New, Diagnosed at 6 days

M

mneville

Guest
Congrats on your little girl! Our Aidan, now 4 with CF, was diagnosed through newborn screen at 8 days old. He struggled with weight in the beginning but is now huge! I was a fanatic about the first winter with Aidan. He was born in mid September so flu season was just around the bend. We did not take him to publc places at all. We visited people's houses but only a select few held him after washing their hands. We washed our hands all the time. He stayed VERY healthy his first year as a result. His biggest issue is his sinuses which started at a year old. But every CFer is different. Best of luck!

Megan, mom to Aidan 4 with CF and Gavin 1 no CF
 
M

mneville

Guest
Congrats on your little girl! Our Aidan, now 4 with CF, was diagnosed through newborn screen at 8 days old. He struggled with weight in the beginning but is now huge! I was a fanatic about the first winter with Aidan. He was born in mid September so flu season was just around the bend. We did not take him to publc places at all. We visited people's houses but only a select few held him after washing their hands. We washed our hands all the time. He stayed VERY healthy his first year as a result. His biggest issue is his sinuses which started at a year old. But every CFer is different. Best of luck!

Megan, mom to Aidan 4 with CF and Gavin 1 no CF
 
M

mneville

Guest
Congrats on your little girl! Our Aidan, now 4 with CF, was diagnosed through newborn screen at 8 days old. He struggled with weight in the beginning but is now huge! I was a fanatic about the first winter with Aidan. He was born in mid September so flu season was just around the bend. We did not take him to publc places at all. We visited people's houses but only a select few held him after washing their hands. We washed our hands all the time. He stayed VERY healthy his first year as a result. His biggest issue is his sinuses which started at a year old. But every CFer is different. Best of luck!

Megan, mom to Aidan 4 with CF and Gavin 1 no CF
 
M

mneville

Guest
Congrats on your little girl! Our Aidan, now 4 with CF, was diagnosed through newborn screen at 8 days old. He struggled with weight in the beginning but is now huge! I was a fanatic about the first winter with Aidan. He was born in mid September so flu season was just around the bend. We did not take him to publc places at all. We visited people's houses but only a select few held him after washing their hands. We washed our hands all the time. He stayed VERY healthy his first year as a result. His biggest issue is his sinuses which started at a year old. But every CFer is different. Best of luck!

Megan, mom to Aidan 4 with CF and Gavin 1 no CF
 
M

mneville

Guest
Congrats on your little girl! Our Aidan, now 4 with CF, was diagnosed through newborn screen at 8 days old. He struggled with weight in the beginning but is now huge! I was a fanatic about the first winter with Aidan. He was born in mid September so flu season was just around the bend. We did not take him to publc places at all. We visited people's houses but only a select few held him after washing their hands. We washed our hands all the time. He stayed VERY healthy his first year as a result. His biggest issue is his sinuses which started at a year old. But every CFer is different. Best of luck!
<br />
<br />Megan, mom to Aidan 4 with CF and Gavin 1 no CF
 
A

AKJen

Guest
Your daughter sounds much like my son... He is 10 weeks old, weighed 7lb 3oz at birth, same pancreatic insufficiency, etc, I could go on. The only difference is we didn't know until he was about a month old, after his newborn screening came back as a red flag. He is now about 11 pounds and gaining steadily, so your advance awareness really helped in her case! I don't have any real advice as of yet, just wanted you to know you have a CF "twin" out there <img src="i/expressions/face-icon-small-smile.gif" border="0">
Take care and best of luck!
 
A

AKJen

Guest
Your daughter sounds much like my son... He is 10 weeks old, weighed 7lb 3oz at birth, same pancreatic insufficiency, etc, I could go on. The only difference is we didn't know until he was about a month old, after his newborn screening came back as a red flag. He is now about 11 pounds and gaining steadily, so your advance awareness really helped in her case! I don't have any real advice as of yet, just wanted you to know you have a CF "twin" out there <img src="i/expressions/face-icon-small-smile.gif" border="0">
Take care and best of luck!
 
A

AKJen

Guest
Your daughter sounds much like my son... He is 10 weeks old, weighed 7lb 3oz at birth, same pancreatic insufficiency, etc, I could go on. The only difference is we didn't know until he was about a month old, after his newborn screening came back as a red flag. He is now about 11 pounds and gaining steadily, so your advance awareness really helped in her case! I don't have any real advice as of yet, just wanted you to know you have a CF "twin" out there <img src="i/expressions/face-icon-small-smile.gif" border="0">
Take care and best of luck!
 
A

AKJen

Guest
Your daughter sounds much like my son... He is 10 weeks old, weighed 7lb 3oz at birth, same pancreatic insufficiency, etc, I could go on. The only difference is we didn't know until he was about a month old, after his newborn screening came back as a red flag. He is now about 11 pounds and gaining steadily, so your advance awareness really helped in her case! I don't have any real advice as of yet, just wanted you to know you have a CF "twin" out there <img src="i/expressions/face-icon-small-smile.gif" border="0">
Take care and best of luck!
 
A

AKJen

Guest
Your daughter sounds much like my son... He is 10 weeks old, weighed 7lb 3oz at birth, same pancreatic insufficiency, etc, I could go on. The only difference is we didn't know until he was about a month old, after his newborn screening came back as a red flag. He is now about 11 pounds and gaining steadily, so your advance awareness really helped in her case! I don't have any real advice as of yet, just wanted you to know you have a CF "twin" out there <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Take care and best of luck!
 
