Moms of childrens with heart defects - Page 3 - Mothering Forums

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#61 of 122 Old 09-18-2007, 01:44 AM
 
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I haven't read through every post yet, but I'm so glad to have found this. My dd had an AVSD and just had her open-heart a few months ago at 14 mnths. Mama-llama- My dd's open heart went very well. It sounds like maybe your son has had a harder time though with his other surgery, so I don't know if I can help you much. She had only been in the beginning stages of congestive heart failure, she was fine after the surgery. She had a complete ASD so needed a huge patch there, there was no atrial septal tisssue, and the repaired a cleft mitril valve. It all went pretty text-book. The first two days were the hardest, but you'll get through it. They will have him in the day before for pre-op stuff, maybe you know that already.The surgery itself was much quicker than we expected, about 3 1/2 hours. The thing that is hard to prepare for is how swollen they are after surgery, the heart-lung machine and the fluids will cause some serious swelling ( and some feet and hand bluing). Also you probably know there will be many many tubes (Its hard seeing them pull some of the deep ones). The most intense ones will be the vent and the chest tube. My dd was able to get off the vent after a day, and the chest tube came out right before we went home. Make sure they keep on top of the pain meds, this is not the time you want to see any BP rises, and your little one will let you know. With Morphine it is very common to get the itchies, if you notice your DS getting too squirmy, and aggitated ( it can be painful, but the morphine ect, should keep them pretty out the first 2 days, if you notice more than that consider a morphine reaction) ask about it, and they can give him benadryl. This helped my DD tremedously. Once the vent was off my DD started recovering pretty fast and tubes just start coming out left and right. It was a pretty intense week, but it went by fast, and I hope this is the same for you. I am just posting all this because I wish I had known some of this stuff before hand.

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#62 of 122 Old 09-18-2007, 11:54 AM - Thread Starter
 
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I haven't read through every post yet, but I'm so glad to have found this. My dd had an AVSD and just had her open-heart a few months ago at 14 mnths. Mama-llama- My dd's open heart went very well. It sounds like maybe your son has had a harder time though with his other surgery, so I don't know if I can help you much. She had only been in the beginning stages of congestive heart failure, she was fine after the surgery. She had a complete ASD so needed a huge patch there, there was no atrial septal tisssue, and the repaired a cleft mitril valve. It all went pretty text-book. The first two days were the hardest, but you'll get through it. They will have him in the day before for pre-op stuff, maybe you know that already.The surgery itself was much quicker than we expected, about 3 1/2 hours. The thing that is hard to prepare for is how swollen they are after surgery, the heart-lung machine and the fluids will cause some serious swelling ( and some feet and hand bluing). Also you probably know there will be many many tubes (Its hard seeing them pull some of the deep ones). The most intense ones will be the vent and the chest tube. My dd was able to get off the vent after a day, and the chest tube came out right before we went home. Make sure they keep on top of the pain meds, this is not the time you want to see any BP rises, and your little one will let you know. With Morphine it is very common to get the itchies, if you notice your DS getting too squirmy, and aggitated ( it can be painful, but the morphine ect, should keep them pretty out the first 2 days, if you notice more than that consider a morphine reaction) ask about it, and they can give him benadryl. This helped my DD tremedously. Once the vent was off my DD started recovering pretty fast and tubes just start coming out left and right. It was a pretty intense week, but it went by fast, and I hope this is the same for you. I am just posting all this because I wish I had known some of this stuff before hand.
Thanks for joining us Mary. How is your DD doing now?

Carly - I can post some links to pictures of DD right after surgery if you want to see how swollen they can get and, what all the machinery may look like.
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#63 of 122 Old 09-18-2007, 12:06 PM
 
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Thanks. And she is doing just great. A whole new kid, so much energy. She is on no meds or anything. Also she is on yearly visits already. But her defect was pretty straight forward.
How is your DD?

hearts.gifhearts.gifhearts.gifhearts.gifhearts.gif A house full of girls, but for dad and one brother bikenew.gif
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#64 of 122 Old 09-18-2007, 11:18 PM
 
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Mamal_Mama - My ds had his OS done when he was 5 months old. So, in some ways it was easier - he wasn't crawling or walking yet, so keeping him in a bed while he was recovering was pretty easy. I think it can be harder on older children.

You'll want to take extra care between now and the surgery date to keep him as healthy as possible. I was warned that if ds got sick, they might need to postpone the surgery.

What else do you want/need to know? Ask away!

