pregnancy update.

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Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 2/15/2011 8:12 PM (GMT -6)   
Hi everyone.

things have been really rough for us lately. cry

As far as my ostomy is concerned, everything is fine. but, as far as the baby's health, things are really really not fine.

a few weeks ago we found out that she has a major heart defect that will require surgery when she is a few months old (hoping that she could wait that long). It's called complete AVSD (arterioventricular septal defect) and is basically two holes in her heart. It is a strong marker for down's syndrome. So strong that the Dr.s told us to assume she had DS (70% chance she does).

Well, today we back for a recheck and possible amniocentesis. We decided to decline the amnio, b/c we couldn't deal with the risks. It ended up that we didn't really need it anyway, b/c they found another defect which is strongly associated with DS. The 'new' defect is called duodenal atresia. It's basically where her stomach and small intestine don't even connect. So, she will have to have surgery to repair that before she can even leave the hospital. shakehead She can't eat without it. The perinatologist has prepared us for a NICU stay.
Coupled with the heart defect, he told us that he would be very very very surprised if she didn't have DS.
I don't even care about the Ds anymore. I just fear for all of the other health issues.

I'm not one to usually feel sorry for myself. In fact, I'm usually a pretty optimistic person, and laugh at much of what I've gone through, but this has beaten me down. It fricken SUX! I feel like a dark cloud just follows me wherever I go, and craps on me. I'm exhausted.

J's Mom
Regular Member

Date Joined Oct 2008
Total Posts : 109
   Posted 2/15/2011 11:25 PM (GMT -6)   
Chasblah, It is ok to feel sorry for yourself. My heart aches for you and your baby. I went through a similar experience 22 years ago. However, 22 years later, as I type this ,my son that wasn't suppose to survive birth, is laying back in his bed watching Barney and singing. I still have days that I feel sorry for myself and my son, but most of them I feel blessed. Not all of us are fortunate enough to have this gift from God. I was told that special needs children are given to special parents. Hang in there and once the initial rough spots are over you will also feel blessed. I will keep you & your baby in my prayers.

2b ColonFree
Veteran Member

Date Joined Nov 2008
Total Posts : 2603
   Posted 2/16/2011 6:47 AM (GMT -6)   

i'm so sorry to hear all this. i feel so bad for all you're going through. i hope you keep strong through all this. keeping you and your baby in my prayers.
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 2/16/2011 7:42 PM (GMT -6)   

WOW! I am sooooo sorry to hear this. I'm glad you are physically doing well because you are in for a rough road initially after the birth. Praying that God will give you the strength you need. That is a nice testimony from J's mom.


Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 2/17/2011 9:25 PM (GMT -6)   
I can only imagine what you're going through. You're an amazing woman. You and Russ are in my thoughts and prayers.
Love, Cece

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 2/18/2011 12:38 AM (GMT -6)   
Thank you all.

I know this is a bit off topic, but it's also another outlet for me. So, thanks.
29y. married with one beautiful daughter born 11/20/07
-2002 dx with severe pancolitis u/c; 12/19/08 had total colectomy; 12/25/08 emergency surgery due to abscess-had to redo ileostomy and switch to left side; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
Feeling Fabulous Now with my ileostomy!!!!!
Pregnant with second baby due 5/26/11

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 2/18/2011 7:07 AM (GMT -6)   
I'm sorry to hear all of this too Chassity and I will keep you and your family in my thoughts and prayers too. Take care
Doreen ((((((((hugs))))))))))

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 2/18/2011 9:57 AM (GMT -6)   
Hi Chas,
I'm sorry to hear you're dealing with all of this. I used to teach preschool at a school for kids with special needs, so I've worked with kids with DS a lot and seen some of the physical problems they've had. It's really not fair.

To give you a positive spin, I have to say all of the kids that I've worked with with DS are seriously some of the most happy children ever. For some reason, they all seemed to see the glass half full and saw the best in everyone. They were very loving and honestly we all loved working with them. I hope that once she is born, the two surgeries will be enough and she will be healthy after that.

When are you due? Sending you hugs!!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 2/18/2011 8:08 PM (GMT -6)   
Thinking of you...and sending strength.

Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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