newly diagnosed

[melany]

hi everyone, my name is melany. i am a 19 year old mother of a 4
and a half month old baby girl, Sarena, diagnosed with CF one
month after birth. CF had never shown up in either my family
nor her fathers family before, so the diagnosis was a big surprise
to all of us. because this is my first child, i only know what it
is like to have a child with this disease. i do not treat her as if
she were sick, and neither does anyone in my family. we still love
her all the same and we are thankful that we were blessed with such
a beautiful baby girl.<br>
<br>
she sees doctors that specialize in CF monthly to make sure her
medications are working properly and to make sure her weight gain
is consistent. i thank god for these wonderful people for helping
me and her get through all of this.<br>
<br>
when sarena was diagnosed it was difficult for her father to cope
with a new baby, nevermind a baby who has CF and has more needs
than a healthy baby . because of this we were unable to stay
together and he rarely ever sees sarena.<br>
<br>
at times it is difficult to get used to having a baby especially
because she  has a disease that i couldnt prevent or cure, and
because she has CF her father and i were not able to stay
together or have the family we wanted . but my life is
dedicated to my sweet sarena and i thought it would be nice to
speak with other people who either have CF or whose child/children
have CF. our outlook on things are very positive and we are hoping
that one day there will be a cure for CF. but until then its just
one step at a time.<br>
<br>
so please if anyone has any advice with coping or just want to talk
about anything i am always interested and would like to educate
myself on CF as much as i can.<br>
<br>
sincerely Melany mother of 4 1/2 month old sarena

 

[Momtana]

hi, Melany, There are a lot of parents on this site whose babies are young like Sarena with a CF diagnosis -

 

[JennifersHope]

Hi Welcome to this website...

I am sure you will find a ton of information here. I bet you are still trying to get used to the routines and stuff... I am sure more moms will see your post as time goes on and post to you, but in the mean time if you have any questions please feel free to ask.. Pretty much everyone here is willing to help you with any thing.

This website really is a close knit group of ppl who are amazing at giving support. Many moms on here have been or are in your shoes right now....

I am glad to see you have a positive outlook. I really feel like you have great reason to... I am 33 with CF and when I was born the life span for a CFer was very young.. and since I have been alive it has gone up tremendously..... I believe it is going to keep going up till they find a cure.. Not everyone agrees with me, but that is how I feel.

Welcome Again,

Jennifer
33 w CF

 

[anonymous]

hi jennifer i actually have some questions i would like to ask seem as though it sounds like you have had CF pretty much all your life. first when were you diagnosed? also do you have any children w/ or w/out CF? what were some of the struggles you have dealt with ? what are bad days like? what can i do to help prevent sarena from getting sick? now that you are 33, how has CF affected your body? if any of these questions are too personal i apologize and would not be offended if you choose not to answer them. all iknow is what doctors tell me about CF and it would really help me get the whole picture if i actually knew more facts from people who have had CF there whole life. i know each case with each person is different but it would help me be a little more prepared for when sarena does get sick and when sarena does get older. thankyou so much for responding i really appreciate it and i hope every is going well for you.

sincerely melany and sarena

 

[Mommafirst]

Hi Melany,<br>
<br>
I'm one of those moms that knows a lot about what you are going
through.  My daughter is 7 months and was diagnosed at 5
months.  Other than a meconium plug at birth, she is doing
great and we are hopeful that she will continue to stay healthy for
a long long time!<br>
<br>
How did they come to diagnose Sarena?  Was she born having
problems or was it a newborn screening?  How is she doing so
far?<br>
<br>
There is a lot to be learned on this site.  feel free to ask
questions, but sometimes I find that just reading posts is a good
way to learn.  There are many many adults with CF here and I
find their stories to both inspire and scare me at the same time.
 You won't find too much candy coating here, but that doesn't
mean you won't be able to find a reason to keep the hope alive
either.  There is a lot to be hopeful for!!<br>
<br>
Welcome to a place you never thought you'd wind up, I'm sure you'll
find a great deal of support and kindness here.