H

hopefulmommy

New member
Welcome! Another RN mommy here!

Her weight gain sounds great to me!!! DS was in the 80th percentile for a good while, and we're still breastfeeding at 14 months - keep up the good work! She'll benefit so much from that! Being a nurse is going to help you be a great advocate for your daughter.

As for the germ thing, gosh, we can only protect them so much. In the last few months, I've really learned that I need to let go a little. (once they start crawling and putting EVERYTHING into their mouth, I was stressing SO much). There are germs out there, everywhere, and you can't keep all of them away from you CF child. The best thing we do is hand washing and not going around sick people.
 
H

hopefulmommy

New member
Welcome! Another RN mommy here!

Her weight gain sounds great to me!!! DS was in the 80th percentile for a good while, and we're still breastfeeding at 14 months - keep up the good work! She'll benefit so much from that! Being a nurse is going to help you be a great advocate for your daughter.

As for the germ thing, gosh, we can only protect them so much. In the last few months, I've really learned that I need to let go a little. (once they start crawling and putting EVERYTHING into their mouth, I was stressing SO much). There are germs out there, everywhere, and you can't keep all of them away from you CF child. The best thing we do is hand washing and not going around sick people.
 
H

hopefulmommy

New member
Welcome! Another RN mommy here!

Her weight gain sounds great to me!!! DS was in the 80th percentile for a good while, and we're still breastfeeding at 14 months - keep up the good work! She'll benefit so much from that! Being a nurse is going to help you be a great advocate for your daughter.

As for the germ thing, gosh, we can only protect them so much. In the last few months, I've really learned that I need to let go a little. (once they start crawling and putting EVERYTHING into their mouth, I was stressing SO much). There are germs out there, everywhere, and you can't keep all of them away from you CF child. The best thing we do is hand washing and not going around sick people.
 
H

hopefulmommy

New member
Welcome! Another RN mommy here!

Her weight gain sounds great to me!!! DS was in the 80th percentile for a good while, and we're still breastfeeding at 14 months - keep up the good work! She'll benefit so much from that! Being a nurse is going to help you be a great advocate for your daughter.

As for the germ thing, gosh, we can only protect them so much. In the last few months, I've really learned that I need to let go a little. (once they start crawling and putting EVERYTHING into their mouth, I was stressing SO much). There are germs out there, everywhere, and you can't keep all of them away from you CF child. The best thing we do is hand washing and not going around sick people.
 
H

hopefulmommy

New member
Welcome! Another RN mommy here!
<br />
<br />Her weight gain sounds great to me!!! DS was in the 80th percentile for a good while, and we're still breastfeeding at 14 months - keep up the good work! She'll benefit so much from that! Being a nurse is going to help you be a great advocate for your daughter.
<br />
<br />As for the germ thing, gosh, we can only protect them so much. In the last few months, I've really learned that I need to let go a little. (once they start crawling and putting EVERYTHING into their mouth, I was stressing SO much). There are germs out there, everywhere, and you can't keep all of them away from you CF child. The best thing we do is hand washing and not going around sick people.
 
W

websterhome

New member
So we have a CF twin out there! What a small world it is! Jen, has your little man had an issue with liquidy &/or oily stools? Lucy's have improved a bit, but still have both of those qualities. A part of me wonders about changing the type of enzyme she's on? Next month at the CF Clinic we'll be seeing a GI doc, so that will be helpful. I feel badly when I hear her tummy have really loud rumbles... that cannot feel good! Is it like that lifelong?
 
W

websterhome

New member
So we have a CF twin out there! What a small world it is! Jen, has your little man had an issue with liquidy &/or oily stools? Lucy's have improved a bit, but still have both of those qualities. A part of me wonders about changing the type of enzyme she's on? Next month at the CF Clinic we'll be seeing a GI doc, so that will be helpful. I feel badly when I hear her tummy have really loud rumbles... that cannot feel good! Is it like that lifelong?
 
W

websterhome

New member
So we have a CF twin out there! What a small world it is! Jen, has your little man had an issue with liquidy &/or oily stools? Lucy's have improved a bit, but still have both of those qualities. A part of me wonders about changing the type of enzyme she's on? Next month at the CF Clinic we'll be seeing a GI doc, so that will be helpful. I feel badly when I hear her tummy have really loud rumbles... that cannot feel good! Is it like that lifelong?
 
W

websterhome

New member
So we have a CF twin out there! What a small world it is! Jen, has your little man had an issue with liquidy &/or oily stools? Lucy's have improved a bit, but still have both of those qualities. A part of me wonders about changing the type of enzyme she's on? Next month at the CF Clinic we'll be seeing a GI doc, so that will be helpful. I feel badly when I hear her tummy have really loud rumbles... that cannot feel good! Is it like that lifelong?
 
W

websterhome

New member
So we have a CF twin out there! What a small world it is! Jen, has your little man had an issue with liquidy &/or oily stools? Lucy's have improved a bit, but still have both of those qualities. A part of me wonders about changing the type of enzyme she's on? Next month at the CF Clinic we'll be seeing a GI doc, so that will be helpful. I feel badly when I hear her tummy have really loud rumbles... that cannot feel good! Is it like that lifelong?
 
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