Hello, I just wanted to introduce myself. I am a stay at home mom with a HLHS baby girl. I wish i would have known this group existed along time ago when we found out about Hailey's heart prob a year and a half ago. My name is Sarah. We have been though 2 of her 3 heart surgeries so far and are getting ready to go back to the hospital next week for her 3rd part of the nor-wood procedure. She has done well with her others with a few complications like getting fluid in between her lungs and chest walls(was in the hospital for almost 2 months with that one) umm she crashed after the first surgery for 5 mins the first time and 1min 40 sec the second time due to her having a valve being pulled back in to her heart from being given benadryl. The doctors had to do emergency surgery for that to make the valve smaller so it would not be pulled back in anymore. ummm she spent about a total of 7 to 8 months in the hospital off and on and about a year in birth to three to catch up. We did not know she was even sick tell she was six months old. when she was born she was only 5lb 11oz and by the time she was 6month old she was only 7lb and like 6oz. Her old pediatrician always said there was nothing wrong and kept waiting it out. finial she sent up to Morgantown WV to see an endocrine and she told us that our little one had a heart murmur and admitted us in the hospital to have an ecko do and the next day the peds cardio doc was in telling me that she had HLHS and a whole in her heart and that they would need to do surgery. they told us that they have never done this surgery on a 6th month  old and did not know how things were going to turn out. they said the only reason she lived as long as she did was b/c of the whole in her heart and after they were monitoring her for a few weeks they said it was closing up and if it did we could have gone in and found her gone any day. But the surgeries went well and she is now 2 years 2 months and some odd days old and is about 20lbs and acts like a typical 2 year old driving momma and daddy crazy.

Well that's our story and it will be great to get to know all of you. I am glad i finial found some moms that i will be able to talk to about this stuff.

Hi Sarah.  I don't frequently come to this site.  It seems like it's been once every 4 or 5 months.  I saw that you posted not that long ago so I'm hoping you're still on here.  Anyways, what a scary time for you!  And then to get the info. that they have never done this surgery on a 6 month old.  I can't even imagine how you felt!  We found out about our son at a routine 18 week ultra sound.  I guess I feel "blessed" to have known in advance.  We were able to find a great hospital and surgeon.  My son has had one surgery so far (He's 2 1/2 and has Truncus, a rare CHD)  We've been told that he will probably need another one next summer.  Right now he's as normal as any 2 year old.  It is good to talk with other heart families... We all know what you're going through.