Wanna start a "heart" thread? - Page 3

[skyebones]

Hi! Yes, Sophia had her MAW trip in April to Disney. As far as qualifications, we had no problems with that, unfortunately. HRHS is not something that is going to go away and surgery is only palliative. I simply contacted our local branch in Cleveland and within a few weeks, 2 very nice representatives came to our home and asked Sophia what her wish was. Sophia wanted to celebrate her 7th birthday at Disney. We stayed at Give Kids the World. I also belong to a group dedicated to people with HRHS. Here's a link: http://www.hypoplasticrighthearts.org/

I would love to share pictures, but I can't figure out how .

If anyone is interested in more details about MAW, ask away. I'll be back to work on Tuesday to answer them!

Have a wonderful weekend ladies,
Laura

[CarrieMF]

My 7yo has a Bicuspid Aortic Valve. Normally people with it don't need surgery until they're in their 30's-40's. IF they need it earlier it is in their teens.

They found hers when she was 13months. She was going to the cardiologist every 2 years until this last November. Now she's going every 6months. Not enough blood is flowing through the aortic valve, though in June it was better than it was in November. They were taking surgery or medicines before her appointment in June. The change could be due to growth, kids go through a major growth around the age of 7 & it can cause things to act up more at that age.

She is not supposed to get overtired, do vigorous sports although playing basketball once a week was fine. Physically she shows ZERO signs of having a heart defect & that's a big reason why they're not taking any serious action right now.

For vaccines, I did the regular ones at 2, 4, 6, 12 & 18 months which at the time were not the number of vaccines they do now. She did not get the CP vax. At the time prevnar was NOT available to all kids. Her cardiologist sent a form letter recommending it. I talked to our regular dr(who doesn't do vax's, they're done by a separate group here). I was still unsure but went & she did get the 2 doses of prevnar. At the first one they said she needed a 2nd dose due to her age(she was just over 2 at the time). At the 2nd one they said she needed a 3rd one. I asked what for because they said it was only 2. They said yes prevnar was only 2 but they want to give this other vaccine too. I asked for information on it but they couldn't give me any. That was the last time any of my kids received any vax's.

My take on it now is this:

Getting a vax lowers the immune system as the body tries to fight off & build immunity to the foreign substance that was injected into them. During this time they are more likely to get sick because their bodies are busy fighting off the vax.

Having a heart condition already lowers the immune system so why would I further reduce their immune system making them even MORE likely to catch something.

Out of all 3 of my kids, the 7yo with the heart defect is the one who gets sick the least.

[heartmama]

Hi! Yes, Sophia had her MAW trip in April to Disney. As far as qualifications, we had no problems with that, unfortunately. HRHS is not something that is going to go away and surgery is only palliative. I simply contacted our local branch in Cleveland and within a few weeks, 2 very nice representatives came to our home and asked Sophia what her wish was. Sophia wanted to celebrate her 7th birthday at Disney. We stayed at Give Kids the World. I also belong to a group dedicated to people with HRHS. Here's a link: http://www.hypoplasticrighthearts.org/

I would love to share pictures, but I can't figure out how .

If anyone is interested in more details about MAW, ask away. I'll be back to work on Tuesday to answer them!

Have a wonderful weekend ladies,
Laura

Wow, thanks Laura. Ds has HRHS too, and I didn't realize he qualified for Make-A-Wish.

Thanks for the link. That must be an new group or something, because I never found it back when I was looking for info when he was born.

[skyebones]

Actually, that group has been around for 5 years. They just had their first annual get-together in MN! People came from all over the country. We did not attend, but will next year!

How can I insert a picture?

Laura

[DandeCobb]

hey ladies! Maggie has a cold, :, she is all snuffily and sneezing, no fever but it still has put me on edge.

hope everyone else is doing well

[veganone]

We spent yesterday evening in the ER - she fell on our wood floors and ended up with a dent in her head. No signs of head injury (vomiting, disorientation, etc) so they sent us home. We are seeing her ped this afternoon.

Last Labor Day I was in the hospital having her (she was born last Labor Day) and this one we were back! Argh...

She feels fine and is acting normally, but man it was scary!

Hope everyone else had an uneventful weekend!

[hollytheteacher]

Originally Posted by veganone

We spent yesterday evening in the ER - she fell on our wood floors and ended up with a dent in her head. No signs of head injury (vomiting, disorientation, etc) so they sent us home. We are seeing her ped this afternoon.

