New to CF-need advice!

[ojaiomama]

Hi Jenny...
I frequent this site often, but have not ever participated in the forum. Your post got me. I have a three year old daughter with CF, who was also born with MI. She had surgery at three days old, and then it took another two and a half weeks for her to pass her first stool. It seemed like FOREVER! After she passed her first stool she was able to begin eating, and that is when they started her on enzymes. She was in the NICU for a month, until she gained a sufficient amount of weight. He probably needs to heal some before his intestines begin to function properly. It is so hard to leave your newborn at the hospital, I remember this well. Hang in there and take it one day at a time. Please keep us updated, and if you have more questions ask away....
Holly.

 

[ojaiomama]

Hi Jenny...
I frequent this site often, but have not ever participated in the forum. Your post got me. I have a three year old daughter with CF, who was also born with MI. She had surgery at three days old, and then it took another two and a half weeks for her to pass her first stool. It seemed like FOREVER! After she passed her first stool she was able to begin eating, and that is when they started her on enzymes. She was in the NICU for a month, until she gained a sufficient amount of weight. He probably needs to heal some before his intestines begin to function properly. It is so hard to leave your newborn at the hospital, I remember this well. Hang in there and take it one day at a time. Please keep us updated, and if you have more questions ask away....
Holly.

 

[ojaiomama]

Hi Jenny...
I frequent this site often, but have not ever participated in the forum. Your post got me. I have a three year old daughter with CF, who was also born with MI. She had surgery at three days old, and then it took another two and a half weeks for her to pass her first stool. It seemed like FOREVER! After she passed her first stool she was able to begin eating, and that is when they started her on enzymes. She was in the NICU for a month, until she gained a sufficient amount of weight. He probably needs to heal some before his intestines begin to function properly. It is so hard to leave your newborn at the hospital, I remember this well. Hang in there and take it one day at a time. Please keep us updated, and if you have more questions ask away....
Holly.

 

[ojaiomama]

Hi Jenny...
I frequent this site often, but have not ever participated in the forum. Your post got me. I have a three year old daughter with CF, who was also born with MI. She had surgery at three days old, and then it took another two and a half weeks for her to pass her first stool. It seemed like FOREVER! After she passed her first stool she was able to begin eating, and that is when they started her on enzymes. She was in the NICU for a month, until she gained a sufficient amount of weight. He probably needs to heal some before his intestines begin to function properly. It is so hard to leave your newborn at the hospital, I remember this well. Hang in there and take it one day at a time. Please keep us updated, and if you have more questions ask away....
Holly.

 

[ojaiomama]

Hi Jenny...
<br />I frequent this site often, but have not ever participated in the forum. Your post got me. I have a three year old daughter with CF, who was also born with MI. She had surgery at three days old, and then it took another two and a half weeks for her to pass her first stool. It seemed like FOREVER! After she passed her first stool she was able to begin eating, and that is when they started her on enzymes. She was in the NICU for a month, until she gained a sufficient amount of weight. He probably needs to heal some before his intestines begin to function properly. It is so hard to leave your newborn at the hospital, I remember this well. Hang in there and take it one day at a time. Please keep us updated, and if you have more questions ask away....
<br />Holly.

 

[Ratatosk]

I don't recall DS being able to start formula until he passed his first stool. Then we started gradually, first with pedialyte, then just a teeny tiny amount of formula -- maybe 10-20 ml. We were warned his tummy needed to heal due to the complexity of his obstruction/surgery.

He did start formula after 7 days and he probably could've done home shortly after that; however, he developed a couple of infections common to the NICU and needed to be put on IV antibiotics a couple times -- so he was there for 4 weeks and at the local hospital for 2 more.

 

[Ratatosk]

I don't recall DS being able to start formula until he passed his first stool. Then we started gradually, first with pedialyte, then just a teeny tiny amount of formula -- maybe 10-20 ml. We were warned his tummy needed to heal due to the complexity of his obstruction/surgery.

He did start formula after 7 days and he probably could've done home shortly after that; however, he developed a couple of infections common to the NICU and needed to be put on IV antibiotics a couple times -- so he was there for 4 weeks and at the local hospital for 2 more.

 

[Ratatosk]

I don't recall DS being able to start formula until he passed his first stool. Then we started gradually, first with pedialyte, then just a teeny tiny amount of formula -- maybe 10-20 ml. We were warned his tummy needed to heal due to the complexity of his obstruction/surgery.

