Moms of childrens with heart defects - Mothering Forums

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#1 of 122 Old 05-18-2007, 01:24 AM - Thread Starter
 
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This tribe is for all moms who have kids with heart defects. I know i need someone who understands what an ECG, Echo and BPM are.

So lets talk....
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#2 of 122 Old 05-18-2007, 02:46 PM
 
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Hi Niki

My daughter Madelyn was born with some pretty severe heart defects. I know how hard it can be when no one you know understands all the things that you go through.

Maddie had Shones complex, Mitral valve stenosis, and among other complications her heart only pumped at 10% of capacity. When she was just over 9 weeks old, she received a heart transplant.

Now almost 3 years later, Maddie is doing pretty good. We still have many Dr appts, blood work, Ekg's, echo's, Bp checks, etc... I can get pretty crazy, but we are hanging in.
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#3 of 122 Old 05-18-2007, 02:55 PM
 
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Hi. My dd Piper has hypoplastic left heart syndrome. The left side of her heart didn't develop so she's needed surgeries one at 4 days old one at almost 4 months old and the next one she'll have in the next year sometime.
She is doing pretty well, but I am nervous about this next surgery. Even though it's the least risky, it is still pretty scary, especially since she's so much older and will probably want to know what is going on.
I am glad for this thread.

I know what an ecg and an echo are, but what is a bpm?
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#4 of 122 Old 05-18-2007, 03:35 PM - Thread Starter
 
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I'm so glad that you guys have joined me.

My dd has Congential Junctional Ectopic Tachycardia- she goes into a junctional rhythm and her heart races at 252 bpm (beats per minute) we found out when she was 2 weeks old.

She had surgery on April 9th to ablate the bad parts of her heart and hope that it would make her go into sinus rhythm with a lower heart rate and it worked. Now she just has to grow and get bigger. Her cardiologist hope that she will keep her bpm and rhythm regulated or he will put in a pacemaker. Her defect is very rare and unfortunatly that made it difficult to figure out what treatment will be. We have been told there are 31 cases of Congential JET every diagnosised, most cardiologist have never even heard of it

I have pictures of her in my sig.
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#5 of 122 Old 05-19-2007, 06:34 PM
 
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My son has Hypoplastic Left Heart Syndrome. He is 7.5 and had his Fontan last May, other than some pleural effusion he sailed right through the surgery and recovery...out of the PICU in less than 24 hours. He is supposed to have a cardiac cath this June as his doc thinks that scar tissue on the Aorta (from the 1st surgery) is causing pressure and leakage in the aortic valve. I am hoping that the echo may be exagerating the leaking and we will not have to do a balloon stent. On the positive side, this last surgery has left us with a new kid! He has energy and "air" to keep up with other kids and ride his bike. We are blessed. On a side note, he loves the hospital. He had a very positive experience during his stay for the last surgery and is very excited to get the chance to live it up again...movies, treats, tv!
My daughter was born at 35ish weeks with Shones complex. She had surgery at about 8 days old and is perfectly healthy. She has checkups every 2 years.
I was wondering how many of us had Dad's exposed to Agent Orange in Vietnam? My mom found an article stating that there are many 2nd generation offspring of vets with heart and kidney defects...anyone ever hear of this?
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#6 of 122 Old 05-19-2007, 11:22 PM
 
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Caledonia, that is very interesting about the agent orange, I have never heard that before. My dad is a Vietnam Vet.... I would love to hear more about that! My youngest daughter Maddie was diagnosed with a severe form of shones, among other abnormalities.

There is also a couple of studies out that show a link from taking certain anti-depressants to congenital heart defects.
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#7 of 122 Old 05-22-2007, 12:31 AM - Thread Starter
 
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#8 of 122 Old 05-22-2007, 12:31 AM
 
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Quote Niki_73 My dd has Congential Junctional Ectopic Tachycardia- she goes into a junctional rhythm and her heart races at 252 bpm (beats per minute) we found out when she was 2 weeks old.

She had surgery on April 9th to ablate the bad parts of her heart and hope that it would make her go into sinus rhythm with a lower heart rate and it worked. Now she just has to grow and get bigger. Her cardiologist hope that she will keep her bpm and rhythm regulated or he will put in a pacemaker. Her defect is very rare and unfortunatly that made it difficult to figure out what treatment will be. We have been told there are 31 cases of Congential JET every diagnosised, most cardiologist have never even heard of it


Wow!! Niki this sound like the same thing my son was diagnosed with WPW and SVT though, but rapid heart rate is the problem! Wonder what the difference between this is??