Last Labor Day I was in the hospital having her (she was born last Labor Day) and this one we were back! Argh...

She feels fine and is acting normally, but man it was scary!

Hope everyone else had an uneventful weekend!

OH NO! I'm glad things seem to be okay, but how scary!

[niki_73]

Hi

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 9, 2007 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. She does not handle the heat that well so she had to be monitored recently but it looks like she just goes tachy but is staying in rhythm so we just have to keep her cool.

I started a tribe a while ago here.

There is a write up about her in the tchin site and lots of pics in my sig.

[veganone]

Hi Niki! I'm glad your daughter got a diagnosis - how terrifying for you. I am sorry she had to have surgery, but I'm glad she's doing so well.

Prayers that she can avoid a pacemaker.

[DopeyDame]

Adult with CHD

Hi all,
I'm usually a lurker on the adoption and education boards, but I couldn't help but respond to this thread - I was born with TOF a whopping 32 years ago so I thought it might help to get the perspective from the other side...

I had OHS when I was 5 years old at Childrens in Philadelphia (obviously the standard of care was very different back then) I just wanted to jump in to give a hug to all you moms and dads struggling with CHD kids now - trust me, it is FAR harder on you than it is on your kids!

I still visit the cardiologist once a year, but other than that, I'm a normal, healthy, happy adult. (I know this is WAY down the line, but when your kids do become adults, make sure they find a cardiologist who specializes in adults with congenitcal heart defects. Most adult cardiologists don't have the vaguest idea what to do with someone under 60 or so, and most ped cards look at your dumbfounded when you ask about pregnancy and other adult issues.) Every once in a while it will come up (for example, when I casually mentioned to my boss that I wouldn't be at work because of my cardiologist appointment, forgetting that he didn't have the faintest idea I had heart issues. He was clearly very confused for minute ;-)

On the other hand, my mom still looks at my nails to make sure they are pink and not blue, and she freaked out a few months ago when I was squatting down to look at something, having flashbacks to the position my 4-year-old-self took when I would get overly tired. So hugs to all you brave parents, and try to remember that your kids are incredibly strong and will (God willing!) do very well.

[POUKABEAR13]

For All Of You Who Has A Child Wth Tof. My Son Dx At Birth, Surgery At 4 Months Yearly Visits To Specialist Is Now 17 Years Old And Doing Great. He Can't Play Any Contact Sports But Limits Himself As Needed. He Rides His Bike Farther Then I Did At His Age And Only One In A Great While (when Its Hot Out) He Will Say His Heart Beats To Fast. He Runs A Resing Rate At 90 -110 Bpm. He Will Have The Mital V. Replaced Sometime In The Future. They Have Come A Long Way For Children With Chd In The Last 20 Years. Kids Are Living Longer And Having Many More Options. Hugs To All

[AuntG]

Hello all! I wanted to add my bit when I first saw this thread but wanted to wait until we had our clinic visit so I'd know what to report.

Good news! DD will not need a pacemaker anytime soon! Woo hoo!

Ok, so I'll back up a bit. My DD has Down syndrome and had her OHS at 3 months for ToF. Since then, we've kind of been on wait-n-see to determine if/when she'll need a pacemaker (heart block was a consequence of the ToF surgery).

Her resting heart rate can get as low as 60 (40's when she was sleeping according to the Holter monitor) but it is slowly starting to improve (now it runs about 80).

At 14 months, she is starting to scoot and crawl more each day, and now that I no longer check her pulse a dozen times a night, she sleeps well, eats well, and is the happiest baby I've ever had the pleasure to know!

And thanks for starting this thread, I've enjoyed reading everyone's posts.

[Jilian]

I'm so happy to find this thread!

DS2 was born at home last year and appeared healthy at birth. Around 10 days old he started coughing and the cough got worse. I could not get a second pedi appt for another week so I voiced my concerns to our HB MW and she came over to check him. She sent us to the ER and then later came to the ER when they wanted to send us home. DS was in congestive heart failure and transported to the local children's hospital and received emergency OHS at 15 days old. He has/had Total Amomolous Pulmonary Venous Return (TAPVR), a PFO and a PDA. He recoverd quickly and his heart is doing well today :

The issues we are facing now are: low weight and gross motor delays. He's working with an OT and I'm giving him lots of fatty foods. Other than that he's a healthy little guy. It amazes me how many other heart babies there are out there. I'm glad to "meet" some other heart mamas.