He did start formula after 7 days and he probably could've done home shortly after that; however, he developed a couple of infections common to the NICU and needed to be put on IV antibiotics a couple times -- so he was there for 4 weeks and at the local hospital for 2 more.

 

[Ratatosk]

I don't recall DS being able to start formula until he passed his first stool. Then we started gradually, first with pedialyte, then just a teeny tiny amount of formula -- maybe 10-20 ml. We were warned his tummy needed to heal due to the complexity of his obstruction/surgery.

He did start formula after 7 days and he probably could've done home shortly after that; however, he developed a couple of infections common to the NICU and needed to be put on IV antibiotics a couple times -- so he was there for 4 weeks and at the local hospital for 2 more.

 

[Ratatosk]

I don't recall DS being able to start formula until he passed his first stool. Then we started gradually, first with pedialyte, then just a teeny tiny amount of formula -- maybe 10-20 ml. We were warned his tummy needed to heal due to the complexity of his obstruction/surgery.
<br />
<br />He did start formula after 7 days and he probably could've done home shortly after that; however, he developed a couple of infections common to the NICU and needed to be put on IV antibiotics a couple times -- so he was there for 4 weeks and at the local hospital for 2 more.

 

[Stacia]

Hi Jenny,

Just wanted to share our story not to scare you or anything. Stacia was born 9 weeks early with MI. She had surgery at five hours old. They took ten inches of her bowel out and put the oclostomy in. She had that for four months and got a terrible infection from her central line. They then had to hook her bowel up early and it didn't work. We ended up blocked again. They then had to go back in and get a few more inches taken out. We then waited quite a while for the first poop. It did finally happen. While we were waiting they would feed her and let her keep it in her stomach for an hour they they would suck it back out of her because they didn't want it to make stool. But it all eventually worked out just took us over six months to get straightened up. If you have any questions would be glad to help you out if I can.
Susan

 

[Stacia]

Hi Jenny,

Just wanted to share our story not to scare you or anything. Stacia was born 9 weeks early with MI. She had surgery at five hours old. They took ten inches of her bowel out and put the oclostomy in. She had that for four months and got a terrible infection from her central line. They then had to hook her bowel up early and it didn't work. We ended up blocked again. They then had to go back in and get a few more inches taken out. We then waited quite a while for the first poop. It did finally happen. While we were waiting they would feed her and let her keep it in her stomach for an hour they they would suck it back out of her because they didn't want it to make stool. But it all eventually worked out just took us over six months to get straightened up. If you have any questions would be glad to help you out if I can.
Susan

 

[Stacia]

Hi Jenny,

Just wanted to share our story not to scare you or anything. Stacia was born 9 weeks early with MI. She had surgery at five hours old. They took ten inches of her bowel out and put the oclostomy in. She had that for four months and got a terrible infection from her central line. They then had to hook her bowel up early and it didn't work. We ended up blocked again. They then had to go back in and get a few more inches taken out. We then waited quite a while for the first poop. It did finally happen. While we were waiting they would feed her and let her keep it in her stomach for an hour they they would suck it back out of her because they didn't want it to make stool. But it all eventually worked out just took us over six months to get straightened up. If you have any questions would be glad to help you out if I can.
Susan

 

[Stacia]

Hi Jenny,

Just wanted to share our story not to scare you or anything. Stacia was born 9 weeks early with MI. She had surgery at five hours old. They took ten inches of her bowel out and put the oclostomy in. She had that for four months and got a terrible infection from her central line. They then had to hook her bowel up early and it didn't work. We ended up blocked again. They then had to go back in and get a few more inches taken out. We then waited quite a while for the first poop. It did finally happen. While we were waiting they would feed her and let her keep it in her stomach for an hour they they would suck it back out of her because they didn't want it to make stool. But it all eventually worked out just took us over six months to get straightened up. If you have any questions would be glad to help you out if I can.
Susan

 

[Stacia]

Hi Jenny,
<br />
<br />Just wanted to share our story not to scare you or anything. Stacia was born 9 weeks early with MI. She had surgery at five hours old. They took ten inches of her bowel out and put the oclostomy in. She had that for four months and got a terrible infection from her central line. They then had to hook her bowel up early and it didn't work. We ended up blocked again. They then had to go back in and get a few more inches taken out. We then waited quite a while for the first poop. It did finally happen. While we were waiting they would feed her and let her keep it in her stomach for an hour they they would suck it back out of her because they didn't want it to make stool. But it all eventually worked out just took us over six months to get straightened up. If you have any questions would be glad to help you out if I can.
<br />Susan

