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newly diagnosed at 5months old.
- Thread starter Faith4Liliana
- Start date
Faith4Liliana
New member
The meds are getting a little easier now that she is not throwing up.
Before when we would give her the abdek vits and the prevacid she would
throw it right up. Since she has been on the creon I think she has throw
up once and that was because she was gagging on banana's. She is doing
better with all the baby foods. I was not ready to start her on solids
but all the dr we saw said it was a good idea to try to get some weight
on her. They also wanted me to try two bottles a day of pregestimil.
Which we have been trying but she does not like it at all. I've tried
mixing it half and half with breast milk but she will not take it. The
dr's warned us it tasted bad. They dr's said they would give her a few
weeks with out it to see if she was gaining weight on her own. If she
wasn't gaining weight then she would have to be readmitted to the hospital or totally only on pregestimil. So I have been feeding her every min of the day. OK
well not really but I let her eat as long as she wants and as much as
she wants. Before I could do that because she would throw up everything.
But things are so much better in that dept. We can go to her reg. Dr
anytime to get a weight check. We go back to CF dr on Oct 31. Thanks
again.
Angela - sorry to hear that your daugther is no longer with us. May my thoughts and prays be with you. And thank you for the upbeat reply.
Jen
Before when we would give her the abdek vits and the prevacid she would
throw it right up. Since she has been on the creon I think she has throw
up once and that was because she was gagging on banana's. She is doing
better with all the baby foods. I was not ready to start her on solids
but all the dr we saw said it was a good idea to try to get some weight
on her. They also wanted me to try two bottles a day of pregestimil.
Which we have been trying but she does not like it at all. I've tried
mixing it half and half with breast milk but she will not take it. The
dr's warned us it tasted bad. They dr's said they would give her a few
weeks with out it to see if she was gaining weight on her own. If she
wasn't gaining weight then she would have to be readmitted to the hospital or totally only on pregestimil. So I have been feeding her every min of the day. OK
well not really but I let her eat as long as she wants and as much as
she wants. Before I could do that because she would throw up everything.
But things are so much better in that dept. We can go to her reg. Dr
anytime to get a weight check. We go back to CF dr on Oct 31. Thanks
again.
Angela - sorry to hear that your daugther is no longer with us. May my thoughts and prays be with you. And thank you for the upbeat reply.
Jen
Faith4Liliana
New member
The meds are getting a little easier now that she is not throwing up.
Before when we would give her the abdek vits and the prevacid she would
throw it right up. Since she has been on the creon I think she has throw
up once and that was because she was gagging on banana's. She is doing
better with all the baby foods. I was not ready to start her on solids
but all the dr we saw said it was a good idea to try to get some weight
on her. They also wanted me to try two bottles a day of pregestimil.
Which we have been trying but she does not like it at all. I've tried
mixing it half and half with breast milk but she will not take it. The
dr's warned us it tasted bad. They dr's said they would give her a few
weeks with out it to see if she was gaining weight on her own. If she
wasn't gaining weight then she would have to be readmitted to the hospital or totally only on pregestimil. So I have been feeding her every min of the day. OK
well not really but I let her eat as long as she wants and as much as
she wants. Before I could do that because she would throw up everything.
But things are so much better in that dept. We can go to her reg. Dr
anytime to get a weight check. We go back to CF dr on Oct 31. Thanks
again.
Angela - sorry to hear that your daugther is no longer with us. May my thoughts and prays be with you. And thank you for the upbeat reply.
Jen
Before when we would give her the abdek vits and the prevacid she would
throw it right up. Since she has been on the creon I think she has throw
up once and that was because she was gagging on banana's. She is doing
better with all the baby foods. I was not ready to start her on solids
but all the dr we saw said it was a good idea to try to get some weight
on her. They also wanted me to try two bottles a day of pregestimil.