My son Patrick almost 9 yrs old {-was born at 36 weeks with Wolf Parkinson White Syndrome, Supraventricular Tachyardia (rapid heart rate) 360 BPM diagnosed at nearly 2 weeks old, and recentely diagnosed with Sensory Integration Disfunction Disorder. We did elect for the heart cath in 2005 as we were in hopes to rid him of all meds. and tachyardia. Well it did work enough that he is off all the meds. but rapid heart rate does sometimes occur but maybe only 2 times per year. Dr. says as long as it is not too frequent we can keep him off the meds. Yeah! I learned that beta blockers can make you gain nearly 1 pound per month and he was only those for nearly 7 years. ugggh!!! I kept asking dr.'s if this was possible to atribute his weight with the meds. Nope was the answer I kept getting, but then one day read an article by a dr. in Houston that stated Med's that make you Fat!! Yep you got it Beta blockers was on the list! So then is when we decided to go for the surgery instead of waiting till he is older approach that we were told when he was a baby. Well I am glad I found this tribe, but it seems there are not many posts. I know there must be other mama's out there. Any good sites to share? or is this allowed on here? Chin is a good one along with many more.
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#9 of 122 Old 05-22-2007, 02:14 AM - Thread Starter
 
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Quote Niki_73 My dd has Congential Junctional Ectopic Tachycardia- she goes into a junctional rhythm and her heart races at 252 bpm (beats per minute) we found out when she was 2 weeks old.

She had surgery on April 9th to ablate the bad parts of her heart and hope that it would make her go into sinus rhythm with a lower heart rate and it worked. Now she just has to grow and get bigger. Her cardiologist hope that she will keep her bpm and rhythm regulated or he will put in a pacemaker. Her defect is very rare and unfortunatly that made it difficult to figure out what treatment will be. We have been told there are 31 cases of Congential JET every diagnosised, most cardiologist have never even heard of it


Wow!! Niki this sound like the same thing my son was diagnosed with WPW and SVT though, but rapid heart rate is the problem! Wonder what the difference between this is??

My son Patrick almost 9 yrs old {-was born at 36 weeks with Wolf Parkinson White Syndrome, Supraventricular Tachyardia (rapid heart rate) 360 BPM diagnosed at nearly 2 weeks old, and recentely diagnosed with Sensory Integration Disfunction Disorder. We did elect for the heart cath in 2005 as we were in hopes to rid him of all meds. and tachyardia. Well it did work enough that he is off all the meds. but rapid heart rate does sometimes occur but maybe only 2 times per year. Dr. says as long as it is not too frequent we can keep him off the meds. Yeah! I learned that beta blockers can make you gain nearly 1 pound per month and he was only those for nearly 7 years. ugggh!!! I kept asking dr.'s if this was possible to atribute his weight with the meds. Nope was the answer I kept getting, but then one day read an article by a dr. in Houston that stated Med's that make you Fat!! Yep you got it Beta blockers was on the list! So then is when we decided to go for the surgery instead of waiting till he is older approach that we were told when he was a baby. Well I am glad I found this tribe, but it seems there are not many posts. I know there must be other mama's out there. Any good sites to share? or is this allowed on here? Chin is a good one along with many more.

SVT and JET are very similar except that Jet rapid rate comes from the center of the heart which makes it a junctional rhythm. The doctors thought that she had SVT at first and put ice on her face and tried diojoxn but that didn't work so they then decided it was JET. She was on Propafone, flecinide, propanael, amodarone and finally atenol. How old was your son when he had his ablation? We were flown out of province because dd was too young to do it locally and of course they had never tried to ablate a JET rhythm.
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#10 of 122 Old 05-22-2007, 11:25 AM
 
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Patrick was ablated in Dec 05 he was seven years old. Dr.'s said wait till he is older like teenage years but I questioned it after being on many boards and reading many ablations done at an early age I questioned it to be done to rid him of the meds due to weight issues mainly. It was pretty successful but not 100%, but he is med free yeah!! We have since sought out chiropractic care for him and no problems since ablation and chiro. combined. He did have a few breakthroughs that's what we call them (rapid heart rate) after ablation but before chiro. care but we didn't have to seek er. We were in route once but it stopped before we arrived to er. Another breakthrough occurred and no er either but then we discover chiropractic care and no problems since and knock on wood it's been 2 yrs this Dec. I can say this coincidence or not our chiroprator didn't know of his condition and upon her evaluation of him she said his most problem area was where his heart lays. I just started crying and explained to her he had surgery to try and correct his problem with his heart. We were both deeply saddened. I personally would have tried chiro care before surgery if I would have had any insight at all about chiropractic care. Can't change what we didn't know then but I can share with others! ;-)
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#11 of 122 Old 06-04-2007, 05:19 AM
 
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I'm a newbie here, but frequently lurk the forums. My son has hypoplastic right heart syndrome, specifically pulmonary atresia w/intact ventricular septum, tricuspid stenosis, and a bicuspid aortic valve (thrown in for good measure!). He is almost 3 years old and has had 2 open heart surgeries at 8 days and 10 months, 2 caths, and will probably have his 3rd open heart surgery around age 4. He's doing remarkably well right now! I also have a new baby girl born at home (7 weeks) who is heart healthy.

