From: "Elise Martin" To: Subject: Re: [cherubs] New Member - Lots of Questions Date: Thursday, May 25, 2006 9:41 AM Hello Ash, My son was born with LCDH and weight and eating and reflux are always issues with any baby born with something. We have been blessed with a team of therapists since he was BORN. He received PT and other therapy in the NICU, in the PICU and after. We are still working on things with him. He doesn't like anything near his mouth unless he puts it there but this could also be an issue of his age. Our doctors at UVA told us there is a slight chance of re-herniation as they get older though I have heard of cases that the child had multiple re-herniations. We isolated Noah from other children for the first year because of his lungs and he could get a cold that would send him back in the PICU. He actually went back for a bowl obstruction. All those organs were jumbled up at birth so there are other issues that could arise. He sees his surgeon, Dr. Rogers, every year and will continue to do so. He also sees Dr. Boyle every year as follow up because he was on ECMO for 8 days. Noah did not loose the artery but we still see the doctors and therapists on a regular basis. Your daughter will probably never be as large as her sister these kids to lag behind in size and weight because it takes more for them to breathe than a *normal* child. It also depends upon each case. Each is different. Noah was LCDH and now has 100% of both lungs developed. His tests come back *almost* normal. He had his intestines and part of his stomach herniate. We were lucky. We were also diagnosed late. I had an ultrasound at 24 weeks and everything was fine. Well, I wanted to know the sex and didn't find out at 24 weeks because we wanted to be surprised. Then I looked around and you can't prepare for a baby without knowing the sex anymore! So I had another ultrasound and the shoe dropped so to say. That was at 31 weeks. We were always told that his was a "mild" case. While we were at the hospital, there was another CDH baby who had more herniated and required more care and is now home but she has more issues due to less lung and more time on ECMO and vents so each case is different. Was your daughter's CDH considered "mild" and even if it was your doctors should tell you what to look for and there should be some sort of follow up care offered because she is different. Noah was also g-tube fed from 18 weeks old to 18 months old. Not completely but we think he had issues with his throat because of ECMO and tubes. Although his artery was repaired they say that the scaring and such may have made swallowing harder for him. I hope I have helped. Where are you located, what hospital did your daughter go to? Elise Ashutosh Agarwal wrote: Hello, I just joined this listserve last week - our daughter Ashna (one of the twins) was born with left side CDH. She is now 8 months old and doing fine (didn't have any other problems - not that anybody has found so far anyway). Ashna is now 8 months old and is doing fine - her weight has lagged behind the other daughter though. Since the last week or so as I read the emails from everybody, I have started wondering if we have been taking this thing too lightly! I mean we were extremely worried when we found out about CDH since the 30th week of pregnancy and so on, but since the time Ashna got released from NICU, we have slowly become relaxed over time - maybe because we did not see any noticeable issues (except her growing weight lag behind her twin sister). But just a couple weeks back Ashna started vomitting and did not eat/drink anything for 16 hours, so we had to rush to ER. After tests they found that she had urinary tract infection. Since then she seems to have lost almost a pound or two. That incident and the fact that I started reading emails on this listserv has now raised a bunch of questions that I am hoping somebody can help with: 1. Should we be more concerned about things than we are? 2. Are there tests that Ashna should be going through on regular basis? - Orthopedic exam, pulmonary exam, XXXXX exam??? 3. I read about this VQ scan - is that something that might be applicable in our case? 4. Some emails mentioned about some blockage of bowels or something (needing surgery) - what are the symptoms/tests that indicate that this might be an issue? 5. Should we be taking some other precautions with her or watching some things? Sorry for such a long winded email but I have to ask as our Pede does not seem to worry about anything and her surgeon also seems to be pretty relaxed about the whole thing. Now I have suddenly started wondering if this attitude is because of their inexperience with CDH or something! I would really appreciate any insight/comments/suggestions/advice that you can provide. Thanks, Ash __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support http://www.cherubs-cdh.org 270 Coley Rd. Henderson, NC 27537 USA Phone: 252-492-6003 Fax: 815-425-9155 SPONSORED LINKS Article health wellness Center for health and wellness Health and wellness Health and wellness program Health wellness product Health and wellness job --------------------------------- YAHOO! GROUPS LINKS Visit your group "cherubs" on the web. To unsubscribe from this group, send an email to: cherubs-unsubscribe@yahoogroups.com Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. --------------------------------- __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! 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