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I'm happy for you ;) Thanks for the update! Hope that my girl will turns out fine as well...
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Just wondering how you are doing Reen?? Give us an update!!! I don't have one as of yet. I have my next u/s 12/8. I went to the dr today (36 wks. yay!) and no progress. Cervix is still closed....
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Hi Lory,
I went for u/s last week and the doctor said that the ventricles is still enlarged. She didn't take the measurement tho... and I am too nervous/devastated to ask her for a measurement. She also confirmed that my baby has bilateral cleft lip/palate. I am now preparing myself, mentally, of whatever happens to my baby. I have an appointment with a reconstructive surgeon today to know more about this cleft thing. I don't feel happy at all with my gynae. I'm thinking of changing to a new gynae and the delivery plave. I'm not sure..is it because the news that she always convey is not encouraging and I am still in denial of having to face all this problems. I need a good mental boost..!! Most of the time I am lost...not sure of what to think and what to do. Thankful for a good supportive husband and have to be strong for the baby as well.
Hope that it's going to be very well for you, Lory. Enjoy your last moment of pregnancy...
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HI Lory, my story is somewhat the same as others on this post, they thought my baby boy had Trisomy syndrome, which if he went to full term he would only live a day or two. I was sent to a high risk OB and have been seen every 2 weeks since about week 10, I am now week 31. I had to have an amnio and after everything genetically was ruled out we went back for another u/s to find that he has a unilateral cleft lip/palate. We actually met with a pediatric plastic surgeon and he gave us a little hope in that he said it is virtually impossible to know whether or not the baby has a cleft palate by u/s, the lip, yes you can see but the palate is difficult to diagnose even with the 4-D, he said the only way to tell is to wait until he is born. We found a really good website called www.widesmiles.org, it has a lot of information...if you have any questions I would be glad to try and answer them, I have to meet with a special feeding nurse within the next few weeks so we can learn how to feed him if he does have a cleft palate. Good luck to you and everyone else on here, we have gone through so much and I am glad to know there are others out there that know how we feel.
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oops my previous post should be directed towards Reen, sorry about that....
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Hi Reen! Thanks for the update...you have been in my thoughts. I'm so sorry about the new diagnosis....are they sure that she has a cleft? I hope the appt. goes well and good luck with your doctors. Hopefully you will find a better one! Good to hear that you have a supportive hubby! That definitely helps alot!!! Stay strong! Thanks Tara, for sharing your story!
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Thanks Tara for sharing your story. It's good to know that someone out there know how you feel. Thanks Lory for your virtual support ;) I went to see the nurse who works with Cleft Lip and Palate a__sociation yesterday. She taught me on how to feed the baby and show me the pictures of babies who had cleft and now have beautiful smiles. I also bought that special bottle and teats already. And then I went to see the plastic and reconstructive surgeon. He explained what I should do after the baby is born. For the time being, I just need to relax and enjoy my pregnancy. My gynae said that my baby might possibly have trisomy syndrome and she can survive for only less than 2 months. But, I choose not to believe that. My baby is kicking and moving all the time in my tummy and I instinctly know that my baby is healthy. Well...I just need to pray more and wait for my little bundle of joy to arrive. And I hope that it will not be as tough as it seems. Tara, this is my personal mail if you want to share/ask anything aireen.n@gmail.com.
Good Luck to all of you...
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Lory... The gynae seem sure that the baby has bilateral cleft lip/palate. She show us where and how it is in the screen. I don't quite get it, but my husband said that it is pretty obvious if we add our little imagination. I can see the outline of her bottom lip, but can't see properly the outline of the upper lip. So, I take what the gynae said...bilateral cleft! I'm not going to change my gynae. It seems to late to change to a new one, so I will just stick with my current one...
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Can I please have updates on how everyone is doing? My wife just went for her detailed 20 week u/s. The doctor informed us that the brain ventricle measured 9.3mm, and that he wasnt overly concerned but would like us back in 2 weeks. Needless to say, Ive been a nervous reck since then, doing constant research on hyrdocephulus.
Any help would be greatly appreciated. My email is eriklombardo@verizon.net
Thanks for any help.
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I'll pray for you and Aydan. (We almost named our Noah, 1st, boy, due in April, Aiden-Hee!). I hope everything goes ok for both of you.
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Hi lory... Finally I have hope after reading this thread =)
had my 20 wk scan yesterday, got sent to another hospital to discuss the findings, I was nervous & scared. Baby is perfect in all ways, organs, measurements ect but her ventricles are 18.6mm which is VERY high... We have been referred to Liverpool hospital for a more in depth scan & because their equipment is much better than the U/S here apparently.
obviously I have been given the worst case scenarios which have broken me inside, I love my unborn baby so much already.
I'm just hoping that by Monday 23/11 there is some decrease in ventricle size because like my midwife says, babys grow rapidly daily.
I will keep you all posted x
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