New mom with 5 month old daughter w/cf

[Rebjane]

Hi there,

My daughter is almost 4 with CF. She was born with a meconium ileus requiring surgery to fix her bowel obstruction. She had a second surgery at 5 months for another bowel obstruction from adhesions. I worried and worried about my daughter, her health , her future, and at times still do.

She is growing and gaining weight, I think she in the 75% height and about the same for weight, pretty good for a CF'er with severe mutations as well. She has had respiratory exacerbations but with the agressive treatment she's pulled through.

She is happy and fun and VERY outgoing. She has friends , goes to ballet class, nursery school, playdates, etc. We work hard to keep my daughter healthy and it shows.

With all her treaatments, enzymes, vitamins, nebs, VEST therapy and CF clinic appointments, we keep on top of her health , so much comes into play with CF, not just the mutations your child has. There are environmental factors, social, economic, quality of Cf clinic/CF doctor.

Focus on the fact that so much research is being done that your little baby will have the advantage of taking when/if she needs it. Enjoy your little baby.

 

[Ratatosk]

DS was diagnosed shortly after he was born. Lifeflighted 250 miles away for surgery because the pediatric surgeon in town was on vacation and no one else felt comfortable repairing the bowel obstruction. Spend 4 weeks in the NICU at a hospital with an accreditted CF facility. So while DS was recovering, the RTs and staff taught us how to do CPT, administer meds.... It was still overwhelming. The shock of the diagnosis. All the what ifs. After a normal pregnancy, we expected to take out baby home, maybe deal with an ear infection once in awhile. Not this!

It all becomes routine. Second nature in terms of the CPT and meds. We still worry about what ifs -- what the future holds, what if he gets sick... Today DS is a busy toddler. He goes to preschool, swimming lessons. Yesterday I swear he brought home most of the sand from the school playground in his shoes. He's all boy!

 

[Ratatosk]

DS was diagnosed shortly after he was born. Lifeflighted 250 miles away for surgery because the pediatric surgeon in town was on vacation and no one else felt comfortable repairing the bowel obstruction. Spend 4 weeks in the NICU at a hospital with an accreditted CF facility. So while DS was recovering, the RTs and staff taught us how to do CPT, administer meds.... It was still overwhelming. The shock of the diagnosis. All the what ifs. After a normal pregnancy, we expected to take out baby home, maybe deal with an ear infection once in awhile. Not this!

It all becomes routine. Second nature in terms of the CPT and meds. We still worry about what ifs -- what the future holds, what if he gets sick... Today DS is a busy toddler. He goes to preschool, swimming lessons. Yesterday I swear he brought home most of the sand from the school playground in his shoes. He's all boy!

 

[Ratatosk]

DS was diagnosed shortly after he was born. Lifeflighted 250 miles away for surgery because the pediatric surgeon in town was on vacation and no one else felt comfortable repairing the bowel obstruction. Spend 4 weeks in the NICU at a hospital with an accreditted CF facility. So while DS was recovering, the RTs and staff taught us how to do CPT, administer meds.... It was still overwhelming. The shock of the diagnosis. All the what ifs. After a normal pregnancy, we expected to take out baby home, maybe deal with an ear infection once in awhile. Not this!

It all becomes routine. Second nature in terms of the CPT and meds. We still worry about what ifs -- what the future holds, what if he gets sick... Today DS is a busy toddler. He goes to preschool, swimming lessons. Yesterday I swear he brought home most of the sand from the school playground in his shoes. He's all boy!

 

[Mommafirst]

Hi Keira's Mom!!

I know your despair, your fear, your tears -- we really all do!! My daughter is now 10 months old, but was also born with Meconium Illeus (MI). We were lucky that she didn't require surgery. My daughter's MI was the only reason we tested for CF and we were constantly reassured by docs that they were very doubtful that she had CF. They were wrong. At 5 months we discovered that she does have CF. She is pancreatic sufficient though, even though she had the MI. She's doing really well, hitting all her milestones. She's had a tough time kicking a cough so far this winter/fall, so we are hoping this doesn't mean she'll be having more lung issues. But I just wanted you to know that what happens in those first few diffficult months might not be any prediction to where your daughter's CF is progressing. Every patient follows a slightly different course.

I've been on this ride just a little longer than you. I don't have any earth shattering pieces of advice. I wish I did, but I still get overwhelmed, and sad, and CF seems to be in every third sentence of my day. I am also very hopeful for the future.

Welcome to the site. I'm sure you will find all the wonderful people here as supportive, and crazy, and truly good as I have!

 

[Mommafirst]

Hi Keira's Mom!!