Which we have been trying but she does not like it at all. I've tried
mixing it half and half with breast milk but she will not take it. The
dr's warned us it tasted bad. They dr's said they would give her a few
weeks with out it to see if she was gaining weight on her own. If she
wasn't gaining weight then she would have to be readmitted to the hospital or totally only on pregestimil. So I have been feeding her every min of the day. OK
well not really but I let her eat as long as she wants and as much as
she wants. Before I could do that because she would throw up everything.
But things are so much better in that dept. We can go to her reg. Dr
anytime to get a weight check. We go back to CF dr on Oct 31. Thanks
again.
Angela - sorry to hear that your daugther is no longer with us. May my thoughts and prays be with you. And thank you for the upbeat reply.
Jen
Faith4Liliana
New member
The meds are getting a little easier now that she is not throwing up.
Before when we would give her the abdek vits and the prevacid she would
throw it right up. Since she has been on the creon I think she has throw
up once and that was because she was gagging on banana's. She is doing
better with all the baby foods. I was not ready to start her on solids
but all the dr we saw said it was a good idea to try to get some weight
on her. They also wanted me to try two bottles a day of pregestimil.
Which we have been trying but she does not like it at all. I've tried
mixing it half and half with breast milk but she will not take it. The
dr's warned us it tasted bad. They dr's said they would give her a few
weeks with out it to see if she was gaining weight on her own. If she
wasn't gaining weight then she would have to be readmitted to the hospital or totally only on pregestimil. So I have been feeding her every min of the day. OK
well not really but I let her eat as long as she wants and as much as
she wants. Before I could do that because she would throw up everything.
But things are so much better in that dept. We can go to her reg. Dr
anytime to get a weight check. We go back to CF dr on Oct 31. Thanks
again.
Angela - sorry to hear that your daugther is no longer with us. May my thoughts and prays be with you. And thank you for the upbeat reply.
Jen
Before when we would give her the abdek vits and the prevacid she would
throw it right up. Since she has been on the creon I think she has throw
up once and that was because she was gagging on banana's. She is doing
better with all the baby foods. I was not ready to start her on solids
but all the dr we saw said it was a good idea to try to get some weight
on her. They also wanted me to try two bottles a day of pregestimil.
Which we have been trying but she does not like it at all. I've tried
mixing it half and half with breast milk but she will not take it. The
dr's warned us it tasted bad. They dr's said they would give her a few
weeks with out it to see if she was gaining weight on her own. If she
wasn't gaining weight then she would have to be readmitted to the hospital or totally only on pregestimil. So I have been feeding her every min of the day. OK
well not really but I let her eat as long as she wants and as much as
she wants. Before I could do that because she would throw up everything.
But things are so much better in that dept. We can go to her reg. Dr
anytime to get a weight check. We go back to CF dr on Oct 31. Thanks
again.
Angela - sorry to hear that your daugther is no longer with us. May my thoughts and prays be with you. And thank you for the upbeat reply.
Jen
Ugg! I hate that pregestimil! (And so did my son!)
Did you ever taste it, yuck! My son refused to eat it too, they tried to switch him to it when he was diagnosed at 4 months old. He started refusing to eat, he would eat maybe 2 oz. a bottle (he used to eat 6-8 oz. reg formula) and only about 12 oz. a day. The docs were very concerned about his weight. I talked them into letting me try the reg formula again for a few days, and I'd call them back and tell them how he was eating. They said ok and told me how to mix it to make it high calorie. I called back a few days later and he was eating over 30 oz. a day!
They had tried to tell me that he was to young to care about the taste and that he wasn't eating and spitting up because of reflux. I knew he just didn't like it, and he never spit up excessively before the pregestimil. After switching back the weight piled on (with enzymes and high cal formula he went from the 5th percentile to the 50th in a few months!) and he was taken off the reflux meds.
