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confirmed... my twin baby girls have cystic fibrosis

Nov 02, 2009 - 16 comments

I'm writing to you from Childrens Hospital, unfortunately to report that my 4 month old twin daughters have been confirmed to have cystic fibrosis.

Many of you have followed our story as it unfolded,, from the intestinal blockage which was found in utero at 24 weeks. then found out i am a cf carrier but my husband tested NOT to be a carrier (it takes TWO faulty genes to have cf, one from each parent) then at birth the babies were premature (30 weeks) and one had intestinal surgery at 2 pounds and we sent her blood off for extensive cf testing,,, then both babies were confirmed to have ony one gene, carrier status only.  Problems persisted in one of the girls, severe failure to thrive, feeding intolerance, etc so I moved to a larger hospital for further testing. Sweat tests done a little over a week ago confirmed my fear,,, both have cf, and my husband carries a "previously undiscovered" mutation. Which is why it never showed up on any of the tests.

Both girls were immediately admitted to the pulmonary unit of the childrens hospital and found that their lungs & airways show signs of airway disease consistent with cf & started on breathing treatments & digestive enzymes & now we're in "swing into action mode" and determined to do whatever it takes to help these girls live healthy normal lives as much as possible,,,  as we wait on a cure.

Will update again at a later date.  

Love & Hugs,
Lori

Comments
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99457 tn?1321878677
by therese101, Nov 02, 2009
Thinking of you. I will be praying for the girls and your family in this time, now that it has been diagnosed you will be able to help them!

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by blueeyedtabbycat, Nov 02, 2009
I have been surfing the web for CF information ever since Taylor had to have a sweat test done. And I have to say some of the information is scarey. But as therese said, now that you know you can help them. I will be praying for little Hailey and Hannah. Stay strong Lori, your little ones need you! Hugs,
Tabitha

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by Quinns momma, Nov 02, 2009
I am so sorry to hear this. My neighbors son has CF and seems to be doing very well. He is 9 years old. Keep the faith and know that we are thinking of you and your girls.
Kelly

Avatar universal
by AriQueen, Nov 02, 2009
Sorry to hear this....I will keep you in my prayers. God bless you and your family.

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by rachjas0623, Nov 02, 2009
My thoughts are with you and your family.

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by Cheyenne_08, Nov 02, 2009
I am so sorry to hear about your little girls. You are in my thoughts.

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by blessedmomof3, Nov 02, 2009
I'm praying GOD keeps his hands on you and your family, and guides you all through this trying time. May his healing hands bless those bueatiful girls of yours!

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by bree08, Nov 02, 2009
Lori I am so sorry my thoughts and prayers are with you and your family.

Avatar universal
by mlb1234, Nov 02, 2009
I am so sorry to hear this news about your beautiful girls.  I can only imagine the worry, stress and heartache this is causing you and your husband.  Hugs.

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by Sunkissed19, Nov 02, 2009
i am so sorry for your terrible news, i wish you all the strength and courage in the world to make it through this...Hailey and Hannah are beautiful, strong girls!

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by NicMom, Nov 02, 2009
I'm sad to hear that the girls have CF. We all want our children to be nothing but healthy so I know this must be hard on you. At the same time I am happy that they were finaly able to make a correct diagnosis so that the girls can begin getting the treatments they need. I'll be praying that they start thriving and doing better soon.


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by Helen72, Nov 02, 2009
I am so very sorry you are going through such an ordeal.  My heart goes out to you.

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by Asking4aMiracle, Nov 02, 2009
Oh honey, I'm so sorry!! God is amazing and works wonders, I will pray for your stength through these hard times and that Hailey and Hannah grow to be very healthy little girls!! ((hugs))

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by Michele, Katy, TX, Nov 03, 2009
Oh my gosh Lori....I am so very sorry.  Hailey and Hannah are very strong little girls and are so very lucky to have you for their mother.  Stay strong.  I can only imagine how hard that must be sometimes.  I hope and pray that you have a strong support system.  Something tells me that you do.  Please know that you are in my prayers.  I will pray especially for you and your girls tonight and every night.

Please keep us posted and know that we are always here to listen......Tons and tons of hugs coming your way!

Take Care,
Michele

Avatar universal
by pooket825, Nov 03, 2009
I am really sorry about that lori, I am gonna keep you and your family in my prayers. I wish you all the strength and courage in the world to make it through this. I agree with nicmom we do want nothing for our child or children to be nothing but healthy. all of us here will be praying for the girls to be home soon, keep us updated
tracie

661065 tn?1316787944
by Cill190, Nov 03, 2009
May God Bless you and your family. I'm very sorry.

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