Hi I'm new

[xstefani3x]

Hi everyone. I am new here. I am a mom of a 4 month old with cf. She is my first child, and she has already been through more than i or practically anyone i now has been. She had an operation the 2nd day after she was born for a meconium ileas.. stayed in teh hospital because of complications from it, and then had a second surgery when she was a little over 2 months for the same thing. She has been getting chest pt since her 5th day being born, but she is still clear. She was in the hospital for 2 months before we got to bring her home, and now being a little over 4 months she wieghs 10 and a half pounds <img src="i/expressions/face-icon-small-happy.gif" border="0">.
I've been looking for places to chat with others about this, so i hope to get to know everyone and help out with what i can.

Bless everyone
Stefani

 

[farmfamily]

Stefani,
Welcome to the club you never asked to belong to. I know the disease seems so overwhelming at first. You must be dealing with that still. My children didn't have the bowel surgies that your little one has had but my son had a rough start. He is 12 years old my daughter is 7 and then I have a healthly 15 year old. I would have never believed it when I was in your position but we live a fairly normal life all the treatments and medications and Doctor appointments just become part of it all. But you find a way to make it work and just take one day at a time.
Hang in there!

Terri

 

[anonymous]

Stephanie,
Indeed, welcome to the club you NEVER asked to join! There is an opening in the clouds and after
you've settled into life with a CF child,,,,,,,,,,,,,,,,,,,,,,,, it will be "normal" your life will not be about being
a CF parent, it will be about being a parent! I'm the mother of three the youngest with CF, diagnoised on my son's 13th birthday. He'll be 15 next month and he leads a normal life for the most part. I just remember being in a cloud of disbeliefe,,,,,,, shock........... and questions.............................. when we learned our son had CF. Relax and enjoy the every days,,,,,,,,,,,,,,,,,, this is life! Take everyday for what it is, that's the biggest thing we've learned as a family,,,,,,,,,,,,,,,,,,,, that these ARE the good time! God bless, Michelle, mother of almost 15 yr. old CF son and 2 daughter without CF.

 

[anonymous]

Hi Stefani,

You are walking in my shoes! I am ALSO a Mom to a 3.5 month old little girl with cf. She ALSO had meconium ileus at birth and had an operation her 2nd day of life and still has an ostomy bag. She was recently in the hospital with a sinus infection that would not go away and needed iv antibotics for 10 days.
We were a little prepared because i found out she had cf when i was pregnant. She is the joy of our life and all the treatments and meds really take about an hour a day total and i can do it in my sleep!!! I can't even imagine my life not doing them now.

Is your little girl on enzymes? My little one is on 1.5 Ultrase caps per feeding and weighs 12 pounds. She turns 4 months old on the 21st of this month.
If you would like to chat more please email me directly at blythe.weston@comcast.net

I look forward to chatting!

Blythe
Mom to Brinly 3.5 monthsw/cf and Birgess 2.5 w/out cf

 

[EmilysMom]

Stefani & Blythe (and others)
Just a little bright light at the end of what must seem like dark long tunnel right now. My Emily was born with Meconium Ileus also and at two days of age was transferred to a newborn intensive care unit where she had surgery at two days of age and spent awhile until she was ready to come home.
Now for the bright light...She just returned for her sophomore year of college to Northeastern University in Boston Mass., where she is on the Dean's List studying American Sign Language and hopes to go on for her Master's to teach deaf children. She will be 21 in January and her health is not too bad most of the time and your kids should do better as there are more meds these days than there were 21 years ago. Look to the future for a cure...I think it's coming! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Hi Stefani,

Sounds like your little one is doing well and gaining weight - that's always great news. Hang in there, things always even out eventually. CF has become our routine every day. My 4 year old son has cf and is doing great! Overall, he understands he needs to take his meds and treatments daily. Our cf clinic is wonderful - yours will hopefully be a support to you, as will the people on this board. Let me know if you have any questions or want to chat. Best of luck with everything and hang in there!

Carey

 

[anonymous]

HELLO, I AM NEW ON HERE TOO. I AM A MOTHER OF A 4 YR OLD WHO HAS CF. WE FOUND OUT WHEN SHE WAS 2 YR OLD BECAUSE SHE WAS SICK EVERYDAY ALMOST SINCE HER BIRTH. IT IS SO HARD SOMEDAYS ALL I DO IS CRY BUT I KNOW I HAVE TO BE STRONGE FOR HER.SHE IS ALSO MY FIRST CHILD. WE WANT TO HAVE ANOTHER CHILD SO BAD BUT WE ARE SO SCARED.I JUST WORRY IF THEY WILL MAKE EACH OTHER SICK? I HAVE ALOT QUESTIONS THAT RUN THROUGH MY MIND.IT HELPS TALKLING TO PEOPLE WHO GO THROUGH WHAT YOU DO EVERDAY.GOD BLESS HEATHER