Anyways, sorry to go off on a tangent, I just hate when I see moms having trouble getting kids to take pregestimil after experiencing it myself! If they're on enzymes I don't see why they make them drink the pre-digested formula. Any powdered formula canbe made higher cal by adding extra scoops or breastmilk made higher cal by adding a scoop or two of powdered formula. (The docs or nutritionist would have to tell you the exact amount)
Did you ever taste it, yuck! My son refused to eat it too, they tried to switch him to it when he was diagnosed at 4 months old. He started refusing to eat, he would eat maybe 2 oz. a bottle (he used to eat 6-8 oz. reg formula) and only about 12 oz. a day. The docs were very concerned about his weight. I talked them into letting me try the reg formula again for a few days, and I'd call them back and tell them how he was eating. They said ok and told me how to mix it to make it high calorie. I called back a few days later and he was eating over 30 oz. a day!
They had tried to tell me that he was to young to care about the taste and that he wasn't eating and spitting up because of reflux. I knew he just didn't like it, and he never spit up excessively before the pregestimil. After switching back the weight piled on (with enzymes and high cal formula he went from the 5th percentile to the 50th in a few months!) and he was taken off the reflux meds.
Anyways, sorry to go off on a tangent, I just hate when I see moms having trouble getting kids to take pregestimil after experiencing it myself! If they're on enzymes I don't see why they make them drink the pre-digested formula. Any powdered formula canbe made higher cal by adding extra scoops or breastmilk made higher cal by adding a scoop or two of powdered formula. (The docs or nutritionist would have to tell you the exact amount)
Ugg! I hate that pregestimil! (And so did my son!)
Did you ever taste it, yuck! My son refused to eat it too, they tried to switch him to it when he was diagnosed at 4 months old. He started refusing to eat, he would eat maybe 2 oz. a bottle (he used to eat 6-8 oz. reg formula) and only about 12 oz. a day. The docs were very concerned about his weight. I talked them into letting me try the reg formula again for a few days, and I'd call them back and tell them how he was eating. They said ok and told me how to mix it to make it high calorie. I called back a few days later and he was eating over 30 oz. a day!
They had tried to tell me that he was to young to care about the taste and that he wasn't eating and spitting up because of reflux. I knew he just didn't like it, and he never spit up excessively before the pregestimil. After switching back the weight piled on (with enzymes and high cal formula he went from the 5th percentile to the 50th in a few months!) and he was taken off the reflux meds.
Anyways, sorry to go off on a tangent, I just hate when I see moms having trouble getting kids to take pregestimil after experiencing it myself! If they're on enzymes I don't see why they make them drink the pre-digested formula. Any powdered formula canbe made higher cal by adding extra scoops or breastmilk made higher cal by adding a scoop or two of powdered formula. (The docs or nutritionist would have to tell you the exact amount)
Did you ever taste it, yuck! My son refused to eat it too, they tried to switch him to it when he was diagnosed at 4 months old. He started refusing to eat, he would eat maybe 2 oz. a bottle (he used to eat 6-8 oz. reg formula) and only about 12 oz. a day. The docs were very concerned about his weight. I talked them into letting me try the reg formula again for a few days, and I'd call them back and tell them how he was eating. They said ok and told me how to mix it to make it high calorie. I called back a few days later and he was eating over 30 oz. a day!
They had tried to tell me that he was to young to care about the taste and that he wasn't eating and spitting up because of reflux. I knew he just didn't like it, and he never spit up excessively before the pregestimil. After switching back the weight piled on (with enzymes and high cal formula he went from the 5th percentile to the 50th in a few months!) and he was taken off the reflux meds.
Anyways, sorry to go off on a tangent, I just hate when I see moms having trouble getting kids to take pregestimil after experiencing it myself! If they're on enzymes I don't see why they make them drink the pre-digested formula. Any powdered formula canbe made higher cal by adding extra scoops or breastmilk made higher cal by adding a scoop or two of powdered formula. (The docs or nutritionist would have to tell you the exact amount)
Ugg! I hate that pregestimil! (And so did my son!)
Did you ever taste it, yuck! My son refused to eat it too, they tried to switch him to it when he was diagnosed at 4 months old. He started refusing to eat, he would eat maybe 2 oz. a bottle (he used to eat 6-8 oz. reg formula) and only about 12 oz. a day. The docs were very concerned about his weight. I talked them into letting me try the reg formula again for a few days, and I'd call them back and tell them how he was eating. They said ok and told me how to mix it to make it high calorie. I called back a few days later and he was eating over 30 oz. a day!
