Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 >Ethan Adnan (8-25-00) 5 weeks early, VSD Dawn, I just wanted to share my story about my son's VSD with you... maybe it will give you some hope. When he was 24 hours old, the pedi noticed a " whoosh " and asked to see him the following day in her office. At the next visit, she heard the " whoosh " again, let me hear it, and then scheduled an echo cardiogram for him. During the ECG, nursed throughout the procedure, only crying (intensely) when they removed the taped leads from his chest. About an hour later, I learned that he had a 3-4 mm hole in the lower ventricles. The pedi discussed the likelihood that he'd need corrective surgery at some point, but wanted to wait until he *needed* it, or around his first birthday if it didn't improve on his own. I started doing some reading about VSD, since wasn't doing so well getting milk into his body and growing. I learned of research articles that showed that bottle feeding caused additional strain to his heart and lungs, and that breastfeeding preserved his normal breathing functions. I learned that because his oxygen-rich blood wasn't as rich as it should be, because it was mixing with the deoxygenated blood from the right ventricle, that events that caused him to cry would make his forehead and lips turn blue. He also had mild jaundice, which meant that he still wasn't getting enough breastmilk. We did the SNS with either formula or EBM for a few weeks and weighed daily, sometimes more often, to watch that he was actually gaining. Once he began gaining, our pedi got more interested in talking about potential surgery. When Jeff was 6 months old, we moved across the Atlantic Ocean, from Texas to Portugal -- a military move. The doctors here immediately asked us to let them examine Jeff, and we agreed. His " whoosh " was very distinct, and the doctors wanted to see him at least once a week. Finally, one pedi explained to me that the louder " whoosh " was a good sign that his hole was closing. She compared it to covering a garden hose with your thumb, that the water would spray harder because it was being forced through a smaller opening. She suggested we do a US to see how his heart was functioning, and we could tell then that it was closing on its own. Jeff was about 15 months old then. Jeff is going to turn 3 on New Year's Eve, and is practicing World Class Wrestling maneuvers with his 8 year old brother. He tackles the border collie and pins her to the ground on occasion. He's shy when he first meets strangers, but then quickly warms up and climbs on their shoulders -- whether they're willing to play or not. Most of my friends here wouldn't know he has a hole in his heart if we didn't tell them. I figure that the muscles in his heart gradually got stronger and bigger, and that as they got bigger, they made the hole a little smaller with each heartbeat. I hope that by the time Jeff is old enough to start Kindergarten, there won't be any traces of that " whoosh, " and in reality, that might happen. Until then, we still have to remind ourselves that our rambunctious 2 year old has a hole in his heart, and remember to tell doctors and dentists about it, so they can take necessary precautions. I've also chosen to delay his vaccines until he can verbalize any unusual feelings or sensations he may have, as a fast heartbeat may be an indication of an adverse reaction. I take his blue lips into consideration when the outside temperatures start dropping and remember that an extra t-shirt under his clothes will help keep him from getting those scary blue lips. If I didn't know better, is a normal little boy, full of energy. He doesn't know he has a hole in his heart. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 Thanks :-) I love hearing these stories, makes me feel better to realize he won't always be a newborn with a scary defect of a major organ. The biggest difference with Ethan is that while VSD is the most common heart defect, he has a sub-pulmonary VSD (called supracristel) and that is much rarer. It won't close on its own - but there is a slight chance that as he grows - and his heart gets bigger - that he won't be affected as much by it. It may grow (stretch) as his heart grows though, or it just may continue to affect him. His hole has changed though - it was 4-5mm at birth and almost a month later it is about 5.5 mm. So who knows what will happen? They are planning to do surgery for the simple fact that it won't close on its own. But at least I'm not scared about it so much now! Dawn and clan Ethan Adnan (8-25-00) 5 weeks early, VSD Elijah Iman (14 months) and Ibrahim Jerry (3) ***********My Angels************ Kiara Nichole - born still at 21 weeks - 5-16-96, 22 weeks, gained her wings at 15 hours old 2 m/c angels ********************************** VSD > > > >Ethan Adnan (8-25-00) 5 weeks early, VSD > > Dawn, > > I just wanted to share my story about my son's VSD with you... maybe it > will give you some hope. > > When he was 24 hours old, the pedi noticed a " whoosh " and asked to see him > the following day in her office. At the next visit, she heard the " whoosh " > again, let me hear it, and then scheduled an echo cardiogram for > him. During the ECG, nursed throughout the procedure, only crying > (intensely) when they removed the taped leads from his chest. About an > hour later, I learned that he had a 3-4 mm hole in the lower > ventricles. The pedi discussed the likelihood that he'd need corrective > surgery at some point, but wanted to wait until he *needed* it, or around > his first birthday if it didn't improve on his own. > > I started doing some reading about VSD, since wasn't doing so well > getting milk into his body and growing. I learned of research articles > that