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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#65 of 122 Old 09-19-2007, 03:12 PM
 
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Glad to see you here too, Mary. I've seen your sig before and thought I'd like to know you better, as we both have 3 closely spaced kids and one w/ a CHD. Thanks for the description. I wouldn't have known to expect the swelling, as he wasn't all that swollen after the first surgery.

Yeah, I'm a little worried b/c he's older and it might be tricky to keep him calm. We haven't done any surgeries since 6 mos, and he was (and still is) delayed so it was pretty easy in that regard. I guess what I want to know is how long he'll be on narcotics or sedated so that we don't have to worry about that, and when it might get tricky. His cardio said for many kids this is a 3 day stay, which totally floored me, it seems so short. But for him, b/c of his genetic condition, we just don't know what will happen. He's had IV infiltrates before, so we need to watch for those.

Any other "wish I knew that before" tips? The thing that really has me freaked is dd2 will only be 3 mos old then, so not sure how I'll juggle seeing ds and caring for her. DH is going to be the 24/7 person there with ds, but I don't want to spend tons of time driving back and forth with a small baby. We live too close to qualify for Ronald McDonald house, unless we can get social work to pull strings for us.
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#66 of 122 Old 09-19-2007, 05:15 PM - Thread Starter
 
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Glad to see you here too, Mary. I've seen your sig before and thought I'd like to know you better, as we both have 3 closely spaced kids and one w/ a CHD. Thanks for the description. I wouldn't have known to expect the swelling, as he wasn't all that swollen after the first surgery.

Yeah, I'm a little worried b/c he's older and it might be tricky to keep him calm. We haven't done any surgeries since 6 mos, and he was (and still is) delayed so it was pretty easy in that regard. I guess what I want to know is how long he'll be on narcotics or sedated so that we don't have to worry about that, and when it might get tricky. His cardio said for many kids this is a 3 day stay, which totally floored me, it seems so short. But for him, b/c of his genetic condition, we just don't know what will happen. He's had IV infiltrates before, so we need to watch for those.

Any other "wish I knew that before" tips? The thing that really has me freaked is dd2 will only be 3 mos old then, so not sure how I'll juggle seeing ds and caring for her. DH is going to be the 24/7 person there with ds, but I don't want to spend tons of time driving back and forth with a small baby. We live too close to qualify for Ronald McDonald house, unless we can get social work to pull strings for us.
You might be able to get into Ronald McDonald because you are breastfeeding your new DD but still have to be close the hospital for DS
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#67 of 122 Old 09-19-2007, 05:26 PM
 
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Hi Everyone.

Update on Antonio~

His most recent Card. appt showed his VSD repair functioning well and his CoArc repair allowing adequate blood flow for now (slightly low BP in his legs...but he still has a pulse so our Card. suggested waiting). Back in March they thought he would likely need an Angioplasty this month, thankfully he's doing well enough to avoid it for now. His Bicuspid Aortic Valve is also functioning well for the moment.

I really want to post on my experiences with OHS....I will find some time to sit and post hopefully later thisevening
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#68 of 122 Old 09-19-2007, 11:49 PM
 
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MM - I think I remember ds being sedated for about 24 hours after surgery.

Prepare yourself for seeing ds being hooked up to all sorts of stuff - tubes running. After surgery, he'll likely be intubated. It can kind of be a little bit of a shocker, but I think if you know about some of this stuff ahead of time, it helps soften it.

The PICU nurses are usually great. They'll get you anything you want and/or need.

It is an amazingly quick recovery time. DS didn't seem to be in too much pain afterwards. His chest was a little sore, and he wouldn't lie on his stomach for about a month or so afterwards, but he was still active.

Does your cardiac surgeon have any type of "preparation course" for you to take part in? Our surgeon actually had a seminar once a month where they would run through what to expect, you could see the heart and lung machine for the bypass, talk to the anesthecian, etc. If they don't, I would ask if one of the nurses could talk you through the actual surgery procedures.

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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#69 of 122 Old 09-20-2007, 12:15 AM
 
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My 6yo has a Bicuspid Aortic Valve, basically instead of 3 leaflets iin the aortic valve there are 2. Right now she just sees the cardiologist every 2 years, though I'm having issues getting her an appt right now. She will eventually need surgery to replace the valve, most likely not until she's in her 30's or 40's. IF she needs it earlier it will probably be in her teens.

she used to get tired very quickly, but doesn't seem to have that issue anymore.
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#70 of 122 Old 09-20-2007, 12:31 AM
 
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Hi mamas,

I'm hoping you might be able to shed some light on something that seems curious to me... all three of my kids (DS is 5, identical twin girls are 2) have heart murmurs. My dad also had one and had to have a heart valve replacement about 10 years ago. DS and one DD had echos which said they were not serious, although DDs involved three valves (can that be right?)