They had tried to tell me that he was to young to care about the taste and that he wasn't eating and spitting up because of reflux. I knew he just didn't like it, and he never spit up excessively before the pregestimil. After switching back the weight piled on (with enzymes and high cal formula he went from the 5th percentile to the 50th in a few months!) and he was taken off the reflux meds.
Anyways, sorry to go off on a tangent, I just hate when I see moms having trouble getting kids to take pregestimil after experiencing it myself! If they're on enzymes I don't see why they make them drink the pre-digested formula. Any powdered formula canbe made higher cal by adding extra scoops or breastmilk made higher cal by adding a scoop or two of powdered formula. (The docs or nutritionist would have to tell you the exact amount)
Did you ever taste it, yuck! My son refused to eat it too, they tried to switch him to it when he was diagnosed at 4 months old. He started refusing to eat, he would eat maybe 2 oz. a bottle (he used to eat 6-8 oz. reg formula) and only about 12 oz. a day. The docs were very concerned about his weight. I talked them into letting me try the reg formula again for a few days, and I'd call them back and tell them how he was eating. They said ok and told me how to mix it to make it high calorie. I called back a few days later and he was eating over 30 oz. a day!
They had tried to tell me that he was to young to care about the taste and that he wasn't eating and spitting up because of reflux. I knew he just didn't like it, and he never spit up excessively before the pregestimil. After switching back the weight piled on (with enzymes and high cal formula he went from the 5th percentile to the 50th in a few months!) and he was taken off the reflux meds.
Anyways, sorry to go off on a tangent, I just hate when I see moms having trouble getting kids to take pregestimil after experiencing it myself! If they're on enzymes I don't see why they make them drink the pre-digested formula. Any powdered formula canbe made higher cal by adding extra scoops or breastmilk made higher cal by adding a scoop or two of powdered formula. (The docs or nutritionist would have to tell you the exact amount)
Faith4Liliana
New member
I have a plm..... I wake up everyday and think my baby girl has cf. It rips my heart out. Everyday, all day long, before going to sleep at night, that is all I can think of. How can my little girl have such a bad thing. Why didn't was know we wwre carriers. Why Why Why....why is what I keep asking my self. Why is there no family history of this. Why does God have to do this? Why isn't there a cure? Why her? Why us(we will not be having any more children, can't and will not take the chance and will not put another person through this)? Why why why???
Sorry I am having a really bad day.......
Jen - mom to 5month w/cf
Sorry I am having a really bad day.......
Jen - mom to 5month w/cf
Faith4Liliana
New member
I have a plm..... I wake up everyday and think my baby girl has cf. It rips my heart out. Everyday, all day long, before going to sleep at night, that is all I can think of. How can my little girl have such a bad thing. Why didn't was know we wwre carriers. Why Why Why....why is what I keep asking my self. Why is there no family history of this. Why does God have to do this? Why isn't there a cure? Why her? Why us(we will not be having any more children, can't and will not take the chance and will not put another person through this)? Why why why???
Sorry I am having a really bad day.......
Jen - mom to 5month w/cf
Sorry I am having a really bad day.......
Jen - mom to 5month w/cf
Faith4Liliana
New member
I have a plm..... I wake up everyday and think my baby girl has cf. It rips my heart out. Everyday, all day long, before going to sleep at night, that is all I can think of. How can my little girl have such a bad thing. Why didn't was know we wwre carriers. Why Why Why....why is what I keep asking my self. Why is there no family history of this. Why does God have to do this? Why isn't there a cure? Why her? Why us(we will not be having any more children, can't and will not take the chance and will not put another person through this)? Why why why???
Sorry I am having a really bad day.......
Jen - mom to 5month w/cf
Sorry I am having a really bad day.......
