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Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 5/19/2006 9:52 AM (GMT -7)   
Hi, 
My grand-daughter was born at the end of January and was not putting on hardly any weight .  She spent much of her first month asleep and seemed floppy.  At four weeks old she weighed 1/2 lb less than when she was born.  She was taken into hospital, dropped even further in weight until she was below 6lb,and then it was discovered that she had pneumonia.  At six weeks old she was diagnosed with cf. She is homozygous delta f508. We had no idea that any of the families were carriers.
 
We were all shocked but pleased that with the diagnosis came immediate treatment.  She now weighs 10lb 6oz at 15 weeks old. 
 
My daughter is doing physio four times a day and is administering all her medication according to instructions and yet the baby has been in and out of hospital with different infections.  Today she has bronchiolitis. 
 
I have sinusitis.  My doctor has told me that it is safe to see Leah because there is no infection and I have had a sputum test which was clear, but I worry about it.  Before I go to see her I shower, brush teeth, get changed into clean clothes and generally do anything I can think of to keep her safe. 
 
Am I being obsessive? ( I admit it is a tendency of mine) or are these wise precautions? confused   

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 5/19/2006 2:04 PM (GMT -7)   
Hi Sea 2 (love this name) Welcome to HW CF Room!.

Grandma! your doing a great job. You can never be clean enough. Never be concerned that your going overboard, we as parents of CF children all do it!. My twins who have CF are very cautious of germs even around their own parents, kids at school, etc.

It sounds as tho your daughter is doing a very good job with your grandaughter. The first few years of her life will be a hard road as far as lung involvement. Give your daughter insight that the older she gets, the better things will be. All babies have some sort of illnesses but the only problem is, is that CF babies get hit the hardest till their immunity takes over. Tell your daughter that if won't be right away, but there is hope that things will get better later on and keep up the good work!.

Anyway, we do have a CF member thread (SOUND OFF: CF Member Room) if you would like to skip on over and add your details about you. Learn about others as well who visit here on HW.

Welcome Again....we are here for you.
Cheers!


Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

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Post Edited (Twinstride) : 5/19/2006 3:19:57 PM (GMT-6)


mommyscfbaby
New Member


Date Joined Mar 2006
Total Posts : 19
   Posted 5/19/2006 3:14 PM (GMT -7)   

Hi Sea 2 Sorry to hear about your granddaughter,but glad to hear you now know what is wrong.It sounds like you and your daughter are doing a great job I feel you can never be to cautious,and it's safer to be overly than not enough.My son has CF he was born Feb 8th and diagnosed at 8 days old through the new born screening test.We had no idea we were carriers either,we also have a 4 year old girl,who we have found out since our son was born is a carrier.Luckly our son has not been sick ( praise the Lord) but I feel maybe that is because he was diagnosed before he had a chance to get sick,and was given the RSV shots in the winter months to keep him from respitory infections.He was 7lbs 5oz when he was born and now weighs 13lbs 9oz. I will keep your granddaughter and your family in my prayers.

            Heather


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 5/19/2006 11:02 PM (GMT -7)   
Thank you both for the replies.  It is encouraging to know that her immune system will begin to help in the future.  Leah is being breast fed so she should have a good start with this. 
 
Sea 2

Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 5/20/2006 9:06 AM (GMT -7)   

Hi Heather,

I have just been reading one of the threads "advise please".  Leah was born on 29th January this year and wasn't diagnosed until 6 weeks old.  She now weighs 10lb 6oz having been 6lb 7oz when she was born.  Conner weighs quite a lot more than Leah so I think it probably was a good thing to start him on the Creon so quickly.  After six weeks of life Leah's arms and legs were stick thin and her belly was distended.  It was scary to see.  Now she is quite chubby because although she is gaining weight she doesn't seem to be growing longer.  Like Conner Leah began to roll onto her tummy at a young age.  I can't help wondering how Bailee is as all three children were born around about the same time.

Sea 2 


imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 5/21/2006 6:47 AM (GMT -7)   
Welcome Sea2!  Sounds like you are a very concerned Grandma and will be a great support system for your daughter.  Your grandaughter will get very good care and hopefully she will start to thrive.
 
I would have to say if your doctor isn't too concerned about the sinusitis that you have and infecting your grandaughter, I wouldn't worry too much, just wash your hands and use good judgement.
 
 
Sandra
 
 
 


Absence is to love what wind is to fire, it extinguishes the small yet enkindles the great...


stephen101
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 5/21/2006 9:07 AM (GMT -7)   
Welcome Sea 2 ,
Like the others said you sound like a concerned grandma! As I myself have cf i would like to tell you what i feel! Yes it is good to be careful but dont be too careful ... you dont want your grandaughter to feel isolated when she is older! I have experienced thaat while growing up! Just Be normal and if she takes her meds she will thrive! She will pick up bacteria ..... GUARANTEED! And if her sputum cultureshows up infection thats very normal ! Welcome Sea 2 !

Stephen
      cf is a part of me but dont define who I am


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 5/21/2006 9:33 AM (GMT -7)   

Thanks Stephen,

That is very encouraging and reassuring.  I suppose it's only natural for her to be susceptible at so young an age and we have been warned that she will pick up infections etc.   We are all still learning what Leah's natural state of health is going to be.  Also, your point about her not feeling isolated is an important one. 

 Leah has been prescribed an inhaler and is breathing much better today. 

Thanks again,

Sea 2


momof3boys1girl
Regular Member


Date Joined Apr 2006
Total Posts : 25
   Posted 5/25/2006 12:51 AM (GMT -7)   

Hi Sea2! I think it is wonderful that you are there for your daughter and grandaughter. I have a 2 year old son that was diagnosed at 2 weeks old. I dont think I would have made it thus far if not for my mother (and of course the Lord). My mother has helped me sooo much with my son...not only physical help but mentally as well. Your daughter will need you....there is nothing like the support of your family.

I also wanted to tell you a little about what we have been through. My son has only been in the hospital one time but boy was it a doozy! He got a virus at 11 months of age from his cousin that was almost too much for him to handle. We took him to the emergency room on a Sunday night where they immediately took him to the ICU and put him on a ventilator and a medically induced coma. All of this was for his lungs to rest since he was having so much trouble breathing. He stayed on the vent for about 7 days and finally came out of the ICU after 10 days. He was in a regular room for about 6 days and then finally got to come home. The docs ran so many test and gave him several cultures all of which came back clear of infection. They finally said he had a virus. I am telling you all of this to let you know that this winter was a much better one than last. He did get a few colds this winter and even got bronchitus but was able to get better with oral anitbiotics and more treatments per day at home. I can tell how much better his body is at being able to recover now since he is a little older. He is able to cough now when I tell him too and that is so helpful too him. I really think that as your grandaughter gets older things will get easier for you guys as well. It really is harder when they are babies.

Also he is our youngest of four all of which have the same mom and dad. We were also shocked at the diagnosis. No family history on either side and three previously healthy children. When they told me itcould be three things, one of which was cf, I thought there was no way it would be that. Well anyway welcome to the board and hope your grandaughter is feeling good soon!


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 5/25/2006 10:33 AM (GMT -7)   

Hi, momof3boys1girl,

Thanks for your messages.  When things seem to be going from bad to worse it is reassuring to know that things should get better later.  If your son can improve after all that he has been through then that gives us hope for the future.  Leah is a bit better today so of course her mum feels better too.  I suppose this will be the pattern. 

thanks again,

Sea 2

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