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| Million Dollar Babies Hypoplastic left heart syndrome babies |
| Public online group |
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| Hi David I just wanted to say welcome and it is nice to meet other parents with HLHS children. How old is your little one? I look forward to talking with you soon. |
| Posted by steph on 01/04/2008 09:44 PM
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| thanks my son is 2 1/2 |
| posted by David on 01/04/2008 10:34 PM
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| Hi David. How/When did you find out that your son had HLHS? |
| posted by Lisa on 01/04/2008 11:45 PM
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| when he was 2 days old |
| posted by David on 01/05/2008 12:20 AM
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| 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. Did you know anything about HLHS when your son was diagnosed? |
| posted by Lisa on 01/05/2008 12:27 AM
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| 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. |
| posted by David on 01/05/2008 12:37 AM
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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. When she went to get the doctor to look at the ultrasound, I was suspicious but still didn't think much of it. After all, my first son didn't have any problems and a doctor came in to confirm his ultrasound too. When the doctor came in, he told me right away what he saw and that he thought it was truncus. He told me I would have to get an echo done to confirm it. My response to all of it was "Okay" and I said it in a matter-of-fact tone. I was in complete shock and really didn't know how to respond. I wasn't grasping the seriousness of it at that moment.
How did things go from there? Did you have a hospital nearby that could do the surgery? |
| posted by Lisa on 01/05/2008 12:53 AM
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| 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. We live in Louisville KY and they have a wonderful hospital there. The first week was a blur because of the shock but after that I went to angry. I was angry that with the 4 ultrasounds and amniosynthesis no one could tell us our baby had a problem. I then went to stressed beyond the max. I guess you could call me a NICU and PICU veteran because I don't get as worried as before. I know what they are capable of and there is nothing I can do about it. God will handle things. |
| posted by David on 01/05/2008 11:07 AM
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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. Because we knew about the truncus beforehand, I was able to deliver in the hospital where he would have his surgery. We have an older son as well so we had to take care of him too. The hospital we were at is about 1 1/2 hours away from our home. We stayed at the Ronald McDonald house. It was hard having to take care of a 3 year old and have your other son in the hospital. It was emotionally draining.
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| posted by Lisa on 01/05/2008 12:23 PM
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| 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. Everytime we go to the hospital her families steps up to the plate. I am so happy that I have them. |
| posted by David on 01/05/2008 02:33 PM
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| 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. We were very angry that after 9 ultra sounds they didn't pick it up but then we turned all our focus on Tristan. He had the Norwood at 7 days old because he was a large baby and doing well. It was scary though because it was three days after he left me that I could go see him. My OB let me out of the hospital 2 days early. I too had a c section. Has he had all three stages already? How did they go. Tristan is exactly 4 months out of the Glenn and growing like a weed. |
| posted by steph on 01/06/2008 01:55 PM
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