I've been reading the threads in the vaccinations forum because I'm leaning toward not vaxing my healthy baby girl...but wondering if any of you with heart kids have delayed/selectively vax or don't vax at all your heart child and/or healthy kids?

Thanks and great to meet you all!
Kristen
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#12 of 122 Old 06-04-2007, 02:08 PM - Thread Starter
 
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I'm a newbie here, but frequently lurk the forums. My son has hypoplastic right heart syndrome, specifically pulmonary atresia w/intact ventricular septum, tricuspid stenosis, and a bicuspid aortic valve (thrown in for good measure!). He is almost 3 years old and has had 2 open heart surgeries at 8 days and 10 months, 2 caths, and will probably have his 3rd open heart surgery around age 4. He's doing remarkably well right now! I also have a new baby girl born at home (7 weeks) who is heart healthy.

I've been reading the threads in the vaccinations forum because I'm leaning toward not vaxing my healthy baby girl...but wondering if any of you with heart kids have delayed/selectively vax or don't vax at all your heart child and/or healthy kids?

Thanks and great to meet you all!
Kristen
hi kristen


We did not vax our healthy son and have not vaxed dd either, I'm not quite sure about vaxxing our dd. I would love some input on this too. we have not yet for all the same reason as ds but with her immune system so weak i wonder, but also why would i want to give her system the vax to fight too right?
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#13 of 122 Old 06-04-2007, 04:57 PM
 
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Chiming in. DS was born with a Ventricular Septal Defect (VSD) and had open heart surgery when he was 5 months old. We were trying to delay surgery until he was 1 year old, but he was FTT so needed the surgery sooner. Good news is that the surgery was completely successful and other than regular (and gradually less frequent) visits with the cardiologist, ds is considered to be completely resolved.

With DD, we did a fetal echo and a 2nd level u/s, and nothing showed. She was, however, born with a heart murmur, but that resolved itself by 6 months. Whew!

Regarding vax'ing -- we decided to selectively vax ds because of the compromised immunity issue. Quite honestly, I don't know how thoroughly I thought through this because the bigger issue was to just keep ds alive and frankly, once you are deep in the medical community with these types of issues, you kind of hear what they want you to hear. I'm just thankful that all is ok today.

I had an extremely difficult time bf'ing ds -- he would fall asleep while feeding -- such difficult work eating! I finally gave up bf''ing when he went for surgery. DS wouldn't take breastmilk by bottle, but would take formula. I feel horrible about this. DS was speech delayed and had articulation issues due to oral motor issues. I think that a lot of his speech problems were because he didn't work out his mouth muscles as much as he would have if he hadn't had the heart issue. DS was also diagnosed with Sensory Processing Issues (midline crossing issues, low upperbody strength, touch and food texture sensitivities, vestibular issues.) I've always wondered if his heart issues and subsequent surgery caused this, or whether it was completely coincidental.

Subbing......

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#14 of 122 Old 06-04-2007, 05:25 PM
 
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Hi all. My ds Antonio was diagnosed with a Heart Murmer at 6mo. My Fam.Doc sent us too a Ped.Cardiologist and she confirmed that he had a Moderate VSD. He was gaining and thriving so we left it alone and monitored for the next 12mo.
Around 12mo, the Cardiologist noticed lower bp in his l groin & ankles and sent us for an echo to see if *there was anything else*. The echo tech REALLY freaked me out!! Midway though the echo, she gets up all serious, walks to the phone and pages my Card. to come "right away". I was in panic mode. The echo lasted for over an hour. They found him to also have a Coarctation of the Aorta and his VSD was not closing spontaneously and was causing one side of his alot of extra stress.
We were then referred to our local Childrens Hospital for an MRI and more advanced echo, chest x-rays etc etc. He was now about 16mo.

