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new..piog

Posted by on Aug. 28, 2009 at 1:23 PM
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Hi. My name is Jessica and I have 3 kids! 2 boys and a girl. My oldest is Jaiden(M-5in nov), my middle is Dantae(M-2 in oct), and my baby is Sharon(f-5 months). Jaiden was born at 31 weeks after my water broke at 27 weeks..he has a functional murmor, a calcification in his descending aorta, as well as peripheral pulmonary stenosis...his heart issues are fine, and are not even "issues". Jaiden has had a lot of probelms and at almost 5 he has had 14 surgeries for various things. Dantae was born at 36 weeks after 10 weeks hospital bedrest for a chronic abruption. He was in the nicu for 2 weeks and did fairly well. He has no(known) heart issues, but he does have neurofibromatosis and airway issues. Our third baby..we thought third time is the charm! So far, she has been perfectly healthy! She was born at 36 weeks, and was a little small at 5 pounds 2oz. Since birth she has been a sleeper, and always sleeps. She is breast fed and has remained small but this last month she has sarted to loose a little bit, and I thought it was due to the sleeping. Her pediatrician was concerned and sent her for labs for things like hormone inbalance, dehydration etc..when those came back normal he began to get very concerned and saw her in the office at 9pm on monday the 24th. Tuesday she was seen bright and early at the cardiologists office where they preformed an echo. She was found to have a 1.7mm hole in one of her cusps(no biggie), and the big deal..her left anterior descending coronary artery was found to be comming off the right coronary artery...so the cardiologist said she should be admitted for a failure to thrive workup because she didnt think this heart defect could cause the sleepiness and poor weight gain...she had a full gi workup and has mild reflux...over the couple days in the hospital she gained nothing(on 24 cal formula not breastmilk)..so they determined my milk was fine and wasnt the issue so she was allowed back to breast...Then they send us to Boston childrens hospital(we live in ct)...boston sedates her and gets more pictures. Lots of doctors come in and keep saying this isnt right..but have come to the conclusion that the left coronary comes off the right, and they dont know where it goes from there. Her heart is functioning well, and she is not in any distress. They say that this can cause her to have an acute mi as she grows and becomes active etc...so they want to do a cardiac catheterization next week to see exactly what these arteries do. depending on the results we will discuss if she is better to have the artery moved now, or when she is older...they say the surgery is very risky. they also say that as rare as a coronary artery anomoly is, she has the rarest kind and they havent seen it before.  i am scared and i have no idea what to do..has anyone had anything like this?? ha anyone's child had a cath done? how did it go? she is 5 months old and she is 10 pounds 7oz...as of discharge.

by on Aug. 28, 2009 at 1:23 PM
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alina2
by New Member on Aug. 30, 2009 at 10:34 AM

my son has had 3 cariac caths done since birth and two open heart surgeries. the cardiac caths are vey informative for the docs, they are able to then see inside what the problem is. it is a simple one day or over nite procedure, i mean it takes about an hour and depnding on what they find mayb overnite stay, in my sons case with his, the first cardiac cath was to save his life. his o2 levels were in the 50s and they used it to tear a hole for a passageways for more blood to get through, with his second cardiac cath they found that he was in need of his second open heart immediatly. and the third cardiac cath was to stretch an atery to reduce narowing. he is doing great now weighing 21 lbs and 10 mo old. cant even tell he has major heart issues. hoe eveythig goes well woth you little one.

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