Do you know if there is a hereditary factor to heart murmurs? Is there anything I need to watch for? They thought all three would grow out of them in the first month, first year, first two years, but you can still hear all three, even when they are healthy (we are quite the attraction when we have been at the hospital for other reasons... the older peds ask the student residents to see if they can hear them...) Do they need to be aware of my dad's history as they grow old? His was the kind of murmur where you had to take penicillin at the dentist, if that's any help.

I am sorry to intrude with a less serious question, but I wondered if you might have more answers than my busy GP.

Thanks, mamas, and good luck to all your amazing children.
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#71 of 122 Old 09-20-2007, 12:52 AM
 
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I admit to not having read all the replies yet (but I will!) but am reading with interest as I personally had congenital heart defects. ASD, VSD, holes in the outside and something extra (aorta? I really should know more about this!) It's been really interesting reading about your children and the depth of knowledge you all have regarding their care. Also, about how much diagnosis/ treatment/ prognosis has changed since I had my OHS at 6 months of age (1979). I hope that you don't mind me lurking - it's not often that I 'run' into anyone who knows anything about this subject!

Erica
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#72 of 122 Old 09-20-2007, 12:56 AM
 
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Do you know if there is a hereditary factor to heart murmurs? Is there anything I need to watch for? They thought all three would grow out of them

I had OHS as a baby, my mother has a murmer and always has had. It wasn't until she was in her 30s or 40s that anyone even told her about it.

history as they grow old? His was the kind of murmur where you had to take penicillin at the dentist, if that's any help.

This may have changed - I always had to have antibiotics for the dentist, etc. but at my last appointment my cardiologist said that it's no longer the standard and that I no longer had to do it.
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#73 of 122 Old 09-20-2007, 08:20 PM
 
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Hereditary issues --
DS had a VSD, DD was born with a murmur that "resolved" by 6 months.

My cousin (paternal side) recently had a baby with a VSD. Baby is about 9 months old now. The drs. are monitoring it - so far it doesn't require OHS.

No other history of cogenital heart defects in our family that I know of.

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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#74 of 122 Old 09-20-2007, 08:23 PM
 
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[I]

This may have changed - I always had to have antibiotics for the dentist, etc. but at my last appointment my cardiologist said that it's no longer the standard and that I no longer had to do it.
We were also told that ds would require abx for dental work. However, at his 3 year check up, I was told by the cardiologist that his VSD was considered completely resolved and that he would not require abx for dental work/cleanings, etc.

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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#75 of 122 Old 09-23-2007, 01:47 PM
 
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Things have changed with the mumur=antibiotics. My sister has a murmur, no clue what kind it is but hers is one that is not a problem. When she was little she was told that she'd need antibiotics by the dentist. The cardiologist told mom to not even mention it to the dentist that hers didn't need antibiotics.

Asha (the one with the bicuspid aortic valve) is supposed to need them. When Nadia was 1 she developed a murmur. It was very concerning when we found out she had it because my dr had been checking to see if she had one & every time he said she didn't. It was the useless ped who discovered it. She was 12months at the time & when our regular dr checked at her 12month appt he said there definitly one was. Asha was going in for her cardiologist appt in 3 weeks or so & we got Nadia in at the same time. Hers is a Stills Murmur. It develops when they're around 1-2 & for whatever reason goes away when they hit puberty. She doesn't need to go back tot eh cardiologist & no antibiotics before dental work.

Nadia's you need the stethoscope to hear her murmur, Asha's you can lay your head on her chest & hear it.
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#76 of 122 Old 10-09-2007, 06:21 PM
 
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Wow, I wish this thread had been around a year ago.

Dd2 is the thriving survivor of open-heart at three months to repair a large VSD and ASD. If anyone has any questions about nursing a baby with CHD, I did a ton of research and worked with a lactation consultant, so please ask away! You can read more about it in the blog in my siggie...
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#77 of 122 Old 10-10-2007, 12:20 AM
 
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Wow, glad to find this board. My baby had OHS May 23 when she was 4 jmonths old to repair a large VSD. The surgery went great but she had a very hard time recovering. I ended up living with her for 28 days in the PICU 7 hours from my other six kids. It was very traumatic. She came home on oxygen and then a month after that we were mediflighted back to the hospital because she was in complete heart block. That earned her a pacemaker. She is doing well now. We are down to only two meds and she is finally gaining weight and is actually a healthy pink color instead of dusky.
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#78 of 122 Old 10-10-2007, 12:57 AM - Thread Starter
 
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Cancat and Stardazed: Glad you have found us.
Stardazed: What kind of restrictions does your dd have with a pacemaker? my DD may require one of these.