I waited about a week after the MRI to hear from my Card., who never called me (I'm bitter about this and we have since taken on another cardiologist).
I called the hospital directly to be told that Antonio's case was being reviewed by a Team of Cardiologists for reccomendation of treatment. They said they call as soon as they knew anything.
Next thing I know, I get a call from the Surgeons Nurse to book him for Open Heart Surgery within 5 days : She was vert sweet and incredibly apologetic that she was the one disclosing to me that my son need this surgery. It should've been our Cardiologist, but again, hence why we left her :

I asked if we could have 1 extra week so I could get my life organized (babysitter for my 2 older ones etc).

He went in for surgery on September 15th, 2006, he was 17mo. Things went incredibly well and we were sent home after only 6 days!!

We have since been for several follow-ups and it appears that the scar tissue on his aorta is not "growing well with him". They are talking about doing an Angioplasty come this Septemeber. The VSD however, is healing very well

On the vaccine front: We are a vax-free family for many reasons. I actually feel even more strongly about NOT vaxing Antonio than any of my other kids. Him having the weaker immune system and *exsposed* heart, I fear severe reactions with him the most. For me, breastfeeding him exlcusively for as long as possible (until about 14mo) and still breastfeeding for as long as he wants too will ensure all the immunities he needs. He's still nursing strong at 25mo.

Great Tribe Niki

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#15 of 122 Old 06-05-2007, 12:33 AM
 
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.. :bump
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#16 of 122 Old 06-05-2007, 08:55 AM
 
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My son Cody (9) was born with VSD. We were going to the cardiologist yearly to have it looked at and when he was 7, we took him to a new pedi at Children's who said he should of had OHS. Now our new insurance won't cover his dr so we are screwed. Great huh?? He's done really great so no worries, for now! We do want to get his hole closed up while he is in his teens.

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#17 of 122 Old 06-05-2007, 01:12 PM
 
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I was wondering how many of us had Dad's exposed to Agent Orange in Vietnam? My mom found an article stating that there are many 2nd generation offspring of vets with heart and kidney defects...anyone ever hear of this?
Quote:
Originally Posted by MiracleMaddiesMom View Post
There is also a couple of studies out that show a link from taking certain anti-depressants to congenital heart defects.
Does anybody know where I can find more information about either of these?

My son was born with HLHS, and I have been searching for answers ever since we got the diagnosis.

DH's father was stationed in Vietnam, although he is deceased, so we cannot inquire as to exposure.

DH and I have both been on anti-depressants at different times.

If anyone can point me in the right direction it would be appreciated.

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cristeen- here is a link for you:
http://www.congenital-heart-defects.org/

The website has a little info on the link of taking Paxil in the 1st trimester and VSD.

I hope you find the answers you are looking for I know for me, not knowing the how's and the why's, are hard to accept.
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#22 of 122 Old 06-06-2007, 02:09 AM
 
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Chiming in. DS was born with a Ventricular Septal Defect (VSD) and had open heart surgery when he was 5 months old. We were trying to delay surgery until he was 1 year old, but he was FTT so needed the surgery sooner. Good news is that the surgery was completely successful and other than regular (and gradually less frequent) visits with the cardiologist, ds is considered to be completely resolved.

With DD, we did a fetal echo and a 2nd level u/s, and nothing showed. She was, however, born with a heart murmur, but that resolved itself by 6 months. Whew!

Regarding vax'ing -- we decided to selectively vax ds because of the compromised immunity issue. Quite honestly, I don't know how thoroughly I thought through this because the bigger issue was to just keep ds alive and frankly, once you are deep in the medical community with these types of issues, you kind of hear what they want you to hear. I'm just thankful that all is ok today.

I had an extremely difficult time bf'ing ds -- he would fall asleep while feeding -- such difficult work eating! I finally gave up bf''ing when he went for surgery. DS wouldn't take breastmilk by bottle, but would take formula. I feel horrible about this. DS was speech delayed and had articulation issues due to oral motor issues. I think that a lot of his speech problems were because he didn't work out his mouth muscles as much as he would have if he hadn't had the heart issue. DS was also diagnosed with Sensory Processing Issues (midline crossing issues, low upperbody strength, touch and food texture sensitivities, vestibular issues.) I've always wondered if his heart issues and subsequent surgery caused this, or whether it was completely coincidental.

Subbing......

Sensory processing disorders here too with our hearh child who is soon to be 9yrs. old. He has midline crossing issues, also the low upperbody strength, touch and food texture sensitivities, and proximal?? or something like that she spoke about. This is all new to us still. I too wonder about all the vaccine stuff too. He was vaxed :-( If I only had a clue then what I know today.
Subbing..
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#23 of 122 Old 06-07-2007, 01:52 AM - Thread Starter
 
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#24 of 122 Old 06-07-2007, 01:55 AM
 
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my neice has Marfan's Syndrome.

