. The joy will come; you wait and see.

Please let me know if you need someone to talk to. You can send me a private message and I'll send my phone number. It helps to know we are not alone. And you're not.

On a more practical note: my docs encouraged me to breastfeed because that is the very best thing for babies including all of the antibodies, etc. Because of his long stay in the NICU, Jake never learned to "latch on" so would not breastfeed. But I didn't give up and pumped my milk for- get this- almost a year. No visuals, please. (grin) Breastmilk is more digestable than formula so if you are so inclined and able- maybe try breast feeding (or pumping).

Both of our kids, at 8 and 10, are doing very well. Don't let what you hear about the statistics scare you- there is great hope for those with CF.

Big hugs,
Lisa G

LisaGreene · May 18, 2009

Hi Jenny,
I just wanted to add a word of encouragement to you along with the others. We went through the same thing with our firstborn, Jacob. MI, surgery, and nearly a month in NICU. It took that long for him to have his first poop. And, boy did we celebrate!

And, you'll be celebrating too, before you know it.

Hang in there. It can be a tough time. Grief is normal and a process. The important thing is to have support and take good care of yourself. The joy will come; you wait and see.

Please let me know if you need someone to talk to. You can send me a private message and I'll send my phone number. It helps to know we are not alone. And you're not.

On a more practical note: my docs encouraged me to breastfeed because that is the very best thing for babies including all of the antibodies, etc. Because of his long stay in the NICU, Jake never learned to "latch on" so would not breastfeed. But I didn't give up and pumped my milk for- get this- almost a year. No visuals, please. (grin) Breastmilk is more digestable than formula so if you are so inclined and able- maybe try breast feeding (or pumping).

Both of our kids, at 8 and 10, are doing very well. Don't let what you hear about the statistics scare you- there is great hope for those with CF.

Big hugs,
Lisa G

LisaGreene · May 18, 2009

Hi Jenny,
I just wanted to add a word of encouragement to you along with the others. We went through the same thing with our firstborn, Jacob. MI, surgery, and nearly a month in NICU. It took that long for him to have his first poop. And, boy did we celebrate!

And, you'll be celebrating too, before you know it.

Hang in there. It can be a tough time. Grief is normal and a process. The important thing is to have support and take good care of yourself. The joy will come; you wait and see.

Please let me know if you need someone to talk to. You can send me a private message and I'll send my phone number. It helps to know we are not alone. And you're not.

On a more practical note: my docs encouraged me to breastfeed because that is the very best thing for babies including all of the antibodies, etc. Because of his long stay in the NICU, Jake never learned to "latch on" so would not breastfeed. But I didn't give up and pumped my milk for- get this- almost a year. No visuals, please. (grin) Breastmilk is more digestable than formula so if you are so inclined and able- maybe try breast feeding (or pumping).

Both of our kids, at 8 and 10, are doing very well. Don't let what you hear about the statistics scare you- there is great hope for those with CF.

Big hugs,
Lisa G

LisaGreene · May 18, 2009

Hi Jenny,
I just wanted to add a word of encouragement to you along with the others. We went through the same thing with our firstborn, Jacob. MI, surgery, and nearly a month in NICU. It took that long for him to have his first poop. And, boy did we celebrate!

And, you'll be celebrating too, before you know it.

Hang in there. It can be a tough time. Grief is normal and a process. The important thing is to have support and take good care of yourself. The joy will come; you wait and see.

Please let me know if you need someone to talk to. You can send me a private message and I'll send my phone number. It helps to know we are not alone. And you're not.

On a more practical note: my docs encouraged me to breastfeed because that is the very best thing for babies including all of the antibodies, etc. Because of his long stay in the NICU, Jake never learned to "latch on" so would not breastfeed. But I didn't give up and pumped my milk for- get this- almost a year. No visuals, please. (grin) Breastmilk is more digestable than formula so if you are so inclined and able- maybe try breast feeding (or pumping).

Both of our kids, at 8 and 10, are doing very well. Don't let what you hear about the statistics scare you- there is great hope for those with CF.

Big hugs,
Lisa G

LisaGreene · May 18, 2009

Hi Jenny,
 I just wanted to add a word of encouragement to you along with the others. We went through the same thing with our firstborn, Jacob. MI, surgery, and nearly a month in NICU. It took that long for him to have his first poop. And, boy did we celebrate!

And, you'll be celebrating too, before you know it.
 
 Hang in there. It can be a tough time. Grief is normal and a process. The important thing is to have support and take good care of yourself. The joy will come; you wait and see.
 
 Please let me know if you need someone to talk to. You can send me a private message and I'll send my phone number. It helps to know we are not alone. And you're not.
 
 On a more practical note: my docs encouraged me to breastfeed because that is the very best thing for babies including all of the antibodies, etc. Because of his long stay in the NICU, Jake never learned to "latch on" so would not breastfeed. But I didn't give up and pumped my milk for- get this- almost a year. No visuals, please. (grin) Breastmilk is more digestable than formula so if you are so inclined and able- maybe try breast feeding (or pumping).
 
 Both of our kids, at 8 and 10, are doing very well. Don't let what you hear about the statistics scare you- there is great hope for those with CF.
 
 Big hugs,
 Lisa G

New to CF-need advice!

Mommy2Zeke

Guest

Mommy2Zeke

Guest

Mommy2Zeke

Guest

Mommy2Zeke

Guest

Mommy2Zeke

Guest

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member