Hello, I am new to the site, and I just found out yesterday that my 10 day old baby has cf. And I guess that I just have lots of questions. It seems to me that he's pretty sick, but I don't even want to say that. He isn't eating at all as much as he should, and when he does eat he throws up. Another thing is - he sleeps ALL day. I know that newborns sleep a lot, but this is all the time. We have an appointment at Childrens Hospital on Monday morning, but I can't stop thinking about my poor little boy.
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Hello
- Thread starter beckyB
- Start date
I am sorry to hear that your son has cf and there are so many questions you must have. You have come to the right place for support. Reading through past posts will help and certainly post any question you have. There are many here who will be able to answer your questions through their experiences. You are not alone.
I hope the doctor can relieve some of your fears after your appointment on Monday. There are so many good treatments for cf nowadays. Your son will do well especially since you have the advantage of knowing he has it at such a young age. I'm sure soon enough once he is examined and proper diet and nutrition is followed he and you will feel so much better.
I am an old timer with cf. I am 47 years old, married 25 years and have 3 children. Life can be a little difficult at times but it certainly is grand.
Enjoy your little one and give him a hug from me.
Please let us know how Connor is doing after his appointment. I will keep you both in my prayers.<img src="i/expressions/heart.gif" border="0">
I hope the doctor can relieve some of your fears after your appointment on Monday. There are so many good treatments for cf nowadays. Your son will do well especially since you have the advantage of knowing he has it at such a young age. I'm sure soon enough once he is examined and proper diet and nutrition is followed he and you will feel so much better.
I am an old timer with cf. I am 47 years old, married 25 years and have 3 children. Life can be a little difficult at times but it certainly is grand.
Enjoy your little one and give him a hug from me.
Please let us know how Connor is doing after his appointment. I will keep you both in my prayers.<img src="i/expressions/heart.gif" border="0">
Hi Becky,
I'm so sorry about your son's diagnosis, it is a terrible shock for you. It is so hard to find information and support. This site will help you with lots of information from good people who have gone or are going through the same things.
Do you have other children?
Which Children's Hospital are you going to? My boys are seen at Boston's Childrens (which is a wonderful place). You will no doubt be overwhelmed with information, but you will get good care for Connor and advice about how to care for him so he stays healthy.
Please send all you questions to the forum, there are so many new moms just like you.
Stay strong, but let people help you through this. I'll be thinking of you. Please let us know how it goes.
I'm so sorry about your son's diagnosis, it is a terrible shock for you. It is so hard to find information and support. This site will help you with lots of information from good people who have gone or are going through the same things.
Do you have other children?
Which Children's Hospital are you going to? My boys are seen at Boston's Childrens (which is a wonderful place). You will no doubt be overwhelmed with information, but you will get good care for Connor and advice about how to care for him so he stays healthy.
Please send all you questions to the forum, there are so many new moms just like you.
Stay strong, but let people help you through this. I'll be thinking of you. Please let us know how it goes.
Thank you so much for caring, it really means A LOT to us right now. It is really hard to absorb all of this information, but I know deep down that we'll all be okay!
I do have another child, she is 2 1/2, her name is Kaylin and she does not have cf. She is a very smart and busy girl, but just a wonderful big sister.
We are going to the Children's Hospital in Milwaukee. I know that monday will be a very emotional day for me, but it can't come soon enough. I just want to be able to know what the future holds for all of us.
I do have another child, she is 2 1/2, her name is Kaylin and she does not have cf. She is a very smart and busy girl, but just a wonderful big sister.
We are going to the Children's Hospital in Milwaukee. I know that monday will be a very emotional day for me, but it can't come soon enough. I just want to be able to know what the future holds for all of us.
Becky,
This is an incredibly supportive and nurturing group. They have been very helpful in helping me cope with my child's diagnosis. I am in the process of gathering information for a research project on CF and prenatal diagnosis. If I find anything that I think might help, I'll send it your way.
You might want to check out my post from last night about the research project. It is a few posts below yours with a REALLY LONG title. Some folks have already responded.
I am here if you need me. I'm so sorry your son and your family are having to go through this.
Emily
This is an incredibly supportive and nurturing group. They have been very helpful in helping me cope with my child's diagnosis. I am in the process of gathering information for a research project on CF and prenatal diagnosis. If I find anything that I think might help, I'll send it your way.
You might want to check out my post from last night about the research project. It is a few posts below yours with a REALLY LONG title. Some folks have already responded.
I am here if you need me. I'm so sorry your son and your family are having to go through this.
Emily
kayleesgrandma
New member
Hi Becky, you'll really find support on this site, and hope. The amount of info passed along is incredible and so helpful. Hearing from people like Janet gives me so much to hope for--for kaylee and for others. It's great that you found out so soon--we didn't find out for a year. We could have done so much more for kaylee in terms of nutrition and weight gain if we had known sooner. We'll all be here for you--there's someone on all the time.
Welcome, welcome! Let me suggest that you get some type of notebook or log so you can start writing things down. There will be a lot of info to take in & as your child gets older & might need meds/change of routine etc this log will be helpful in remembering things. The idea is to write down what you are told & along the way write down ?? or concerns & then the answers that will go with those. Good Luck & we are here for support, info & answer from experience!
Becky, I am sure you are scared right now but you are actually very lucky to have found out so soon about your sons diagnosis. He will get proper care immediately. As soon as he is treated for his current bug he will gain his appetite and be awake much more.
I am sure you will find much support here. I cant even imagine how long the weekend has seemed to you. My thoughts and prayers are with you and your family.
Karenb
I am sure you will find much support here. I cant even imagine how long the weekend has seemed to you. My thoughts and prayers are with you and your family.
