Million Dollar Babies Hypoplastic left heart syndrome babies - RaisingThem Group RSS Feed http://www.raisingthem.com/groups/ Sun, 12 Oct 2008 08:32:05 -0400 Sun, 12 Oct 2008 08:32:05 -0400 RaisingThem RSS Feeds http://www.raisingthem.com/images/logo.gif http://www.raisingthem.com/ http://www.raisingthem.com/posts/view/60612/ Hi Tammy. I haven't visited this site in a LONG time, but I'm glad I checked it today. My son is now 15 months old. He has Truncus Arteriosus, not HLHS but I joined this group for support and to share stories. ... Tue, 29 Jul 2008 23:52:53 -0400 http://www.raisingthem.com/posts/view/60612/ Hi Tammy It has been so long since my son had a problem eating I will have to think about how long it took. I know he didn't take to my wifes natural ability to feed but he did better with a bottle. ... Mon, 28 Jul 2008 17:34:27 -0400 http://www.raisingthem.com/posts/view/60612/ I have a 2 mo old baby boy with HLHS. He had norwood procedure when he was 2 wks old. After being home for 2 wks we had to spend another week in the hospital due to his wound getting mrca staff infection. ... Mon, 28 Jul 2008 15:06:01 -0400 http://www.raisingthem.com/posts/view/34674/ Welcome new members! Please take a moment to introduce yourself here. We look forward to hearing from you! Sat, 9 Feb 2008 00:17:16 -0500 http://www.raisingthem.com/posts/view/32448/ Thanks Lisa I am still having a hard time taken it in that CHD don't have all the funding they need. We were told that when tristan was born but there are so many uneducated doctors and nurses about it in most hospitals. ... Sat, 26 Jan 2008 10:13:01 -0500 http://www.raisingthem.com/posts/view/32448/ Congenital heart disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. ... Fri, 25 Jan 2008 16:53:47 -0500 http://www.raisingthem.com/posts/view/30029/ I'm going to attempt to explain truncus... Truncus is a rare heart defect (1% of CHD's) where there is one "trunk" that leads out of the heart instead of a pulmonary artery and an aorta. ... Sun, 6 Jan 2008 22:46:44 -0500 http://www.raisingthem.com/posts/view/29848/ Wow David, I know exactly how you feel about not knowing. We didn't find out until tristan was 17 hours old that he was a HLHs and then was taken from me to Children's National Medical Center in Washington DC. ... Sun, 6 Jan 2008 13:55:56 -0500 http://www.raisingthem.com/posts/view/29848/ yes it was emotionally draining and physically draining. I am so glad that my wife has 4 sisters and her mother is still living so we had plenty of help with our then 1 yr 9 mo old daughter. ... Sat, 5 Jan 2008 14:33:55 -0500 http://www.raisingthem.com/posts/view/29848/ Hi David. I'm sorry you had to be in the NICU by yourself. That must have been a very difficult time, to say the least. I know the support of having my husband there helped- someone else who was just as scared. ... Sat, 5 Jan 2008 12:23:29 -0500 http://www.raisingthem.com/posts/view/29848/ he was taken to a hospital about 5 miles away and put in the NICU. My wife had to stay behind because she had a c section and couldn't get around. She was stuck there for a week. I was in the NICU by myself confused and scared. ... Sat, 5 Jan 2008 11:07:22 -0500 http://www.raisingthem.com/posts/view/29848/ I know what you mean. My ultra sound was taking a long time. (Longer than it did with my first son) At first, I didn't think much of it, but the tech. was vague in what she was telling me. ... Sat, 5 Jan 2008 00:53:02 -0500 http://www.raisingthem.com/posts/view/29848/ no it was like being hit in the face with a brick. We had a perfect little boy and then on the 2nd day all hell broke loose. That night was a blur because of the shock I was in. I couldn't even hardly make decisions because of the shock. Sat, 5 Jan 2008 00:37:07 -0500 http://www.raisingthem.com/posts/view/29848/ We found out at our routine 18 week ultra sound that our baby had truncus arteriosus, a rare CHD. I think whenever you find out it is very scary, and it leaves you with a lot of questions. ... Sat, 5 Jan 2008 00:27:59 -0500 http://www.raisingthem.com/posts/view/29848/ when he was 2 days old Sat, 5 Jan 2008 00:20:43 -0500