Sorry Long - I am finally ready to start sharing this will all of you - Prayers are needed
Some prayers are needed - but for those who are trying to decide if they want to take any of the recommended tests maybe my story will help you make your decision one way or the other.
I had my level II back in the end of January. It went really well and they told me everything looked perfect but they couldn't measure the stomach - it wasn't filling enough. So - they made me come back on 2/13 for a follow up.
Well they found a potential problem. I spent Valentines week a crying mess - I couldn't even call my friends I just couldn't even talk about it.
They told me that the baby's stomach was measuring abnormally small which is extremely rare - so they didn't know if there was a serious genetic problem or another deformity which will need surgery immediately upon birth. They basically told me they had no idea what was wrong and rushed me on Valentines day to another Perinatologist for a second opinion - I had to go alone as my parents were on a cruise and my DH couldn't get out of work.
After that visit I ended up having to have an emergency amnio - on Thursday b/c they were concerned some of the genetic issues (and for those who have said it - the amnio has nothing to do with whether one would abort but to have whatever measures are needed to care for the baby in place when it is born). Although they were leaning towards it not being genetic since my AFP, and ultrascreen results were perfect.
I have been suffering for the past two weeks waiting to find out what is happening. My job and family wanted me to get another opinion and I was squeezed into someone at Cornell today.
His ultrasound revealed that I NOW have increased amnionic fluid (which I didn't have two weeks ago) and the stomach is still not measuring normally. Basically he did tell me he thinks my Amnio will be negative - but he unfortunately says he is pretty definite that the baby has a problem.
The upside is that the problem IF it is the sole issue is correctable with immediate surgery upon birth (baby can't be fed until it has the surgery but after the surgery the baby should have a normal life) they think she has an atresia (sp?) or TE fistula (depending on which dr I speak with). They think the baby has some sort of issue which is preventing her from swollowing normally so that the stomach cannot fill correctly.
Basically if my amnio is negative (no results are in yet - I have an appt to find out Thursday but the office didn't have the results as of today). I will have to have regular sonos. I have to meet with a Pediatric Surgeon immediately and find out the implications of this issue etc from them. I am basically being told that I will now have to wait until the baby is born to find out 100% if it will need surgery (they are pretty positive) and if that is the only issue.
Although I now have to wait until I give birth to know the extent of the problem if I didn't do the recommended tests (BTW my blood work and earlier ultrasounds were all listed as perfect) they would not have known about the issue and they wouldn't have been prepared to do immediate surgery on the baby. I am just wondering how many weeks I can go without knowing if my baby is going to be okay or have a more serious problem than they are estimating.
Re: Sorry Long - I am finally ready to start sharing this will all of you - Prayers are needed
From what I know, it's a somewhat common surgery for newborns. The doctors are good and will take care of you and your baby!!! My prayers are with you and DH!
Re: Sorry Long - I am finally ready to start sharing this will all of you - Prayers are needed
Thank you for sharing your situation with us as it surely sheds some light of knowledge onto the undeciseveness of performing some of these crucial test. I am so sorry that you're going through this...you're in my prayers and I hope that everything work out. Stay strong!
