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#10481 - 05/25/05 05:26 PM Well...NFP is out the window
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I am posting to announce that I am pregnant. 8 weeks along, so I won't know for a long while if this child has confetti or not. Our chances are 50/50. So we'll see what happens. I'm due Jan 4, 2006.

I've known for 2 weeks, but I'm still not sure how to feel about it. I'm happy that I am pregnant, but I am worried about this one's health. No one knows much about confetti, so we have no idea how mild or severe this one will be. I have a lot of other worries, too, but none related to the ichthyosis.

My first ultrasound is tomorrow. I've been bleeding since yesterday morning, so I am worried that I may miscarry. I hope not.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#10482 - 05/25/05 07:29 PM Re: Well...NFP is out the window
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
You will have to let us know what happens. Your family will be in our prayers and I hope all works out for you guys.

Shauna

[This message has been edited by ShaunaJ (edited May 26, 2005).]
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#10483 - 05/26/05 03:42 AM Re: Well...NFP is out the window
AngV Offline
Member

Registered: 11/27/04
Posts: 23
Loc: Sartell, MN
My thoughts and prayers are with you, I hope all goes well tomorrow. Congrats and best wishes to you and your family.

Angela
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Angela

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#10484 - 05/27/05 12:07 AM Re: Well...NFP is out the window
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Congrats on your pregnancy! I hope everything turns out ok for you & your family!
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#10485 - 05/27/05 06:11 PM Re: Well...NFP is out the window
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
U/S was yesterday. It has a heartbeat, so I seem to be okay. It was hard to see much of anything on it because it is only 2mm long - that's 1/20 of an inch! My due date changed to 1/21/06.

That's all we know so far. Thanks for your support.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#10486 - 05/27/05 11:08 PM Re: Well...NFP is out the window
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
My son's birthday is 1/18! I'm sure you'll have a great pregnancy and a very healthy baby!
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#10487 - 06/03/05 05:04 PM Re: Well...NFP is out the window
dpatock Offline
Member

Registered: 01/31/05
Posts: 44
Loc: Sacramento, CA
Congrats Hearsay! Please keep us updated! -Darcie

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#10488 - 06/09/05 12:14 AM Re: Well...NFP is out the window
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
How's the bun in the oven? Is the dough rising yet? [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#10489 - 06/27/05 03:39 PM Re: Well...NFP is out the window
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Dough is definitely rising. I'm 10 weeks as of Saturday, and I am starting to pooch out in front. I saw the OB last Friday, and I am now officially a high risk patient. An older siblingpreemie + 50% chance of rare birth defect = high risk, I guess.

Fine by me. It looks like they will be doing more ultrasounds and will likely be doing a 3d in the 3rd trimester to see if they can see the disorder developing or not. I also saw an article about doing a fetal biopsy at 19 weeks and seeing accelerated keratin growth. Apparently it doesn't show up until 24 weeks in unaffected babies. Anyone know anything about that?

This is from emedicine. Since our gene is unknown, we'd fall into the first category:
* Prenatal diagnosis can be made by ultrastructural analysis and by direct gene sequencing.

o Prenatal diagnosis of EHK can be performed by ultrastructural analysis of fetal skin biopsies and amniotic fluid cells. Keratin 1 and keratin 10 are expressed suprabasally as early as week 14 of gestation; normal fetal keratinization does not begin until the 24th week. To date, keratin filament aggregates have been detected for diagnostic purposes in the 19th week of gestation for diagnosis.

o Chorionic villus sampling can diagnose EHK earlier by direct gene sequencing if the familial mutation is known. The earliest documented diagnosis by this method is at the 15th week of gestation, but the chorionic villus sampling theoretically can be tested as early as the eighth week of gestation.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#10490 - 07/27/05 09:01 PM Re: Well...NFP is out the window
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Well, I'm approaching 15 weeks. I guess I should update. As is usual for my life, I'm juggling quite a bit.

I was in Baltimore over the weekend and got back Monday afternoon. My MIL took the kids on Thursday and brought them back yesterday. Today was occupied by an eye appointment for Nathan. And in the meantime, I've been dealing with some pregnancy issues and also we may be moving to DC. Detail follows, if you're interested:

1. editted out

2. Pregnancy. My OB booted me completely. My care has been moved exclusively to the high risk office. Which means that rather than paying a single $20 copay for all the office visits and the delivery and the hospital, with the only extras being lab tests and ultrasounds, I will now be paying $20 EVERY TIME I GO IN. Plus lab fees and ultrasounds. And delivery is separate. And I can't deliver where I had Nathan. I have to go to OSU, which is 20 minutes of highway driving further away. And they want me to have a c-section, whether the kid has the disorder or not. And now I'm looking at possibly moving between 7 months pregnant up to 3 months after the birth.

3. I'm also in a bit of a pissy mood because of my MIL. The usual comments - telling Nathan how messy the house is, smart *** remarks about the cat and how the kids shouldn't touch the cat, asking me if the cats had used the plastic storage dishes I was giving back to her - like a cat could stick its head into a quart-sized deli dish. What else...oh, all the laundry I sent up with the kids had to be rewashed because it smelled funny and one pair of overalls was covered in cat hair - straight from the dryer, mind you. Then the dinner conversation about the job. She asked how I felt about moving and I told her that I was fine, as I could get a job anywhere with my field. She then spent 20 minutes telling me 1) that I can't get a job because I never completed my master's degree, 2) how do I expect to work with 3 toddlers at home and a house to manage, and 3) despite my field, (sciences - research and teaching) I shouldn't expect to get a job that makes 50,000 in the DC area, that I'd be lucky to get a 30,000 job, and 4) Brian's job is more important than anything I could do because he brings in the majority of the family income....oh, and also, I shouldn't expect him to do his own dishes on a weekend when I'm out of town and I should just cheerfully put them in the dishwasher myself because...he works and he's tired. AAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHH

I haven't killed her yet, though. I'm thinking DC is looking brighter every day.

So...my big ultrasound is also my next appointment - Tuesday, August 9th. 13 days away! I'll be 16 weeks along, so hopefully they'll be able to tell. If not, I'm likely having a fetal biopsy between 19 and 22 weeks.

On the good news front, Nathan is not showing signs of corneal erosion, and is also not myopic. Both make me very happy, although the doctor irritated me a bit because he told me that Nathan doesn't have ichthyosis because all the ichthyosis patients he has seen have cataracts and problems from ectropian. Like I wouldn't know if my son had this damned disorder or not.

I'm sorry for the whine. I just need to get it out today.

[This message has been edited by Hearsay (edited July 29, 2005).]
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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