Ok now this is REAL

NanaOf8Girls · Jun 2, 2008

My granddaughter is 15 days old she had a blocked bowel that was found at 20 weeks and did an amino and found out that she did in fact have CF. After she was born they had to do surgery to fix her bowel which had twisted and part of it had died. She does have a bag right now but since the portion of her bowel that had to be cut was so close to her stomach she isn't getting enough nutrition. So now they have put in a temporary tube into her lower part of the bowel to help her gain weight and for her nutrition. She is able to drink breastmilk,however it is just dumping into the bag. She has a port now, thank god, so they don't have to keep sticking her. The drs have started her on nebs and i am not sure of the correct term but you use a cup looking device to breakup mucus. They are starting enezmes on tues. My question is I am really afraid now, she weighed 9lbs at birth and now she is way down from that weight. She seems to be doing ok but she is just very sleepy and not like my other grandbabies were,,,,is this do to the nutrition issue??? I don't want my daughter to know i am scared. I am the strong one in the family. But this is something i can't control and really don't know the questions to ask.....Any help would be appreciated.

NanaOf8Girls · Jun 2, 2008

My granddaughter is 15 days old she had a blocked bowel that was found at 20 weeks and did an amino and found out that she did in fact have CF. After she was born they had to do surgery to fix her bowel which had twisted and part of it had died. She does have a bag right now but since the portion of her bowel that had to be cut was so close to her stomach she isn't getting enough nutrition. So now they have put in a temporary tube into her lower part of the bowel to help her gain weight and for her nutrition. She is able to drink breastmilk,however it is just dumping into the bag. She has a port now, thank god, so they don't have to keep sticking her. The drs have started her on nebs and i am not sure of the correct term but you use a cup looking device to breakup mucus. They are starting enezmes on tues. My question is I am really afraid now, she weighed 9lbs at birth and now she is way down from that weight. She seems to be doing ok but she is just very sleepy and not like my other grandbabies were,,,,is this do to the nutrition issue??? I don't want my daughter to know i am scared. I am the strong one in the family. But this is something i can't control and really don't know the questions to ask.....Any help would be appreciated.

NanaOf8Girls · Jun 2, 2008

My granddaughter is 15 days old she had a blocked bowel that was found at 20 weeks and did an amino and found out that she did in fact have CF. After she was born they had to do surgery to fix her bowel which had twisted and part of it had died. She does have a bag right now but since the portion of her bowel that had to be cut was so close to her stomach she isn't getting enough nutrition. So now they have put in a temporary tube into her lower part of the bowel to help her gain weight and for her nutrition. She is able to drink breastmilk,however it is just dumping into the bag. She has a port now, thank god, so they don't have to keep sticking her. The drs have started her on nebs and i am not sure of the correct term but you use a cup looking device to breakup mucus. They are starting enezmes on tues. My question is I am really afraid now, she weighed 9lbs at birth and now she is way down from that weight. She seems to be doing ok but she is just very sleepy and not like my other grandbabies were,,,,is this do to the nutrition issue??? I don't want my daughter to know i am scared. I am the strong one in the family. But this is something i can't control and really don't know the questions to ask.....Any help would be appreciated.

NanaOf8Girls · Jun 2, 2008

My granddaughter is 15 days old she had a blocked bowel that was found at 20 weeks and did an amino and found out that she did in fact have CF. After she was born they had to do surgery to fix her bowel which had twisted and part of it had died. She does have a bag right now but since the portion of her bowel that had to be cut was so close to her stomach she isn't getting enough nutrition. So now they have put in a temporary tube into her lower part of the bowel to help her gain weight and for her nutrition. She is able to drink breastmilk,however it is just dumping into the bag. She has a port now, thank god, so they don't have to keep sticking her. The drs have started her on nebs and i am not sure of the correct term but you use a cup looking device to breakup mucus. They are starting enezmes on tues. My question is I am really afraid now, she weighed 9lbs at birth and now she is way down from that weight. She seems to be doing ok but she is just very sleepy and not like my other grandbabies were,,,,is this do to the nutrition issue??? I don't want my daughter to know i am scared. I am the strong one in the family. But this is something i can't control and really don't know the questions to ask.....Any help would be appreciated.