DD's checkup is next week, I'm really stressed already as this is also the first time she will be sedated for the echo. I also have to speak to our ped. about getting her started on the RSV shots- Does anyone else's child require these shots? We are against other vaxes but last time she got RSV is how we discovered her HD and spent a couple weeks in ICU with her being on assisted breathing.
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#79 of 122 Old 10-10-2007, 02:32 AM
 
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Cancat and Stardazed: Glad you have found us.
Stardazed: What kind of restrictions does your dd have with a pacemaker? my DD may require one of these.

.
She is only 8 mos old so she doesn't have any restrictions yet. It has been a true blessing. She is a million times better since her heart is beating right.
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#80 of 122 Old 10-10-2007, 09:42 AM
 
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I also have to speak to our ped. about getting her started on the RSV shots- Does anyone else's child require these shots? We are against other vaxes but last time she got RSV is how we discovered her HD and spent a couple weeks in ICU with her being on assisted breathing.
My dd had the rsv shots every three-four weeks during rsv season last year.
It is not a live-cell vaccine (thus the frequency) so many people consider it safer than other "real" vaccines. Actually, dd had her first shot a few days after she contracted RSV from her sister, and I think that really lessened the severity of it for her (we were only hospitalized for two days, and no meds just oxygen, which was minimal considering the her VSD had not been repaired at the time).
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#81 of 122 Old 10-14-2007, 06:04 PM
 
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Hi mama's

Haven't read all the posts yet, but will later.
My 11yr old Ds has dilated cardiomyopathy and was diagnosed when he was 5 months old so we don't know if he was born with it or he had a virus that caused it. He's on Med's twice a day and sees he cardiologist about every 3 months. He's pretty much been stable except for about a year or two ago when we weren't able to get med's for about 2 weeks (because of a medicaid/SSI issue) and he got a little worse, but thankfully he went back within a few months. They used to tell me when he was younger that he would most probably have a heart transplant in the future. The doctor says he was severe then (also being small) and now he would consider him moderate. They said when it comes to the heart, they just don't really know. He also was part of a 6month study done in Mass. when he was 4/5. And the cardiologist said "maybe" thats what gave him slight improvements along the way. Don't think there was enough kids in the study to really say.
We are lucky because he doesn't suffer, he seems like a very spirited boy and no one would guess he has a heart condition. In fact most people would say, is he ADHD or something. The only thing that his dr. says he can't do is competetive sports. We had major problems with schools in the past and so "unschooled" for two years and now he's attending a local "Free/Democratic school" that he loves. He also attended a camp this summer called Hope with Heart in NY. It was a sleep over camp for one week with all kids with different kinds of heart conditions. I think it was great for him to meet other kids that also had a heart condition. He made some friends and plans to go next year. My middle son has autism and I always wondered if vax's had anything to do with these things. They were both vax'ed until '99 when I educated myself on vax's. I also have a 3yr son who had no vax's and has no autism or signs of ADHD behaviors You never know..

RayRay~

Life Learning Momma to DS17, DS16,DS9jumpers.gifas well a dog, a cat, two birds...ttc babygirl.gif homeschool.gifnamaste.gif
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#82 of 122 Old 10-16-2007, 04:22 PM
 
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I'm glad to see other mommas of heart kids around... My DS, Revi, will be 4 this month. I ended up with a c/s & my hospital's policy was to have a neonatologist at every c/s. That was totally a blessing in disguise, because when his cord was cut he got "grey & floppy" (that's what I was told; they wouldn't let me see him). They called in his wonderful cardiologist, who diagnosed him with TGV (Transposition of the Great Vessels) before he was 2 hours old. They took him by ambulance to Children's in Chicago and he had a balloon procedure. I got to stay in the hospital thanks to my c/s, but either of my parents or my sister were with him until I got there 2 days later. He had his surgery at 7 days old and we got to leave the hospital when he was 21 days old.

Revi hasn't been to the cardiologist since he was 2. His doctor has since retired. We have an appt with his former partner in a few weeks and I don't know why I'm as nervous as I am. He has not had ANY issues since he was tiny.

April ... wife to Logan since 12/21/08, momma to Revi 10/30/03 & Wrenna 03/27/09, other-momma to Zoe 10/14/02 & Xander 08/17/04.... still figuring out how to blend a family!
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#83 of 122 Old 10-21-2007, 09:38 AM
 
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how are all of the little doing?

alyssa is doing well right now, things are progressing as well as to be expected!