 

[melany]

hi heather thank you for responding ( there is an anonymous listed
that was me i wasnt logged in) we actually knew the possibility of
sarena having cystic fibrosis when i was 4 months pregnant. she had
what they call ecogenic bowel ( not sure if thats spelled
correctly) there were other possibilities of what this
meant and CF was one of them. when i was 30 weeks pregnant i
got the CF screening done and i tested positive for a carrier. when
sarena was born she had meconium plugs she was 5 lbs 1 oz ( 3 weeks
early). we went through alot with sarena though. at first when she
was hospitalized for the meconium plugs (they used salt water
enemas to help her pass them) she developed an infection from her
iv which kept her in the hospital for an extra 10 days for
antibiotic treatments. then they sent her home with us at 4 lbs 14
oz telling us that they couldnt do the sweat test until she was at
least 6 lbs. after 2 weeks of being home she went to her
pediatrician and she had put on no weight so we went to a different
hospital and at 5lbs 5oz they did her sweat test and after a long 4
hour wait it came back positive for CF. sarena was again
hospitalized because her enzymes were not working but it turned out
that she was actually allergic to milk so they switched her formula
to a soy.  today at 4 1/2 months sarena weighs 11lbs. with the
right meds and right treatment she is doing better than ever. her
development is right on track and the other day she discovered her
voice and hasnt stopped talking and laughing since. i love my
daughter with all my heart.  and like u said this site is not
candy coated whatsoever.  i get so scared sometimes that she
will get sick, i wont let anyone babysit her and i would never send
her to a daycare. reading some of the things that people say on
this site like when they say that when they get sick they feel like
they are going to die scares me to death.<br>
<br>
<br>
thankyou so much for responding i hope all goes well with you and
all of your children. god bless them and please keep in touch and
let me know how everything is going with your little one<br>
<br>
melany and sarena

 

[anonymous]

hi melany, my name is nikki. i'm 18 years old and i have cf.so i know what you and your family are going through. when my dad found out that my mom was having me he did the same thing. i haven't heard from him at all. hopefully her dad wont be like that. for me having cf can be very emotional. there are so many crewl people out there that like to make fun of us for being to skinny. that is the one thing i hate about cf. i miss so much school. i am supposed to graduate this year so. hopefully i get to. but i sure sarena be grow up just fine. they have so many new meds out and treatments. i use this thing called a vest. i know she's might be too little for it. it's this thing that you put on and it vibrates your chest. my mom use to pat my back with her hands and once i got older it started to hurt up front. cause i was growing. so we talked to the doctor and her told me about the flutter. it's a little tube like thing that you blow into.both the vest and the flutter work very well. but she will still be able to do fun things like cheerleading. another bad thing about cf for me was the docs said i could never play a sport. because i would lose so may cal. but i do cheerleading so i stay pretty active. one thing you might want to do is make sure she is never around ciggrette smoke. smoke for cf kids is very bad. well if you have any questions you can always email me. my email is. iloveyou527nm@hotmail.com. i hope you daughter and you have the best of luck with everything. and god bless.

love always,
nikki

 

[folione]

I'm a father of a 3 year old boy w/CF. I'm sorry to hear that the father flaked-out on you and Sarena because he's going to really miss out. CF does not change any of the good joyful experiences of being a parent - it just adds some extra things you and the child have to do. Sure, it can be scary sometimes and make you feel shafted sometimes but the good stuff definitely outweighs the bad stuff (which, really, is how it goes for everybody CF or no CF).

I know what you mean about being worried about her catching bugs; my spouse quit work and stayed home so our boy would not have to go to daycare. But there are plenty of people who will tell you that a cold is still just a cold and kids are going to get lots of them so you should not be overly worried about plain old colds (or stomach bugs either). And while it's certainly better to be well and not taking extra medicines, the medicines are effective - so don't panic when Sarena gets a cold or bug; just call the CF doctor and ask them what they want you to do.

It sounded in one of your questions like you were asking "when" people got CF. CF is a genetic disease, which means everybody with CF has had it since conception - it just takes longer for some to get diagnosed than others. Sarena is very fortunate to have been diagnosed at birth because it means she is starting out from day-1 doing the things she will need to be as healthy as possible.