NanaOf8Girls · Jun 2, 2008

My granddaughter is 15 days old she had a blocked bowel that was found at 20 weeks and did an amino and found out that she did in fact have CF. After she was born they had to do surgery to fix her bowel which had twisted and part of it had died. She does have a bag right now but since the portion of her bowel that had to be cut was so close to her stomach she isn't getting enough nutrition. So now they have put in a temporary tube into her lower part of the bowel to help her gain weight and for her nutrition. She is able to drink breastmilk,however it is just dumping into the bag. She has a port now, thank god, so they don't have to keep sticking her. The drs have started her on nebs and i am not sure of the correct term but you use a cup looking device to breakup mucus. They are starting enezmes on tues. My question is I am really afraid now, she weighed 9lbs at birth and now she is way down from that weight. She seems to be doing ok but she is just very sleepy and not like my other grandbabies were,,,,is this do to the nutrition issue??? I don't want my daughter to know i am scared. I am the strong one in the family. But this is something i can't control and really don't know the questions to ask.....Any help would be appreciated.

Tcole · Jun 2, 2008

Hi Mom, first of all i know you are scared. Thats all normal for all of us now. Grayson is also having "Bradys" and has a fever. The dr says she has an infection. Maybe a urinary trac infect. They are taking blood and giving her antibiotics. Fever was up to 101. They did up her feedings through the bowel to her "full feedings". I am going to talk to the CF dr soon and i hope they give me good news. She is coughing pretty junky and im not sure why. Yesterday and today Grayson was very sleepy. She also tugged the pic line and now its not in place and they need to insert another one. But they cant do that until she don't show an infection. So this morning the nurses kicked me out of the room since they were going to make Grayson mad by sticking her and they needed to get a urine same through a cath. Poor baby girl. I just wish she can come home.

Tcole · Jun 2, 2008

Hi Mom, first of all i know you are scared. Thats all normal for all of us now. Grayson is also having "Bradys" and has a fever. The dr says she has an infection. Maybe a urinary trac infect. They are taking blood and giving her antibiotics. Fever was up to 101. They did up her feedings through the bowel to her "full feedings". I am going to talk to the CF dr soon and i hope they give me good news. She is coughing pretty junky and im not sure why. Yesterday and today Grayson was very sleepy. She also tugged the pic line and now its not in place and they need to insert another one. But they cant do that until she don't show an infection. So this morning the nurses kicked me out of the room since they were going to make Grayson mad by sticking her and they needed to get a urine same through a cath. Poor baby girl. I just wish she can come home.

Tcole · Jun 2, 2008

Hi Mom, first of all i know you are scared. Thats all normal for all of us now. Grayson is also having "Bradys" and has a fever. The dr says she has an infection. Maybe a urinary trac infect. They are taking blood and giving her antibiotics. Fever was up to 101. They did up her feedings through the bowel to her "full feedings". I am going to talk to the CF dr soon and i hope they give me good news. She is coughing pretty junky and im not sure why. Yesterday and today Grayson was very sleepy. She also tugged the pic line and now its not in place and they need to insert another one. But they cant do that until she don't show an infection. So this morning the nurses kicked me out of the room since they were going to make Grayson mad by sticking her and they needed to get a urine same through a cath. Poor baby girl. I just wish she can come home.

Tcole · Jun 2, 2008

Hi Mom, first of all i know you are scared. Thats all normal for all of us now. Grayson is also having "Bradys" and has a fever. The dr says she has an infection. Maybe a urinary trac infect. They are taking blood and giving her antibiotics. Fever was up to 101. They did up her feedings through the bowel to her "full feedings". I am going to talk to the CF dr soon and i hope they give me good news. She is coughing pretty junky and im not sure why. Yesterday and today Grayson was very sleepy. She also tugged the pic line and now its not in place and they need to insert another one. But they cant do that until she don't show an infection. So this morning the nurses kicked me out of the room since they were going to make Grayson mad by sticking her and they needed to get a urine same through a cath. Poor baby girl. I just wish she can come home.

