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mooby is making me do this

Started by GodsPROMISE, February 21, 2013, 02:20:54 AM

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GodsPROMISE

Cysters

When my husband Christopher and I decided to have children we had never heard of the disease Cystic Fibrosis. We never expected to bring a child into this world any less than perfect as certainly every first time parent does. Our daughter Gwendolynn May was born on February 27th 2009. After 3 days in the hospital and no bowel movement they transferred us to the NICU. The Neonatal Intensive Care Unit was our daughters home for the next month of her life.

Her first week there she was not allowed to eat or drink. There was a NG tube placed in her nose and down into her stomach to syphon off her stomach juices and bile. Her stomach was distended and close to rupture from her intestinal block. At 9 days old they wheeled her into the operating room to open her up and remove the obstruction. When the doctor came out he informed us that she has never removed a block of that size and thickness without it being a sure case of cystic fibrosis. The next day we got the positive results from the DNA test. She has CF.

Once we were released from the NICU things got into a steady pace of doctor visits and check ups. As we started our monthly routine of pulmonary center visits we took her first chest x-ray. It wasn?t what they had hoped for. Gwendolynn had asymptomatic pneumonia caused by MRSA. She spent the next 2 ? weeks in the hospital getting IV antibiotics through a PICC line, bronchoscopy & gavage and a stomach emptying test to check for reflux.

Come 2010, I was newly pregnant with miss Genevieve when Gwendolynn had to be taken to the hospital as she was vomiting bile like when she was born. We knew immediately what it was and that she needed help. She was sent home from the ER with a ?stomach flu? diagnosis. We were back the next day and a transfer to a different hospital then revealed that she did indeed have DIOS- Distal Intestinal Obstructive Syndrome which is common in people with CF. 4 days in the hospital and we were able to get her to pass the obstruction without surgery.

Later that year we welcomed our second daughter Genevieve Marie into the world. She too was diagnosed with cystic fibrosis from the start though she had no obvious indications like her older sister. She was a very happy and healthy baby and to this day continues to be. She has never been sick or had any sort of complication due to her genetic disease.

A month after I gave birth to her sister, Gwendolynn went in for a PEG tube placement surgery. Due to her early problems with her disease, she has been unable to maintain her required high calorie diet throughout her young life, resulting in a low weight growth.  This has required her to have a PEG tube (feeding tube) surgery to ensure she is able to get the adequate amount of calories needed for her survival. CF requires that an adult consume around 5000-6000 calories a day to MAINTAIN their weight. 95% of gwens calories are now put through her feeding tube and her weight has gone from the 3rd% to the 25th%. We don?t expect Genevieve to have the same eating issues.

No new mother expects to be handed their new born baby and also be handed an expiration date but as its happened to me twice now I can say not only am I not accepting it I am going to fight with all my power to see them past the average age of 37. Mid 30s is a time to enjoy marriage and welcome children into your life not saying your final goodbyes. Neither girl fully understands their diagnosis yet and what it will mean for their future but being honest with them about CF and raising awareness is what I consider my best contribution to finding them and the 70, 000 others in the world with the disease.

With all that being said I am proud to announce that VERTEX pharmaceuticals are close to a ?cure? for this disease! They have a drug out now called kalydeco which treats 4% of people with CF and corrects about 90% of the disease. Their drug that would treat my daughters and 90% of everyone with CF is still in clinical trials but showing great results. We expect to see the drug on the market in the next couple years.


Maggie the Opinionated

This is excellent. I would like to use their pictures, if I may. You have posted lots of cute ones and I can pick something or you can choose. Just let me know.

GodsPROMISE

yep have at it.

this is the one i use for the cff.org page but any you pick are fine if you prefer others

Maggie the Opinionated

You are published! Moooooobbbbby knows how to give you author credit so I will let him change the tag line.

Hemingway

A touching story. And the pic is very cute! +1 GP  ||smiley||
"Dont try to fix me, I'm not broken"

leese

Well told, GP. The pic of your girls is gorgeous, as usual.
*

davdi

Wonderful story, GP, and such lovely children could only be a blessing to a very deserving mother.  Cheers and every best to you on your journey.

Gwendolyn favors you so much.  Be as beautiful as you are.
বাদল

Furu ike ya
kawazu tobikomu
mizu no oto

καὶ ἡ σκοτία αὐτὸ οὐ κατέλαβεν.

Tom

#8
Hello

What Godspromise did not tell you is that CF results from a genetic discrepancy that the parents have which when combined can results in an infant being born with CF.  It is my understanding that there is a 25% chance of a CF baby when both parents are a carrier of the defective gene.  This is the case with my son.  His first child, a girl, was born without any associated CF problems but the next baby, also a girl, had CF and this was not picked up for at least a month by the doctors and this magnified her CF condition and problems.  Their next child, this time a boy, also has CF but his condition was know before he was born and so measures were taken to reduce his associated CF problems.  My son and his wife had a fourth child, and she was ?normal.?

Now, many people are carriers of this defective gene and my understanding is that 1 in 4 people do so.  Now when only one partner has the defective gene, CF is not o the table for them to be concerned about, however, their offspring can still be carriers of the defective gene.

Now if you have looked at your family tree, and have wondered why certain family lines have had a number of their children die early, then CF could have been the reason.  Often their children were described as doing poorly and having stomach problems.

My son and his wife are happy at the moment because the prognosis of their second daughter life expectancy has just been doubled by the doctors from 18 to 36 years, if no complications occur. 

Simple things like her feeding button and tube coming out while she was swimming in the ocean breaks and not noticing or feeling this happening until she was drying herself off after her three hours in the surf can be a problems for her.

Government budgets also hold her life expectancy to ransom as the government runs out of money to do expensive life saving operations.

Now my two grandchildren with CF are a blessing for our family and we would not change them for a healthy child as the inspire us to reach for the stars just as they are forced to do and to have a belief that a solution is just around the corner for them both.

Hopefully, I will not outlive both my CF grandchildren and that they will even with their handicap make me/us all proud of their achievements throughout their life.

CF is not a life sentence but a different starting point to becoming great in the eyes of those around them.

Shalom

Tom

Hemingway

"Dont try to fix me, I'm not broken"

QuestionMark

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