Karenb
Hi BeckyB, I also have a baby with CF and I know what you're going through. This site has been a godsend to help my husband and I through this time in our lives. We found out about our daughter having CF through newborn testing, it came as a complete shock to us. We've been very fortunate that so far she hasn't shown any symptoms (except for a little cough), but theres no guarantee that she'll stay this way. There are so many wonderful people on this site that have answered my questions and offered support. This is definitely the right place to be.
Our thoughts and prayers are with you and your little boy, and good luck at your appt. Keep us updated!
Our thoughts and prayers are with you and your little boy, and good luck at your appt. Keep us updated!
I just read your post and I know you will find comfort and caring on this website along with answers. I was suprised when you said you were going to Children's Hospital in Milwaukee. My son went there for 19 years and then went on to Froedert Hospital (right next door) What a small world! You are in my thoughts and I am always here if you need to talk.
I am not signed on because I am at work, ready to leave.
momofjosh
I am not signed on because I am at work, ready to leave.
momofjosh
I'm always sad to see newcomers to the group but glad that another baby with CF has a resourceful mom taking care of him.
Just one thing to say about your "not eating, throwing up, sleeping" comment: My son with CF had pretty severe reflux as a newborn and his formula would just sort of run out of him whenever we laid him down after he ate. We pretty much held him for a year (only a slight exageration) so he could sleep in dry clothes. The digestion problems plus reflux can make for a pretty unpleasant eating experience for the little guy - but once the CF doctors get him on the right combination of medicines and food I'll betcha you'll see a change. (though it still take a bit of time for everything to start settling in to place).
Hang in there
Just one thing to say about your "not eating, throwing up, sleeping" comment: My son with CF had pretty severe reflux as a newborn and his formula would just sort of run out of him whenever we laid him down after he ate. We pretty much held him for a year (only a slight exageration) so he could sleep in dry clothes. The digestion problems plus reflux can make for a pretty unpleasant eating experience for the little guy - but once the CF doctors get him on the right combination of medicines and food I'll betcha you'll see a change. (though it still take a bit of time for everything to start settling in to place).
Hang in there
Hi becky -
I posted to your other thread, too, but since I found this one, I thought I'd reiterate - I'm in your area, we go to Children's in Milwaukee, too. We have an older daughter, like you, too. Emily's reflux was really bad for a while, its so hard. Things are better right now.
Is Connor at home or in the hospital?
You've been in my thoughts all day. I remember all too vividly what it was like those first weeks. If there is anything I can do - please, let me know.
I posted to your other thread, too, but since I found this one, I thought I'd reiterate - I'm in your area, we go to Children's in Milwaukee, too. We have an older daughter, like you, too. Emily's reflux was really bad for a while, its so hard. Things are better right now.
Is Connor at home or in the hospital?
You've been in my thoughts all day. I remember all too vividly what it was like those first weeks. If there is anything I can do - please, let me know.
S
skh
Guest
Hi Becky and welcome to the site. You couldn't have picked a better place to find support, information and friends going through the same thing you are.
cinderellasmom
New member
Hi, beckyb. I am a new member, as of a few minutes ago, and my child is 5 years old with CF. She was diagnosed at two months, 2 days old, after many, many doctor, and hospital visits, and even one 7 day admission to a hospital that claimed to be a CF center, without a diagnosis. The doctors continued to diagnos her with reflux and send her home. She had the malabsorption part of CF, and we were told she had a mild case, and only had to digestive enzymes because of the malabsorption. She was hospitalized again at 3 1/2 months, (my first day back to work...I teach), because the enzymes that were prescribed to her caused her to have ulcers in her mouth. That, I am pleased to tell you was the last time we saw any hospital room for her, until May 28. The doctor who tended to her said that was pretty remarkable for her not to be hospitalized more than that. (She had pneumonia in her right lung.) She stayed for 8 days, and had a "tune-up"...her first ever...while she was there. She does everything a normal kid does, goes to preschool, will start kindergarten in the fall, runs, jumps, plays, gets in trouble, and tells everyone that her friend's name is "spiderman"...(still haven't figured that one out yet)...I would say meet as many people as you can that have CF, talk to them about what it's like...and if there are CF support groups in your area, join them. I remember being sad, and hurt, and angry for about the first year, but after that, I learned that the most important thing we can do as a parent of a child with CF is to be there for them, and help them live as normal of a life as possible. I still teach school, and my husband works, our child will attend a public school this fall. I want her to do everything that other kids do.
I pray that you will find peace.
Rebecca, mom to Hannah 5 w/CF
I pray that you will find peace.
Rebecca, mom to Hannah 5 w/CF
hi becky
I am also new to this site. But I find the people on this site help with anything that you ask. Don`t think that any question is silly because any question i have asked I have always received an answer. There are so many caring people on here and I find them a wealth of information. My son is nearly 9 months old and we have had our fair share of problems since he has been born. One thing I will say though is try not to be sad or angry. Take one day at a time or one minute if u have to. I know what it`s like to have a baby that throws up as well (never done so much washing). Enjoy your beautiful boy and good luck to your family. Will be thinking of you
Donna mum to Benjamin 9 Months
I am also new to this site. But I find the people on this site help with anything that you ask. Don`t think that any question is silly because any question i have asked I have always received an answer. There are so many caring people on here and I find them a wealth of information. My son is nearly 9 months old and we have had our fair share of problems since he has been born. One thing I will say though is try not to be sad or angry. Take one day at a time or one minute if u have to. I know what it`s like to have a baby that throws up as well (never done so much washing). Enjoy your beautiful boy and good luck to your family. Will be thinking of you
Donna mum to Benjamin 9 Months