[hollytheteacher]

I'm so glad our heart thread is growing! It's so great to hear from all of you and get all the different perspectives!

I am meeting today with a women from the American Heart Association to see about setting up the chapter of Mended Little Hearts in my area.

I'm really excited about this and will definitely keep you all posted!

Nolan is really thriving. We feel so blessed and lucky! He is recently learning how to walk! He doesn't need to go back to the cardiologist until December! Which will make it 4 months since his last visit!! Our dr. is funny, he says, "Nolan is doing so great you get to see less of ME isn't that wonderful?!" haha

Also, Dopeydame, thank you for joining this thread!! I'm sure we will all have lots of questions for you along the way

A few I have are:

Did you ever feel "different" from other kids?
Were you bothered at all by your scar?
Were there any restrictions on playing sports/being active?

[Jilian]

Originally Posted by hollytheteacher

A few I have are:

Did you ever feel "different" from other kids?
Were you bothered at all by your scar?
Were there any restrictions on playing sports/being active?

Good questions! I have a few too...
Did your parents treat you differently or "baby" you at all?
What advice do you have for the mother of a baby with a CHD?
What can we do to best support our children?

[AuntG]

Hey, Holly, yea, we thought it was absolutely awesome when our cardiologist told us to come back in 6-8 months!! "Months? Did you mean months or weeks?" I asked.
MONTHS!
Wow!

Well, I wanted to add that my little gal has started noticing her scars. She has the big one, of course, but also one from a surgery on her gut. She bends over and carefully studies them, giving them a tug and then pushing, tugging, pushing...etc.
I guess one day she'll ask "why is this here?" and luckily I'll have photos and a diary to show her.

Anyone else's little ones noticing/asking about their scars?

[Jilian]

Evan is still only 15 mos so I don't think he really knows much about his scar. He does poke at his scar from the chest drain tube. That sticks out a bit and almost looks like a second belly button. He likes to push it like he pushes belly buttons. I'm nervous that one day he'll be self conscious of it. I'm proud of his scar; I feel like it is a badge of honor. It shows how amazingly strong his little body is. I hope he feels the same way when he's old enough to know it is there.

[hollytheteacher]

Originally Posted by Jilian

Evan is still only 15 mos so I don't think he really knows much about his scar. He does poke at his scar from the chest drain tube. That sticks out a bit and almost looks like a second belly button. He likes to push it like he pushes belly buttons. I'm nervous that one day he'll be self conscious of it. I'm proud of his scar; I feel like it is a badge of honor. It shows how amazingly strong his little body is. I hope he feels the same way when he's old enough to know it is there.

This is what i hope too! I remember once, a little bit after his surgery I was changing him at a diaper changing station in a bathroom of a local museam and he had had a poopy blow out so i had to completely undress him. Anyway, a little girl saw his scar (i think she was about 4) and said "I wonder how he got that booboo" to her mom as they were walking out and the mom replied "Maybe he got hurt when his mama wasn't paying attention" Which made me feel: I worry about comments like that as he gets older...

[veganone]

Originally Posted by hollytheteacher

This is what i hope too! I remember once, a little bit after his surgery I was changing him at a diaper changing station in a bathroom of a local museam and he had had a poopy blow out so i had to completely undress him. Anyway, a little girl saw his scar (i think she was about 4) and said "I wonder how he got that booboo" to her mom as they were walking out and the mom replied "Maybe he got hurt when his mama wasn't paying attention" Which made me feel: I worry about comments like that as he gets older...

That's upsetting - I'm sorry. I've seen a few heart scars and they look like surgical scars, not an injury. Plus, how plain rude!

[LauraLoo]

Originally Posted by hollytheteacher

This is what i hope too! I remember once, a little bit after his surgery I was changing him at a diaper changing station in a bathroom of a local museam and he had had a poopy blow out so i had to completely undress him. Anyway, a little girl saw his scar (i think she was about 4) and said "I wonder how he got that booboo" to her mom as they were walking out and the mom replied "Maybe he got hurt when his mama wasn't paying attention" Which made me feel: I worry about comments like that as he gets older...

My ds is 7, and isn't self-conscious about it at all. I'm sure that everyone notices - especially during the summer months when he goes shirtless, but I've never had a stranger make a comment like that (which is just RUDE, btw!)

I remember a male friend telling me that ds will one day have a lot of fun telling people about the "battle" he was in......and that he won.... Sometimes older men will say they have a zipper just like his -- of course, they've had heart surgery, too.