CF Breastfeeding Site

JRPandTJP

New member
Hi everyone, it's me again. I was sitting down to work on the site a little tonight and I wanted to touch base with those I haven't heard back from via email. So far I have stories from Sharon and Paige, but I needed to know if you both were wanting to leave them as is or work on them a bit more based on the questions I sent.

Then, Melissa, Dina and Rebecca, I wanted to know if you were planning on writing a story as well? I would love to have a little more information since you all have a positive story. I think it great to share both the struggles and successes we've all had. Sheli, would you like me to use what you have written as your story or did you plan to work on something as well. Also, I would love the photo you mentioned.

I am just trying to get a sort of list together so I can keep track of who is done with their stories and wishing to be used as a reference on the site, who is still working but needs some time, and who may not wish to participate.

And here is a list questions I came up with which may spark some writing ideas. Again, forget the word limitation and just write from the heart.

I will be looking into locating some photos/art to use for the site (maybe black and white if possible) to create a beautiful site which really shows the connection between mom and baby. Again, it is up to you if you would like to share a photo or not, I just want it to feel a little like this is our memory book, a place to honor our decision and show how beautiful our babies are (were if their older now), and even a place where we express how we worked through the initial stages of diagnosis (again if you choose to go there).

Hope to here soon. Thank you all so much for helping me do this...it is very close to my heart.

___________________________________________________

General breastfeeding:

What made you wish to breastfeed your child?
Did you breastfeed your other children (if you have others)?
Did you do anything to prepare such as contacting a lactation consultant or la Leche Leage leader prior to the birth?


CF:

Did you know prior to birth that your baby had CF?
If so, how did you prepare? What kind of support or lack of support did you get from the medical staff both OBGYN/midwives or pediatric pum/GI doctors?
Did you ever have to supplement? If so, was there lactation consultant available to help with ways to do this without interrupting the breastfeeding relationship?


If not, when did you find out?
How old was your baby?
What kind of complications led you to diagnosis?
How did the medical staff look at breastfeeding once your baby was diagnosed? Were they supportive? If so, how? Did they know how to work with you if supplementation was required to boost weight? Did they have resources for you if you needed help (ie lactation consultants, pump and supplemental nurser suppliers, la leche league leaders in your area)?
If not, how and why did you continue? What measures did you take to ensure your baby was getting enough calories or growing adequately, if any? Did you seek outside help such as lactation consultants, la leche leaders, or internet support? Were you able to be honest or did you have to play it down?

Mothering:

How did your decision to breastfeed your CF baby impact your family?
Did it add to your stress or relieve it?
How did it make you feel to breastfeed a child with a CF diagnosis?
Do you feel it helped you stay close to your baby while working through the grief and challenges of understanding and integrating the diagnosis into your lives?
Did it help you to know you were giving them special immune properties only found in breast milk?
Did you notice any changes in respiratory health when they began eating solids or when they weaned? If so, what kind of changes?
What would you change if anything, in your breastfeeding experience?
Would you choose it again and why?
Do you feel it made you more aware of nutrition and the importance of food and supplements in your child's life? In other words, did it lead you to any other healthy decisions for your child or family?
Describe the weaning process and any emotions felt during that time? Was it hard to let go of the special time and why? Were you ready and how did you know? Were you concerned about health changes after weaning? If so, how did you work through it?
What role did you partner play in child care? How did you make it work?
If you were unsupported in your decision, how did this make your feel as you went through that first year?

Hope to hear soon.

Warmly,
Jody
 

cfmomma

New member
I'm sorry I haven't forwarded my story or photos yet, but I will as soon as can access the photos. They are on my husbands computer. I think what you are doing is great and I am a huge supporter of breastfeeding.
 

anonymous

New member
Hello Jody,

I would love to write up a story. Right now, I've been busy with the Great Strides walk, ours is May20. Maybe I can focus this weekend about writing(as long as everyone stays healthy)Knock on wood.

Rebecca(mom to Sammy 7 no Cf and Maggie 3 with CF)
 

anonymous

New member
Jody,

If you give me your e-mail I think i can send you the article I had in Motherwear about nursing my daughter with CF. i can also add to the article when i get a chance cause the article was written when she was about a year old and i nursed her much lnger than that.

Rebecca(mom to Sammy7 no CF and Maggie 3 with CF)
 

JRPandTJP

New member
Thank you both. This way I can just know you are planning to and I can add your email address to my folder for future follow-ups. The email will just helps me stay organized a bit. You don't even have to have anything to send just a blank one with the "CF Breastfeeding Journal" title and I'll file it for later.

Sheli, please take your time, if you need to wait until after the walk that's totally fine.

Rebecca, this is a great idea. Any links you all can gather and provide would be great. THis way we can point others to lots of great resources.

Talk to you all soon

My email is jody@meta4tech.com

Thanks
 

Allie

New member
Jody, I interviewed hannah for it, and posted it on the original thread, not sure if you saw it.
 

JRPandTJP

New member
Allie, thank you so much for Hanna's comments. I will definately figure out a way to include this very wise and humorous account. She made me feel lucky to have so much information for our little CFers these days.

Sorry, I'm a bit slow on the uptake with the connections. You were Ry's wife, Hanna's his mom, and Ahava is your and RY's daughter. right? I think I read some stuff she said on your blog...too funny...what spunk! We go against the gain quite a bit so the comment on "I'm not into the herd mentality" had me LOL!!

Oh, and I contacted an old work friend/graphic artist who just so happens to have CF. He is a double lung transplant survivor and an awesome guy...I'm waiting to hear if he will help me out wiht the graphics/photography. Weird how things come full circle. Hope he says yes...he's really good.

Jody
 

Allie

New member
Yep, you have all the connections right. I'm glad you liked Hannah's account so much, she really is a firecracker. I'm planning to eventually interview her about raising a child with Cf years ago.
 
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