Tcole · Jun 2, 2008

Hi Mom, first of all i know you are scared. Thats all normal for all of us now. Grayson is also having "Bradys" and has a fever. The dr says she has an infection. Maybe a urinary trac infect. They are taking blood and giving her antibiotics. Fever was up to 101. They did up her feedings through the bowel to her "full feedings". I am going to talk to the CF dr soon and i hope they give me good news. She is coughing pretty junky and im not sure why. Yesterday and today Grayson was very sleepy. She also tugged the pic line and now its not in place and they need to insert another one. But they cant do that until she don't show an infection. So this morning the nurses kicked me out of the room since they were going to make Grayson mad by sticking her and they needed to get a urine same through a cath. Poor baby girl. I just wish she can come home.

JORDYSMOM · Jun 2, 2008

I'm sorry you are going through this. I know it's scary. I'm glad they are starting the enzymes. That should help her get the nutrients from her food, and thus help her gain weight.

The sleepyness is common. Her little body is having to work twice as hard as your other grandbabies' did. I know it's hard, and you feel out of control here. That will get better once you get on a routine. It sounds like the hospital is getting on the ball with the treatments. The use of the little cups to break up mucus is refered to as CPT. It's great that they are starting that so early, because she will get accustomed to it, and not fight it later on. Also, the clearer the airways are kept, the better.

Come here and vent or ask questions any time you need to, and please keep us posted on your grandbaby.

Stacey

JORDYSMOM · Jun 2, 2008

I'm sorry you are going through this. I know it's scary. I'm glad they are starting the enzymes. That should help her get the nutrients from her food, and thus help her gain weight.

The sleepyness is common. Her little body is having to work twice as hard as your other grandbabies' did. I know it's hard, and you feel out of control here. That will get better once you get on a routine. It sounds like the hospital is getting on the ball with the treatments. The use of the little cups to break up mucus is refered to as CPT. It's great that they are starting that so early, because she will get accustomed to it, and not fight it later on. Also, the clearer the airways are kept, the better.

Come here and vent or ask questions any time you need to, and please keep us posted on your grandbaby.

Stacey

JORDYSMOM · Jun 2, 2008

I'm sorry you are going through this. I know it's scary. I'm glad they are starting the enzymes. That should help her get the nutrients from her food, and thus help her gain weight.

The sleepyness is common. Her little body is having to work twice as hard as your other grandbabies' did. I know it's hard, and you feel out of control here. That will get better once you get on a routine. It sounds like the hospital is getting on the ball with the treatments. The use of the little cups to break up mucus is refered to as CPT. It's great that they are starting that so early, because she will get accustomed to it, and not fight it later on. Also, the clearer the airways are kept, the better.

Come here and vent or ask questions any time you need to, and please keep us posted on your grandbaby.

Stacey

JORDYSMOM · Jun 2, 2008

I'm sorry you are going through this. I know it's scary. I'm glad they are starting the enzymes. That should help her get the nutrients from her food, and thus help her gain weight.

The sleepyness is common. Her little body is having to work twice as hard as your other grandbabies' did. I know it's hard, and you feel out of control here. That will get better once you get on a routine. It sounds like the hospital is getting on the ball with the treatments. The use of the little cups to break up mucus is refered to as CPT. It's great that they are starting that so early, because she will get accustomed to it, and not fight it later on. Also, the clearer the airways are kept, the better.

Come here and vent or ask questions any time you need to, and please keep us posted on your grandbaby.

Stacey

JORDYSMOM · Jun 2, 2008

I'm sorry you are going through this. I know it's scary. I'm glad they are starting the enzymes. That should help her get the nutrients from her food, and thus help her gain weight.
 
 The sleepyness is common. Her little body is having to work twice as hard as your other grandbabies' did. I know it's hard, and you feel out of control here. That will get better once you get on a routine. It sounds like the hospital is getting on the ball with the treatments. The use of the little cups to break up mucus is refered to as CPT. It's great that they are starting that so early, because she will get accustomed to it, and not fight it later on. Also, the clearer the airways are kept, the better.
 
 Come here and vent or ask questions any time you need to, and please keep us posted on your grandbaby.
 
 Stacey

NanaOf8Girls · Jun 2, 2008