I need many many prayers-update 4/25

update: 4/25

Thank you to everyone for all of your prayers, being able to get frustrated on here has saved a lot of pressure on my husband, and he was happy I wasn't bottling it all up.

Anyway, I FINALLY received a call from Stony Brook last night by the Nurse Practictioner that works with Dr. Ogburn (who I had seen in November). She said that the next step to determine whether the baby did in fact have Trisomy 18 was to do an amnio. I told her that right now we were not set on that because I really didn't feel like something is wrong, and to take an invasive step would worry me more with 'what ifs'. She said we certainly could wait for the ultrascreen at 19 weeks, but that is another screening, not a diagnostic test (which I completely understand) and that it might rule out the possibility of an amnio by then.

I asked her to go over the test results with me once more, and she told me that on the first ultrasound my chances of Downs was 1:774 and for everything else, including Trisomy 18 my chances were 1: OVER 10,000. She said that I had the results of a 20 year old.

She said she did not know why I was even given the quadscreen because the only thing they should have been testing for was the spina bifida/neural tube defects since the 1st baby had one. She said they should have ONLY given me a Monoscreen. She said since this test came back with Trisomy 18 as 1:10, she truly can't explain the results because they, in her words, "Make no sense."

I mentioned to her that in my gut, I do not believe that there is something wrong and if I hadn't had this test, I wouldn't be worried. I said, doctors and nurses haven't been looking at my chart to realize that the 1st baby had anencephaly and that is why I am so upset at this point. I said, I feel like I am being bombarded, I had that baby in November, and now this. She paused and said, "Oh my god, that was so little ago, no wonder why you are so concerned-I am glad I called before I went home you would have been going nuts." I responded, "Uh yeah!"

So she said that she wanted me to contact a Genetic Specialist first, and speak with them, but in her own mind, she also thinks this is nothing, but she wants me to make that decision for ourselves and our baby. I have an appointment for May 2nd.

So, in all of my rambling, I am feeling better today, less stressed (but still nervous) but I do feel better that I spoke with her. Truly in my heart, I don't think anything is wrong with this baby. I will wait for the genetic counseling, but I think for my husband and I, we are going to see what happens with the ultrasound.

Thank you again for all your prayers, and I will definitely keep everyone updated. Thank you for all of your support, you are all amazing.



4/24
Yesterday I came home, and there was a message on my answering machine from the OB. I had taken the AFP test on Saturday, so I am thinking it is regarding that, and already I get a lump in my stomach.

I call back, and they have the answering service picking up, telling me to call back after 6. Well my husband and I were planning on going out to eat, so we start heading towards Pt Jeff, and if we have to stop at the drs, we will. I call at 6, and the lady on the phone is so nasty that I tell her nevermind and hang up on her. Now I am in full blown tears.

We get to the Drs office and I ask the receptionist to see any doctor or nurse that can look at my file. They call me in right away and the nurse tells me that the 12 week testing came out within range for the Downs and Trisomy. The AFP just came back and I was cleared for all neural tube defects, Spina Bifida (which the first baby basically had a form of), and Downs, but the Trisomy 18 came back with a chance of 1:10. Trisomy 18 is not life compatible.

So now I have to contact Stony Brook this morning and try to get a Specialist appointment to do further testing. I had a nervous breakdown last night, I just can't do this again. I haven't even called our parents because I don't want to upset them.

I need all the prayers I can get, I don't know why I am being punished. I am sick to my stomach.

Message edited 4/25/2008 9:08:16 AM.

Re: I need many many prayers

Re: I need many many prayers

sorry you have to go through this

Re: I need many many prayers

Re: I need many many prayers

Thinking of you Janine - I know many people that have had similar screening results and their children are 100% healthy.
Sending prayers your way - you don't deserve this anxiety

Re: I need many many prayers

Re: I need many many prayers

Re: I need many many prayers

sending prayers your way

Re: I need many many prayers

I have had friends as well come back with not wanted results and they have healthy children

Re: I need many many prayers

Re: I need many many prayers

Oh Janine- I will be praying so hard for you

Re: I need many many prayers

My heart goes out to you!

Re: I need many many prayers

Oh GOD, you are in my prayers. Try to remain as positive as you can, the stress is not helping.

Re: I need many many prayers

You are in my thoughts and prayers!!!

Re: I need many many prayers

oh my god janine i can't believe this... i really truly hope those results are wrong, that would just be beyond unfair... please keep us updated. you aer in my thoughts and prayers

Re: I need many many prayers

Many many prayers coming your way

Hopefully you can get a specialist appt very quickly. It's impossible for you not to panic at this stage again so I can't tell you to relax but try to just breathe and stay calm until you can get a definitive answer. The baby isn't going to benefit from you stressing at this point so try to stay calm for his/her sake here.

We're here for you regardless!! Hopefully this is just one of those tests that come back frequently with a false positive.

Lots of hugs too!

Re: I need many many prayers

Re: I need many many prayers

I'm really for you!!!!! Try to stay positive!!!

Re: I need many many prayers

Re: I need many many prayers

I will be thinking of you

Re: I need many many prayers

Re: I need many many prayers

"When I see a patient who had a positive screen for one of these conditions, I explain the difference between a screening test and a diagnostic test. A positive screening test does not mean that there is a problem, it only means that further testing is warranted," says Diane Masser-Frye, a certified genetic counselor at the University of California, San Diego Center for Fetal Diagnosis. "Traditionally, about 5 percent of women who take the AFP test will get a positive result, but more than 90 percent of those will go on to have normal babies."

Source

don't give up hope!!!

Re: I need many many prayers

I'm so sorry!!!

Re: I need many many prayers

Re: I need many many prayers

I hope that in the end you get the news that this was a false positive, as so many women get. Stay strong!