I know your despair, your fear, your tears -- we really all do!! My daughter is now 10 months old, but was also born with Meconium Illeus (MI). We were lucky that she didn't require surgery. My daughter's MI was the only reason we tested for CF and we were constantly reassured by docs that they were very doubtful that she had CF. They were wrong. At 5 months we discovered that she does have CF. She is pancreatic sufficient though, even though she had the MI. She's doing really well, hitting all her milestones. She's had a tough time kicking a cough so far this winter/fall, so we are hoping this doesn't mean she'll be having more lung issues. But I just wanted you to know that what happens in those first few diffficult months might not be any prediction to where your daughter's CF is progressing. Every patient follows a slightly different course.

I've been on this ride just a little longer than you. I don't have any earth shattering pieces of advice. I wish I did, but I still get overwhelmed, and sad, and CF seems to be in every third sentence of my day. I am also very hopeful for the future.

Welcome to the site. I'm sure you will find all the wonderful people here as supportive, and crazy, and truly good as I have!

 

[Mommafirst]

Hi Keira's Mom!!

I know your despair, your fear, your tears -- we really all do!! My daughter is now 10 months old, but was also born with Meconium Illeus (MI). We were lucky that she didn't require surgery. My daughter's MI was the only reason we tested for CF and we were constantly reassured by docs that they were very doubtful that she had CF. They were wrong. At 5 months we discovered that she does have CF. She is pancreatic sufficient though, even though she had the MI. She's doing really well, hitting all her milestones. She's had a tough time kicking a cough so far this winter/fall, so we are hoping this doesn't mean she'll be having more lung issues. But I just wanted you to know that what happens in those first few diffficult months might not be any prediction to where your daughter's CF is progressing. Every patient follows a slightly different course.

I've been on this ride just a little longer than you. I don't have any earth shattering pieces of advice. I wish I did, but I still get overwhelmed, and sad, and CF seems to be in every third sentence of my day. I am also very hopeful for the future.

Welcome to the site. I'm sure you will find all the wonderful people here as supportive, and crazy, and truly good as I have!

 

[Ratatosk]

One thing I regret during DS's first year was that I worried, worried so much that he'd get sick, get another bowel obstruction (he had reflux and was a horrible eater) and end up in the hospital again was that I didn't just sit back and try to ENJOY his infancy.

We do have home movies of stuffing him into his halloween chili pepper costume, opening Xmas packages from his auntie & uncle -- but I wish I would've spend more time enjoying him. I was terrified. Felt so scared and alone that if I relaxed, I'd break into a million pieces. That if I relaxed, something bad would happen.

So enjoy you little one! Just kick back and watch her play. Remember, she's a normal little girl, who just needs a few extra things to keep her happy and healthy.

 

[Ratatosk]

One thing I regret during DS's first year was that I worried, worried so much that he'd get sick, get another bowel obstruction (he had reflux and was a horrible eater) and end up in the hospital again was that I didn't just sit back and try to ENJOY his infancy.

We do have home movies of stuffing him into his halloween chili pepper costume, opening Xmas packages from his auntie & uncle -- but I wish I would've spend more time enjoying him. I was terrified. Felt so scared and alone that if I relaxed, I'd break into a million pieces. That if I relaxed, something bad would happen.

So enjoy you little one! Just kick back and watch her play. Remember, she's a normal little girl, who just needs a few extra things to keep her happy and healthy.

 

[Ratatosk]

One thing I regret during DS's first year was that I worried, worried so much that he'd get sick, get another bowel obstruction (he had reflux and was a horrible eater) and end up in the hospital again was that I didn't just sit back and try to ENJOY his infancy.

We do have home movies of stuffing him into his halloween chili pepper costume, opening Xmas packages from his auntie & uncle -- but I wish I would've spend more time enjoying him. I was terrified. Felt so scared and alone that if I relaxed, I'd break into a million pieces. That if I relaxed, something bad would happen.

So enjoy you little one! Just kick back and watch her play. Remember, she's a normal little girl, who just needs a few extra things to keep her happy and healthy.

 

[LouLou]

Welcome. I won't talk too much here because I know you are wanting to hear from Mom/Dad's in your situation. I do want to mention that severity of cf is ultimately lung involvement. Rarely do patients die from digestive issues although it will always be important for you to keep both digestive and lung in mind to keep the lungs healthy and happy. As we all know, if we are underweight it makes it that much harder to spring back from any sort of infection. This is cf or not! Keep the weight up and practice good lung clearance everyday and you will be doing everything you can to keep her lungs strong and ultimately live a long, healthy life. This is what I did and here I am 28 working full time and pregnant with my first child! Take care and stick around <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LouLou]

Welcome. I won't talk too much here because I know you are wanting to hear from Mom/Dad's in your situation. I do want to mention that severity of cf is ultimately lung involvement. Rarely do patients die from digestive issues although it will always be important for you to keep both digestive and lung in mind to keep the lungs healthy and happy. As we all know, if we are underweight it makes it that much harder to spring back from any sort of infection. This is cf or not! Keep the weight up and practice good lung clearance everyday and you will be doing everything you can to keep her lungs strong and ultimately live a long, healthy life. This is what I did and here I am 28 working full time and pregnant with my first child! Take care and stick around <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LouLou]

