tag:blogger.com,1999:blog-1934644049324300364.post1951747249335948597..comments2023-11-03T04:58:44.961-04:00Comments on Big Girl Jadyn & her family...: 14 months oldCasey and Jaysonhttp://www.blogger.com/profile/11532372483181236494noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-1934644049324300364.post-48586544632415895292011-03-20T20:50:53.626-04:002011-03-20T20:50:53.626-04:00Hi Lisa
I don't know if you'll ever come b...Hi Lisa<br />I don't know if you'll ever come back to check this but my email address is KC1998@aim.com if you'd like to email me about anything, questions, etc...<br />And yes, we had Jadyn's MRI follow up appt with Ahn on 2/1 so he was talking about her :-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1934644049324300364.post-84292342531922064482011-03-19T20:45:37.173-04:002011-03-19T20:45:37.173-04:00Thank you so much for all of this information!! L...Thank you so much for all of this information!! Last Friday I was at Hopkins getting an ultrasound and your friend Jen was my nurse. I am 35 weeks pregnant and my daughter has fetal hydrocephalus. It was detected at the 18 week sonogram. I was telling her I was getting nervous as I got closer to delivery and I was of course reading all negative info on the internet so she shared with me your blog. WOW. So I have now traveled your journey. Thankfully, my neighbor is the head of fetal radiology at Hopkins so when we were so worried around the 18-20 week mark he was instrumental in calming some of our fears. I had the blood test for bacteria, the cvs, amnio, microarray of genes, kidney ultrasound for baby, echocardiogram for baby and 3 MRI’s. Now we are gong with bi-weekly ultrasounds. They have found no other issues besides the aqueductal stenosis. At 18 weeks her ventricles measured at 1.5, at 30 weeks 2.1, and since February they have been at 2.5. The hardest part for me is the variability or lack of certainty for the outcome and her development. So yes I am nervous. To make things even stranger we have same neurosurgeon- Dr. Ahn. I have transferred al of my care to Hopkins per his request. Upon birth she will have a u/s of her brain to determine if immediate surgery is needed. I see yours is being monitored and I wonder if we will end up doing the same. Part of me worries about the brain surgery but the other part worries leaving the fluid and constantly going for checkups being nervous each time for results to see if the fluid has changed….<br /><br />I think Dr, Ahn saw how worried we were on 2/1 when we met with him as he said he just had a consult with a family with a year old daughter with relatively the same fluid levels that has not needed surgery and is meeting her milestones. Were you there on 2/1? After reading your story I have a gut feeling he was referring to you. Well I cant thank you enough for taking the time to share your story and offering me some hope!!! <br /><br />I will keep reading your story and wish you the best of luck in your journey as well.<br /><br />Lisa and Baby CatherineAnonymousnoreply@blogger.com