Her cardio is still thinking she'll end up with open heart at 18, if she is deveopling on time. Right now she is ahead of schedule with development.

Erika SO to *S*: and Aunt to *A*(10), *Z*(9), and *D*(8)
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#84 of 122 Old 02-23-2008, 03:21 PM
 
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I was needing some help this morning with my 9 yr. old heart baby. He is very emotional and is worried he is going to die. What do I say? I have explained to him that God takes care of us and knows what's best for all of us and to place that worry back in God's hands where it belongs. He worries he won't see mama and his siblings anymore. He is so emotional what can I say or do? Brief history of him: He is a heart baby so knows that life is preciouse. He experiences very fast heart rate at times and he has learned through the years that he feels a certain way just prior to his rapid heart rate and he is feeling that way this morning. This is why he is worried something will go wrong and they won't be able to make his heart stop going fast. Any words or ideas for me to tell him? Thanks mama's
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#85 of 122 Old 02-25-2008, 04:42 AM
 
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Hello everyone I was wondering if we have a pen pal tribal? My son is 9 yrs. old and has svt and wpw and would like a email pal or pen pal. Any thoughts on this?
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#86 of 122 Old 06-04-2008, 11:46 AM
 
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How are all our heart babies doing?
My DD's 1st anniversary of open heart surgery for her complete AVSD is coming up in a few weeks.
Just thinking of all of you.

hearts.gifhearts.gifhearts.gifhearts.gifhearts.gif A house full of girls, but for dad and one brother bikenew.gif
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#87 of 122 Old 06-04-2008, 08:57 PM
 
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I was wondering..someone has mentioned to me there being a connect with heart problems and behavioral issues in kids? Anyone have a child who has a heart problem and behavioral issues?
My ds is 12yr and been having behavioral issues since he was 5yr. His heart condition, dilated cardiomyopathy, he was dx when he was 5mo.
When a pysch. mentioned there being a connection I was interested if seeing if that was really true.

RayRay~

Life Learning Momma to DS17, DS16,DS9jumpers.gifas well a dog, a cat, two birds...ttc babygirl.gif homeschool.gifnamaste.gif
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#88 of 122 Old 06-04-2008, 09:02 PM
 
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Originally Posted by wantingagirl2b#4 View Post
Hello everyone I was wondering if we have a pen pal tribal? My son is 9 yrs. old and has svt and wpw and would like a email pal or pen pal. Any thoughts on this?
My son might be interested in having a pen pal...I'll ask I found a camp last year that is called, Hope with Heart and is a camp only for kids with heart conditions for one week. He had a great time and I think it was great for him to make some friends with others that have similiar issues as him. He continued talking to some of the other campers and even his counselor via e-mail and is excitied to return this summer. Its also free which is great. Not sure what state your from but you should research if they have something similiar for your son in your area.

good luck
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#89 of 122 Old 06-06-2008, 11:08 AM
 
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I was wondering..someone has mentioned to me there being a connect with heart problems and behavioral issues in kids? Anyone have a child who has a heart problem and behavioral issues?
My ds is 12yr and been having behavioral issues since he was 5yr. His heart condition, dilated cardiomyopathy, he was dx when he was 5mo.
When a pysch. mentioned there being a connection I was interested if seeing if that was really true.

RayRay~
I had this mentioned to me by another mother who had a child who had heart surgery - the connection between behavior issues/development delays and heart surgery. My dh took our ds to the cardiologist this past winter for a check up, and I forgot to have dh ask the dr.

DS has some issues with sensory processing (tactile defensiveness, sound sensitivity are the predominant ones) and he is also prone to anxiety. I don't know if there is a correlation to the surgery or not, or whether it's who he is. My personal opinion is that a surgery with the magnitude of a heart surgery takes time to heal completely. I think the body spends years recovering from the trauma. DS had his surgery when he was 5 months old - and among other things, the hardest part for me was not being able to hold him right after surgery. Did this break in attachment cause some issues for him that he's still dealing with? Not really sure, you know?
I'd be interested to hear from other mamas, too.

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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#90 of 122 Old 06-06-2008, 11:12 AM
 
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How are all our heart babies doing?
My DD's 1st anniversary of open heart surgery for her complete AVSD is coming up in a few weeks.
Just thinking of all of you.
Isn't it great to reach these milestones! Congratulations to you and your dd!

It's been 6.5 years since our ds had his surgery. Every November (which is our anniversary for his OHS) I think about what we all went through. Every Thanksgiving since his surgery has had a special meaning for me, and how very grateful I am that he is alive and healthy and a part of my life.

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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