Jen - mom to 5month w/cf
L
lemonstolemonade
Guest
Jen,<br>
<br>
You're certainly allowed to have bad days. This group has been a
tremendous blessing to me when I had bad days...and I've had quite
a few. I've ranted. I've raved. I've screamed and yelled on here
when I was frustrated and hurt. This is a safe place because these
folks understand and "get it." I don't know a parent on
here who hasn't asked the same questions you are asking. Why is a
biggie.<br>
<br>
CF not only alters the life of our children, but is changes our
lives as well. We uprooted our lives and moved so I could stay
home. Because I was staying home, we had to pull our toddler out of
daycare, which was the environment she needed and needs to be
in.<br>
<br>
Know that we are here for you in the good days and the bad. Please
remember to celebrate your good days with us so we can cheer with
you and know we are here for you on your rough days so we can
support and encourage you.<br>
<br>
Bless you and your family while you continue on your journey.
You're not on it alone.<br>
<br>
Anne
<br>
You're certainly allowed to have bad days. This group has been a
tremendous blessing to me when I had bad days...and I've had quite
a few. I've ranted. I've raved. I've screamed and yelled on here
when I was frustrated and hurt. This is a safe place because these
folks understand and "get it." I don't know a parent on
here who hasn't asked the same questions you are asking. Why is a
biggie.<br>
<br>
CF not only alters the life of our children, but is changes our
lives as well. We uprooted our lives and moved so I could stay
home. Because I was staying home, we had to pull our toddler out of
daycare, which was the environment she needed and needs to be
in.<br>
<br>
Know that we are here for you in the good days and the bad. Please
remember to celebrate your good days with us so we can cheer with
you and know we are here for you on your rough days so we can
support and encourage you.<br>
<br>
Bless you and your family while you continue on your journey.
You're not on it alone.<br>
<br>
Anne
L
lemonstolemonade
Guest
Jen,<br>
<br>
You're certainly allowed to have bad days. This group has been a
tremendous blessing to me when I had bad days...and I've had quite
a few. I've ranted. I've raved. I've screamed and yelled on here
when I was frustrated and hurt. This is a safe place because these
folks understand and "get it." I don't know a parent on
here who hasn't asked the same questions you are asking. Why is a
biggie.<br>
<br>
CF not only alters the life of our children, but is changes our
lives as well. We uprooted our lives and moved so I could stay
home. Because I was staying home, we had to pull our toddler out of
daycare, which was the environment she needed and needs to be
in.<br>
<br>
Know that we are here for you in the good days and the bad. Please
remember to celebrate your good days with us so we can cheer with
you and know we are here for you on your rough days so we can
support and encourage you.<br>
<br>
Bless you and your family while you continue on your journey.
You're not on it alone.<br>
<br>
Anne
<br>
You're certainly allowed to have bad days. This group has been a
tremendous blessing to me when I had bad days...and I've had quite
a few. I've ranted. I've raved. I've screamed and yelled on here
when I was frustrated and hurt. This is a safe place because these
folks understand and "get it." I don't know a parent on
here who hasn't asked the same questions you are asking. Why is a
biggie.<br>
<br>
CF not only alters the life of our children, but is changes our
lives as well. We uprooted our lives and moved so I could stay
home. Because I was staying home, we had to pull our toddler out of
daycare, which was the environment she needed and needs to be
in.<br>
<br>
Know that we are here for you in the good days and the bad. Please
remember to celebrate your good days with us so we can cheer with
you and know we are here for you on your rough days so we can
support and encourage you.<br>
<br>
Bless you and your family while you continue on your journey.
