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Comments on cjengo`s Profile
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Comments 1-20 of about 19 to cjengo
1

kevkel - 27.3 hours ago
Thank you so much. Sorry to take so long to reply. I continuously read this forum but hadn't signed back in for a bit and didn't realize I could get private messages. I go back to the MFM today for another U/S and I really feel positive about it and I am sure you probably feel the same that this site has completely reassured me and made me feel a lot more positive about the outcome of this!!!! I hope you are doing well also! I will post an update to my appointment in the next day or so (just depending on when I can find the time) :)

Thanks for the extra message it really means a lot to know I'm not so alone in this!

lin - Thursday, 8 May
Your right, in fact when i first found out about my sons ventricles my doctor was away on holidays and a fill in doctor told me. After a month of worry and crying because the doctor was talking about termination and a bunch of other abnormalities that could be associated with the ventricles, my doctor finally returned. She looked at my charts and I asked her what she thought of all of this and she said she wouldnt have even told me! She said she would have waited and did a follow up ultrasound and if they were still dialated she would then have discussed with me what the prognosis was. She said that a lot of doctors are not aware how common it is for ventricles to start out larger and shrink to normal, or even stay enlarged but cause no problems. She fortunatly had seen this a few times before and was wonderful in helping me cope with the possibilities of what may happen. My son also had a club foot so her only concern was that it could be connected with a neuro muscular disorder but she said thats unlikely and that all my tests indicated he was otherwise healthy. After several ultrasounds and they finally did decrease to a high normal, I was finally at ease knowing they had gone down. She said that its been just recently that they have been looking at the ventricles closely, some doctors dispute the actual size which would be considered normal or not normal. The majority would say 9mm is the top of normal, while others say that 12mm would be normal. She also mentioned that there are probably thousands of people walking around with enlarged ventricles but you would never know as the ultrasounds have advanced so much. She said that ultrasounds can be a blessing but also a real burden now a days! I totally agreed with her!! Basically through the whole pregnancy she stayed very positive and assured me that worst case scenario...was even relatively positive! She was my saviour!! Most doctors want to cover their ass so tell you worst case scenario and then you end up having a healthy baby...but at least they are covered should something be wrong. I know it seems so scary right now, but stay positive and push through.

Nicole2216 - Thursday, 8 May
I read your blogs! Hope all is well hun.

lin - Wednesday, 7 May
Hi there, sorry I havent responded to you yet. I just spoke with my friend again today and she said that her doctor did not give her and MRI until after the baby was born. Once the baby was born everything looked good, however they ventricles were still enlarged, but were not doing any damage. I hope things work out well for you and your baby, I know how stressful this situation is as I was there myself not too long ago. My thoughts are with you.

Nicole2216 - Monday, 28 April
Not a problem.. If you need to talk i am here. And yeah my little cousin had the bleeding and he is fine!

Nicole2216 - Saturday, 26 April
you know whats best for you. Thats all it boils down to really. You know how much love you have to give a child. But i have read so many stories where women have terminated and the heartbreaking news that there was nothing wrong. The third trimester is where all the changes can happen. keep me posted please.

Nicole2216 - Saturday, 26 April
hey hun, just checkin to see if your ok.. I read your recent blog.. How are u holding up?

Nicole2216 - Thursday, 24 April
Ive never heard of calcium deposits in the brain? What do they mean? Like in regards to a choroid plexus cyst? Don't be nervous!! I know that its hard to say that because when i went into my level 2 ultrasounds i was freaking out like crazy and i could barely eat or sleep. Are you feeling your baby move alot? I am 23.5 weeks and i only feel him sometimes. He drives me crazy. I love feeling him though. Thats good your baby is moving! That is one of the most important things.

Nicole2216 - Wednesday, 23 April
No problem! Sorry i havent been on in a few days, hows everything? Anything new?

mylittleman - Friday, 18 April
I'm glad to help, gosh, I felt so much better when people responded with similar situations when I was pregnant! Yeah, it is definitely so encouraging that they dont see anything else wrong with any other systems/organs. One of my patients the other day was 20 years old, has had hydrocephalus since birth and has a shunt. He went through alot more in the beginning years of his life but he is a totally normal 20 year old now! He was in the hospital to have the shunt moved from his peritoneal space (by lungs) to his abdomen. He hadn't been in the hospital in 4 years so he is doing remarkably well. Nothing else is affected by his hydrocephalus so that should be encouraging to you!!!
I have seen some kids with slight developmental delays but usually nothing severe or anything that you would notice automatically....everyone is so different! If you have any questions about shunts/hydrocephalus, etc. drop me a message. I work with them everyday!
Your little one may not even need one. As long as he is healthy and growing, gaining weight it may not even be a problem except for extra dr. visits. Hang in there and keep me updated!

Nicole2216 - Thursday, 17 April
hey! I am on the ventriculomegaly site as well and i would just like to tell you that my son's ventricles went from 11 down to 8..and i am in the middle of the second trimester. I personally wouldnt have a fetal mri done until my child's ventricles were over 12 mm.. I think you will be fine!! Don't worry about it. Since your amnio came back good and everything else looks fine.. I wouldnt think too hard on it. And yes, its definetely a possibility of them measuring wrong. Especially if its not at a level 2 ultrasound.

mylittleman - Thursday, 17 April
Hi---I know how frustrating all the level II u/s and waiting can be. I had 5 Level II and in the last month of my pregnancy had an u/s in the office every week. They went from saying my baby had a hole in the heart, and downs syndrome, to brittle bone disease-unsure how sever, to mild brittle bone. We had him and turns out he has something called cleidocranial dysostosis whic affects his collar bones and head bones. He has no collar bones and his head bones are underdeveloped so his head is very soft! But he is very healthy and doing wonderfully!
It sounds like your baby is doing wonderfully too. You just never really know how well your baby is going to do until he/she is born. Hang in there! Ask my any questions you want!! I work with LOTS of shunts and hydrocephalus kids!

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