showed that bottle feeding caused additional strain to his heart and > lungs, and that breastfeeding preserved his normal breathing functions. I > learned that because his oxygen-rich blood wasn't as rich as it should be, > because it was mixing with the deoxygenated blood from the right ventricle, > that events that caused him to cry would make his forehead and lips turn > blue. He also had mild jaundice, which meant that he still wasn't getting > enough breastmilk. We did the SNS with either formula or EBM for a few > weeks and weighed daily, sometimes more often, to watch that he was > actually gaining. Once he began gaining, our pedi got more interested in > talking about potential surgery. > > When Jeff was 6 months old, we moved across the Atlantic Ocean, from Texas > to Portugal -- a military move. The doctors here immediately asked us to > let them examine Jeff, and we agreed. His " whoosh " was very distinct, and > the doctors wanted to see him at least once a week. Finally, one pedi > explained to me that the louder " whoosh " was a good sign that his hole was > closing. She compared it to covering a garden hose with your thumb, that > the water would spray harder because it was being forced through a smaller > opening. She suggested we do a US to see how his heart was functioning, > and we could tell then that it was closing on its own. Jeff was about 15 > months old then. > > Jeff is going to turn 3 on New Year's Eve, and is practicing World Class > Wrestling maneuvers with his 8 year old brother. He tackles the border > collie and pins her to the ground on occasion. He's shy when he first > meets strangers, but then quickly warms up and climbs on their shoulders -- > whether they're willing to play or not. Most of my friends here wouldn't > know he has a hole in his heart if we didn't tell them. > > I figure that the muscles in his heart gradually got stronger and bigger, > and that as they got bigger, they made the hole a little smaller with each > heartbeat. I hope that by the time Jeff is old enough to start > Kindergarten, there won't be any traces of that " whoosh, " and in reality, > that might happen. > > Until then, we still have to remind ourselves that our rambunctious 2 year > old has a hole in his heart, and remember to tell doctors and dentists > about it, so they can take necessary precautions. I've also chosen to > delay his vaccines until he can verbalize any unusual feelings or > sensations he may have, as a fast heartbeat may be an indication of an > adverse reaction. I take his blue lips into consideration when the outside > temperatures start dropping and remember that an extra t-shirt under his > clothes will help keep him from getting those scary blue lips. > > If I didn't know better, is a normal little boy, full of > energy. He doesn't know he has a hole in his heart. > > > > > Give the Gift of Life Breastfeed! > http://www.lactivist.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 > Finally, one pedi > explained to me that the louder " whoosh " was a good sign that his hole was > closing. We were told the same thing. My youngest was born with a very loud murmur. The pediatrician was glad it was loud instead of soft she said it usually means a smaller defect. We took her to the cardiologist when she was 3 days old and they found a 2 mm vsd. This closed up on its on by the time she was a year but she did gain weight slowly. Just thought I would share a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 My daughter also was diagnosed with a heart defect - at about 12 hours after birth. They checked her vitals and found her heart rate to be about 270. Her particular defect is called WPW syndrome. It involves the electrical pathways in the heart. The first month was the hardest and we were in the ER several times. She was put on a regular medication - propranolol (inderol). When her heart rate would double, she would basically pass out. Not something easy to handle with a 2 week old. I learned how to manage an episode on my own. And she hasn't had one (that I know of) since the 4th of July, 1999. She is now 16 months old. She's not on her medication anymore and there is a good chance that she will grow out of it. We still see our cardiologist for regular EKG's. But, for now she's very happy, active and INTELLIGENT! She was crawling by 6 months and walking by 10 months. Now she runs and climbs and rides her bike. She is speaking in 2,3 and 4 word sentences and can already sing her ABC's. At the beginning I was afraid that we would have to lead an altered life style and shelter her. But, nope! It's amazing what these babies go thru and how much determination they have! I just wanted to share a bit of my story too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 In a message dated 9/22/00 7:25:09 AM Pacific Daylight Time, Nitome@... writes: > At the beginning I was afraid that we would have to lead an altered life > style and shelter her. But, nope! It's amazing what these babies go thru > and how much determination they have! I just wanted to share a bit of my > story too. > Ah how wonderful I love to hear happy stories !!!! Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 In a message dated 9/21/00 7:03:09 PM Pacific Daylight Time, dawn@... writes: > His hole has changed though - it was 4-5mm at birth and almost > a month later it is about 5.5 mm. So who knows what will happen? They are > planning to do surgery for the simple fact that it won't close on its own. > But at least I'm not scared about it so much now! > > Dawn, I am keeping your son in my prayers, he sounds like a little trooper.I pray all goes well. Rhonda Quote Link to comment Share on other sites More sharing options...
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