You're not on it alone.<br>
<br>
Anne
L
lemonstolemonade
Guest
Jen,<br>
<br>
You're certainly allowed to have bad days. This group has been a
tremendous blessing to me when I had bad days...and I've had quite
a few. I've ranted. I've raved. I've screamed and yelled on here
when I was frustrated and hurt. This is a safe place because these
folks understand and "get it." I don't know a parent on
here who hasn't asked the same questions you are asking. Why is a
biggie.<br>
<br>
CF not only alters the life of our children, but is changes our
lives as well. We uprooted our lives and moved so I could stay
home. Because I was staying home, we had to pull our toddler out of
daycare, which was the environment she needed and needs to be
in.<br>
<br>
Know that we are here for you in the good days and the bad. Please
remember to celebrate your good days with us so we can cheer with
you and know we are here for you on your rough days so we can
support and encourage you.<br>
<br>
Bless you and your family while you continue on your journey.
You're not on it alone.<br>
<br>
Anne
<br>
You're certainly allowed to have bad days. This group has been a
tremendous blessing to me when I had bad days...and I've had quite
a few. I've ranted. I've raved. I've screamed and yelled on here
when I was frustrated and hurt. This is a safe place because these
folks understand and "get it." I don't know a parent on
here who hasn't asked the same questions you are asking. Why is a
biggie.<br>
<br>
CF not only alters the life of our children, but is changes our
lives as well. We uprooted our lives and moved so I could stay
home. Because I was staying home, we had to pull our toddler out of
daycare, which was the environment she needed and needs to be
in.<br>
<br>
Know that we are here for you in the good days and the bad. Please
remember to celebrate your good days with us so we can cheer with
you and know we are here for you on your rough days so we can
support and encourage you.<br>
<br>
Bless you and your family while you continue on your journey.
You're not on it alone.<br>
<br>
Anne
M
mneville
Guest
Jen- Believe me, you are not the only one. When Aidan was diagnosed, i was the same way. It was all I thought about. The same exact questions you are asking yourself. Exactly the same. I cried all the time, I looked at him and cried, I did treatments and cried, I cried everytime someone else had a healthy baby. Aidan is surrounded by 15 cousins and I cried that he is the only one who has to deal with this, I cried at the thought of having no more kids....
I can only tell you this--IT DOES GET EASIER. It really does. I never thought it would but it does! Your baby will grow into a normal toddler, child, adult. We took Aidan to the best CF doctor and he told us that Aidan will be a father and grandfather with good care.
Treatments can be a pain. But that is it- a pain. There are alot of things in life that are a pain. I have decided that crying and carrying on about the injustice of CF are not helping Aidan. It would be robbing him of the only life he has. It took me almost two years to get to this point but I'm here. Aidan is an amzing child who teaches me lessons everyday. His treatments don't bother him at all-they are all he knows.
And you can have more kids free of CF. There is a procedure out there with IVF/PGD. We just went through it. I am now pregnant and if the lab did their job right, this baby should not have CF. But take your time. The whole grieving process takes time. Just please know that it gets better. You will love your child and take the best care of her. Life does not give anyone guarantees, CF or not. So enjoy each moment with your precious baby. Megan
I can only tell you this--IT DOES GET EASIER. It really does. I never thought it would but it does! Your baby will grow into a normal toddler, child, adult. We took Aidan to the best CF doctor and he told us that Aidan will be a father and grandfather with good care.
Treatments can be a pain. But that is it- a pain. There are alot of things in life that are a pain. I have decided that crying and carrying on about the injustice of CF are not helping Aidan. It would be robbing him of the only life he has. It took me almost two years to get to this point but I'm here. Aidan is an amzing child who teaches me lessons everyday. His treatments don't bother him at all-they are all he knows.
And you can have more kids free of CF. There is a procedure out there with IVF/PGD. We just went through it. I am now pregnant and if the lab did their job right, this baby should not have CF. But take your time. The whole grieving process takes time. Just please know that it gets better. You will love your child and take the best care of her. Life does not give anyone guarantees, CF or not. So enjoy each moment with your precious baby. Megan
M
mneville
Guest
Jen- Believe me, you are not the only one. When Aidan was diagnosed, i was the same way. It was all I thought about. The same exact questions you are asking yourself. Exactly the same. I cried all the time, I looked at him and cried, I did treatments and cried, I cried everytime someone else had a healthy baby. Aidan is surrounded by 15 cousins and I cried that he is the only one who has to deal with this, I cried at the thought of having no more kids....
