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#16793 - 02/01/06 03:55 PM Pregnant
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
Hello Everyone,

Just a quick update that my husband and I found out we are pregnant. I am the one with EHK and I also have 14 year old daughter with EHK as well.

I go to the doc tomorrow to see how far along I am. We decided to have genetic testing done at 11 wks to determine whether the baby has EHK or not.

I will keep everyone posted.

Jenny

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#16794 - 02/08/06 06:54 PM Re: Pregnant
trezawales Offline
Junior Member

Registered: 02/08/06
Posts: 1
Loc: Wales, United Kingdom
Good luck

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#16795 - 02/12/06 02:15 PM Re: Pregnant
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
How are things going with you, Jen?

I've been thinking about you.
_________________________
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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#16796 - 02/15/06 08:31 PM Re: Pregnant
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
Things are going okay. Besides beng green a lot I'm hanging in there. The genetic testing is going to be scheduled for the week of March 7 -- I'm really looking forward to finally getting it done.

I feel very reserved in being happy for the pregnancy until all the testing is completed. I'm taking good care of myself but feel stressed and nervous until it is all done.

I can't tell you how much I appreciate you asking me how I am doing. I am moved. It seems no one wants to chat with me because I am having the testing done and then deciding what I'm doing once I receive the results. I know it is a personal issue for everyone but I thought I might support on here but I guess I made everyone angry instead which was not my intent.

Thank you again for thinking of me.

Jenny

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#16797 - 02/15/06 09:05 PM Re: Pregnant
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
I am glad you posted here again, Jen. Congrats on the pregnancy. I've been thinking about you, you hadn't posted in a while. Was wondering what your decision was going to be, then saw this post. You're in my thoughts and prayers. I hope all will be well for you and your family.
Keep us all updated.
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#16798 - 02/15/06 09:15 PM Re: Pregnant
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
LauraAnn,

Thank you for posting and checking on me as well. I will most certainly keep everyone updated about the results of the test --

We didn't think I would get pregnant so fast -- but that is just fine with us as well as we ain't getting any younger [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Thank you again.

Jenny

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#16799 - 02/15/06 10:05 PM Re: Pregnant
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Hi jen
I dont know you but saw your post and I honestly believe if I were pregnant as you are I would get the testing done myself. My little guy is 5 months (he is the one with ICH) and I have two others one is 9yrs and my oldest is 20. This was such a big shock to my husband and I. We have never heard of this before and it is not on either side of our family.
Everyone has to make their own choices (no matter what it is in regards to) and not worry about what others think. You will be in my prayers.

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#16800 - 02/17/06 07:06 PM Re: Pregnant
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Jen, we just went through your situation. Elliot was born Dec 24th with what looks to be a pretty mild case.

It is a hard thing to reply to - even having been there myself, knowing the 50/50 chance, it is still hard to know whether to say "congratulations" or "I'm sorry" because the reality is somewhere in between. I'm glad that you're pregnant, yet I know how worrisome it is that you could be inflicting the disorder on your child. At the same time, I can relate to the next step - if the baby has the disorder, what do you do with that info? Prepare for the baby, or terminate? What a horrible decision to have to even contemplate. And it isn't something anyone but you and your husband can decide.

For us, the gene isn't known, so we couldn't do any testing for it at all. Even at 33 weeks, it was uncertain whether the baby had it from doing an ultrasound. Much too late to terminate a pregnancy, even if that was what we wanted to do. While we had decided to continue the pregnancy even if the baby was affected, that bit of knowledge helped us determine how much prenatal testing we wanted to attempt - fetal biopsy or fetoscopy were about the only other options for us, but we didn't do them because of the risk of miscarriage outweighed the usefulness of the information.

If you ever want to talk, email me.

Jennifer
Brian
Nathan(3) and Elliot(8 weeks) - ichthyosis-en-confetti
_________________________
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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#16801 - 02/18/06 07:15 AM Re: Pregnant
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Jennifer,

I didn't realise that you were having a baby...congratualations...

And I appologise if I encroached on your new website for new parents (when I asked if I could become a member of it) ...I realised later it was just for new parents...

so I won't bother getting on it...

Pauline...congrats again...
Pauline

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#16802 - 02/18/06 02:00 PM Re: Pregnant
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Pauline, everyone here is welcome on that site. I just created it so we could post pictures and talk about non-ichthyosis things or even some ichthyosis things that you wouldn't necessarily want to be found on a Google search.

Apparently, not many people want use it. There are over 50 members, but nobody is posting there. Go fig.
_________________________
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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