Hi everyone,
It has been awhile since I have been on the boards, so hope everyone is doing great. I have 2 children, Julia 6 w/out CF and Ben 22 months w/CF. We had a very long and trying year last year with several hospital stays, diagnoses, RSV and just alot of worrying over getting Ben on stable ground. We are happy to report he has gone from off the charts, to the 5%, to the 30% and now to the 50% over the last 18 months! He is healthy and all boy.
One of my "passions" along the way has definately been the nutrition and feeding of our little CF guy. I had planned on breastfeeding our second child come hell or high water...little did I know both those things would come. We breastfed exclusively for the first 3 months (prior to diagnosis) while we agonized over why he wasn't growing. Many doctors felt it could be a severe food allergy so encouraged us to keep going. He developed several vitamin deficencies and eventually low protein levels landing him in hospital twice. The second time we were finally able to get enough sweat to verify CF. This is the point at which breastfeeding became extremely challenging. As everyone went into emergency mode with Ben, the nutrition staff and doctors wanted to just get me out of the picture and discouraged me from breastfeeding. Long story short --- I defied them and continued with little to no support.
This topic remains close to my heart for so many reasons. First, as I researched the net and many medical sources, I found very little information supporting formula over breastmilk for CFers. I also found so many moms whose stories spoke of wonderful results with weight gain and more importantly the many other benefits to both mom and baby which we are already aware. I wrote a detailed letter along with research I found and shared it with our CF docs. I shared with them from my heart how horrible it was to feel unsuppored in this decsion when he showed them in growth and health that it was working. I shared with them the importance of it in terms of immune system development and the anti-inflammatory properties (omega 3) and on and on....well they were very receptive and promised that Ben would remain in their minds as a case for breastfeeding success. They promised they would discuss it with the other docs and at the very least think of me as a resource for support of any other mom who wanted to continue and needed some support.
So why am I posting to all of you? I would like to create something more permanent on the internet. I would like to share Ben's story, but I would very much like to gather at least 5-10 other stories about women who have either kept on breastfeeding despite obstacles or lack of support OR those who were encouraged to breastfeed and how you were supported in that decision by the medical staff. I'd love the site to feel like a mother's journal touching on how breastfeeding may have served to soften the blow of diagnosis, kept the bond strong during tough times in the hospital or just served as a sense of comfort knowing you were giving them what you feel is best for baby. If possible, keep them between 1000-1500 words or less and if you wish to remain anonymous that is fine.
If you would like to send me your story, please email me at jody@meta4tech.com topic "CF Breastfeeding Journal". I am putting together a list of some questions/topics you could use to getting those writing juices flowing or you can obviously just let 'er rip in you own unique style. I would expect this to take a few months since I have 2 little ones and only a little time each evening to work on it. By the end of the summer I'd love to have this little site put together.
Please consider sharing your story so the next generation of CF moms can have a chance at receiving even more support for this very personal decision.
Thank you so much for reading and considering sharing your story. You all were such a big help to me this past year when I was uncertain, I would love to give back to the moms coming down the CF road.
Warmly,
Jody
It has been awhile since I have been on the boards, so hope everyone is doing great. I have 2 children, Julia 6 w/out CF and Ben 22 months w/CF. We had a very long and trying year last year with several hospital stays, diagnoses, RSV and just alot of worrying over getting Ben on stable ground. We are happy to report he has gone from off the charts, to the 5%, to the 30% and now to the 50% over the last 18 months! He is healthy and all boy.
One of my "passions" along the way has definately been the nutrition and feeding of our little CF guy. I had planned on breastfeeding our second child come hell or high water...little did I know both those things would come. We breastfed exclusively for the first 3 months (prior to diagnosis) while we agonized over why he wasn't growing. Many doctors felt it could be a severe food allergy so encouraged us to keep going. He developed several vitamin deficencies and eventually low protein levels landing him in hospital twice. The second time we were finally able to get enough sweat to verify CF. This is the point at which breastfeeding became extremely challenging. As everyone went into emergency mode with Ben, the nutrition staff and doctors wanted to just get me out of the picture and discouraged me from breastfeeding. Long story short --- I defied them and continued with little to no support.
This topic remains close to my heart for so many reasons. First, as I researched the net and many medical sources, I found very little information supporting formula over breastmilk for CFers. I also found so many moms whose stories spoke of wonderful results with weight gain and more importantly the many other benefits to both mom and baby which we are already aware. I wrote a detailed letter along with research I found and shared it with our CF docs. I shared with them from my heart how horrible it was to feel unsuppored in this decsion when he showed them in growth and health that it was working. I shared with them the importance of it in terms of immune system development and the anti-inflammatory properties (omega 3) and on and on....well they were very receptive and promised that Ben would remain in their minds as a case for breastfeeding success. They promised they would discuss it with the other docs and at the very least think of me as a resource for support of any other mom who wanted to continue and needed some support.
So why am I posting to all of you? I would like to create something more permanent on the internet. I would like to share Ben's story, but I would very much like to gather at least 5-10 other stories about women who have either kept on breastfeeding despite obstacles or lack of support OR those who were encouraged to breastfeed and how you were supported in that decision by the medical staff. I'd love the site to feel like a mother's journal touching on how breastfeeding may have served to soften the blow of diagnosis, kept the bond strong during tough times in the hospital or just served as a sense of comfort knowing you were giving them what you feel is best for baby. If possible, keep them between 1000-1500 words or less and if you wish to remain anonymous that is fine.
If you would like to send me your story, please email me at jody@meta4tech.com topic "CF Breastfeeding Journal". I am putting together a list of some questions/topics you could use to getting those writing juices flowing or you can obviously just let 'er rip in you own unique style. I would expect this to take a few months since I have 2 little ones and only a little time each evening to work on it. By the end of the summer I'd love to have this little site put together.
Please consider sharing your story so the next generation of CF moms can have a chance at receiving even more support for this very personal decision.
Thank you so much for reading and considering sharing your story. You all were such a big help to me this past year when I was uncertain, I would love to give back to the moms coming down the CF road.
Warmly,
Jody