I can only tell you this--IT DOES GET EASIER. It really does. I never thought it would but it does! Your baby will grow into a normal toddler, child, adult. We took Aidan to the best CF doctor and he told us that Aidan will be a father and grandfather with good care.
Treatments can be a pain. But that is it- a pain. There are alot of things in life that are a pain. I have decided that crying and carrying on about the injustice of CF are not helping Aidan. It would be robbing him of the only life he has. It took me almost two years to get to this point but I'm here. Aidan is an amzing child who teaches me lessons everyday. His treatments don't bother him at all-they are all he knows.
And you can have more kids free of CF. There is a procedure out there with IVF/PGD. We just went through it. I am now pregnant and if the lab did their job right, this baby should not have CF. But take your time. The whole grieving process takes time. Just please know that it gets better. You will love your child and take the best care of her. Life does not give anyone guarantees, CF or not. So enjoy each moment with your precious baby. Megan
I can only tell you this--IT DOES GET EASIER. It really does. I never thought it would but it does! Your baby will grow into a normal toddler, child, adult. We took Aidan to the best CF doctor and he told us that Aidan will be a father and grandfather with good care.
Treatments can be a pain. But that is it- a pain. There are alot of things in life that are a pain. I have decided that crying and carrying on about the injustice of CF are not helping Aidan. It would be robbing him of the only life he has. It took me almost two years to get to this point but I'm here. Aidan is an amzing child who teaches me lessons everyday. His treatments don't bother him at all-they are all he knows.
And you can have more kids free of CF. There is a procedure out there with IVF/PGD. We just went through it. I am now pregnant and if the lab did their job right, this baby should not have CF. But take your time. The whole grieving process takes time. Just please know that it gets better. You will love your child and take the best care of her. Life does not give anyone guarantees, CF or not. So enjoy each moment with your precious baby. Megan
M
mneville
Guest
Jen- Believe me, you are not the only one. When Aidan was diagnosed, i was the same way. It was all I thought about. The same exact questions you are asking yourself. Exactly the same. I cried all the time, I looked at him and cried, I did treatments and cried, I cried everytime someone else had a healthy baby. Aidan is surrounded by 15 cousins and I cried that he is the only one who has to deal with this, I cried at the thought of having no more kids....
I can only tell you this--IT DOES GET EASIER. It really does. I never thought it would but it does! Your baby will grow into a normal toddler, child, adult. We took Aidan to the best CF doctor and he told us that Aidan will be a father and grandfather with good care.
Treatments can be a pain. But that is it- a pain. There are alot of things in life that are a pain. I have decided that crying and carrying on about the injustice of CF are not helping Aidan. It would be robbing him of the only life he has. It took me almost two years to get to this point but I'm here. Aidan is an amzing child who teaches me lessons everyday. His treatments don't bother him at all-they are all he knows.
And you can have more kids free of CF. There is a procedure out there with IVF/PGD. We just went through it. I am now pregnant and if the lab did their job right, this baby should not have CF. But take your time. The whole grieving process takes time. Just please know that it gets better. You will love your child and take the best care of her. Life does not give anyone guarantees, CF or not. So enjoy each moment with your precious baby. Megan
I can only tell you this--IT DOES GET EASIER. It really does. I never thought it would but it does! Your baby will grow into a normal toddler, child, adult. We took Aidan to the best CF doctor and he told us that Aidan will be a father and grandfather with good care.
Treatments can be a pain. But that is it- a pain. There are alot of things in life that are a pain. I have decided that crying and carrying on about the injustice of CF are not helping Aidan. It would be robbing him of the only life he has. It took me almost two years to get to this point but I'm here. Aidan is an amzing child who teaches me lessons everyday. His treatments don't bother him at all-they are all he knows.