 

[Momtana]

I like this story about the unexpected in becoming a parent: <a target=_blank class=ftalternatingbarlinklarge href="http://www.our-kids.org/Archives/Holland.html
">http://www.our-kids.org/Archives/Holland.html
</a>It's called "Welcome to Holland"

 

[scarbrough]

Montana,

I love the "Holland" story..it really is the truth..bittersweet...I wouldn't trade what I have with either of my children for anything...I plan to send this to my family & friends..Thanks!!!

 

[amber682]

I'm not sure if its the pms or what, but that made me cry!

 

[Mommafirst]

Someone gave me the Welcome to Holland story the day after our
diagnosis -- it was so helpful to articulate the way we feel.
 Thanks for posting it!!

 

[anonymous]

I have many questions. My neice just found out she could possibly be having a baby with cf. I see you just gave birth to one child with it and also have two who are carriers. This is new to our family and we don't know anything about this. I have read alot of things but i feel you could explain alot more to me. If you could please contact me at Deborahm441@comcast.net Thank You Debbie

 

[anonymous]

Debbie, you have come to a very good place for support and information.

 

[Mommafirst]

Debbie,<br>
<br>
I tried to e-mail you but it came back as undeliverable.  I'd
be happy to answer any questions you have.  You can PM me on
this site and I'll give you my e-mail.<br>
<br>

 

[anonymous]

Ypu mention that your child is 3 yr old---can you tell me how you give him his enzyes--my granddaugther is almost 3--we started out opening the capsule and putting into her food--she has figured that out and will now test everything, but tongue or sticking her finger in it and if she feels the granulars she will not eat anything. Any suggestions?

 

[anonymous]

Ypu mention that your child is 3 yr old---can you tell me how you give him his enzyes--my granddaugther is almost 3--we started out opening the capsule and putting into her food--she has figured that out and will now test everything, but tongue or sticking her finger in it and if she feels the granulars she will not eat anything. Any suggestions?

 

[anonymous]

Ypu mention that your child is 3 yr old---can you tell me how you give him his enzyes--my granddaugther is almost 3--we started out opening the capsule and putting into her food--she has figured that out and will now test everything, but tongue or sticking her finger in it and if she feels the granulars she will not eat anything. Any suggestions?

 

[ktsmom]

Responding to the Q about giving enzymes.<br>
<br>
There was a whole topic on this maybe a few weeks ago; you might
look for it.<br>
<br>
My take on it is: this is not negotiable with you granddaughter.
 Either she takes the enzymes or she doesn't get to eat.
 Sounds mean I know, but compliance with enzymes will be the
least of your worries if you have to start other treatments as
well, depending on her condition and symptoms.<br>
<br>
Make it non-confrontational but firm; we simply open the capsule(s)
up based on the dosage recommended by our doctor.  We sprinkle
the microbeads on top of a spoonful of applesauce (there are a TON
of different flavors available); our three-year old DD swallows,
and then we carry on with the meal or snack.  We don't try to
hide it or trick her or anything.  She adopted quite quickly
and now her teachers at school can also do it without any battles.
 In a pinch one time I sprinkled them on a spoonful of ketchup
in the drive through at McDonald's, lol!<br>
<br>
I don't mean to sound like a jerk or anything.  Just take this
head on now.  I really wish you the best of luck with
this.<br>
<br>
Dana

 

[ktsmom]

Responding to the Q about giving enzymes.<br>
<br>
There was a whole topic on this maybe a few weeks ago; you might
look for it.<br>
<br>
My take on it is: this is not negotiable with you granddaughter.
 Either she takes the enzymes or she doesn't get to eat.
 Sounds mean I know, but compliance with enzymes will be the
least of your worries if you have to start other treatments as
well, depending on her condition and symptoms.<br>
<br>
Make it non-confrontational but firm; we simply open the capsule(s)
up based on the dosage recommended by our doctor.  We sprinkle
the microbeads on top of a spoonful of applesauce (there are a TON
of different flavors available); our three-year old DD swallows,
and then we carry on with the meal or snack.  We don't try to
hide it or trick her or anything.  She adopted quite quickly
and now her teachers at school can also do it without any battles.
 In a pinch one time I sprinkled them on a spoonful of ketchup
in the drive through at McDonald's, lol!<br>
<br>
I don't mean to sound like a jerk or anything.  Just take this
head on now.  I really wish you the best of luck with
this.<br>
<br>
Dana