 

[jenstem]

Susan,
Thanks for sharing your story with me. I am someone that really needs lots of info, so I appreciate it. I know that everyone is different, but sitting here in the hospital and not know what comes next and if that does not work then what or if it does work then what. My son did not have much of his bowel out when they did the surgery, just a really small section. After starting to feed again, he got blocked again. They did another radiation enema yesterday-still a plug today. They will do regular enemas today with another radiation enema scheduled for tomorrow. Then we will see if we can start feedings again. It is so frustrating! Whenever I ask "then what" type questions all I get is "we don't know yet". I know they don't have a crystal ball, but I hate not knowing. Tomorrow is our two week mark in the hospital trying to get him cleared out. I am so tired of being here. I can't wait to take him home and take over his care!!

Sorry to vent. Thanks again!
Jenny

 

[jenstem]

Susan,
Thanks for sharing your story with me. I am someone that really needs lots of info, so I appreciate it. I know that everyone is different, but sitting here in the hospital and not know what comes next and if that does not work then what or if it does work then what. My son did not have much of his bowel out when they did the surgery, just a really small section. After starting to feed again, he got blocked again. They did another radiation enema yesterday-still a plug today. They will do regular enemas today with another radiation enema scheduled for tomorrow. Then we will see if we can start feedings again. It is so frustrating! Whenever I ask "then what" type questions all I get is "we don't know yet". I know they don't have a crystal ball, but I hate not knowing. Tomorrow is our two week mark in the hospital trying to get him cleared out. I am so tired of being here. I can't wait to take him home and take over his care!!

Sorry to vent. Thanks again!
Jenny

 

[jenstem]

Susan,
Thanks for sharing your story with me. I am someone that really needs lots of info, so I appreciate it. I know that everyone is different, but sitting here in the hospital and not know what comes next and if that does not work then what or if it does work then what. My son did not have much of his bowel out when they did the surgery, just a really small section. After starting to feed again, he got blocked again. They did another radiation enema yesterday-still a plug today. They will do regular enemas today with another radiation enema scheduled for tomorrow. Then we will see if we can start feedings again. It is so frustrating! Whenever I ask "then what" type questions all I get is "we don't know yet". I know they don't have a crystal ball, but I hate not knowing. Tomorrow is our two week mark in the hospital trying to get him cleared out. I am so tired of being here. I can't wait to take him home and take over his care!!

Sorry to vent. Thanks again!
Jenny

 

[jenstem]

Susan,
Thanks for sharing your story with me. I am someone that really needs lots of info, so I appreciate it. I know that everyone is different, but sitting here in the hospital and not know what comes next and if that does not work then what or if it does work then what. My son did not have much of his bowel out when they did the surgery, just a really small section. After starting to feed again, he got blocked again. They did another radiation enema yesterday-still a plug today. They will do regular enemas today with another radiation enema scheduled for tomorrow. Then we will see if we can start feedings again. It is so frustrating! Whenever I ask "then what" type questions all I get is "we don't know yet". I know they don't have a crystal ball, but I hate not knowing. Tomorrow is our two week mark in the hospital trying to get him cleared out. I am so tired of being here. I can't wait to take him home and take over his care!!

Sorry to vent. Thanks again!
Jenny

 

[jenstem]

Susan,
<br />Thanks for sharing your story with me. I am someone that really needs lots of info, so I appreciate it. I know that everyone is different, but sitting here in the hospital and not know what comes next and if that does not work then what or if it does work then what. My son did not have much of his bowel out when they did the surgery, just a really small section. After starting to feed again, he got blocked again. They did another radiation enema yesterday-still a plug today. They will do regular enemas today with another radiation enema scheduled for tomorrow. Then we will see if we can start feedings again. It is so frustrating! Whenever I ask "then what" type questions all I get is "we don't know yet". I know they don't have a crystal ball, but I hate not knowing. Tomorrow is our two week mark in the hospital trying to get him cleared out. I am so tired of being here. I can't wait to take him home and take over his care!!
<br />
<br />Sorry to vent. Thanks again!
<br />Jenny