Just wanted to chime in here and see if she was the only one!

Erika SO to *S*: and Aunt to *A*(10), *Z*(9), and *D*(8)
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#25 of 122 Old 06-07-2007, 06:27 PM
 
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ErikaLeigh- My friends son was just diagnosed with Marfan's a couple of months ago. My friends son is 8 and so far is taking the diagnosis pretty good. He will most likely have to have OHS within the next year to repair his Aorta. How old is your niece?
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#26 of 122 Old 06-14-2007, 08:02 AM
 
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bumping.......

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#27 of 122 Old 06-15-2007, 05:23 AM
 
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Hi everyone!

I'm so glad I found this thread!

We just adopted our wonderful daughter from China last month. She has Tetralogy of Fallot (you might know it as "blue baby syndrome"). She is scheduled for surgery next Friday (the 22nd). She is 16 months old.

We almost got her in early, did all the preop and everything last week, but then they moved us back again. We've been total hermits since we have been home to make sure she doesn't get sick! I think we are all getting a little nuts staying home all the time, but I feel it is worth it to not endanger her surgery date.

She is doing really well. She has a ton of energy already - I can't imagine what she will be like after the surgery (well, probably like her brother! Ha ha!). Sometimes I'm not sure if I should reign her in. She gets a little out of breath and her lips and fingers turn purple at times. It will be nice to not worry about that after the surgery!

I'm a little worried about the hospital stay after the surgery. Dd is not interested in TV at all, so hopefully I can come up with enough ways to keep her entertained and rested. I also want to keep our attachment really strong throughout everything.

Looking forward to talking more with you all! I know what an EKG and an echo is, but neither have really been done on dd because she screams whenever a doctor looks at her.
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#28 of 122 Old 06-15-2007, 02:11 PM - Thread Starter
 
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Hi everyone!

I'm so glad I found this thread!

We just adopted our wonderful daughter from China last month. She has Tetralogy of Fallot (you might know it as "blue baby syndrome"). She is scheduled for surgery next Friday (the 22nd). She is 16 months old.

We almost got her in early, did all the preop and everything last week, but then they moved us back again. We've been total hermits since we have been home to make sure she doesn't get sick! I think we are all getting a little nuts staying home all the time, but I feel it is worth it to not endanger her surgery date.

She is doing really well. She has a ton of energy already - I can't imagine what she will be like after the surgery (well, probably like her brother! Ha ha!). Sometimes I'm not sure if I should reign her in. She gets a little out of breath and her lips and fingers turn purple at times. It will be nice to not worry about that after the surgery!

I'm a little worried about the hospital stay after the surgery. Dd is not interested in TV at all, so hopefully I can come up with enough ways to keep her entertained and rested. I also want to keep our attachment really strong throughout everything.

Looking forward to talking more with you all! I know what an EKG and an echo is, but neither have really been done on dd because she screams whenever a doctor looks at her.
Hi! Welcome to the tribe that everyone would rather not be a part of. We hermit too, dd was on asprin and i was petrified she would get a fever and get reyes I felt way too uncomortable with her on it and stopped giving it when her Anti-Xa got high enough with the Lovenox which was a good thing because she got a fever of a 102 last week. most children's hospitals have a child life program and they will keep you dd very entertained with appropriate activities.
Our hospital mostly does the Echos when the kids are sedated so i'm sure they will do some when she is in PICU.

hope everything goes well and recovery is fast.
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#29 of 122 Old 06-15-2007, 06:21 PM
 
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Sometimes I'm not sure if I should reign her in. She gets a little out of breath and her lips and fingers turn purple at times. It will be nice to not worry about that after the surgery!
I remember when the cardiologist (who was wonderful!) was telling me about the signs to look for with congestive heart failure......and I was freaking out. I was a first time mom, and now I'm supposed to know what's normal and what congestive heart failure looks like?? :

You know, I remember being very relieved when ds went in for surgery - scared, but relieved. I wanted it to be over - no more waiting to get things fixed.

Anyway - Welcome Hip Gal!

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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#30 of 122 Old 06-15-2007, 07:31 PM
 
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Welcome to the Newbies!

A will be 8 next month and her aorta is doing alright at the moment.

They plan to do open heart surgery and repair her heart at 18-22.

Does he have the 'hump' on his chest?

Erika SO to *S*: and Aunt to *A*(10), *Z*(9), and *D*(8)
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