And you can have more kids free of CF. There is a procedure out there with IVF/PGD. We just went through it. I am now pregnant and if the lab did their job right, this baby should not have CF. But take your time. The whole grieving process takes time. Just please know that it gets better. You will love your child and take the best care of her. Life does not give anyone guarantees, CF or not. So enjoy each moment with your precious baby. Megan
S
scheesman
Guest
Hello Jen<br>
<br>
My name is Shawn and i'm very new to all of this. I think
about it all day and night, and our little Lily isn't even born
yet.<br>
<br>
We have 4 weeks left and Lily has a blockage.Me and my wife
(Liz) are both carriers. There is no known cf in either family.<br>
<br>
Liz is having a really hard time with this. She doesn't like taking
about it to me. I read the forums to try and get prepared for it
and get as much advice as possible. If anyone has info for me to
ask the docs please let me know.<br>
<br>
Megan did you do anything about your OB?
We are in the same boat.<br>
<br>
THANK YOU GUYS FOR EVERYTHING
<br>
My name is Shawn and i'm very new to all of this. I think
about it all day and night, and our little Lily isn't even born
yet.<br>
<br>
We have 4 weeks left and Lily has a blockage.Me and my wife
(Liz) are both carriers. There is no known cf in either family.<br>
<br>
Liz is having a really hard time with this. She doesn't like taking
about it to me. I read the forums to try and get prepared for it
and get as much advice as possible. If anyone has info for me to
ask the docs please let me know.<br>
<br>
Megan did you do anything about your OB?
We are in the same boat.<br>
<br>
THANK YOU GUYS FOR EVERYTHING
S
scheesman
Guest
Hello Jen<br>
<br>
My name is Shawn and i'm very new to all of this. I think
about it all day and night, and our little Lily isn't even born
yet.<br>
<br>
We have 4 weeks left and Lily has a blockage.Me and my wife
(Liz) are both carriers. There is no known cf in either family.<br>
<br>
Liz is having a really hard time with this. She doesn't like taking
about it to me. I read the forums to try and get prepared for it
and get as much advice as possible. If anyone has info for me to
ask the docs please let me know.<br>
<br>
Megan did you do anything about your OB?
We are in the same boat.<br>
<br>
THANK YOU GUYS FOR EVERYTHING
<br>
My name is Shawn and i'm very new to all of this. I think
about it all day and night, and our little Lily isn't even born
yet.<br>
<br>
We have 4 weeks left and Lily has a blockage.Me and my wife
(Liz) are both carriers. There is no known cf in either family.<br>
<br>
Liz is having a really hard time with this. She doesn't like taking
about it to me. I read the forums to try and get prepared for it
and get as much advice as possible. If anyone has info for me to
ask the docs please let me know.<br>
<br>
Megan did you do anything about your OB?
We are in the same boat.<br>
<br>
THANK YOU GUYS FOR EVERYTHING
S
scheesman
Guest
Hello Jen<br>
<br>
My name is Shawn and i'm very new to all of this. I think
about it all day and night, and our little Lily isn't even born
yet.<br>
<br>
We have 4 weeks left and Lily has a blockage.Me and my wife
(Liz) are both carriers. There is no known cf in either family.<br>
<br>
Liz is having a really hard time with this. She doesn't like taking
about it to me. I read the forums to try and get prepared for it
and get as much advice as possible. If anyone has info for me to
ask the docs please let me know.<br>
<br>
Megan did you do anything about your OB?
We are in the same boat.<br>
<br>
THANK YOU GUYS FOR EVERYTHING
<br>
My name is Shawn and i'm very new to all of this. I think
about it all day and night, and our little Lily isn't even born
yet.<br>
<br>
We have 4 weeks left and Lily has a blockage.Me and my wife
(Liz) are both carriers. There is no known cf in either family.<br>
<br>
Liz is having a really hard time with this. She doesn't like taking
about it to me. I read the forums to try and get prepared for it
and get as much advice as possible. If anyone has info for me to
ask the docs please let me know.<br>
<br>
Megan did you do anything about your OB?
We are in the same boat.<br>
<br>
THANK YOU GUYS FOR EVERYTHING