Welcome. I won't talk too much here because I know you are wanting to hear from Mom/Dad's in your situation. I do want to mention that severity of cf is ultimately lung involvement. Rarely do patients die from digestive issues although it will always be important for you to keep both digestive and lung in mind to keep the lungs healthy and happy. As we all know, if we are underweight it makes it that much harder to spring back from any sort of infection. This is cf or not! Keep the weight up and practice good lung clearance everyday and you will be doing everything you can to keep her lungs strong and ultimately live a long, healthy life. This is what I did and here I am 28 working full time and pregnant with my first child! Take care and stick around <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[johnsmum]

hi, my son is ten months old and diagnosed at two weeks old because he was showing signs as soon as he was born. i know exactly what u mean when u say you are trying to keep your sanity my son has been in the hospital staying three times since he was born and its breaking my heart sometimes i just cry and cry. i've broke down in the middle of a supermarket and everything. i know nothing i can say will make it better but my thoughts are with u.<img src="i/expressions/rose.gif" border="0">

 

[johnsmum]

hi, my son is ten months old and diagnosed at two weeks old because he was showing signs as soon as he was born. i know exactly what u mean when u say you are trying to keep your sanity my son has been in the hospital staying three times since he was born and its breaking my heart sometimes i just cry and cry. i've broke down in the middle of a supermarket and everything. i know nothing i can say will make it better but my thoughts are with u.<img src="i/expressions/rose.gif" border="0">

 

[johnsmum]

hi, my son is ten months old and diagnosed at two weeks old because he was showing signs as soon as he was born. i know exactly what u mean when u say you are trying to keep your sanity my son has been in the hospital staying three times since he was born and its breaking my heart sometimes i just cry and cry. i've broke down in the middle of a supermarket and everything. i know nothing i can say will make it better but my thoughts are with u.<img src="i/expressions/rose.gif" border="0">

 

[Keirasmom]

Wow! I am happy and thankful for all the resposes I have received. I haven't met any other parents in my situation. I have been trying to enjoy having my little one. She smiles and makes my whole day. I have only had her home for a little over 2 months. We spent about 3 months in the Hospital in SLC. I live in MT and it was a long ways from home. Her CF doc says she is just under the 50% for w & h. She has developed a cough and it has me really worried. We wake her at night to give her CPT.
I feel guilty because I chose to go back to work and put her in a daycare, the bonus to the daycare is it is in the facility I manage so I see her ofter. I wonder if I should quit and stay at home with her. There are just so many things that go through my head. I suppose a lot of other moms/dads do the same.
I am keeping my chin up..... with a lot of hope!
Rebecca

 

[Keirasmom]

Wow! I am happy and thankful for all the resposes I have received. I haven't met any other parents in my situation. I have been trying to enjoy having my little one. She smiles and makes my whole day. I have only had her home for a little over 2 months. We spent about 3 months in the Hospital in SLC. I live in MT and it was a long ways from home. Her CF doc says she is just under the 50% for w & h. She has developed a cough and it has me really worried. We wake her at night to give her CPT.
I feel guilty because I chose to go back to work and put her in a daycare, the bonus to the daycare is it is in the facility I manage so I see her ofter. I wonder if I should quit and stay at home with her. There are just so many things that go through my head. I suppose a lot of other moms/dads do the same.
I am keeping my chin up..... with a lot of hope!
Rebecca

 

[Keirasmom]

Wow! I am happy and thankful for all the resposes I have received. I haven't met any other parents in my situation. I have been trying to enjoy having my little one. She smiles and makes my whole day. I have only had her home for a little over 2 months. We spent about 3 months in the Hospital in SLC. I live in MT and it was a long ways from home. Her CF doc says she is just under the 50% for w & h. She has developed a cough and it has me really worried. We wake her at night to give her CPT.
I feel guilty because I chose to go back to work and put her in a daycare, the bonus to the daycare is it is in the facility I manage so I see her ofter. I wonder if I should quit and stay at home with her. There are just so many things that go through my head. I suppose a lot of other moms/dads do the same.
I am keeping my chin up..... with a lot of hope!
Rebecca

 

[Ratatosk]

My mind was racing when DS was diagnosed with what ifs, what should I do? Do we need to get rid of the dog? Do I need to quit my job?....

DS has been in daycare/preschool since he was 3 months old. We thought long and hard about what we should do after his diagnosis. Visited with his CF doctor. Eventually he will be going to school and interacting with other kids, being exposed to germs. Despite being in a center, his class is quite small and he loves going.